Post Twenty Nine. How A Cat Taught Me Just How Bad My ME Is.

I learned a lesson recently about how much my illness limits what I’m capable of, and I learned it in the most painful way possible.

For the last couple of years I have thought about getting a cat. I love cats. I haven’t had one since my childhood cat, who we’d had since she was a kitten, and died in December 1998, when I was eighteen. I’ve always expected that I would get another cat one day. The years that I lived in Edinburgh pre-ME I only lived in flats with no direct access to a garden, and I didn’t want an indoor cat, but since I moved back to Peebles, in a house with a garden, I began thinking again about getting a cat.

I’ve gone through the same pattern for the last couple of years. I would decide it was time to get a cat, I would search the local cat rescue websites, I’d fall for a particular cat and I’d get all excited. But then reality would kick in, and I would question how sensible it would be, given how incapacitated I am by my ME, and I live alone. I’d eventually decide against it, until the next time. This has been going on for at least two years.

Well, it turns out that all the reasons that had stopped me from getting a cat, were correct, and I discovered this in the most difficult way.

More recently, due to the isolation I live in, and how lonely it is, I began to focus on the company a cat would give me. So many people said it would be so good for me, that having a cat would be therapeutic, and I decided to trust that, and just do it.

A couple of weeks ago my mum took me to visit a local cat rescue centre. I told them that ideally I wanted an older cat, partly because it would likely be less active and just want to sleep and cuddle, and be as low maintenance as possible, and partly because I felt sorry for the older cats that no one else wanted. The first cat they introduced me to was fourteen years old, and had been at the shelter for over a year, longer than any of their other cats. That is what sold me, I felt so bad for her, being overlooked for over a year because of her age. She was really small and so pretty. She was also grey and white, the same as my old cat. Initially I had decided against a grey and white cat because I didn’t want to feel like I was getting a replacement cat. But she was the best option of all the cats they had, and I wanted to give her a lovely forever home for her old age. I told them she was the one, and we arranged for me and mum to collect her the following week.

The day after I met her I started to have doubts. The same thoughts that had stopped me from getting a cat previously were filling my head, and my gut was telling me not to go through with it, but I foolishly decided to ignore that. Everyone else was so sure this would be so good for me and my mental health, that I decided to just focus on the excitement of having a cat for company. The excitement was genuine, I really love cats, but so were the doubts. I felt regret almost immediately after my mum and I went to collect her.

She did not enjoy the car journey home, both puking and pooing in the cat carrier. When we arrived home and I opened the carrier she headed straight for the box I had prepared for her, with warm woollen blankets and a hole cut out the side, so she would have a safe place to be when she wanted to hide. She didn’t stay in the box for long, after a few minutes she ventured out and ate some biscuits, then she set about exploring my bedroom. I had been told that when re-homing a cat it’s best to keep them in one room for a while, to help them adjust, and she would let me know when she wanted to explore further. Well she let me know almost immediately. I was expecting her to stay in my bedroom for a few days at least, but she wanted out within a couple of hours. It was fascinating watching her explore, she was very thorough. First she had a wander around the bathroom, looking back at me every now and then, then she headed upstairs to my living room/kitchen. She did the cutest thing when she wanted to see something higher up, standing up on her back legs like a human. She gave herself, and me, quite a fright when she tried to jump up the defunct chimney and slid back down crashing onto the top of the fake wood burning stove sending candles and chimney dust everywhere. I quickly realised that this was a remarkably active senior cat, she was a kitten at heart, not an old lady.

I really enjoyed watching her investigate my home, and I loved that she was clearly becoming comfortable with me. I had been told that she had a tendency to swipe at people, which she did once, and there were a couple of hisses, but generally she was sweet and playful and she kept headbutting me in that lovely way that cats do when they want attention and head scratches. She had the loudest purr and the deepest meow I’ve ever heard, it was not a sound I was expecting to come out of such a dainty and feminine looking cat. One of the loveliest things about her was her desire to be near me, she followed me everywhere. But despite how sweet and lovable she was, I also felt weirdly scared, and really really anxious. I was feeling the enormity of this new responsibility that I had for a another living creature. I began to feel incredibly overwhelmed.

I need to rest, a lot. Most of my day is spent resting and moving as little as possible in order to preserve what little energy I have, so that I can do essential tasks like eat, brush my teeth, go to the toilet, take my medications and attend my medical and counselling appointments. But now I was constantly having to get up off the sofa to remove her from places she shouldn’t be, rescue her from places she got stuck and investigate loud noises coming from the other room, thinking I was going to find her injured and/or the room in chaos.

She slept for an hour or so in the evening, but she was awake all night. Awake and very energetic. Due to the noise she was making – crashes, bangs and wallops, and meowing very loudly, I barely slept either. Again I kept having to get out of bed to tend to her. She’d get herself stuck and meow until I rescued her, or she’d be bounding around the living room upstairs from my bedroom, and even with ear plugs in, I heard her almost every movement. She wasn’t being naughty, just very eager and excitable in her explorations. Perhaps naively, I hadn’t anticipated the exertion it would require from me. This constant having to get up and down to deal with her, which of course was on top of all the routine stuff involving feeding her, dealing with the litter tray (until I could let her go outside) and playing with her. It was too much physical activity for me.

In the morning, after practically no sleep, I really began questioning whether I had done the right thing. I did know that this additional activity required on my part would reduce as she settled down into a routine, began to sleep through the night and have the freedom to get outside. I also knew it would take time for her to settle, but I completely misjudged my ability to cope with it, well, my ME’s ability. I realised that I just would not be able to cope with the few weeks it would take her to settle. Sleep is never restorative for me, but getting almost no sleep has a massive impact on my body and symptoms over the following days. Given how dreadful I felt after that one night, I knew I couldn’t go on like that. I had made a mistake, and I began to think I should return her to the shelter.

I spoke to a few people about it, and most had very good arguments for keeping her, telling me that this settling in period would not last forever. But these people don’t have ME, they don’t know what it is like to (attempt to) function on an energy/activity level that has decreased to anywhere between 3-10%, occasionally creeping up to 15% on a “good” day. She was a lovely wee cat, and was not to blame at all, but I realised that if she stayed, I would crash, hard. I’m not back to my pre-Iceland level of ME, and I feel like I was only just beginning to recover from the ten weeks it took me to complete my PIP form and the summer heatwave. I simply cannot cope with another major crash.

There was also something that I just hadn’t considered at all. On less good days, sometimes even on normal days, I struggle with any movement within my vicinity. It’s why, when mum comes over, for example, I can’t cope with her knitting while we chat, or just while I rest, because the movement of her knitting gives me vertigo-like symptoms. On my worst days, actually, even on my normal days, I struggle to do things like wash my dishes, and sometimes I can’t even cope with my mum washing my dishes for me, because of the movement and the noise. It was the same with the cat. After my sleepless night, just the movement of her grooming herself, out the corner of my eye, made me feel lightheaded and dizzy. Also the smell of her cat food made me feel nauseous, and in such a small house, I could smell it from every room. I’ve never been bothered by the smell of cat food before, but my ME makes me hypersensitive to various things – medications, noise, light, temperature, alcohol, food, and now it turns out, smells.

It was the most difficult and painful decision, but after long talks with my mum, sisters and the shelter, I decided it was best to return her. I could barely talk while I was on the phone to the shelter, they were nice about it, but I felt terrible, and was sobbing throughout the call. I was sure they were going to add me to some international cat re-homing blacklist, and maybe they have. I donated all the cat food and litter I had bought to the shelter, not that this helped to ease my conscience at all.

My sister came round with my niece and they took her back that afternoon. Unfortunately it was another puke and poo inducing car journey for her, and I hate that I put her through that. I felt like a monster as I put her back in her carrier, which, from her protestations, she clearly remembered from the previous day. I also hate that after a year in the shelter, I gave her a taste of a ‘normal’ life, she seemed happy in my home, then I took it away from her. I currently feel like the worst person in the world.

I hope that by returning her after twenty four hours, as opposed to waiting a few weeks then returning her, she won’t remember me. Cats first become attached to places, as opposed to people, so I know/hope she won’t have become attached to me, so won’t miss me. It’s not like she was aware that I had intended to keep her forever, for all she knew it was only ever going to be a day/overnight trip, like an extended vet visit, but with no vet, a chimney to explore and lots of toys. I really miss her, she was so sweet and was great and entertaining company. She will make a lovely pet for someone, if they can just see past her age.

Maybe if I already had a cat before getting ME, and it was with me from the beginning of my illness, I would be able to cope with it far better. But I cannot cope with the settling in period, and there’s no way around that. I so wish I had trusted my instincts, and not done it. I let myself get swayed by the opinions of other people. I guess the one good thing about this whole thing is that I do know now for sure that I was right and that I can trust my instincts when it comes to what I can handle. But I wish it hadn’t come at the expense of this wee cat. I let her down, and I let the people at the shelter down, they were so happy to see her be re-homed. I feel absolutely sick about what I put her through. I also let myself fall for this cat, and now I don’t have her. My house feels empty, and so do I.

I might try again one day, but only if my ME has improved significantly, and only once I’m living in a larger house with a spare bedroom that can contain the cat during the settling in period. I will not put another cat, or me, through this again, not unless I am absolutely 100% sure about it. After my sleepless night with the cat here, and twenty four hours without eating due to my anxiety, I slept twelve hours the following night. I felt relieved the next day, but also really sad, because I missed her, I still do. I wanted to keep her so much. Even if I’m well enough one day to try again, it won’t be the same cat, and she really was something very special.

This has been yet another reminder of just how unwell I am and how much ME is depriving me of. Usually when I test the waters and overdo it, the impact is only felt by me, but this time it wasn’t just me who was affected, an innocent cat was too, and the guilt I feel for that is enormous.

Do you want a cat?

If anyone reading this (who can easily get to the Edinburgh area) has been thinking of re-homing a rescue cat, and likes the sound of this wee cat, please get in contact, which you can do here. I can send you a photo and let you know where you can find her. But please be sure you can absolutely give her a home for life. Please be a better cat mum or dad than I am.

Also, please, if your first instinct is to try and give me after-the-fact advice on how I should have handled it, please don’t, that is not helpful. It’s done, I made the right decision, I feel utterly crap about it, but I don’t regret it.

 

Update! After I returned her, the shelter made her their ‘featured cat’ on their website. This extra exposure worked and she has now found her new home!

 

NEWS

Third Force News. If the government won’t take ME seriously who will?

http://thirdforcenews.org.uk/blogs/if-the-government-wont-take-me-seriously-who-will

BBC News. ‘My robot makes me feel like I haven’t been forgotten’

https://www.bbc.co.uk/news/business-45332710

Health Rising. “The Great Chronic Fatigue Syndrome Community Gene Study” Breaks New Ground

https://www.healthrising.org/blog/2018/08/31/the-great-chronic-fatigue-syndrome-community-gene-breaks-new-ground/

Simmaron Research. Autoimmune Model Proposes Chronic Fatigue Syndrome (ME/CFS) Begins in the Gut

https://sable.madmimi.com/c/16005?id=2664349.9251.1.afed89af2c5944b820ed11f96d038343

Health Rising. Mission Accomplished! (????) Feds Terminate the Federal Advisory Committee on Chronic Fatigue Syndrome (ME/CFS)

https://www.healthrising.org/blog/2018/09/09/cfsac-termination-chronic-fatigue-syndrome/

CommonSpace. SNP MP brands UK Government ‘reckless and heartless’ as figures reveal nearly £200m spent fighting disability benefit appeals

https://www.commonspace.scot/articles/13186/snp-mp-brands-uk-government-reckless-and-heartless-figures-reveal-nearly-200m-spent

Chronic Illness Inclusion Project. It’s not ME, it’s you – can the chronically ill embrace the social model?

https://inclusionproject.org.uk/social-model/its-not-me-its-you/

Northwest Functional Neurology. Netflix “Afflicted” Ep. 2 Doctor Speaks Out

http://northwestfunctionalneurology.com/netflix-afflicted-doctor-speaks-out/

The Guardian. Sorry, Netflix: we don’t need another freak show

https://www.theguardian.com/society/commentisfree/2018/sep/18/sorry-netflix-we-dont-need-another-freak-show

Medium. Open Letter to Netflix Regarding the “Afflicted” Docuseries 

https://medium.com/@afflicted/open-letter-to-netflix-regarding-the-afflicted-docuseries-d2b5263c9eb6

Post Twenty Eight. Disbelief About The ‘Afflicted’.

When you have a chronic illness, that’s largely invisible (both the symptoms and the people who have it), difficult to diagnose, not fully understood by science and surrounded by misunderstandings and misinformation about what it actually is and how it affects people, you encounter a lot of disbelief. From friends, family, employers, doctors, the government, the media, and the general public. People with ME seem to have drawn the short straw. While definitely not the only invisible illness to be on the receiving end of such disbelief, ME is plagued by misconceptions, and as a group we are hugely marginalised and stigmatised.

I’m lucky, my family believe me. Isn’t that shocking? That I consider myself lucky because my family believe that the illness I was diagnosed with is real?! Many people are not so lucky. My friends, the ones who remain in contact, believe me (although there was the odd ‘yuppie flu’ comment when I first told people), the ones who have drifted away, I guess they don’t? While I was still working, my employer believed me. The government simultaneously believe me and don’t believe me. They believed me when I applied for ESA (Employment Support Allowance) in the summer of 2015, but they didn’t believe me a couple of months later when I applied for PIP (Personal Independent Payments), for which I am now re-applying – hopefully they’ll believe me this time. Most doctors I’ve encountered haven’t believed me, it took me I think, ten different GP’s before I found my current GP – who is great, and believes me. As for consultants, very strangely, the specialists I saw while I still lived in Edinburgh, on the whole did not believe me, but the specialists I’ve seen in the Borders, on the whole, while not particularly knowledgeable, have believed me. Note, these are not ME specialists – there’s no such thing, not around here anyway  – these are the specialists I’ve seen for individual symptoms (gynaecology, urology, neurology and ENT). As for the media, it’s a mixed bag, I have seen a small handful of decently researched, accurate and sympathetic articles in recent months. Some articles contain some truth, but also a lot of misinformation, which really just cancels out all of the good stuff. Then there are the articles that are downright inaccurate, offensive and full of lies and outdated information. I don’t have much interaction with the general public due to being mainly house bound, but I do see their comments on the internet, and that is what this post is mainly about.

I have seen few illnesses be on the receiving end of so much vitriol, disbelief and mockery as I have ME. Every online article about ME will have comments from people who who don’t believe ME is real. The internet is full of trolls, I know that, and I know I shouldn’t take notice. But it’s hard. While I don’t feel I am defined solely by my illness, ME is certainly a very important, though unwelcome, aspect of my life. In a way, it does define my life and my ability to live it. Every single thing I do, every action, every activity, is determined by my ME, I cannot escape it, ever. Knowing that there are so many people out there who deny my existence and think it’s an excuse for laziness, it’s beyond hurtful. I’m suffering enough, I could do without having to use energy to defend myself. If these people were only found in the comments sections on the internet it wouldn’t matter so much. But these people are also doctors who don’t take their patients seriously, government workers who decide whether someone they’ve never met is eligible for disability benefits or not, MP’s who won’t stand up for their constituents and demand sufficient funding for biomedical research (my MP said it would be ‘inappropriate’ for him to interfere). Having a disabling chronic multi-system neuro-immune illness is bad enough, but because the illness I have is ME, I also have this additional layer of distress to cope with. Something that people with other illnesses don’t have. I wish I had one of those illnesses.

I had a conversation with someone on Twitter a few days ago, she has MS but had initially been misdiagnosed with ME for eight years…

“I have now been diagnosed with MS but was told I had ME for 8 years before…ME is a crappy illness as the stigma still seems to be there. I feel lucky as getting an MS diagnosis has made things easier in the medical world. In the past I’d been told “to pull my socks up” and also asked if I could give reasons for not wanting to get better.”

MS actually used to be where ME is today, in terms of perception, but then the CAT scan was invented, and suddenly doctors could ‘see’ it, and they began to take the illness, and the people who have it, seriously. We can’t see ME yet, therefore, for many, it must be “all in our heads”.

The disbelief surrounding ME is the reason why we have no treatments, no cure and no support. The government won’t invest in biomedical research for an illness, that as far as they’re concerned, is ‘all in our heads’. They haven’t learned from experience (MS), and they don’t appear to care that current research and evidence proves definitively that ME is not a psychiatric condition. Why don’t they care? Why are we so unimportant? Why is my life not worthy of saving? For me, the disbelief of the illness that has stolen my life from me, feels like the worst form of rejection a person can experience. I feel like I simply don’t matter. And it’s not just me, there are approximately 21,000 people with ME in Scotland, 250,000 in the UK, and 17 million worldwide.

When you are diagnosed with ME you are on your own – no treatment plans, no specialists and no guidance. We are diagnosed then sent away to fend for ourselves. I feel like we are soldiers that have been sent out to the battlefield with no training, lost, scared and alone. So we try to move forward, but without knowing what to do for the best. Do we rest? Do we exercise? Do we monitor our heart rates? Do we change our diet? What do we do to get better? So we immerse ourselves in research, and we realise that we have to become our own experts, no one else is going to help us here. The more we dig, the more we realise that we don’t just have an illness to deal with, we have a world full of people who are out to get us, and who are happy to let us fall down and die, and they’ll laugh as we do.

I have been collecting internet comments about ME, and some about disability in general, by the way of screenshots. They are all from random members of the public, but many people with ME do hear this crap from their doctors, their employers, family and friends, I’m in many ME support groups and forums, I hear their stories. When I tell people about the level of disbelief thrown in our direction I am, funnily enough, often disbelieved. I expect that’s because the people I’m telling, are decent and have brains. They do believe in ME and they can’t understand why anyone wouldn’t believe, I mean, the evidence is kind of undeniable, anyway, here’s some proof, and not that they deserve it, but I’ve hidden their names/usernames for their anonymity.

 

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Aren’t people delightful!

The ‘image’ of ME has moved forward somewhat recently. Jennifer Brea’s film Unrest, the work of ME charities, the advocacy group MEAction and the MillionsMissing protests, and people like me who are blogging about our own experiences, we all help to educate people about ME. Unfortunately, something has come along recently that has the power to undo the progress we have made. A documentary series, created by DocShop Productions for Netflix, called “Afflicted”.

Ok, where to start. This is what was promised during the casting process for Afflicted…

“I am working on a documentary series for Netflix that explores the experiences of individuals suffering from chronic or unexplained illnesses. I’m looking for people willing to share their stories on-camera as part of the series. Our intention is to look at these experiences through a compassionate lens and give voice to those who are struggling for answers and acceptance.”

I should make it clear that I have not, and will not watch the series, so this is not a review. I started to, I made it ten minutes, but I stopped. I didn’t want to add to the viewing figures, and I knew, based on what I’d heard from the participants, that it would upset me too much. The day it aired on Netflix I saw one of the participants, Jamison, who has ME, voicing his disappointment, he stated that he felt he had been misled. I have followed his blog for a while, and I have no reason to disbelieve what he, or the other participants, have shared about their experience. All my knowledge about the series comes directly from the people who are in it and what I have heard from other viewers.

So, the participants of the series believed they were taking part in a project that would show their lives and struggles with chronic illness through a “compassionate lens”. Unfortunately, that is not what was portrayed in the final product. The producers went in a different direction, they deliberately went with a narrative that would allow viewers to believe the participants were neurotic hypochondriacs, suffering from psychiatric disorders, and not the physical illnesses that they were diagnosed with. They wanted the audience to question their mental health and doubt the validity of these people’s illnesses, and it worked. Here is a selection of what the general public think about Afflicted, and the people in it…

 

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The people responsible for Afflicted turned their subjects into a joke. They had the material to create a sympathetic and factual documentary, but they deliberately omitted this footage, to create what ended up being “reality TV”. They took vulnerable and desperately ill people and turned them into a sideshow act reminiscent of 19th Century freak shows. I thought we were past disabled people being exhibited to the public as ‘entertainment’, but apparently not. Afflicted wanted the viewers to question if these people were suffering from psychosomatic illnesses, but they didn’t share with the audience any of the medical information that was provided (by the participants) that would allow them to answer those questions accurately. They held back on the facts and the science while leading viewers to believe they had all the information they needed to make informed decisions about these people, the decisions being, “these people have mental problems”. They deliberately played up to the doubt that people already hold about invisible illnesses. Please note, there is no shame whatsoever in having ‘mental problems’, I have them myself, it’s not uncommon for chronic illness to affect a person’s mental health, but these people’s primary conditions are not psychiatric in origin.

The footage and the interviews with the participants and their families were twisted and manipulated. They sneakily edited, chopped up and spliced together their dialogue, to have them say things that in reality, they did not say, they basically created a work of fiction, but presented it as fact. The production of this series was so dishonest, they fed lies to their audience, knowing they would lap it up. They told viewers that they had offered one of the women a treatment worth $25,000, and she had turned it down, for no good reason. This led people to think she didn’t want to get better, that she was revelling in her illness and simply loving the attention. In actual fact, the series didn’t include the bit where she sought advice from her medical doctors, who told her that treatment would actually be dangerous for her, and her specific condition, and they advised she not go through with it, that is why she turned it down.

Viewers were led to believe that these people have spent an inordinate amount of time and money pursuing alternative treatments, for which they have received a lot of scrutiny, you know, given they had apparently turned down actual medical treatment. But the participant’s own scepticism of some of these treatments, which were at the suggestion of the production company, was edited out. Many of these people have concrete diagnoses and test results, but these were also excluded. So much of the criticism they have recived since Afflicted aired has been based on the narrative that they, the audience, were fed, that their problems are “all in their heads”, but they wouldn’t accept that they needed mental help. What wasn’t told, was that most of them have been referred to psychiatrists or psychologists at some point since they’ve been ill, and none of them have been told that their physical symptoms have a psychiatric cause. Many of them have even, in desperation, tried psychiatric interventions/medications, which did not work, they are still ill. They even had to undergo (and pass) a psychiatric evaluation in order to participate in the show was, which of course was conveniently left out.

During the filming process the crew attended a ME symposium and interviewed leading ME scientists, but these were omitted from the final product. Rather than have their actual doctors on screen, they had a random psychiatrist, who had never met any of these people, and had no knowledge of, or expertise in their actual diagnosis’s. He was there purely to speculate about what was making them so unwell and aid the sensationalist narrative.

“They don’t want to be sick, but in an attempt to solve the problem, they’ve taken on the sick role and they’ve crowded out everything else in their life.” Something that psychiatrist man said.

This series has done unspeakable damage to the chronic illness community, not to mention the people who actually participated in the series, who have since been subject to abuse, harassment and even death threats. People with invisible illnesses already face so much judgement and disbelief, we could do without the media aiding this idea that we only ‘think’ we are unwell but actually have psychiatric problems. Would we ever see a ‘documentary’ about cancer, in which the audience is encouraged to question whether they are really ill or not? Of course not, people would be outraged if that happened. Afflicted was a sick game, it was entertainment for able-bodied/healthy people to guess what the ‘freaks’ ailments were, and they had a lot of fun doing so.

“I think that they seem to enjoy being cared for, and doted on. It gives them purpose and meaning. Folks love to play victim.” Random review from some idiot.

I’ve seen many reviews go along the same lines as this. This couldn’t be further from the truth. I was healthy, active, fit and independent, I had a great job, was travelling and life was good. Now, I’m a thirty eight year old who is dependant on her mother. My mum could tell you how much I dislike asking for and accepting help (although I am of course grateful). When I tell her that I worry about being a burden, she tells me, that if anything, I don’t accept enough help. How can anyone think that any of us enjoy this life? I get no sense of purpose or meaning from having ME, what I do about it gives me a sense of purpose (this blog), but I absolutely hate, with a passion, being ‘cared for’. And I am no victim, thank you very much!

Since Afflicted has aired, some of the participants have written about their experience, I have shared these at the end of the post. Please read their stories, especially if you have watched it, they deserve to have their truth heard.

This whole thing with Afflicted had taught me a valuable lesson. I was recently approached myself to potentially take part in a TV documentary. In May I was contacted by someone who said he worked at Wild Pictures, a UK based production company, he told me he had read my blog and wanted to speak to me regarding an upcoming documentary they were making for the BBC. I happened to have written about the subject matter (assisted/accompanied suicide and my Dignitas membership) in my blog. We corresponded via email for a bit and were arranging a time have a Skype chat, I gave him some days in the following week I could speak, but I never heard from him again. I’ve emailed a couple of times since and haven’t heard back, so I guess it’s not happening.

It’s fine if they don’t want me and my story as part of the documentary, it would have been a massive, and scary, undertaking for me, I don’t even like having my photo taken. It will also be better for my health to not take part. I thought of it however as an opportunity to raise awareness about my ME, on a massive scale, given it would be on the 9pm slot on BBC One. I imagined people watching, seeing a woman with ME, and hearing that it prompted her to join Dignitas, “wow”, they might think, “ME is obviously a more serious illness than I realised”. So I was disappointed when I realised it wouldn’t happen, a tad relieved too, but mainly disappointed.

I was also upset by this researcher’s lack of consideration, and manners. I’ve never done TV stuff before, so maybe this is normal behaviour, but it worries me that TV researchers feel it’s ok to seek out vulnerable people, who they know to be very unwell, let them feel that they are being heard, offer them an opportunity, and then just drop them, with no explanation. He could at least have had the consideration to tell me I wasn’t needed, rather than raise my hopes and then just cut off communication.

It has also crossed my mind that this could have been a scam. In the original email I received, via my blog, the researcher had spelled the presenters name (Miriam Margolyes) incorrectly, twice, something that my sister noticed and thought was a bit of a red flag. So she may have been right. But shortly after this I also received an email from Dignitas themselves (as a member I’m on their mailing list), they had also been contacted by Wild Pictures looking for people to contribute to the project. That made me think it was legit, but honestly I don’t know.

Given how the participants were misrepresented on Afflicted, I think I may have had a lucky escape here. I am happy to speak about my feelings on this subject to anyone who wants to learn, but I’m not willing to be messed around and misled and I am not willing to let anyone waste my time or my limited energy. How the researchers treat potential interviewees is likely a reflection of how they treat the people who are selected to take part, and it’s not something I want to put myself through. I don’t think I’d cope well with having no control over the final edit, or how I would be portrayed. If they misled me as the Afflicted subjects were, and I was then subject to malicious internet comments, I would be devastated, and I’m sure it would be pretty damaging to my mental health. I now realise that I cannot trust anyone to tell my story, but me.

Please read the Afflicted participants stories for yourselves.

“We were all told that we would be participating in a project that would show our lives and our struggles with illness through a “compassionate lens.” We participated because our diagnoses are misunderstood and stigmatized. We thought that revealing some of the most intimate moments of our lives would lead to greater public understanding. We hoped that with it might come investment in research to find biomarkers and better treatments. We never fathomed that we were participating in a project that would instead expose us and our communities to further ridicule and disbelief.”

The Truth Behind Netflix’s ‘Afflicted’ – A group blog post by some of the subjects of Afflicted

Their individual stories. 

Jamison

Jesse and Bekah

Nick and Bekah

Jake

Pilar

Jill

Janine

What other people are saying about Afflicted. (I will update this as new articles are published)

The Mighty. Why the Netflix Docuseries ‘Afflicted’ Is Harmful for the Chronic Illness Community.

Patheos. 3 Ways Netflix’s “Afflicted” Hurts People with Chronic Illness.

MEAction. Netflix’s docuseries “Afflicted” exploits and stigmatizes chronic illness.

After M.E. After The Afflicted Freak Show.

Consumer News. Netflix says it won’t remove documentary about chronically ill that participants say led to cyber-bullying.

Nylon. The Cast Of ‘Afflicted’ On Netflix’s Misrepresentation Of Chronic Illnesses.

The Hollywood Reporter. ‘Afflicted’ Executive Producer Responds to Controversy, Protest Letter Signed by Lena Dunham, Monica Lewinsky.

Netflix Hit With Defamation Lawsuit by the Subjects of the Docuseries ‘Afflicted’.

 

NEWS 

Health Rising. The Cortene Chronic Fatigue Syndrome (ME/CFS) Drug Trial Begins.

https://www.healthrising.org/blog/2018/07/14/cortene-chronic-fatigue-syndrome-me-cfs-drug-trial-begins/

ME/CFS Research Review. The microbiome hypothesis: Lipkin’s collaborative, part 1.

https://mecfsresearchreview.me/2018/07/17/the-microbiome-hypothesis-dr-ian-lipkins-collaborative-part-1/

ME/CFS Research Review. The heart of ME/CFS? Lipkin’s Collaborative probes the impact of exertion, part 2.

https://mecfsresearchreview.me/2018/08/14/the-heart-of-me-cfs-lipkins-collaborative-probes-the-impact-of-exertion/

Stat. The medical community is changing its mind on chronic fatigue syndrome. Why aren’t insurers?

https://www.statnews.com/2018/07/19/chronic-fatigue-syndrome-insurers-disability/

Belfast Telegraph. Doctors ‘do more harm than good’ sending ME patients to gym.

https://amp.belfasttelegraph.co.uk/news/health/doctors-do-more-harm-than-good-sending-me-patients-to-gym-37129397.html?__twitter_impression=true

Nature. Insights into myalgic encephalomyelitis/chronic fatigue syndrome phenotypes through comprehensive metabolomics.

https://www.nature.com/articles/s41598-018-28477-9

Sci-Hub. Are ME/CFS Patient Organizations Militant? Patient Protest in a Medical Controversy.

http://sci-hub.tw/10.1007/s11673-018-9866-5http://sci-hub.tw/10.1007/s11673-018-9866-5

Health Rising. New Harvard Chronic Fatigue Syndrome (ME/CFS) Research Center Fulfills Crucial Need.

https://www.healthrising.org/blog/2018/07/08/new-harvard-chronic-fatigue-syndrome-me-cfs-research-center-fulfills-crucial-need/

ScienceDaily. Insights from metabolites get us closer to a test for chronic fatigue syndrome

https://www.sciencedaily.com/releases/2018/07/180709120146.htm

MEAction. Denmark has some recommendations for ME…and they’re pretty awful.

https://www.meaction.net/2018/07/09/denmark-has-some-new-recommendations-for-me-and-its-pretty-awful/

Bateman Horne Centre. New Insights into Exercise Intolerance and Medication.

http://batemanhornecenter.org/systrom_cpetresearch/

HuffPost. Having ME Is Like Being Permanently Encased In A Suit Of Armour.

https://www.huffingtonpost.co.uk/entry/myalgic-encephalomyelitis-how-it-feels_uk_5b61badbe4b0fd5c73d524cc

InsideSources. The Monster Disease Medical Schools Don’t Mention.

https://www.insidesources.com/monster-disease-medical-schools-dont-mention/

Simmaron Research. System Reset? Study Suggests Pro-Inflammatory / Autoimmune Reset Occurred in Chronic Fatigue Syndrome (ME/CFS).

http://simmaronresearch.com/2018/08/system-reset-chronic-fatigue-syndrome-mecfs/

HuffPost. It Seems Impossible That People Don’t Believe Having ME Is A Serious Illness.

https://www.huffingtonpost.co.uk/entry/myalgic-encephalomyelitis-chronic-fatigue-syndrom_uk_5b6ac35ee4b0fd5c73df30a9

CNN. Millions suffer from an invisible disease: My ME/CFS story.

https://edition.cnn.com/2018/08/08/health/iyw-ryan-me-cfs-story/index.html

Health Rising. The RCCX Hypothesis: Could It Help Explain Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia and other Diseases?

https://www.healthrising.org/blog/2018/08/09/rccx-chronic-fatigue-fibromyalgia-eds-pots/

Disability News Service. MPs have won praise after calling on the government to ensure disabled people finally secure equality in the protection they are offered by hate crime laws.

https://www.disabilitynewsservice.com/mps-win-praise-for-online-abuse-proposals/

The Pool. The activist helping remove the stigma surrounding wheelchair users who can walk.

https://www.the-pool.com/news-views/latest-news/2018/33/youtuber-annie-segarra-is-helping-remove-the-stigma-surrounding-wheelchair-users-who-can-walk

Questioning Answers. On the question of suicide risk and chronic fatigue syndrome / myalgic encephalomyelitis continued.

https://questioning-answers.blogspot.com/2018/08/on-question-of-suicide-risk-and-MECFS-continued.html

ProHealth. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-Metabolic Disease Or Disturbed Homeostasis? Study proposes that stimulation of hypothalamic mast cells activates microglia leading to focal inflammation in the brain.

https://www.prohealth.com/library/myalgic-encephalomyelitis-chronic-fatigue-syndrome-metabolic-disease-disturbed-homeostasis-84606

The Mirror. ‘I can barely walk and I’m bed-bound 23 hours a day – M.E. nearly killed me’.

https://www.mirror.co.uk/news/real-life-stories/chronic-fatigue-syndrome-left-bedbound-13091318

The Canary. The UK’s General Medical Council just threw 250,000 disabled people under a bus.

https://www.thecanary.co/opinion/2018/08/22/the-uks-general-medical-council-just-threw-250000-disabled-people-under-a-bus/

ME/CFS Research Review. Significant association of DNA variants with self-reported ME/CFS. 

https://mecfsresearchreview.me/2018/08/28/significant-association-of-dna-variants-with-self-reported-me-cfs/

Welfare Weekly. Scottish government seek ‘anti-terror’ powers to spy on benefit claimants. The powers are typically reserved for protecting the public against terrorism and serious crime.

https://welfareweekly.com/scottish-government-seeks-anti-terror-powers-to-spy-on-benefit-claimants/

TheMindMap. Belle and Sebastian – Going Through The Emotions. Interview with Stuart Murdoch. 

https://themindmap.co.uk/interviews/belle-and-sebastian-going-through-the-emotions/

ABC. ‘Your disease is real’: Breakthrough in diagnosis of chronic fatigue syndrome.

http://www.abc.net.au/triplej/programs/hack/breakthrough-in-diagnosis-of-chronic-fatigue-syndrome/10188210

Post Twenty Seven. No, I’m Not Tired.

The ME Association was recently asked by the media to compile a piece describing the difference between having ME and just feeling tired all the time. Given the frustratingly common misconception that ME is ‘feeling tired’, this of course resulted in a lively discussion on their Facebook page, and it prompted me to want to write more about it. I’ve lost count of how many times I’ve written in my blog that ME is not ‘feeling tired’, yet some people still believe this to be the case.

I’ve had ME since 2014, and I had thirty four healthy years before I had ME. During those thirty four years, sometimes I felt tired, sometimes I felt absolutely shattered, and I remember what it feels like. I think people forget this, that I haven’t always had ME, that I used to be healthy, and like everyone, I experienced feeling tired from time to time. I know, with absolute certainty, that what I feel now, is not the same. My pre-ME tiredness was usually a result of a really busy and demanding day, a bout of insomnia, after a late night out with little sleep, or jet lag. I would feel sleepy, I would yawn, sometimes I would struggle to keep my eyes open, I’d find myself dropping off on the bus home from work, waking up every time my head fell forward like a nodding dog.

Since having ME I don’t yawn anymore than I used to, in fact I think I yawn less frequently that I ever did pre-ME, and I rarely feel so tired that I can’t keep my eyes open. I actually find myself missing that feeling of being tired after a really busy and productive day. That wonderful and satisfying feeling of falling into a cosy bed, finally being able to lie down, sleep and recharge. I don’t have that anymore, because ME is not synonymous with sleeping. When I go to bed I simply hope that I’ll actually get some sleep, and that it won’t be too disturbed, I know it won’t be quality sleep, and I know that I won’t wake up feeling refreshed.

Being tired all the time is rough. But, despite how tired (healthy) people get, they can still function, they can recharge their batteries through sleep, they can wake up feeling refreshed, and while they might still feel tired, or groggy, they are physically able to do their day all over again. When I felt tired as a healthy person, I could always push through it too. I could give myself a temporary boost with caffeine, a splash of cold water on my face, I could take a catnap if I had the time, on a night out a shot of tequila worked wonders at waking me up! Tiredness never prevented me from being able to work, or being able to wash myself, or from socialising, or doing my grocery shopping or household tasks, or anything I needed to do in order to live a full, happy and ‘normal’ life. Sometimes motivation and laziness would prevent me from doing some of those household tasks in a timely manner, but never tiredness.

With ME, I do get exhausted, but it’s unlike anything I felt before I had ME. It’s not an exhaustion that makes me yawn, or feel sleepy, it’s more like my body is shutting down, and I feel it with everything I do. The ‘tiredness’ that people think I have, is actually a pathological inability to produce energy on demand at a cellular level. We know this to be true, research has found immune cells taken from the blood of people with ME show clear signs of low energy production. This manifests as a severe lack of strength and stamina, an extreme physical and mental weakness. It’s my muscles, my limbs and my brain, my entire body, not being able to summon the energy I need to complete normal everyday tasks. It means that everything I do, and I mean quite literally EVERY SINGLE THING requires so much more effort than it did before ME – everything I do just sucks all of the energy out of me. Every movement that my body makes, every word that I speak, every thought that I think – my body uses more energy to achieve just a fraction of these activities than a healthy body does, and my body has less energy to begin with. While a healthy person may need to run a marathon to feel like this, I just need to be alive.

This is how I try to explain it to a healthy person. Think about how your body felt after the hardest most physically draining physical activity you’ve ever done, whether an exercise class or, like I say above, a marathon – my body can feel like that after having a bath, or attending a GP appointment, or washing my dishes. Think about how fried your brain felt after working on your university dissertation nights on end, or your tax return, or a really demanding week at work – mine can feel like that after reading one short news article, or writing one email, or replying to a text message. Some days are easier than others, some days I can barely function, I can’t walk, or use my hands, or watch TV, but other days I can cook for myself and write this blog. All the things that I could do pre-ME, that were once so easy, that I could do without a second thought, are now mammoth feats of endurance.

These days I spend roughly fourteen hours per day in bed, and the other ten on the sofa. When I’m on the sofa, I usually have my phone on the coffee table within reaching distance. Sometimes, when I get a text or whatever, I reach out to pick it up, but my arm doesn’t make it and it drops down to the ground, just dangling off the edge of my sofa with my hand brushing the floor, like a rag doll. I can be lying in bed in the morning and someone knocks on my door, but I don’t have the strength to lift myself out of bed, it’s like I’m paralysed, so I have no choice but to lie there and ignore them, feeling incredibly rude. I get an email, I can read it over and over, but I can’t process or absorb the content, it feels like my brain is shutting down. When I do eventually manage to understand it, whether minutes, hours or days later, and I want to reply, as long as I have the physical strength required, it’s possible I won’t have the brain power to form sentences, I can try, but I’ll spell everything wrong, I’ll use the wrong words, I’ll miss words out, it’s like I have a temporary dyslexia.

When you have ME you begin to realise just how much energy is required to do, well, everything. To be be able to do the few things I can do, I have to conserve energy. Everything we do uses energy. Having a conversation, even having someone in the same room as me, without any talking, uses energy, and when I don’t have enough energy, it’s excruciating. I can be at home by myself, no visitors, no music, no TV, but just the noise of life going on outside, requires my body to use energy. The sound of children playing (one of the neighbour kids has a pogo stick), dogs barking (one of my neighbours has what I think is the worlds most vocal dog), the sound of distant traffic, birds singing, rain falling, wind howling… this can all be too much for me. When my body doesn’t have energy to process this noise, it’s unbearable, and often triggers a migraine and/or vertigo-like symptoms. This is why I sleep with ear plugs in, and the rest of the time, unless I have a visitor, I wear noise cancelling headphones. This reduces the discomfort and worsening symptoms that comes from sensory overload, but it adds to the isolation and loneliness, blocking myself off from the sounds of the world going on around me.

There are no guarantees, but resting and pacing myself are the only tools I have at my disposal in order to manage my illness. But even these don’t always work. I can be doing everything right, following the rules, not over-exerting myself, and I’ll still crash. Or I can one day do too much, and not crash. There’s no rhyme nor reason to this illness. These crashes, or payback, as I often call it, is how my body responds to over-exertion, and when I over-exert myself, I will suffer afterwards, not by feeling tired, but with a worsening of my symptoms. This is the defining symptom of ME, this abnormal response to exertion. Exertion can be in the form of physical, emotional or mental activity. Environmental factors play a part too, for example, the UK is currently experiencing a heatwave, and this has caused my symptoms to worsen.

When I’m not in a crash, when it’s a ‘normal’ ME day, I still feel ill. I never feel ‘well’, I haven’t felt well since early/mid 2014. I might look well, you might have seen me sometime in the last four years and thought ‘she looks well’, you’d be wrong. In the absolute simplest terms I can think of, I basically feel like I have fluctuating levels of the flu, ALL THE TIME. And in a crash, those flu-like symptoms worsen, considerably, combined with a multitude of other symptoms. Everyone with ME has a unique experience of the illness, we all share the abnormal response to exertion, but we have different baselines (the level of activity we can manage without a crash) and different symptoms. For me, ME is mainly about a lack of stamina and physical strength and feeling slowed down, and heavy, like my bones are made of lead. Pain – head, migraine, throat, lower abdomen/pelvic, limbs, muscles, joints and skin. Also cognitive dysfunction/brain fog. I experience these, on top of my other symptoms, in various levels of severity, EVERY SINGLE DAY.

“This illness is to fatigue as a nuclear bomb is to a match”. Laura Hillenbrand, author of Unbroken and Sea Biscuit

A few doctors who have ME were recently interviewed for an article in Medscape, when asked what he [Mark Vink, MD] would like other physicians to know about ME, Vink responded “…that this is a debilitating neuroimmune disease, which has got nothing to do with being tired.”

Having ME is not remotely like feeling tired, it’s worlds away from feeling tired, the word ‘tired’ doesn’t even belong in the conversation and it should never have been added to the conversation (the name Chronic Fatigue Syndrome is to blame for that I feel). This illness is like nothing I ever experienced before I had ME, and I have suffered with insomnia for years (long before I got ME), regularly going to work on only 3hrs sleep for days/weeks at a time. That’s how I knew, at the beginning of my illness, that something was seriously wrong with me, because it was so different to anything I had ever experienced before. It can’t be overcome with sleep, or rest, it has absolutely nothing to do with motivation or willingness. I cannot just ‘decide’ to have some energy. The activity that I do, is completely at the mercy of whether my body can produce the energy to do it, it’s not whether I’m too ‘tired’ or not.

I have had people suggest that I’m just tired, or lazy. I have also had people, who seem to want to show their understanding, and I think they mean it kindly, but they also get it wrong. I can be talking to someone about their busy week and they mention how tired they are, then they hurriedly say “Oh sorry, I shouldn’t be complaining about being tired in front of you”. And I think, “why can’t you?”. Of course someone can complain about being tired in front of me. That person’s tiredness has nothing at all in common with my neuro-immune illness, but by thinking they can’t discuss being tired with me, does seem to suggest that they do think that ultimately, I am only suffering from tiredness, albeit an extreme form, therefore it would be bad form to complain about their tiredness in front of me. So, just for record, I do not mind when people tell me they are tired, people are allowed to be tired, they are allowed to be exhausted, fatigued, knackered, whatever, and they are allowed to complain about it, it won’t offend me, just don’t compare it to the disabling chronic neuro-immune illness that I’m living with.

To illustrate the reality of ME, I have a couple of stories to share, both are really sad I’m afraid.

Merryn Crofts

Merryn Crofts was a young woman from England who died last year, just twenty one years old. Merryn became the second person in the UK to have ME listed as the cause of death on a death certificate. This doesn’t mean that she was only the second person in the UK to die from ME, simply that, it’s unusual to have ME recognised as the cause of death on a death certificate. This is a step forward in the recognition of ME as a serious, disabling and life-threatening neuro-immune illness, but it’s impossible to feel positive about it, not when it was at the expense of Merryn’s life, and Sophia Mirza’s life, the first person in the UK to have ME as the cause of death on the death certificate.

The ME Association reported on the inquest ruling, of which I have shared some excerpts…

[Coronor] Mrs McKenna today concluded her cause of death as starvation caused by a withdrawal of supportive nutrition, caused by M.E. She described Merryn as someone who “bore her suffering with dignity and good grace”.

She said: “Merryn had suffered with M.E. since 2012 which caused severe fatigue, gastrointestinal failure, chronic pain, global hypersensitivity, loss of mobility and function.

“Despite extensive investigations no reason for her gastrointestinal failure which led to her reliance on supportive nutrition was found and it most likely it was caused by her M.E.”

Pathologist Daniel DuPlessis said that a post-mortem showed low-grade inflammation of nerve roots. It was suggested that this inflammation could have made her bowel hypersensitive to processing nutrients.

Dr DuPlessis pointed out that Merryn had inflammation of the ganglia – gatekeepers to sensations in the brain. A post-mortem into the only other UK death attributed to ME, Sophia Mirza, 32, in 2006, also found ganglionitis.

Mental health expert, Dr Ross Overshott, told the inquest that Merryn did not suffer a psychological illness, such as depression or an eating disorder.

He said: “She was hopeful for the future, she could speak in a very involved way about her hobbies and interests, particularly musicals and films.”

[Palliative care doctor] Dr Lippett said she was convinced that Merryn had severe M.E. and was in real, physical pain.

But she said: “There are a lot people, medical professionals, who questioned the M.E. diagnosis and questioned whether it was psychological on Merryn’s part.”

Lisa’s Mother

I would also like to share an open letter written by Lisa, a young woman who has ME. Lisa’s mother also had ME, for twenty years, and in her final months, she had pancreatic cancer too. As Lisa’s mother was dying from cancer, she said she wanted people to know that ME, its symptoms, the social isolation and the derision she experienced, were worse than having cancer.

This was originally shared on the Facebook Page: Tom Kindlon’s ME CFS & related page: News, Research and more, and I have permission from Lisa to share it here.

Hiya Tom. How are you?

I’m sad to say that my beautiful mam died of pancreatic cancer last Friday, aged 58, just one month after her diagnosis. BUT HERE ARE A FEW VERY IMPORTANT POINTS:

1. The symptoms of my mam’s ME, which she had for about 20 years, 17 of which were of an official diagnosis, were undifferentiated from the cancer she eventually died from. When she was diagnosed with cancer, her life didn’t even change as she had been in such pain, exhaustion and isolation for 20 years already. It was literally only in the last 3 days of her life where we could tell she now ‘had something different’. How shocking is that? To feel and live like you have aggressive, advanced cancer for so long when blood tests keep coming back fine and people keep telling you to do graded exercise, ‘get out in the sun’ and ‘you’re just depressed’ and for you to be passed from pillar to post with no-one understanding what’s wrong with you. The symptoms of ME were the SAME as the symptoms of aggressive, advanced cancer, for my mam.

2. As soon as the word ‘cancer’ was mentioned, my mam had, thankfully, all the support in the world – endless meals cooked, fast-tracked appointments, visitors who’d stay just the right amount of time – same for me and my sister – so much beautiful support which I’m eternally grateful for. But my sister and I were like ‘My mam needed this level of support and our family needed this level of support all along – why did no-one take us seriously?’ In many ways, ME absolutely destroyed our family.

3. I was so, SO ground down with spending ages explaining to my friends my mam’s ME – her excruciating pain, aversion to light and sound, repeated infections, persistent lack of appetite, almost complete isolation from loved ones, depression, terrible brain fog … only for them to say in passing a few weeks later ‘Uh, ya mam has ME, doesn’t she? She just gets, like, really tired, doesn’t she?’ OR WORSE ‘I get that sometimes, like really tired after a hard week at work.’

4. I am GOING TO CHANGE THINGS. I feel so angry about this disease and STILL the completely ignorant attitude of many doctors, family members and friends about it. I haven’t worked out how, exactly, yet, as I’m still very raw from my mam’s death less than a week ago BUT I am going to make it my mission to make people WAKE THE F*** UP about this devastating illness which, for 20 years, gave my mam THE SAME SYMPTOMS AS AGGRESSIVE, ADVANCED CANCER yet NO SUPPORT from doctors and derision from many other people.

Thank you so much for the support your page gave my mam. Please feel free to repost this or pass it on to anyone you like.

Lots of love, Lisa Lowery. Xxx

It doesn’t sound like either Merryn or Lisa’s mother were feeling ‘just tired’, does it…

I’m so sorry for Merryn, her family, and for Lisa and her family for their losses to this destructive illness.

On the subject of ME and cancer. 

ME Advocate, Co-Founder of #MEAction, and Director of Unrest, Jennifer Brea recently shared her experience on Twitter as a patient with both ME and thyroid cancer, and the stark difference in medical treatment. Two devastating illnesses, but two wildly different experiences, where treatment is worlds apart.

“I know people have been asking how I’m feeling. I don’t have much to say at this point other than thank you so much for your support over these last many weeks. Overall, I’m weak and it’s going to take time.”

“The cancer treatment at UCLA was world class. I felt like I had walked through a portal into the future. They next day, when no one could understand why I couldn’t sit up, much less walk, I was snapped back to the 19th century.”

“These two experiences – one the result of 60 or 70 years of cancer research, training and practice, the other of decades of total neglect of ME – coexist in the same moment in history. I’ve never experienced the inequality of what we must live everyday in such a direct way.”

Her posts on Twitter resulted in replies from other people with ME who also have, or have had, cancer, and every story was the same. Someone said that amidst crying about dying, she was also crying, more so, because she was experiencing what it was like to be treated with respect and care, like a person worthy of being listened to by health professionals. Someone else said that the discrepancies in support between the two illnesses floored her. She said, while both illnesses are rubbish, and while her cancer is hopefully controllable, unfortunately not curable, she is believed and treated as a human. Another woman said she had the exact same experience when she had cancer eight years ago. The cancer care was brilliant and immediate, with skilled treatment, but ME, is “a desert of twenty six years of solitude, silence, darkness and ignorance”. One man said of his similar experience, that compared to ME, cancer was like “landing on another planet – tailored, effective treatments, sympathy and possibility of a cure”.

I’ve seen this discussion come up many times within the ME community, and it’s always the same. People with ME who only after getting cancer, finally get to experience what it’s like to have a specialist doctor, specialist nurses, a treatment plan, care, respect, recognition and support. Then they recover, and they are left on the other side, cancer-free, but back to dealing with their ME on their own, with none of the support. Like Jennifer Brea said, it’s because of the decades of funding and research that cancer has received, yet ME is left behind, neglected in the dark ages.

I hope people understand that I don’t mean to minimise the trauma of cancer, not at all. People with cancer deserve all the support they can get, they deserve the Macmillan nurses, the Maggie’s Centres, the specialised treatment plans and all the love, care, respect and support they can get. But so do the rest of us, those of us with equally traumatising illnesses (and yes, ME is traumatising, as well as severely disabling), we deserve these things too, but we get nothing. I’d love to experience the same level of support, care and treatment, but I certainly don’t want cancer in order for that to happen. I just want the same level of support for people with ME, but it feels as though our lives are just not worthy enough, and I expect this is because, sadly, many people, including our healthcare providers, simply believe that we are only tired.

To end this post, I planned to share this song earlier, but I forgot (brain fog!). This is a version of Bob Dylan’s Blowin’ In The Wind re-written with alternative lyrics by Robert Saunders, who has ME. The recording includes the voices of eighteen people from seven different countries, most of whom have never met or communicated with each other, but are untied in their fight for health equality for people with ME. The images in the video are from the ME Perspective website. The video is dedicated to Anne Örtegren, one of our community lost to this illness. I don’t normally like stuff like this. Usually it’s a bunch of celebrities banding together to sing/murder a great song in the name of charity. But this, I absolutely love, it’s so beautiful, the lyrics are heartrendingly sad, I find it so moving, and I love the reference to the PACE Trial. So I want to give you a chance to cry along to it too!

 

NEWS

MEAction. Volunteer of the month: A Scottish trio!

https://www.meaction.net/2018/06/29/volunteer-of-the-month-scottish-trio/

The Canary. There was a political tremor this week over one of the world’s most neglected diseases

https://www.thecanary.co/discovery/analysis-discovery/2018/06/08/there-was-a-political-tremor-this-week-over-one-of-the-worlds-most-neglected-diseases/

ME/CFS Research Review. Analysis of data from 500,000 individuals in UK Biobank demonstrates an inherited component to ME/CFS.

https://mecfsresearchreview.me/2018/06/11/analysis-of-data-from-500000-individuals-in-uk-biobank-demonstrates-an-inherited-component-to-me-cfs/

Simmaron Research. Large NK Cell Study Points to Autoimmunity and Inflammation in Chronic Fatigue Syndrome (ME/CFS).

http://simmaronresearch.com/2018/06/natural-killer-cell-chronic-fatigue-syndrome-autoimmunity/

Virology Blog. Simon Wessely himself, in a recent Twitter exchange, invited Mike Godwin, an American attorney and social commentator, to review the PACE trial controversy. After scrutinizing the published record, including the PACE research and the special issue of the Journal of Health Psychology dedicated to the issue, Godwin pronounced PACE to be “so profoundly flawed that it cannot be trusted.”

http://www.virology.ws/2018/06/18/trial-by-error-sir-simon-scores-an-own-goal/

MEAction. Westminster Hall debate could be a ‘Turning of the tide’ for ME.

https://www.meaction.net/2018/06/21/westminster-hall-debate-is-turning-of-the-tide-for-me/

The Canary. A cross-party debate has offered a ray of hope for the ‘millions missing’.

https://www.thecanary.co/discovery/2018/06/22/a-cross-party-debate-has-offered-a-ray-of-hope-for-the-millions-missing/

Health Rising. Ron Davis (Finally) Gets His Big Grant! “This proposal aims to uncover the immunological basis of ME/CFS”.  

https://www.healthrising.org/blog/2018/06/25/davis-nih-grant-chronic-fatigue-syndrome/

The Canary. A global campaign group needs the UK’s support to find the ‘millions missing’

https://www.thecanary.co/feature/2018/06/25/a-global-campaign-group-needs-the-uks-support-to-find-the-millions-missing/

ME/CFS Research Review. Dr Ron Davis’s big immune study is looking at HLA genes. Here’s why.

https://mecfsresearchreview.me/2018/06/28/dr-ron-daviss-big-immune-study-is-looking-at-hla-genes-heres-why/

Pro Health. Major Research Group Highlights Inflammation Energy Production Connection In ME/CFS. The Simmaron Research Foundation is bringing the brain, the immune system and metabolism together in a way that’s never been seen before.

https://www.prohealth.com/library/major-research-group-highlights-inflammation-energy-production-connection-cfs-83470

 

 

Post Twenty Five. General Update – The Last Three Months.

I haven’t posted for a while and I couldn’t decide which of my partially written posts I should complete first, so I decided to start with a general update, to let you know what’s been going on in my life the past few months. One of the benefits of my blog, I’ve discovered, is it saves me energy when I communicate with friends, we don’t have to begin the ‘what have you been up to’ conversation from scratch, if they’ve read my blog. So if I write regular general updates, this will update everyone (who’s interested) in one go, and save me from having to have the same conversation over and over again.

The reason that I haven’t posted anything since February is that I’ve had a really bad few months. My trip to Iceland (see Post Twenty Three. Wheelchair’s First Holiday.) and my screening of Unrest (see Post Twenty Four. Unrest In Peebles.) caused me to relapse. Four months later and I’m still not back to my pre-Iceland levels of ME. I’m managing much less, and I already couldn’t do much, and it takes far less exertion to cause me to crash these days. So I haven’t managed to write much on here, not on top of feeding myself, cleaning myself, getting to counselling and the doctor, which have had to be my priorities.

Mental Health

I also had a huge dip in my depression and anxiety a couple of months ago. I was experiencing frequent panic attacks, I had a constant sense of fear, my mood was incredibly low, and it was having a huge impact on my ME symptoms. I’ve been on and off anti-depressants since 2016, trying to find something that I don’t react badly to (I’m extremely sensitive to medications since having ME). In September last year I started a new one, Bupropion. My GP and I decided I would stay on the lowest dose for a few months before increasing, to give my body time to get used to it. It was during this especially difficult period a couple of months ago that we decided, in the hope it would help me through it, to increase the Bupropion dosage. Unfortunately though, in order to increase the Bupropion, I had to stop taking Amitriptyline, also technically an anti-depressant, but I take it at a low dose as a migraine preventative. The two interact when either are taken at a higher dosage, but due to the severity of my depression at this time, I decided I had to try.

So I phased out the Amitriptyline, and then increased the Bupropion. I knew I would experience the side effects of increasing the Bupropion, I did when I first started it, and the first two weeks both times were absolute hell. As the side effects of the increased Bupropion dosage wore off, I began to realise just how much the Amitriptyline had been doing for me. I already knew how effective it was at reducing the frequency of my migraines, from two or three per week, to two per month. I hoped it wouldn’t happen, but when I stopped, the almost daily migraines returned. It always takes me a few days to recover from a migraine, and when they occur this close together, I basically never have a day off, so I spent a few weeks feeling constantly migrainey. I also stopped sleeping, I did suspect that Amitriptyline helped me sleep, but I guess I’d forgotten, it turns out, in combination with another couple of supplements, it’s essential for me.

One of the benefits I hadn’t known about was how it appeared to help me during my period. Since having ME, I developed Endometriosis (a common occurrence for women with ME), and my period went from being pretty average, to being the most dreaded, painful and generally worst week of the month. Each period caused my ME to relapse, all my ME symptoms worsened considerably. My period itself also became heavier, far far more painful with utterly debilitating cramps (ten out of ten on the pain scale), it made me nauseous and dizzy, and my bladder and guts would join the party too, it was horrendous all round, and I was looking at a possible hysterectomy. But then, thanks to a combination of meds and supplements, it became far more manageable, nowhere near my pre-ME periods, but a lot better. So I was not prepared for my first period after stopping Amitryptyline to be the worst one of my life so far. As well as the worsening of my ME symptoms, migraines, nausea etc, I had cramps so bad that they caused me to double over in agony while walking down the stairs, and resulted in me falling down the stairs, thankfully I wasn’t hurt as I was near the bottom anyway. I decided immediately that I wanted the Amitriptyline back.

So I’m now back on my usual dose of Amitryptyline, 25mg does it for me. Which of course meant I had to either drop back to the lower Bupropion dose, or stop it altogether. I decided to stop altogether, it wasn’t doing anything for me at the lower dose, so there was no point staying on it. I’ve now been back at my normal Amitriptyline dose for two weeks, and have only had one almost-migraine since, the longest I went with no migraine during those horrible few weeks was three days. After much discussion, my GP and I have come to the conclusion that due to my sensitivity to meds, I’m done with anti-depressants, the side effects are too severe, and they mess with my other meds, and none that I have tried so far have worked. So that’s that. I have Diazepam for when my anxiety gets really severe, but when it comes to depression I’m going to have to deal with it unmedicated, which terrifies me, because I fear that it could kill me. But there’s nothing more I can do, other than continue with counselling, keep trying to find things to look forward to, and keep fighting for ME health equality.

An Upsetting Discovery

I wrote in a previous post (Post Eleven. From Healthy To Not Healthy.) about a doctor I saw at the Western General Hospital in Edinburgh in 2015…

I saw the ME/Infectious Diseases doctor at the Western General in mid-May. I suppose, being honest, he didn’t really have much in the way of new or useful information for me, but, he listened to me. He gave me an hour and a half to talk. I don’t think I can put into words how good it felt to finally have a medical professional with a knowledge of ME actually listen to me, and believe me, to show me understanding and compassion. We went through my entire medical, and life history. We also bonded over a love of Icelandic music! He too confirmed my diagnosis of ME. All he could have suggested was that I attend the Astley Ainslie ME Service, which I had already been referred to so there was really nothing more he could do. But he helped me enormously, like I said, he was the first example of a doctor who truly believed me and who acknowledged what a devastating and life-changing illness ME is. I really don’t think anyone can understand the importance of this, not until you’ve been there yourself.

In February I discovered something really shocking and upsetting. You’ll have to have some understanding of the PACE Trial in order to understand this, (see my previous post Post Seventeen. The PACE Trial Scandal.). I found out that the doctor I saw, the doctor who I praised, was a co-author of the PACE Trial, he ran the Scottish leg of the Trial. Despite all the evidence to the contrary, this doctor strongly believes that ME is a psychosomatic illness. He believes that we, people with ME, simply ‘believe’ that we have a physiological illness. From speaking to other patients of his, it seems he does take us seriously, and he does want to alleviate unnecessary suffering, he believes ME is a real illness, he believes that we suffer, but he does not believe that ME is a neuro-immune illness, he believes it’s a psychiatric condition. He believes that we have ‘false illness beliefs’, that we simply have a fear of exercise, and that we can overcome these beliefs with Cognitive Behavioural Therapy (CBT), then we can undergo Graded Exercise Therapy (GET), and recover.

I was shocked when I heard, but all I had to do was Google his name to find proof, I also found some deeply troubling papers that he had written about ME. This man is partially responsible for the NHS treating ME as a psychosomatic disorder, despite the fact that ME is defined as Neurological by the World Health Organisation. How he, and his colleagues can do this, in the face of current research that proves that people with ME have specific defects at a cellular level (plus other science stuff I don’t understand), I just don’t know. I don’t know what his agenda is.

When I met him, I had no idea that from his point of view, I was a psychiatric patient. I felt like he believed me, that’s why I heaped so much praise on him, but seemingly, he only believed, that I believed, that I had a ‘real/physical illness’. So when we spoke, was he simply playing along, indulging my so called fantasy? I feel manipulated. I can only assume that he never brought up his psychosomatic model of ME during our appointment because he knew I had already been referred to Astley Aisnlie Hospital, and assumed they would use CBT and GET to treat me – they did not. They did use CBT, but as a tool to help me cope with my life-changing diagnosis, and I stated at my first appointment that I would not take part in GET, and they were fine with that.

I found this out in February, and I’m still reeling from it. He was nice to me, he treated me kindly, he was charming. But there’s no hiding from the truth now, his professional stance is completely behind the psychological model that states ME is not a physical illness, and that our symptoms could be removed if we wanted it enough. From now on I will research every doctor I see, so I won’t make the same mistake again.

Snow Days

We had some wonderfully snowy weather at the beginning of March. While other people had to deal with closed schools and blocked roads, I just stayed cosy in my cottage and admired the view out the window and wished I was well enough to go out and play in it. Something funny though, I had a few people ask me if I was ok, if I was managing ok being stuck inside due to the snow. This was really kind, it’s nice to be remembered, but, for me, the snow made no difference, at all. I’m always stuck indoors. I have been since mid-2015, when my ME worsened and made me mainly housebound. I was no more stuck inside with the snow, than I am when there’s no snow. But I rarely get asked how I cope with being stuck indoors when it’s ‘just’ due to my illness. Interesting.

Acupuncture

I have wanted to to try acupuncture for a while. I’m not normally one for alternative therapies, but I felt that the anecdotal evidence for acupuncture in the treatment of migraines was strong enough to give it a shot.

Initially I had hoped I could get this treatment on the NHS. It’s not something I would have normally considered (getting on the NHS), except I had read the Scottish Good Practice Statement on ME. These are the guidelines that NHS Scotland use for the treatment of ME, and they actively recommend acupuncture as a treatment for migraines in people with ME. So I asked my GP, and she contacted NHS Borders to ask if this is something they would fund. They would not, unless I attended the pain management programme at the BGH (Borders General Hospital) Pain Clinic.

I actually met with one of the Pain Clinic doctors early-2017 and he told me that the only thing he could offer me was this ten week, weekly, pain management programme. I would have to attend an exercise based workshop once a week at the BGH. He was actually fairly well informed about ME, and he advised that this course would be unsuitable for me, due to the exercise based approach, and the fact that I’d have to make the journey to the BGH every week for ten weeks, which is just not do-able for me. He also told me that acupuncture was not available on the NHS, this was before I had read the Scottish Good Practice Statement, and I believed him.

So, NHS Borders have denied me funding for an officially recommended treatment, that could help me, unless I attend a course that would cause me harm, a course that I was advised not to do by the actual doctor who runs it. Bonkers, I know.

After finding funding for it elsewhere, I then began my search for a private acupuncturist who could do home visits. I found someone from Borders Chiropractic and he comes to my home every Monday. It’s too soon, and there have been too many variables (on and off Amitriptyline, Bupropion etc) the last couple of months, to say if it’s having an effect. I do find the actual appointment very relaxing, and twice so far I have spent the rest of the day (after the appointment) feeling better than I have for ages. I want to give it at least six months before I make my evaluation.

Blue Badge

In the last couple of months I successfully applied for a Blue Badge, which means I (my mum, me as the passenger) can now use designated disabled parking spaces. I hardly go anywhere, so it won’t get used much, but it’s really useful for hospital appointments. The BGH is huge (as are most hospitals), and every appointment involves too much walking, so now I don’t go without my wheelchair. Having the extra space around the car for folding and unfolding my wheelchair is great, I can faff around without worrying about being hit by a car, that’s always a good thing. Of course being able to park close to the hospital also helps with my overall energy usage. The process of getting the Blue Badge was unpleasant, but it was through my local council, so it wasn’t as bad as dealing with the DWP. Stuff like this is always disheartening though, when I have to defend my need for support as a chronically ill/disabled person, I feel as though I have been reduced to a list of symptoms on a form and how they affect me, it’s never a pleasant experience.

New Neurologist

I had a really positive appointment with a new neurologist. He was surprisingly, although I still say this cautiously, helpful. He seemed sensitive in regards to ME, no eye rolling, no disparaging remarks, no (obvious) disbelief. He acknowledged that a lot of my symptoms are neurological, and are indicative of both ME and/or MS. Next step, an MRI of my brain and spinal cord. I’m pleased that he wants an MRI of my spinal cord. Since I read about a small study regarding the improvement of severe ME symptoms following surgical treatment of cervical spinal stenosis, I’ve been wondering if this could be an issue for me, the MRI will let me know. It will also be really interesting to find out if I do have inflammation of my brain and spinal cord, which would be the ‘Encephalomyelitis’ of Myalgic Encephalomyelitis. Although some do disagree about the appropriateness of this name for the illness. The ME Association, for example, prefer Myalgic Encephalopathy, with ‘Encephalopathy’ meaning damage or malfunction of the brain, as opposed to inflammation. Whatever he finds, it’s good to have a proactive Neurologist, who plans to follow up and see me again whatever the outcome of the MRI, he wants to help alleviate my suffering, whatever the cause.

Bladder/Uterus/Period Stuff

*If this stuff grosses you out (but why?!) then maybe skip this bit. This is also your warning that I may be stepping into ‘too much information’ territory, so if you don’t want ‘too much information’, don’t read it!

My bladder symptoms returned with a vengeance in February so I’ve been referred to a new Urologist. I’d put this off as the symptoms had lessened, and Urologists aren’t much fun, they like to do invasive bladder procedures, obviously. This may be way too much information, but, why not (I used to be so private, but now I couldn’t care less). Back when my period was really bad, I bought a menstrual cup in the hope it would handle the heaviness of my period, I also liked the idea for environmental reasons, much better to buy one product that I can use every month for ten years, than multiple products per period that end up in landfill. I found out unfortunately, that for some reason, my bladder does not like having a menstrual cup next door to it. Each time I tried it, my bladder symptoms were exacerbated. So I gave up, until a few months ago. I dug out the menstrual cup, sterilised it, and tried again, and that’s what triggered the return of my bladder symptoms. So, I wonder what the Urologist will make of that. I think my pelvic floor muscle is knackered, it’s the only thing that I can think of that, literally, connects all this stuff. I’ve also developed some other new issues surrounding my period. Not only can I not use a menstrual cup, I now experience pain when using tampons, but my period is far too heavy to not use tampons, pads alone are just useless for me.

I’m wondering if my Endometriosis is back. It was almost two years ago when I had surgery and the Endometriosis was cauterised, but it can grow back, the only way to know though, is with more surgery. If my ME wasn’t such a massive and annoying complication I would ideally like a Hysterectomy. I’ve been asking for one since I was sixteen, I have no need for a uterus as I have known since I was a teenager that I didn’t want to have children. But, given how my ME has reacted to hormonal birth control (permanent relapses both times), there is a risk that a Hysterectomy, and the compulsory Hormone Replacement Therapy, could cause another severe and permanent relapse. There’s just no way of knowing what would happen, and a Hysterectomy is of course irreversible, so it would be a huge gamble. I’m also considering Endometrial Ablation, it sounds a bit scary, permanently disfiguring my uterus, but it could be a good compromise. It would make my period lighter and shorter, or even better, it could eliminate it altogether.

Given these particular sets of symptoms seem to be intertwined somewhat, what I really need is to see a Urologist and a Gynaecologist in the same room at the same time, but for some reason that’s just not possible. Apparently modern medicine believes that human bodies are made up of separate parts that never interact.

Fundraising For ME Research

I’ve had some family and a friend do some fundraising for ME research again this year!

My brother-in-law John is running to raise money for Invest In ME Research! He ran the Stirling marathon on 29th April and will run two half marathons in Edinburgh and Alloa on 27th May and 3rd June. His goal is to raise £2500 and at £1932.40 he doesn’t have far to go! You can make a donation here.

https://www.justgiving.com/fundraising/john-mcglynn3

My friend Paul walked the Northumberland Coastal Challenge  (26.2 miles) on 7th May to raise money for ME Research UK! His goal was £250 which he exceeded by raising £330! You can still make a donation here.

https://www.justgiving.com/fundraising/PaulwalkforME

In March my niece Amelia (with help from her mummy/my sister Emma), hosted an afternoon tea on the Mother’s Day weekend to raise money for Invest In ME Research and her gym, Astro Gymnastics. She raised £403.34 in total, so £201.67 for each charity!

My mum, for the second time, donated her birthday, which happens to fall on International ME Awareness Day, to Invest In ME Research! She threw a huge party and asked for donations only, no gifts or cards. She’s still to receive some donations but it looks like she’ll have raised around £1000!

Many thanks to John, Paul, Amelia, Emma, my mum and everyone who donated. Every penny that goes to Invest In ME Research and ME Research UK goes directly into biomedical research, which is the only hope we have to find a cure.

#MEAction 

I’m very happy to announce that I am now officially part of the #MEAction Scotland team!

The MEAction Network, co-founded by Unrest Director Jennifer Brea, is a worldwide ME patient advocacy group fighting for health equality for ME. The focus is on empowering patients to take action to improve the research and treatment situation, through local affiliate groups in countries around the world.

My involvement is with our public Facebook page, currently called Millions Missing Scotland, but we hope to soon change the name to #MEAction Scotland. The purpose of this page is to communicate about ME events, activities and news to our followers, and to provide a platform for sharing information about things happening in Scotland. I’m an administrator for the page and will be/have been posting ME related articles, research and news to the page. Basically, the ME news that I’ve been sharing publicly on my own Facebook page, I will now be sharing on the Millions Missing Scotland (soon to be #MEAction Scotland) Facebook page. I urge anyone who likes to read what I post on my own page, in regards to ME news, please do like and follow our page. We want this page to be Scotland’s hub of ME related news. Everything relevant to our illness; fundraising, petitions, research, etc, will all be shared here.

We also have a closed Facebook group called #MEAction Scotland. The group is a community, to get ME advocates in the same place to share ideas and get people involved in ME advocacy. You need to join the group (by request) to be able to post and read other people’s posts. It’s a great place to share ideas and brainstorm about fundraising events, or anything related to ME advocacy. You don’t have to have ME to join the group, our healthy allies are just as important in our advocacy efforts.

ME Awareness Month and #MillionsMissing

May is International ME Awareness Month, with ME Awareness Day falling on May 12th, which was Florence’s Nightingale’s birthday, who reportedly suffered from ME herself.

We have had a lot of press coverage this month. In particular, in response to the new BBC Newsbeat documentary M.E. and Me (available on BBC iPlayer and YouTube) and also in anticipation of the 100+ #MillionsMissing protests that took place globally on Saturday 12th May.

Press coverage is good, but I’ve actually been really disappointed in a lot of the articles I’ve seen. So many start off well, but the reporter then rounds the story off with incorrect details that they’ve clearly found online, such as ‘the recommended treatments are CBT and GET’, with no word that these are actually dangerous and are not based on evidence. I’ve only seen one article (The Canary – see link below in the News section) correctly identify the main symptom of ME. They almost all say that the main symptom of ME is being extremely tired, or something along those lines, but never the actual main symptom – the abnormal response to exertion. Or they use ‘Chronic Fatigue’ in the headline, but then refer to it as ME in the article. This results in people conflating the neuro-immune illness ME, with the symptom Fatigue, which is exactly what we need to be moving away from.

These articles, even with only one error, don’t do us any good. People who don’t know otherwise will read them and go away believing that we have safe treatment options and that we’re just tired. What if these people are on the review team for the NICE guidelines, or are in any way involved with decision making for the support, funding and treatment of ME? Or what if they’re just normal people who are one day presented with a petition to sign, or a campaign to fund for biomedical research? Well, they’ll look the other way, because as far as they’re concerned, based on those many articles they read, we’re already sorted, we have treatments and we don’t need their help.

I see other people with ME celebrating the press coverage, while seemingly not releasing that most of it is harming us. As long as this continues I don’t see anything changing. So what we need to do is comment on these articles, or contact the reporter directly, and put them right. Be polite, thank the reporter for the article, but inform them of the errors, and how those errors impact on people with ME. Then hopefully they’ll be encouraged to continue writing about us, but with the truth.

I was unable to attend the Edinburgh #MillionsMissing protest. Initially because I had hoped to go my mum’s fundraising party that day, but actually I was unable to attend either, making it a pretty miserable day for me. On the one day of the year that people with ME become that bit less invisible, I felt more invisible than ever.

Thankfully though, I was able to watch the events in Edinburgh as they were streamed live via Facebook! The opening speech was especially moving, and rousing, it made me sob, and it made me angry, as it should, it should make everyone angry. I also really liked this line from a poem read in the second clip (after Stuart Murdoch’s speech, about 26 mins in). “So you think I’m looking well. Thank you. But in return I’ll say. My brain and nervous system, aren’t usually on display.”. I think I’ll keep that for whenever I’m told I’m looking well. 😉

Here are some clips from the event, for those who would like to watch.

In this clip there’s the introductory speech by Gerry Farrell, laying of the final shoes and a crowd photo for the press attending.

In this clip Stuart Murdoch, lead singer of Belle & Sebastian, speaks to the huge crowd (at 17 mins in). Sing in the City Choir perform, and people read stories and poems of their lives with ME. 

In this clip MP Carol Monaghan speaks (at 31 mins in), Sing in the City Choir perform again, and more powerful stories and poems are read by and for people with ME.

In this clip Emma Shorter, co-founder of #MEAction Scotland, speaks (at 15 mins in) and leads a mass lie down in the precinct with shoppers and passers-by seeing hundreds of bodies on the ground. And the band Wolf in Sheep’s Clothing perform.

Many thanks to #MEAction Scotland for organising this incredible event, all the volunteers, an incredible effort by people with ME and our healthy allies. Thank you to all the speakers and performers. Thank you to everyone who attended. And thank you to the wonderful volunteer who live-streamed these clips for those of us unable to be there.

Petition

I often have people ask what they can do to help me. Well, this is it, this is what would help me. Please sign and share this petition. Every signature brings us closer to the goal of effective treatment and care for people with ME in Scotland, and beyond.

We are calling on the Scottish Parliament to urge the Scottish Government to review the level of support for people with ME in Scotland with a view to:

  • Investing in biomedical research and creating a centre of excellence for ME
  • Ensuring healthcare professionals’ training and education materials reflect the latest scientific evidence
  • Providing specialist care for patients and discontinuing the harmful treatments graded exercise therapy (GET) and cognitive behavioural therapy (CBT).

The deadline is 31st May and we need as many signatures as possible by then. You do not have to be Scottish or living in Scotland to sign!

Please Sign and Share!

http://www.parliament.scot/GettingInvolved/Petitions/PE01690

Watch our video to find out more!

Upcoming Blog Posts

Like I said earlier, I have many partially written blog posts, some of them I began writing over a year ago! Most of what you read here takes me weeks or months to write, I tend to dip in and out as and when I feel motivated and well enough.

If you’re wondering what’s to come, these are the subjects that I’ve been thinking of addressing…

  • A hugely significant reanalysis and evaluation of the discredited PACE Trial was published in March this year and it had an enormous impact. I began a post about this the same day, but have been too unwell to complete it. Soon, I hope.
  • Unsolicited advice, specifically, unsolicited medical advice – it’s the worst.
  • My experience of Ableism. It’s everywhere.
  • Hobbies, what I can and can’t do to occupy my time – how having ME has changed this.
  • How I cope with the isolation that living with severe ME brings – not very well.
  • Surprising things about ME – surprising symptoms and surprising ways in which my symptoms affect me.
  • My experience of ME awareness amongst medical professionals – it’s not good.
  • My experience of claiming disability benefits – it’s really not good.
  • Future employment options. What will I do should I be well enough to work again one day?
  • What chronic illness has done to my friendships – some strengthened, some distanced, some gone.
  • My depression and anxiety, in more depth – I’m honest about my ME, so why not my mental health?
  • The difference between being tired and having ME – lots of differences, they are not the same thing.
  • Hypersensitivity – one of the weirder symptoms I suffer from and it’s possibly the hardest to explain to other people – yes, the rustling sound of that plastic bag actually causes me pain.

Do you have any ideas for future posts? If there is anything you would like me to write about, I make no promises, but I’m happy to receive your suggestions!

 

NEWS

The (Australian) Guardian. To the #MillionsMissing with ME/CFS, something remarkable is happening.

https://www.theguardian.com/commentisfree/2018/may/12/to-the-millionsmissing-with-mecfs-something-remarkable-is-happening?CMP=Share_iOSApp_Other

The Canary. On Saturday ‘millions’ of ‘missing’ people will reappear for the day.

https://www.thecanary.co/discovery/analysis-discovery/2018/05/09/on-saturday-millions-of-missing-people-will-reappear-for-the-day/

The Scotsman. Belle and Sebastian singer Stuart Murdoch on coping with ME.

https://www.scotsman.com/news/health/interview-belle-and-sebastian-singer-stuart-murdoch-on-coping-with-me-1-4738083

Health Rising. Stanford Exercise Study Shows Different Immune Response in Chronic Fatigue Syndrome (ME/CFS)

https://www.healthrising.org/blog/2018/03/05/chronic-fatigue-stanford-exercise-immune-response/

The ME Association. A misunderstood disease wrongly labelled make-believe by some GPs is more devastating to sufferers than multiple sclerosis, a new scientific study has found.

http://www.meassociation.org.uk/2018/03/me-association-press-release-people-with-m-e-measurably-more-disabled-than-people-with-multiple-sclerosis-16-march-2018/

Health Rising. The Cortene Way: New Drug to Be Trialed in Chronic Fatigue Syndrome (ME/CFS) Soon.

Part Three. https://www.healthrising.org/blog/2018/03/16/cortene-drug-chronic-fatigue-syndrome-me-cfs-pt-iii-the-clinical-trial/

The ME Association. Chronic fatigue syndrome possibly explained by lower levels of key thyroid hormones.

http://www.meassociation.org.uk/2018/03/frontiers-press-release-chronic-fatigue-syndrome-possibly-explained-by-lower-levels-of-key-thyroid-hormones-20-march-2018/

BMJ Journals. Markers of non-coeliac wheat sensitivity in patients with myalgic encephalomyelitis/chronic fatigue syndrome.

http://gut.bmj.com/content/early/2018/03/17/gutjnl-2018-316133

The New York State Department of Health update their information about ME.

https://health.ny.gov/diseases/conditions/me-cfs/

The Evening Standard. Google Maps becomes more wheelchair friendly with launch of journey-planner tool for disabled people.

https://www.standard.co.uk/news/transport/google-maps-becomes-more-wheelchair-friendly-with-launch-of-new-tool-helping-disabled-people-a3791461.html

The Guardian. New initiative to address ticketing barriers for deaf and disabled fans.

https://www.theguardian.com/music/2018/apr/09/access-is-everything-deaf-disabled-live-music-events

STV News. Disabled Scots ‘will not face unnecessary medical checks’. New legislation paves the way for the creation of a new benefits regime in Scotland.

https://stv.tv/news/politics/1413084-disabled-scots-will-not-face-unnecessary-medical-checks/

 

Post Twenty Four. Unrest In Peebles.

Last month I hosted a screening of the documentary, Unrest, at my local theatre, the Eastgate Theatre and Arts Centre in Peebles. If you’re new to my blog and/or are not familiar with the film you can check out the trailer Unrest Official Trailer, and you can read my previous post Post Nineteen. Time For Unrest..

When I first heard about Unrest I knew that I wanted to arrange a screening locally. This wasn’t just a film. It was the beginning of a movement. A documentary created by Jennifer Brea, that the rest of us (people with ME) could use as a tool to create change, and cure the ignorance. Unfortunately, and somewhat ironically, I realised early on that my own ME was going to prevent me from following through, and I planned to abandon the idea. But then my mum and my friend Heather stepped in and took over for me. I kind of coordinated it via email and made sure to guide them, but really they took on most of the organisation. Heather in particular took on pretty much all of the promotion, which, given most people won’t choose to see a documentary about an illness they’ve never heard of, know nothing about, or don’t think is real, was crucial. She did an incredible amount of work, and I can’t thank her enough.

It was very lucky that I felt well enough on the day to attend, especially given I was in a major crash having returned from a few days in Iceland only two and a half weeks beforehand, but the screening went really well and it was a really lovely evening. It was wonderful to see so many people there, and I was especially touched that so many of my friends attended, especially those who travelled down from Edinburgh on a work night. There had been weather warnings in place and the evening before the screening I was pretty sure none of the Edinburgh lot would make it. I felt disappointed, but of course their safety had to come first, given the risk of snow and ice on the roads. But thankfully on the day of the screening the weather cleared, the roads were black and they almost all made it. There wasn’t enough time to catch up with everyone properly, but there were lots of greetings and hugs in the foyer of the theatre in the twenty minutes before the film. Having so many friends there was really amazing. It sounds sickeningly schmaltzy, but I could feel the warmth of all the people who were there, to support me. I think that evening was genuinely the happiest I’ve felt in a really long time. For a short while I really felt like Phoebe again, and for a moment, with the buzz of the activity in the foyer, I almost forgot why we were all there. It was only when I sat down in the auditorium, and the film began to roll, that I remembered, we were all there to watch Unrest together. For the first time, my friends are going to see a glimpse of my life. It was a big deal.

Since having ME, my friends and family only see me on my better days. Only my mum has seen me at my worst, although, saying that, she hasn’t seen me when I’ve been reduced to crawling, so even she hasn’t seen me at my very worst. Having company when I’m having bad days, or even on normal days (depending on my individual symptoms), just isn’t an option. Partly because I don’t have the energy to interact with people, but mainly, I simply cannot stand to have anyone else in the same room when I’m suffering that badly. The sounds, the movement, just feeling the energy of another person there, is unbearable, and painful, in ways I just don’t know how to describe. It’s a really weird symptom of ME.

Anyway, when the film began, the enormity of the evening, and what my friends were about to see, in my presence, really hit me, and I had a bit of an emotional reaction. I had to work really hard to hold in the tears, and I’m not just talking watery eyes, I could feel my whole body starting to shake, it felt like I was beginning to hyperventilate. I closed my eyes and concentrated on my breathing. Once I gained control of myself, and had acknowledged to myself what a significant occasion the evening was, but it was all good, I was able to watch the film without any further emotional breakdowns.

After the film we had a short break and then the scary bit began, I took part in an informal Q&A session, along with Vicky, a new friend who lives locally, and mother to a teenage daughter who has severe ME. My mum had the job of running around with the microphone.

I had months to think about what I wanted to gain from the evening. There were certain topics that I really wanted to share with the audience. I just had to hope that they would ask the right questions. Luckily I managed to work these into the discussion. Mainly, I wanted to give the audience an understanding of the politics and the controversy surrounding ME research and treatment in the UK, the PACE Trial, and the upcoming review of the treatment guidelines for ME by NICE (the National Institute for Health and Care Excellence), whose guidelines are used by the NHS.

I wanted people to understand what the main, and cardinal symptom of ME is, Post Exertional Malaise. It’s not fatigue, as many people think. PEM is THE defining symptom, it’s what sets ME apart from every other fatiguing illness, without it, you don’t have ME. But the word ‘Malaise’ is awful. When I hear it, I a picture a swooning Victorian lady, lying on a day bed being fanned by her maid. Whereas the reality is brutal. I wrote about this in my last post so I won’t go on, apart from this, someone I follow on Twitter recently described PEM as meaning, ‘all systems go’, when each and every symptom flares up in a violent attack on the body. That, I can relate to.

I also wanted to challenge people’s perceptions that they have about chronic illness, especially in terms of the invisibility of ME. This is something that bothers me. People often comment on how well I look, and I get that the sentiment is coming from a kind place, and I expect they mean it as a compliment. But I find it a bit odd, and tiresome. While I know that there’s no malice behind it, it’s not something I take as a compliment. You can tell that me I look nice, if you think I do, but there’s no need to tell me that I look well, when you know that I’m not. I have an invisible illness. Phoebe with ME looks just the same as Phoebe without ME. Telling me I look well, it really doesn’t mean anything, but it does ignore the very real internal battle going on inside my malfunctioning body, and this kind of invalidates the very real everyday struggle of living with ME. It also plays into the fear (reality) that everyone with ME shares, that people don’t believe us. The fact that we, on the whole, look well, is one of the reasons why doctors dismiss us, it’s why we don’t get disability benefits, it’s why we get abuse for using a Blue Badge, it’s why we get reported to the DWP for benefit fraud, it’s why the general public believe we are either lazy, or faking it. I’ve had close friends, on seeing me wearing make-up, with freshly washed hair being chatty and smiling, insist that I must be doing better. I tell them that I’m actually not, it’s just the make-up etc. But they still insist that there must be more to it, and none of my insisting that there is in fact, not more to it, changes their minds.

I only tend to look ‘unwell’ on the bad days, when in a crash. And when I’m in a crash, you don’t see me. So on the occasions that you do see me, it’s when I’m having a better day. But don’t be mistaken, on these days I am still seriously and chronically ill. It does not mean I am recovering, it only means I am having a better day, or a better few hours. I am still, overall, just as unwell as I was during my last crash. Some people however, just don’t get it. Sometimes I feel that I should make an effort to look less well, so that I’ll meet other people’s expectations of what a chronically ill person looks like. It does frustrate me, big time. The fact that some people don’t get it, I guess it means I’m not doing as good a job of educating people as I had thought.

So one of my goals of the evening was to let people see, via Unrest, what we tend to look like during a crash. And how quickly we can go from looking well and happy, to lying on the ground in a fetal position screaming and crying out in pain. I can’t help but wonder how many people at the screening struggled to rationalise the story they saw on film, and the story I tell them, with the Phoebe they saw in front of them that evening. I had made an effort with my make-up and I wore a pretty dress (it got compliments, as did I actually). And because I was excited to be out, and to see so many friends, I’m sure I came across as happy and animated. Which I was, but I also felt unwell, because I have ME, and ME is chronic, which means I always feel unwell.

Another goal of mine, not just with the screening of Unrest but with my blog too, is to help people see ME for what it is. I dream of a world when we can tell someone we have ME, and they would immediately ‘get’ it. They would understand the gravity of what they were being told, in the same way as they would a Cancer, Alzheimer’s or Parkinson’s diagnosis. I wish that one day we will have the ‘luxury’ of just being ill, without the stigma, the disbelief, or the need to tirelessly educate everyone around us. As an example, my dad was the first person I knew who had (early onset) Alzheimer’s. Before his diagnosis I had little knowledge about Alzheimer’s, what I knew was only what I had learned in passing, I guess mainly from TV, and news articles. But, when he was diagnosed, I did know it was bad, I knew it was the worst outcome given the other possible options. I knew his life was effectively over, I knew he would never be the same, I knew he would stop being ‘dad’, I knew it meant he’d have it forever, and I knew he would die because of it, and this was before I’d done any active research on the disease.

People don’t get that about ME. Until they actively research the illness, they don’t know that it’s incurable, they don’t know that not everyone recovers, they don’t know how disabling it is, they don’t know how dangerous over-exertion is, they don’t know that we have no treatment options. They don’t know that people with ME have been found to have a lower quality of life when compared with other major illness, they don’t know that people die from it. They don’t know how common it is, there are an estimated 250,000 sufferers in the UK, in comparison, there are 100,000 people with MS, and 145,000 people with Parkinson’s. Everything they think they know, is wrong. They think we’re ‘just tired’, they think it’s psychological rather than physiological and they think we can cure it with lifestyle changes. Now I include myself in this, I wasn’t as ignorant as some/many people I’ve come across, but I had no idea when I was diagnosed how serious  and life-altering it was. This needs to change. And to do this we need to help the general public gain a basic, but accurate knowledge of ME, and I think Unrest has taken us one step forward in achieving this.

Unrest has had a huge impact, for which I’m very grateful. But there’s something that has been bothering me. I’m in a few ME social media support groups and am a fairly active member of the ME Twitter community. I have heard many accounts from people with ME, all over the world, whose family and friends were sceptical of the severity, or even the existence, of their illness. It was only after watching Unrest, that they came around and believed them. This has happened with me too. I’ve had a handful of people who have basically been silent since my diagnosis three years ago, who thought that I was ‘just tired’. But then they watched Unrest, they broke their silence, and they now believe me. It’s wonderful that Unrest is having this impact. But, it does bother me that these people had to hear it from someone else (Jennifer Brea) before they would believe me. Why was I, the person who is in their life, who has ME, not a credible enough source? I cannot wrap my head around this. When someone tells me about one of their traumatic experiences, something that I’ve never been through, whether an illness, a divorce, an abusive relationship, a miscarriage, or whatever, I believe them. I don’t need proof. I don’t need to see evidence in the form of a polished, critically-acclaimed, well edited, beautifully scored award winning film. I think this points to a few things; the level of stigma that exists when it comes to ME (the whole lying, lazy, work-shy, benefit scrounging, hypochondriac, malingerer thing), the fact that this illness is so much more disabling than a healthy person could possibly conceive of, and maybe there’s some fear in there too, these people don’t want to admit that such an illness exists, because if they do, then they have to acknowledge that it could happen to them. I guess, like Jen’s doctors, some people do need to see it on video, with their own eyes, before they’ll believe it.

Anyway, the Q&A went well I thought. I was able to mention the flawed and now thoroughly debunked (but not yet retracted) PACE Trial. The only clinical trial in the UK to be funded by the DWP (Department for Work and Pensions), the people who decide if we get disability benefits or not. The reported results of the trial stated that we could be cured by CBT (Cognitive Behavioural Therapy), which would cure us of our ‘false illness beliefs’ and our ‘fear’ of exercise. Once cured of those pesky false beliefs then we should take part in GET (Graded Exercise Therapy) and hey presto we’re cured. Except we’re not, we get worse, or in some cases, we die. GET has been proven to be harmful to people with ME. The authors of the trial inflated their statistics, which was only brought to light after they were made, by court order, to release their raw data for reanalysis. They changed their definition of what constituted as ‘recovered’ midway through the trial. Participants could finish the trial worse than before they started, and were still counted as recovered. This trial is now widely known as a very good example of how not to run a clinical trial. But, and this is an absolute atrocity, the results of this trial are still used as the basis of the current treatment guidelines, not just in the UK, but worldwide. The results of this trial also influence our access to disability benefits. Claimants are often told they won’t get anything if they don’t first undertake CBT and GET. Now isn’t it interesting that this trial was funded by the DWP…

For more information about the PACE Trial you can read my previous post Post Seventeen. The PACE Trial Scandal. and Post Twenty Two. Reblog. An Interview with Dr David Tuller. .

Thankfully, although I’m not feeling optimistic about it, NICE have agreed to review their guidelines for the treatment of ME. It’s in the early stages and won’t be complete until 2020, and in the meantime they still recommend CBT and GET as treatments, which is unfortunate, and I think, criminal. After the first stakeholder meeting last month I was feeling optimistic, and I shared this at the Q&A. Professor Mark Baker, the Director of the Centre for Guidelines at NICE had said during the meeting “We are going to tear it up and start again. We won’t allow it to look the same.”, he also apparently (I read in an account by someone who was there, you can read it here) reiterated several times that the guideline was to be replaced in full. I found this reassuring. But not long after this, he pretty much backtracked on what he said at this meeting. So my optimism is now thoroughly out the window. You can find a link to the most recent update by NICE in the news section below. I have also shared a link to the communication between the UK charity, Invest in ME Research and Professor Baker.

Included in the film Unrest, is the story of Karina Hansen, a young Danish woman with ME who was forcibly removed from her home, and her parents, and institutionalised. The authorities in Denmark believe that ME is a psychological illness, and that her parents were indulging her false beliefs that she was ill, so she was removed, for ‘her own protection’. She was kept from her family for three years, when she was allowed to return home, her ME had deteriorated. You can read the full story here. What Vicky and I also wanted to convey during the Q&A was that this was not one isolated case, this also happens in the UK, to children. There are also hundreds of cases in the UK of parents being reported to social services for the mistreatment of their children, because they have refused to force them into CBT and GET, knowing it would harm them. Tymes Trust is the only national UK ME charity dedicated to children and young people with ME and their families. You can find their website here, for more information.

So those were the main things that I wanted to share during the Q&A, which I was able to. I feel it’s important that people know about the abuse, neglect and mistreatment that we, the people with ME face. I don’t think anything will change until the general public are angry enough to help us fight this. Unfortunately, because it was almost a month ago, I don’t remember all the questions that were asked, if anyone who was there would like more information about anything please do contact me. You can contact me in the comments below, or using the Contact page, or via Facebook or Twitter. I’d also really like to hear what people thought of the film, what was going through your mind on the way home, not just after this screening, but wherever you saw it. Please share in the comments! For me, the goal of the screening was to educate people, and I left the theatre that evening feeling happy and proud. But what was more valuable for me, was that moment of feeling ‘normal’, even though it was just a few minutes, I felt like pre-ME Phoebe. I was out, dressed up, in a theatre, surrounded by people, in my natural habitat. I genuinely forgot for a little bit that I had ME, and that’s never happened to me before. ME dominates every single moment of every single day, there’s usually no forgetting. Another good thing that came out of this screening was, after the fees were paid for the venue hire and the film licence etc, it turns out we made a profit! £342! We are, or already have, donated this to the UK charity, Invest In ME Research. 😀

Again I’d like to thank my mum and Heather for organising this screening. I do think it’s probably one my biggest accomplishments since having ME, that and this blog. I’m really proud that we pulled it off, and it just wouldn’t have happened without my mum or Heather. I would like to thank Vicky for joining me on the panel for the Q&A. I would also like to thank everyone at the Eastgate for their help in making this happen, the audience who came along for the film and/or the Q&A and everyone who took part in the discussion. And of course all the people who have ME who came along, you’ll all have suffered for it, I certainly have (that’s why this post is a month late), thank you so much for joining us, and well done!

One last thing. Thank you everyone who commented on and contacted me after I published my last post. As I’m sure you realised it was a tremendously difficult thing to share, to expose myself like that (if you read it you’ll know what I’m referring to). I expected silence, or maybe even judgement, so the kind and supportive comments really meant a great deal to me. Thank you.

 

NEWS

NICE announces next steps in updating its guideline on ME/CFS.

https://www.nice.org.uk/news/article/nice-announces-next-steps-in-updating-its-guideline-on-me-cfs

Invest in ME Research. Communication with Professor Mark Baker, Director, Centre for Guidelines, National Institute for Health and Care Excellence (NICE), in regards to the upcoming review of the current NICE guidelines for the treatment of ME.

http://www.investinme.org/IIMER-Newslet-1801-01.shtml#IiMER-reply18-2

Invest In ME Research. Statement Following Preliminary Phase III Rituximab Clinical trial Results from Norway.

http://www.investinme.org/IIMER-Newslet-1802-01.shtml

Health Rising. The Cortene Way: New Drug to Be Trialed in Chronic Fatigue Syndrome (ME/CFS) Soon.

Part One. https://www.healthrising.org/blog/2018/02/08/cortene-way-new-drug-trialed-chronic-fatigue-syndrome-mecfs-soon-pt/

Part Two. https://www.healthrising.org/blog/2018/02/17/cortene-chronic-fatigue-syndrome-hypothesis/

The ME Association. A recent study from a research group at Newcastle University has found elevated BNP levels in ME/CFS associated with cardiac dysfunction.

http://www.meassociation.org.uk/wp-content/uploads/MEA-Summary-Review-Elevated-BNP-and-Cardiac-Function-in-MECFS-14.02.18.pdf

The ME Association. Two research studies recently reported similar findings relating to the autonomic nervous system in people with ME/CFS.

http://www.meassociation.org.uk/wp-content/uploads/MEA-Summary-Review-Dysfunctional-ANS-in-MECFS-24.01.18.pdf

The ME Association. A new study suggests that a blood test following exercise may be a very good way to differentiate between people who have ME/CFS and people who don’t.

http://www.meassociation.org.uk/2018/02/stanford-scope-exercise-elevates-blood-signature-difference-between-people-with-without-me-cfs-16-february-2018/

Article about ME in the current issue of Family Doctor – a publication produced by the New York State Academy of Family Physicians. Starts on page 23.

http://www.nysafp.org/NYSAFP/media/PDFs/Family%20Doctor/Family-Physician-Winter-2018WEB.pdf

BuzzFeed News. A senior Judge has suggested charging the government for every “no-brainer” benefits case it loses in court. Sir Ernest Ryder, senior president of tribunals, said the quality of evidence provided by the Department for Work and Pensions is so poor it would be “wholly inadmissible” in any other court.

https://www.buzzfeed.com/emilydugan/most-dwp-benefits-cases-which-reach-court-are-based-on-bad?utm_term=.vqgePgKO6#.uo3pa6Eoy

Post Twenty Three. Wheelchair’s First Holiday.

FYI. This is a really long post (7400-ish words). I considered splitting it in two, but it’s one story and I’d rather it be contained to one post. I know this will be hard going for those of you with ME, I always write these with our cognitive symptoms in mind, but ultimately I have to do what feels right for me. I would also like to give you a heads up that I bring up something in this post that may be upsetting for some people to read, and may be triggering to those who have experienced suicidal thoughts. I’m not writing about this for shock value, for sympathy or for pity. I simply want to be honest about my experience of living with ME, what it’s done to my mental health, and how I cope with it.

I haven’t yet shared the reason that prompted my decision to purchase a wheelchair. While my ME has been slowly deteriorating since the onset, it’s not that I had a sudden and drastic deterioration that left me with no option but to become a wheelchair user. I’m mainly house bound, and technically I guess I’m mainly bed bound, given I’m in bed for more than half the day, then I just transfer to the sofa. I think I’d accepted, and become so accustomed to this life, and my limited mobility, that it just didn’t occur to me that there was another option. It’s not even that I had previously thought about getting a wheelchair and discounted it, it honestly never crossed my mind, not once.

But then, in May last year, my favourite band, Sigur Rós, announced a series of concerts in Harpa, a stunning contemporary concert hall in Reykjavík, Iceland, between Christmas and New Year. Since I discovered Sigur Rós I had dreamed of seeing them perform in their homeland (Iceland, obviously), it’s been one of those ‘must do before I die’ things. So when I heard about these concerts of course I desperately wanted to be there. I began to wonder if I could possibly manage it, but it seemed practically impossible. The sensible bit of my brain knew I shouldn’t go, to not over-exert myself, to listen to my body, to do the wise (but depressing) thing and let it go. But then there’s the bit of my brain that is addicted to my pre-ME life, that wants to have fun, and do stuff that makes me feel happy and alive. I knew that if I decided not to go, the envy and devastation I would have felt would have impacted heavily on my mental health, which has already taken quite a battering in 2017. It was an impossible decision. Generally speaking my ME is far worse, and has much more of an impact on my life than my depression does. But when my depression has been at it’s absolute worst, there is nothing I have ever experienced that has been worse or more frightening than that. Frankly, this past year, my life has been in far more danger due to depression, than to ME. Although, saying that, I only have depression because of the life that ME has imposed on me, so it all comes back to ME in the end.

I eventually decided to put my mental health first, and make a dream come true, which, given ME has robbed me of all my dreams and goals, is something I never thought could happen anymore. As well as the concert I was also really excited about returning to Iceland. I had been five times before, and before I became ill I had even considered moving there for a while. The first time was with two friends at the end of 2013 for New Year’s Eve and I fell in love with the place. We went on a few day trips and did lots of exploring in Reykjavík. Desperate to go back I returned in September 2014 with another two friends, it was just for a long weekend in Reykjavík and was a kind of send off/celebration for my upcoming job in Antarctica. Then of course my illness took hold of me and I had to withdraw from Antarctica. With my would-have-been Antarctica departure date looming I needed a distraction, so with short notice (two weeks) I decided to go to Reykjavik for Iceland Airwaves. This is a music festival that takes place every November and I had wanted to go since my discovery of the greatness of Icelandic music (you can read more about this in my previous post Post Five. Music & Dad & ME). I had been to Iceland three times at this point but I still hadn’t seen much outside of Reykjavik, apart from some day trips, and I really wanted to explore more of the country. So, my mum and I began planning a two week holiday for June 2015. We were going to rent a car, stay in campsites and drive round the Ring Road (the road that runs around the island and connects most of the inhabited parts of the country). We had booked the car and planned our route, but as June got closer, and by this time I had been diagnosed, I realised it would probably be too much for me. So we discarded the road trip. But so I could still get an Iceland fix we went to Reykjavík for a long weekend that June instead. Before I was diagnosed, I had also arranged to go back to Iceland Airwaves in November 2015 with a friend. I did a lot of worrying in advance about how I’d manage, and while I managed less than my first Airwaves, I felt remarkably well, considering. That was my last holiday.

So this trip to Iceland for Sigur Rós was the first holiday I had planned since being diagnosed with ME. I knew it would be a bit of an experiment. My ME has deteriorated quite considerably since my last Iceland trip, so this would be a very new and unknown experience for me. I figured I would either discover that I can manage some light travelling, and it would open up more opportunities, or I would find that I was too ill to travel and to stay put in the future. It was while I was figuring out how I’d manage the practicalities of this trip, i.e getting around Reykjavík and the airports, that I first considered a wheelchair. At first I looked into renting an electric wheelchair in Reykjavík, but then that wouldn’t help me in the airports, and I really wasn’t keen on using an airport manual wheelchair, in which I would be dependent on someone else pushing me. Then I thought, if I were to buy an electric wheelchair, I could use it at home too, maybe it would help me get outdoors a bit more often. And if you’ve read my previous wheelchair posts (starting from Post Sixteen), you’ll know the rest.

Even after I had decided on the wheelchair though, and had raised the funds through crowdfunding, I still had massive doubts about the trip. I was excited, but I also felt incredibly anxious about it, and I wondered if I’d made a terrible, and expensive, mistake. I came very close to cancelling the trip on a few occasions. What sealed the deal was when the rest of the programme was announced (Sigur Rós were also curating a festival ‘Norður og Niður’ to run alongside their own concerts). There were many great acts in the programme, but there was one in particular that I was really excited about. They don’t have a band name, so it’s a bit of a mouthful, but they are three Icelandic musicians, all with successful careers as solo artists and/or in various bands, Sóley, Sin Fang and Örvar Smárason. During 2017 they collaborated together on a project in which they wrote, produced and released one new song every month, at the end of the year each of those songs would make up an album. I like their music individually and in their bands so I did anticipate that I would like their collaboration project. I was right, it’s a gorgeous, kind of melancholy, but utterly beautiful collection of songs. I also loved the concept of releasing one song per month. In what was a terribly difficult year for me, these three Icelanders gave me something to look forward to each month.

This is the beginning of the difficult bit…

I have never gone into this in any real depth, I may have hinted towards it previously, and I’ve only told a handful of people (my GP and counsellor being two of them), but I’ve yet to state it outright. Here it goes… for the last two years, I have battled with suicidal thoughts, and sometimes, it’s become more than just thoughts, I’ve made plans (and by plans, I mean DIY plans, not my Dignitas membership, which is an entirely different matter, something I’ll expand on in a later post). But, and this is important, most of the time, I don’t want to die, especially not by my own hand. It’s just that, living with ME is hard, except that’s putting it mildly, it’s hell on earth. There’s a reason why ME comes out at the bottom in quality of life studies when compared to other major illnesses (Click here to learn more). ME devastates lives, it’s destructive beyond anything a healthy person could imagine. My world is now so small and my life so limited, and I live in almost complete isolation and constant pain. Most of the time, my existence can barely be considered living. But, during a year in which my life became, at times, just too painful to bear, this music, this promise of a new track at the end of each month, was something to hold onto. That seems to put an awful lot of pressure on these musicians, which is not my intent. It’s not that I wouldn’t be here now if it wasn’t for them. If I hadn’t had their monthly musical treat to look forward to, I would have found something else. That’s how I cope with this, I’m constantly having to find something, anything, to look forward to. I force myself to find something to make this existence worth living, all in the hope that I can keep this up until science catches up, and a cure, or a treatment is found.

Anyway…

Even with this marvellous announcement, I still wasn’t sure. When I bought the two tickets for Sigur Rós (for my mum and I) I had thought that the festival events were included in the price, I was wrong (or maybe Sigur Rós could have been clearer). To see Sóley, Sin Fang and Örvar Smárason I would have to purchase a four day pass. That’s a lot of money for only one concert. Then they announced a one day pass, which was a better option of course, but, I would need to buy two, one for me, and one for my mum, who is also my carer, and I couldn’t go without her. As much as I love Sóley, Sin Fang and Örvar Smárason’s music, I couldn’t justify the cost of two day passes for just their concert. Given my ME based limitations I knew that their concert would literally be the only thing I did that day, and I couldn’t spend £150 for the two of us on top of what I’d already paid for Sigur Rós. So then, and I’m not sure what gave me the guts to do this, I’m notoriously bad at asking for help, I reached out to Örvar Smárason on Facebook and explained my situation. To my amazement, he replied to my message, and he couldn’t have been kinder. He arranged two complimentary day passes so that I could attend their concert. He didn’t have to do this, and I seriously can’t thank him enough. I would also like to mention, and thank, a very nice chap called Darren who works for Sigur Rós. I believe he runs their social media (when he’s not answering my numerous questions about accessibility). He also went out of his way to assist me and I’m pretty sure that even without Örvar’s assistance, Darren would have also made it happen. So both of them, in my opinion, are absolute stars.

So it was all decided, we were definitely going. Now that the trip was confirmed, I began planning all the other bits and pieces, and I found, to my dismay, that organising a holiday when taking a wheelchair into consideration is unbelievably stressful. There are so many obstacles, and so many questions to ask, it’s unreal. Information that should be freely available, is more often than not, not. I really had to dig, push and pretty much harass in order to get my answers. It was a pretty unpleasant and thoroughly disheartening experience. The ableism I encountered was shocking. While ME is classed as a disability under the Equality Act 2010, and I am certainly extremely disabled by my illness, I have never felt more ‘disabled’. And by that I mean, never have I felt more of a ‘second class citizen’ in my life.

Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. It is oftentimes unintentional and most people are completely unaware of the impact of their words or actions.

One of the first enquiries I made was the cost of taxi’s in Reykjavík. On previous trips to Reykjavík, on arrival, I had always walked from the bus terminal to my accommodation, or taken the shuttle bus (no longer an option as buses are now banned from certain parts of the downtown area – which is a good thing for those who live there). This time, I knew I wouldn’t manage the walk, even with the wheelchair, as my mum would then be left with both suitcases, also, the pavements in Reykjavík might too icy for the wheelchair. In the event of icy pavements I would also have to get a taxi from our apartment to Harpa for the concerts, also a very short distance, and pre-ME, easily walkable. I’m in a Facebook group for tourists to Iceland, so I asked there. I made it clear that I’d been before, that I knew the distances I was asking about were very short, but could anyone tell me roughly how much a taxi might be. Now surely the only response to that questions is either, no response, or a helpful answer. But no. This is an example of what I got…

“If the weather is good and you don’t have a lot of luggage walking is easy.”

“I would walk both trips with ‘the long way around’…Plenty to see and feel if eyes and heart are open.”

“You can walk there. It’s about ten minutes.”

Right. Not helpful. It apparently didn’t occur to these people that I was asking this question for, you know, an actual reason. I’m very open about my illness, for the sake of advocacy, but, when I write or talk about it, it’s when I choose to. I didn’t feel I should have to share my medical history to the members of this group for a simple question about the cost of taxi’s. But in this situation, to get an actual answer that was relevant to my question, I felt I had no option but to give them more information about my health than I wanted to or felt comfortable with. They had clearly made an assumption that my mobility was the same as theirs, it didn’t occur to them that maybe I had different needs than they did. It really doesn’t matter how ‘open my eyes or heart are’, that ain’t gonna cure my chronic illness. This is what ablesim looks like, and it makes my blood boil. I had many other similar encounters in this Facebook group so in the end I abandoned it as a safe place to ask questions about accessibility.

Now, the venue, Harpa. Where to start. I had expected that a contemporary concert hall, in a country known for its progressiveness and inclusiveness would be a bit better with the whole accessibility thing. Wrong. Getting information from them was like pulling teeth. In the very first email I sent them, to the box office, in which I referenced Sóley, Sin Fang and Örvar Smárason’s concert, the reply I got was this… “Is this performance suppose to be here in Harpa too?”. And that was it. Not only did they not respond to ANY of my accessibility questions, they apparently didn’t even know that this concert, for which they had already begun selling tickets/passes for, was happening in Harpa. This was the beginning of what was a mainly long, disappointing and frustrating journey with the venue. They continued to ignore my emails and only acknowledged me after I went down the route of publicly shaming them on Twitter. Even then, while they did help me out on one matter, they couldn’t, or wouldn’t, answer my questions in regards to accessibility. In the end I got the information I needed from Darren (the Sigur Rós guy).

One of the things I needed to know was where I could securely store my wheelchair during the Sigur Rós concert, which was seated. I’d need my wheelchair before and after the concert, but not during. Harpa does have a cloakroom but it isn’t staffed, it’s based on trust, which I like, but, while I was ok leaving my coat there, I was not ok about leaving my brand new £3000 electric wheelchair there. Harpa told me that there was nowhere else I could store it, so I wouldn’t be able to bring it. I refused to believe this, the building is massive, there had to be somewhere safe it could go. It was Darren who then assured me that I could bring it, and they would find somewhere for it during the concert, even if it was in the production office. I also wanted to know if there would be a wheelchair platform in the standing venue for Sóley, Sin Fang and Örvar Smárason, so I’d be able to see them. On this matter Harpa simply ignored me. Again, it was Darren who told me there would be a platform (that turned out not to be the case, but more on that later).

The communication with Harpa, or lack thereof was I think the lowest point of planning this holiday. The venue should be able to answer these questions, and it just baffles me why they wouldn’t/couldn’t. Since I graduated (from the Royal Scottish Academy of Music and Drama, if you’re interested, I studied Technical and Production Arts), and before I began working for Cyrenians (Edinburgh based homeless charity), pretty much all my jobs were in the theatre/arts/festivals industry. I’ve worked in box offices, front of house, marketing, admin, event planning and venue managing. I’ve never been in a situation where I could not, or would not, respond to an accessibility enquiry (or any enquiry for that matter), even if I didn’t have the answer to hand, I would have found it. I do wonder, after the service I received while actually there (which was good, apart from the lack of wheelchair platform, which was really bad), maybe, while they are (sometimes) equipped for disabled customers, they’re mainly just really bad when it comes to communication and customer service. Saying that, one of the lifts in the building had a chair in it, which meant not quite enough room for my wheelchair, which made that lift kind of redundant.

I had a few issues with EasyJet too in regards to my special assistance request. I was told at the time of booking that someone would contact me to get more information, such as the model of wheelchair and type of battery etc, to ensure it would be allowed on the plane. I waited, and waited, and really began to panic, what if I showed up at the airport to be told my wheelchair wasn’t allowed on the plane, what would I do then?! My efforts to contact them weren’t very successful. But I eventually got a call, less than a week before departure, and again, only after I publicly shamed them on Twitter. I’m not a fan of publicly shaming, I would never do it to an individual, but with a company with shitty customer service, sometimes it’s the only way.

Our flight was on Thursday 28th December. It was my my first time using the special assistance service at an airport, and I was pretty nervous, but I really cannot fault them. All the staff involved made for probably one of the most stress free airport experiences of my life. The special assistance guy, the EasyJet staff, security, everyone was incredibly helpful. And, importantly, for me, there was no hint of condescension or pity and they didn’t infantilise me. I was getting ‘special treatment’, but I still felt I was treated as an equal. This was also the first time I’d used my new wheelchair in such a public place, I was nervous about that too, but it was totally fine. After my bumpy experiences on the wonky pavements of Peebles, the smooth surfaces in the airport were a delight! I also found that when a crowd of people notice a wheelchair approaching, they automatically part to form a space me for me to glide through, I felt like the Queen, or Moses. I also didn’t get any funny looks, that I noticed anyway, when people saw me get up from my wheelchair and walk, which was a relief. It’s almost as though no one gave a crap about me and my wheelchair! I was able to roll right on up to the door of the aircraft where I folded up the wheelchair and put on its travel bag. It’s pretty nifty, the bag, it has long handles and allows for the wheelchair to be moved like a wheelie suitcase, using it’s own wheels. My mum and I got to board the plane first and my wheelchair was safely placed in the hold.

Oh, I almost forgot. In my last wheelchair post I’d mentioned that the wheelchair was proving difficult to fold and unfold. Despite the tutorial videos it seemed like the only way was to take the full weight of it and give it a massive shoogle, which I struggled to do given the weight of it. It turns out there’s a knack, and on my last practice before the trip I mastered it. I expect the more it got used the looser it became which made the folding and unfolding process so much easier. Phew.

It was a straightforward and boring flight, luckily I had downloaded a David Attenborough documentary about a famous dead elephant onto my iPad which kept me occupied. On arrival at Keflavík Airport we were met at the door of the aircraft by a nice man with a manual wheelchair. He wheeled me inside so we could wait in the warmth for my own wheelchair. I’m still not keen on manual wheelchairs, but I complied. Although I almost got strangled by my scarf when it got caught in one of the wheels. As the wheelchair man untangled it my mum told me the story of Isadora Duncan, the ballet dancer who died when her scarf became entangled in the wheel of a car she was riding in. I paid more attention to the dangling ends of my scarf from then on.

So that was me back in Iceland. Hooray! I then pretty much spent three days in bed. Hmm. It was definitely not the kind of holiday that I was used to. I left the apartment a total of four times. Something I constantly worry about is being judged. And this worry isn’t unfounded, I frequently have people judge and make assumptions about the state of my health based on how I look and by my activity. I’ve had people insist that I was ‘doing better’ simply because I was wearing make-up. So I can’t help but wonder if there are people in my life who think that because I went to Iceland, I must be ‘doing better’. The same people probably don’t understand the adjustments and sacrifices I had to make in order for this holiday to happen. So, to ensure no misunderstanding, I’ve provided you with a breakdown of my daily activity while in Iceland. Oh, and if you’re wondering, the only way you can know how I’m feeling, is if I tell you.

Thursday. We took the bus from the airport to the bus terminal and from there we took a taxi to the apartment. This is when we learned just how eye-wateringly expensive the taxi’s are in Reykjavík. It cost around £12 to go roughly 800m. In comparison, when I take a taxi to go to the doctor in Peebles, which is around the same distance, it costs £3.50.

Friday. The day of the Sigur Rós concert! While my mum went out exploring, and to the supermarket, I stayed in bed all day to give myself the best chance of feeling not terrible that evening. Knowing I wouldn’t mange to eat out on this holiday (I was already massively overexerting myself by being there, adding restaurants into the equation with the sensory input would have been a bad idea), and to ensure our food would be Phoebe-friendly (which means no refined carbs, no refined sugars, no refined oils, no gluten and vegan) we brought most of our own food and topped it up with fresh veg from the supermarket. After resting all day and having dinner we set out for Harpa at 7pm-ish. The pavements weren’t as icy as I anticipated so I decided to give my wheelchair its first foreign test drive. What proceeded to happen was a 300m white knuckle ride along Bergstaðastræti. I found that Reykjavik’s pavements are not so wheelchair friendly. The uneven pavements had the wheelchair veering into the road. The dropped kerbs are not dropped enough, at one point the wheelchair tipped forward almost throwing me into the road. I was close to tears by the time we reached Skólavörðustígur, where thankfully we found a taxi to take us the rest of the way. This is where my foldable wheelchair comes in very handy, it’s so easy to fold it up and pop it in the boot. Pretty much every taxi driver we encountered marvelled at it! After that stressful journey, by the time we reached Harpa I felt quite shaken, which wasn’t ideal. But we found a quiet spot and had I some time to rest and de-stress before the doors opened. Then, and I had been dreading this, it was time to find out what would happen to my wheelchair. Thankfully it was all good. There was a small room between the auditorium and the stage which could only be accessed by staff and was the perfect spot to keep my wheelchair while minimising how far I would have to walk to my seat. It went so smoothly, and the staff were so helpful, it was as if they’ve dealt with this exact situation many times before. So why the box office told me it couldn’t be done? Who the hell knows.

Now, the concert. This was my seventh Sigur Rós concert, and while they are always incredibly good live, this was by far the best I have ever heard them sound. They were just so exceptionally good. I have no idea how three people can create what they do on stage. Granted they have some backing track (on previous tours they’ve had additional musicians on stage with them, this tour has been just the three of them), but I don’t think I’ve ever seen any band work as hard as they do, especially the drummer. I mean, he can drum while playing the piano, at the same time. I can honestly say that this wasn’t just my best Sigur Rós concert, this was my best concert of all time. I’m so happy I was there. While I would have loved to stick around after the concert and soak in the atmosphere, it was time to go. I had been out for around three and a half hours, which is the longest I’ve been out, since May I think, at my mum’s birthday/fundraising party. Oh, and before we left, I saw Jarvis Cocker in the foyer, which was pretty cool.

Saturday. Again, I stayed in bed during the day while my mum went out. I had no appetite at all that day, I think I felt a lot more anxious than I’d realised about that evening’s concert, more specifically, about using a wheelchair platform for the first time. I didn’t know what the gradient of the ramp would be, so I didn’t know if my wheelchair would handle it. I also worried that I might feel on display, sitting in my wheelchair, raised above everyone else, on my own, and sticking out like a sore thumb. Anyway, we took a taxi to Harpa, and, this made me feel quite fancy, I got to queue at the VIP/Guest Pass bit of the box office! We had some time before the concert so, thanks to the guest passes, we were able to briefly explore the cordoned off areas which had some exhibits, and various other interesting and weird stuff going on, I expected nothing less from a Sigur Rós curated festival. We didn’t explore for long as I wanted to join the queue for Sóley, Sin Fang and Örvar Smárason. It would have been a right bummer if having got the free day passes to then not get access to the venue because it had reached capacity. Now, remember how I was feeling anxious about the next bit? Well, turns out I didn’t need to. There was no platform for wheelchair users. I was mightily pissed off. No equal opportunities or reasonable adjustments for the disabled in this venue! I got chatting to a woman who also planned to use the non-existent platform, and I was interested to learn from her that in the venue right next door, also standing, there was a platform. So clearly the venue had the means, and had recognised the need for it, but when it came to this particular hall, they…forgot? Thinking alike we went to the very back of the hall, in the hope we might see over everyone, that didn’t work out, all I could see were people’s behinds. I was extra glad at this point that I hadn’t paid for the two passes. I didn’t feel I could complain though, given I was there for free, and it’s not like they could have set up a platform there and then anyway. But I did expect better, someone made a bad judgement call, which resulted in disabled fans being denied the same experience as able bodied fans. Since having the wheelchair, I’m learning a lot about the world.

But on to happier things. Ultimately I was there for Sóley, Sin Fang and Örvar Smárason, and while I tend to enjoy seeing the band I’m listening too, my ears do work, so I sat back and enjoyed the music. You’ll have gathered how much this concert meant to me, and it was really really lovely. It was a shorter set than I would have liked, just six songs, but that couldn’t be helped. Again, I was delighted that I was able to be there, especially as it was their debut performance, which made it feel that bit more special. After the concert we had a little rest in the foyer and admired the view (Harpa is stunning, inside and out) while the crowds dispersed. I then spotted Örvar in the crowd, so I rolled on over to say hello and to thank him, which I was really pleased to be able to do in person. This was my last evening at Harpa and I had hoped I’d meet Darren too, to thank him for putting up with me and my ten million questions, and to put a face to the name, but it wasn’t to be.

This is kind of off topic, but, while chatting with Örvar I learned that he had previously toured with the Scottish band Belle & Sebastian, with his band Múm. Afterwards I was thinking how funny it was that Belle & Sebastian popped up in our conversation, they keep doing that. I’ve been aware of them since I was a teenager, I actually have most of their albums. But it’s only since I’ve had ME and became part of the ME community that I found out that Stuart Murdoch, the founding member of Belle & Sebastian also has ME. In fact, if it wasn’t for his ME, Belle & Sebastian wouldn’t exist. It was during his time, isolated by this illness, that he began writing songs to express what he was feeling. When his health started to improve that’s when he began to look for musicians to form a band. They formed in 1996. All these years, and I’d never known.

“To talk about ME, it’s my life story. The biggest thing that’s ever happened to me….Every song I’ve ever written is about ME.” Stuart Murdoch at an Action For ME event March 2016.

Sunday, New Years Eve. Again, I spent most of the day in bed and my mum took a day trip to see some of the sights outside of Reykjavik. I did however venture out late afternoon to meet a friend for coffee. I found a coffee shop nearby that was open (most were closed for NYE), and not wanting another anxiety inducing wheelchair experience I walked. Luckily I had brought my walking stick with me. As well as meeting my friend it was also really nice just to walk, to use my legs, albeit unsteady and weak legs. One of my favourite things to do in Reykjavik is to walk around and explore. It has some of the prettiest houses, most of them lined with corrugated iron, and painted pretty colours. So that one hour outing, with the short walk there and back was my only proper Reykjavik ‘fix’. Then of course I went back to bed and stayed there until it was time to head out for the fireworks at 11.30pm-ish. I don’t like to generalise, but, Icelanders are crazy about fireworks. You won’t find perfectly choreographed displays though, they do their own thing. They buy their own fireworks, and then they spend the night blowing them up; in their gardens, in public squares, outside the church Hallgrímskirkja, on the street, on the surface of a frozen pond… I have experienced the insanity of NYE outside Hallgrímskirkja before, but on this occasion I needed somewhere with a seat, and less crowded. So we went to Tjörnin, the frozen pond, which wasn’t far from our apartment. It was a great location to watch the fireworks from, with almost 360º views of the firework lit sky. It was so cold though, and we were both pretty exhausted, so we didn’t stay out too long. We were however treated to a continuous stream of fireworks throughout the night!

Monday. We went home. It was a fairly uneventful day, the same as Thursday but in reverse.

I’ve been home for over a month now, and I have of course had people ask me how it was, and if it was worth it, and I don’t know how to answer. It’s really hard to get excited about the good bits of the holiday, while I’m feeling so dreadfully unwell. I went on this holiday knowing, with absolute certainty that I would suffer on my return, it’s not a matter of ‘if’, it’s an undeniable fact, it will happen. Post Exertional Malaise is THE defining symptom of ME. Going off topic again, but while I’m here, the word ‘malaise’ is so misleading in the context of PEM. Malaise is defined as ‘a general feeling of discomfort’, which is not in the least bit descriptive of what I experience after I’ve over-exerted myself. PEM is a severe worsening of all my symptoms, and it’s brutal. When I think about how best to describe it I immediately think about my worst ever hangover, but combined with my worst ever flu, with the fever, the sore throat, the headache, the aching body, the overwhelming weakness and lack of strength (to the point where I cannot lift my head, my arms, my legs, my entire body), the lightheadedness. Now add a migraine to the mix, along with cognitive impairment, bladder cramps, sleep disturbance, hands that feel as though they’re on fire (Raynaud’s Disease), painful skin, painful joints, painful muscles, ice pick headaches, loss of balance, disorientation, vertigo, orthostatic intolerance and severe sensitivity to light (photophobia) and sound (hyperacusis) in which overexposure makes it feel like my brain is going to swell to the point that it’s going to burst out of my facial orifices. This maybe begins to describe how awful it is. It’s when I feel my absolute worst, and when it drags on, I wish it would kill me. It’s basically a living death, and given I can reach this point by simply washing my hair, having a conversation, or cooking a meal, of course I was going to crash (a colloquial term for PEM, payback is another one) after Iceland, and it’ll probably be a matter of months before I’m back to ‘normal’.

Last year, when I was planning this trip, I needed it to feel alive and to give myself something to look forward to. I also needed it to help me figure out my limitations. Like I said earlier, I was also treating this holiday as an experiment. Before I went, I didn’t know how I would cope while being there. But I got through what little I did by using my wheelchair when I could, I paced myself and rested between activities. I’m sure I was also, to some extent, running on adrenaline, which of course isn’t sustainable. I also didn’t know how severe, or not, my payback would be. I hoped that by making sensible choices and sacrifices my payback would be minimal, which hasn’t been the case. So while my payback has been severe, I have learned something about my limitations. If I hadn’t gone, not only would I have had some emotional fallout to deal with, I would always be left wondering if I could have managed it. Now I know.

Unbeknown to anyone else, while I was planning this trip I did have it in the back of my mind that this could be the last time I go to Iceland, or on any holiday for that matter. And based on how little I managed while there, and what I’ve experienced since I returned, I think it has confirmed it for me. If my ME continues to deteriorate, or even if I plateau at my current level of disability, I don’t think I could do it again and I don’t think I want to. I fear that I have done permanent damage to my health with this trip. Holidays are meant to leave you feeling rested and refreshed, they should not leave you feeling so unwell that you begin to compose your letter to Dignitas. But this is the basis of ME, we are punished for doing the things we love.

I also learned something that I wasn’t expecting. I thought that just being in Iceland would be enough for me, but it wasn’t. It was frustrating being in one of my favourite places, the city that I had once hoped to live in, and not be able to see it. Reykjavík was right there, being dangled in front of me, but it was out of bounds. On this occasion I had a very specific reason to be there, but there would be little point in going back to Iceland, just for the sake of being in Iceland. It seems it’s easier to cope with what I’m missing, when it’s not right in front of me. It does upset me though, if my ME doesn’t improve at all, I’ll never get to see the rest of Iceland, and that makes me feel really sad.

Saying that, however, I wanted to fulfil my dream of seeing Sigur Rós in Iceland, and I’ve done it. And for all I know these concerts could be the last they play in Iceland, I don’t know what the future holds, for the band or for me. What if I hadn’t gone, and then they split up? What if I hadn’t gone, but by their next tour my ME might have deteriorated so much that I can’t attend? It was important to me to take this opportunity, however harmful, while physically I still could, the last hurrah before ME destroys me completely.  There’s something really special about seeing a band in their homeland, and in such an intimate venue (1500 capacity, that’s small for them) and they were better than I’ve ever seen them before. That was potentially a once in a lifetime experience. I was also at the debut live performance of the music that literally kept me going last year. It meant a lot to me, to be able to go and support Sóley, Sin Fang and Örvar Smárason, as they supported me. It’s amazing that I achieved these things, and I’m SO pleased I was there.

So while I spent the majority of my time there in bed, I guess I can consider this trip a success? I met my main objectives, I managed the four things I set out to do. Although I didn’t manage the other eighteen things that I had on my wish list, had I felt well enough (in case there’s any doubt, pre-ME, I would have managed everything on my wish list, plus some). But, because of just how badly I’ve been suffering since my return, I still can’t decide if overall, it was worth it. I think, at the moment, the people who are asking are just going to have to accept my very non-committal vague non-answer, that I don’t know.  I expect, when, or if, I recover from this crash, I’ll be able to answer differently. In the meantime I’ll snuggle up in my beautiful and cosy knitted Sigur Rós blanket (Christmas present from my mum) and my wheelchair will soon be adorned with a Sigur Rós Norður og Niður patch, which will forever mark it’s first holiday, and make it the coolest wheelchair in town. I would have liked a random encounter with the band, and have them sign my wheelchair, but hey ho, we can’t have everything.

After that long read I think you deserve a treat! So here’s a link to the finished album by Sóley, Sin Fang and Örvar Smárason, Team Dreams. I hope you enjoy it as much as I do, and if you do like it, you might want to consider buying it! 

 

NEW BLOG THING!!!

At the end of each post I’m going to be sharing recent research, news, articles etc on the subject of ME, or anything related, that I think are worth reading. I haven’t posted for a while, so I have quite a few saved up.

The Independent. Time for Unrest: Why patients with ME are demanding justice.

http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html

Nature International Journal of Science. A reboot for chronic fatigue syndrome research. Research into this debilitating disease has a rocky past. Now scientists may finally be finding their footing.

https://www.nature.com/articles/d41586-017-08965-0?WT.feed_name=subjects_genetics

The Courier Mail. Australian scientists prove Chronic Fatigue Syndrome is real and have discovered a test for it. 

http://www.couriermail.com.au/technology/science/australian-scientist-prove-chronic-fatigue-syndrome-is-real-and-have-discovered-a-test-for-it/news-story/2f62ddcf2d5a625b0c1f185fc649bbf0

BBC News. I had it all – now I create a new world in a single room. As Prince’s art director, Michael Van Huffel became used to working at all times of day or night. But 10 years ago the debilitating neuroimmune condition ME left him barely able to move – since then he has had to find very different ways of making art, within the boundaries of a one-room apartment.

http://www.bbc.co.uk/news/stories-42404500#

The Independent. New Migraine Drug Hailed As ‘Incredibly Important’ Breakthrough.

http://www.independent.co.uk/life-style/health-and-families/health-news/migraine-drug-erenumab-headache-treatment-important-breakthrough-a8084181.html

Farewell – A Last Post from Anne Örtegren. Anne was a Swedish ME sufferer and advocate. She recently chose to end her life in Switzerland by Assisted Suicide. 

http://lobel.nu/anne.html

Journal of Translational Medicine. Improvement of severe Myalgic Encephalomyelitis symptoms following surgical treatment of cervical spinal stenosis.

https://link.springer.com/article/10.1186/s12967-018-1397-7

Interview with CFS/ME researcher Dr. Nancy Klimas.

https://www.cfs-me-network.com/2017/09/13/interview-nancy-klimas-cfs/

The S-Word. A blog post by Jamison Writes.

https://jamisonwrites.com/2018/01/26/the-s-word/

Post Twenty One. The Wheelchair Has Arrived.

So, the much anticipated wheelchair has arrived!

It was delivered mid-November by a very nice engineer who unpacked and put it together for me, and he gave me some basic instructions, how to use the joystick, how to charge the batteries, how to fold and unfold it etc. He also made me sit in it. This was the very first time in my life that I have sat in a wheelchair, and I was pleased to find that it wasn’t as scary as I had imagined, it didn’t feel wrong, weird, or foreign. It actually felt fine, and for a travel wheelchair, it was surprisingly comfortable.

There was however a downside. I learned that despite it being the lightest electric wheelchair in the world, it is too heavy for me to lift. This means I am unable to fold and unfold it myself. It’s around 20kg, I could easily lift 20kg before I had ME, but I guess I hadn’t quite realised just how weak I had become, or maybe I was in denial. I have tried to practice folding and unfolding it, and if I really force myself, on my ‘better’ days, I can just about manage, but only by severely over-exerting myself. So this was a huge blow, and I did feel disappointed. It means that the wheelchair won’t provide me with quite the level of independence I had hoped for, given I will be relying on others to lift, fold and/or unfold it for me. But, there’s nothing to be done about that, a lighter model does not exist, so there’s no point crying over it. The wheelchair will still provide me with the opportunity to get outdoors a bit more, and to bits of the world that have, since I’ve been ill, been inaccessible to me, and that is what matters.

It took a while before I felt well enough to get outside for a test drive thanks to a nine day migraine and being generally very unwell recently. So my first outing was around ten days ago, I went to a park near my mum’s house.  These are some things that I learned…

Going downhill is scary.

Going uphill is just about manageable, but uses a lot of battery power.

Smooth surfaces are a joy.

Bumpy/uneven surfaces are less good.

Grass is an absolute no no.

Pavements with a camber, that slope down towards the road are not good. Not unlike a shopping trolley the wheelchair kept veering to the side, towards the road. I learned that by almost flying onto the road. Luckily my quick reactions stopped me from potentially being flattened by a massive lorry.

I did feel nervous about passing any pedestrians, thankfully the only people I saw smiled at me. But it is a small friendly town, so they probably also would have smiled had I been walking. At least I hope so, I don’t want ‘pity’ smiles.

What surprised me was just how exhausted I felt afterwards. I was only out for half an hour, but I was shattered and the payback was pretty severe. It took a week before I felt well enough to have another practice.

The second practice was a few days ago…

I began in my mum’s garden, testing how it handles on a light dusting of snow. The makers of the wheelchair do advise that it should never be used on snowy or icy surfaces, but on the smooth paving slabs in my mum’s garden, with a little amount of snow, it managed fine.

It does not like gravel, it stubbornly refused to move while the spinning wheels dug holes in the ground.

I was reminded that it really does not like bumpy surfaces. The pavement in front of my mum’s house, I had thought, counted as a smooth surface. I suppose I never paid much attention when I was on foot. But the wheelchair did not like it at all. Again, it wanted to veer off onto the road. I had to take it incredibly slowly, and I really felt like I was pushing the wheelchair out of it’s comfort zone. It was also really uncomfortable for me, as my skeleton got a good shoogle, as I bumped along the uneven pavement. It struggled even more as the pavement turned an uphill corner. I ended up having to get out of the wheelchair, switch it into manual mode and push it round the corner and up the first section of the hill. Realising that going up this hill, with it’s very bumpy pavement, with a coating of snow was not going to happen, I went down into the grounds of a nearby hotel instead. Again the surfaces here were really uneven and pot-holey, I had to give up pretty quickly, and pushed the wheelchair back to my mum’s house, it was hard on my arm muscles, but it gave me something to lean on, like an incredibly expensive zimmer frame.

So that’s been my wheelchair experience so far. The first outing was definitely a success. Whizzing along the paths in the park and ending up next to the river was wonderful. Without a doubt I was able to travel further than my legs would have safely carried me. The second outing was disappointing, and I felt quite low afterwards. But I did learn something, it was educational, so therefore still useful.

My health has been really poor recently, especially with my marathon migraine. I’ve also had some emotionally draining situations to cope/deal with, completely unrelated to the wheelchair, but this too takes a huge toll on my ME symptoms. It has been a source of anxiety for me that I haven’t been able to practice with the wheelchair as frequently as I would like. Understandably I have lots of people asking me how I’m getting on with the wheelchair. And I have to respond, to the people who paid for it, that so far I’ve only had one, or two outings in it. This leaves me with a lot of guilt. That I’m letting these people down, and not giving them their ‘money’s worth’. On my second outing I began to panic and thought I would need to offer everyone a refund. My mum reassured me that the people who made contributions to my wheelchair fund did so for me, not for themselves, or their viewing pleasure. I do still wish I was able to use it more frequently, but like always, my illness dictates everything.

I think this is a good time to remind people, and myself, of something. Having the wheelchair has not cured my ME, it has not given me a new body, and I do not suddenly have more energy. It will allow me to go outdoors more frequently. But these outings will take place on the days that my mum would have otherwise visited me. So I’ll be doing pretty much the same amount of activity, in term of duration, but now, some of that activity will be able to be outdoors, rather than in my home. That, is how this wheelchair will change my life. I also have to accept that I’ll get less use of it during the winter, while it did manage ok in my mum’s garden on a small dusting of snow, I do know better than to experiment with it in deep snow, or on a sheet of ice. I will also be limited to using it on smooth pavements and paths, and it’s only now that I realise how uneven many of the pavements are in this town.

Each outing in the wheelchair for the next few months will, I imagine, be a learning curve. But even finding out what it doesn’t manage, will be useful information to have. I also need to stop looking at the difference it will make through the eyes of a healthy, able bodied person. When I do, it makes me think I’m not using it enough. But actually, the difference it will make to my life, however small it might look to someone else, will be worthwhile, and will without a doubt improve my quality of life.

Thank you again everyone who made this possible. x

 

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Post Nineteen. Time For Unrest.

Unrest image.png

“A revelation and a call to action” – The Salt Lake City Tribune

“Riveting…equal parts medical mystery, science lesson, political advocacy primer and even a love story” – The San Francisco Chronicle

Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by M.E. (commonly known as Chronic Fatigue Syndrome), a mysterious illness some still believe is “all in your head.”

In this story of love and loss, newlyweds Jennifer and Omar search for answers as they face unexpected obstacles with great heart. Often confined by her illness to the private space of her bed, Jen is moved to connect with others around the globe. Utilizing Skype and social media, she unlocks a forgotten community with intimate portraits of four other families suffering similarly. Jennifer Brea’s wonderfully honest portrayal asks us to rethink the stigma around an illness that affects millions of people. Unrest is a vulnerable and eloquent personal documentary that is sure to hit closer to home than many could imagine.

I have been awaiting the arrival of this film for some time. It has been a few years in the making but I only found out about it after watching Jen Brea’s TED talk earlier this year. Having already been screened in other parts of the world, and winning lots of awards on its way, Unrest had its UK premier just a couple of weeks ago in London. For those of us too unwell to go to our closest screening, we had the opportunity to pre-order the film online, and patiently, or not so patiently, wait for the 31st of October, the day of its release.

On Tuesday I was finally able to download it and I watched it in stages over the following three days. What can I say…

It’s beautifully made.

It made me cry and it made me smile.

I felt validated. So often people tell me how I should feel. That I have to be hopeful, that I can’t give up, that I have to believe that I’ll recover. Watching this film reminded me that everything I have felt since having ME, every emotion and every fear has been valid.

It made me feel sad, angry and frustrated. I felt moments of grief and moments of rage. I also felt understood, and grateful. I felt like I belonged, like I was part of a community, an uprising!

Unrest: a state of dissatisfaction, disturbance, and agitation, typically involving public demonstrations or disorder

The most surprising reaction I had to the film, was that I found it strangely comforting. I had thought it would be the kind of film that I would only want to watch once, that it would be too difficult to watch it on repeat. But I have already started watching it for a second time, and I think will watch it again, and again, whenever I feel a bit lost or disconnected.

My ME is not as severe as Jen’s was (while she was making this film), but it was all so familiar. The opening scene is very effective. I found myself holding my breath as I watched Jen try, with every fibre of her being, with every ounce of strength she had left, to lift herself off the floor and into bed. I’ve never, thankfully, been that disabled by my ME, certainly not for such a prolonged period of time. I have experienced that complete lack of strength, the extreme weakness in my body, when I haven’t been able to lift my head or my arms, or have lost the use of my legs. But I haven’t been as severe as Jen, in terms of, I am mainly housebound and am bedbound for at least half of the day, but Jen has been bedbound for months at a time.

When it comes to the ‘fatigue’ that people with ME experience, it’s this extreme weakness, this complete lack of strength and pure exhaustion that we’re talking about. It’s so far away from the myth that we’re ‘just tired’, I mean, it’s just nothing like being tired. It’s like referring to a hurricane as, ‘just a puddle’. It’s so insulting, not to mention factually incorrect, to conflate the two.

I’ve been thinking a lot about why we, the people with ME, have needed a film like this to come along.

It’s this idea that ME is just ‘being tired’ that drives the general perception of ME. It’s what many people think, until they get ME, or know someone who has ME. But even when you know someone with ME, you don’t really see the truth. Because when you see us, when we’re well enough for you to see us, our illness is largely invisible. You don’t see us when we’re alone at home, or in bed, so it’s easy to misunderstand, it’s easy to forget about us.

A lot of the misunderstanding is also due the damaging name, Chronic Fatigue Syndrome (CFS). If the term CFS didn’t exist, and our illness was only ever referred to as Myalgic Encephalomyelitis (ME), it would change perception immensely. The name CFS has done so much harm. It makes people think we’re just fatigued, just tired. And why would anyone spend their time campaigning for, running marathons for, signing petitions for, writing to MP’s for, raising awareness for… someone who is just tired.

The name CFS has also caused problems, in that, it’s easy to conflate the illness CFS (ME), with the symptom ‘chronic fatigue’. This confusion has had massive repercussions. So far, in the UK, the only government funded research into ME has been for psychological research. The ‘scientists’ involved believe that ME can be cured by ‘lifestyle changes’, Graded Exercise Therapy (GET), and Cognitive Behavioural Therapy (CBT). (Please read my previous post on the PACE Trial for more info.) The problem is, the participants of the trials didn’t actually have to have ME (for which the defining/cardinal symptom is Post Exertional Malaise) in order to participate, they only had to have ‘chronic fatigue’. So, the only treatments that the UK, and beyond, have to offer people with ME, are GET and CBT, ‘treatments’ which have only been trialled, not on people with ME, but people with chronic fatigue.

It is, I believe, this false notion of what ME is, that has enabled the unbelievable situation that we are in today. It has held back funding for biomedical research, it is why we have no safe or effective treatment options, no cure, no support from our medical establishments and little respect from the general public.

I can’t blame all the people for not having a thorough understanding of ME, how can any of us know everything about every illness. But, I do blame people, whether friends, family, doctors, scientists, MP’s, journalists, employers, anyone who knows someone with ME, who has a patient with ME, or a constituent with ME, who choose not to inform themselves. The people who choose apathy or blatant disbelief, despite the wealth of knowledge available online, and worse, despite what they are being told by their loved ones. These people are responsible for the decades of neglect and mistreatment that people with ME continue to face. It’s because of these people, that we have to use our precious limited energy on informing, fighting, campaigning and advocacy. These people are the reason that the film, Unrest exists. If Jen had been believed by her doctors from the beginning, she wouldn’t have had to turn her camera on herself. Her doctors only believed her, not on her word, but only once they saw visual evidence. That was the seed that planted this remarkable, and vitally important film.

This quote from the film seems particularly relevant right now…

What terrifies me is that you can disappear because someone’s telling the wrong story about you. I feel like that’s what’s happened to all of us who are living this. And I remember thinking, there’s no one coming to look for me because no one even knows that I went missing.

We need people to start listening, we need people to start telling the correct story, otherwise, nothing will change.

Sadly, a few days ago, we lost a member of the ME community. She was a wife, a mother, an active member of the ME advocacy community. I’ve shared this Ron Davis quote before, who actually features in the film, “The good news is, these patients don’t die. The bad news is, these patients don’t die.” It’s not, strictly speaking, true. Yes, it’s more common to live with ME for decades, than to die from ME, but that’s not to say ME can’t kill, it can, and it has.

I heard about her death via Jen’s Facebook page, this is what she said…

I am sad but mad as hell. When our community loses someone to this disease, my first thought is always, “someone killed you.” Because someone did. A lot of people.

Think about what Jen is saying here. Today, in 2017, we are no further forward in treating this illness than we were thirty years ago. We, the people with ME, are in the same place today that people with MS were in before the invention of the CAT scan. We have been waiting for far too long for the invention of our ‘CAT scan’ machine.

How can this be, that science is so behind when it comes to ME? It can be, because of the misconceptions that people have about ME. That’s it. It’s that simple. These falsehoods, these misconceptions have held back progress. They have fuelled the lack of investment into biomedical research. While people continue to tell the wrong story about us, while popular opinion (aided by the likes of Comedian Ricky Gervais – see trailer below) continues to believe that we are ‘just tired’, we won’t get anywhere. In order to get adequate funding for research, funding that is in line with other serious conditions, funding that will SAVE LIVES, we need people to tell the correct story. And this, is the reason I do what I do. This is why I write my blog. This is why I publicly share such personal information. This is why I approached my local paper to feature my crowdfunding campaign, not for the donations for my wheelchair, but for the opportunity to raise awareness. This is why I share every article I find about ME on Facebook and Twitter. I cannot just sit back and accept society’s neglect of us. I will continue to fight, I will continue to do everything in my power to make a difference. And after watching this film I am more fired up than ever before.

Something else that came up in the film was the loss of friends, a strange phenomenon that so often runs side by side with chronic illness. Jen said something interesting in a recent Twitter thread, it was about some of the reviews of Unrest, but it got me thinking further about the issue of fading friendships…

About half the film critics reviewing Unrest have said not it’s a “must see” but rather that it’s “a hard watch”. I’m the last person who should be speaking about the quality of my own film. But I can’t help but think what they are saying is “sick and disabled people are hard to watch”. Which is another way of saying – I’d rather look away. What I say at the end of every screening is that Unrest represents for people on this part of the spectrum, the best case scenario. And so while the world says, this is almost too heartbreaking to bear, patients say, you don’t know the half of it. It’s the height of privilege to be able to look away from pain, whoever’s pain it is. And so we are forced to package our pain, meter it, make it acceptable to others in a form that seduces or implores in just the right way. Which is the dance that EVERY oppressed group whether female, black, gay, transgender or disabled has been doing since forever. It is exhausting because there are times all I really want to do is scream.

A few of my friends have drifted out of my life since my diagnosis, and especially since I moved out of Edinburgh. Jen’s quote above made me wonder, do they, like the film critics, find me ‘too hard to watch’? I’ll never know. Because those who have removed themselves from my life have done so without a conversation, an email, a letter, an explanation. Has it been easier for them to walk away, than to face my life as it is now, to see me and my suffering? Is Jen right, is that the height of privilege, to be able to look away from other people’s pain? Have my lost friends made a conscious decision to look away? Were they so accustomed to the friendship that we used to share, that they can’t, or won’t, adapt to this new life of mine/ours? Or maybe they just don’t like me, that would be preferable actually. It’s something that I have been, and will continue to think about for some time.

What Jen said in her Twitter thread also made think about how I present myself. I use my blog to communicate, and to share. It’s my way of talking honestly about my experience of living with this illness, packaged nicely, but without rubbing it in your face. I try not to sugar coat it, but I do end up, sometimes deliberately, sometimes not, doing just that. I protect you from the most harrowing bits, I try not to come across as too negative, I word everything very carefully. Basically, I try to make my existence, my life, more acceptable to you. My blog, while it goes part of the way there, it doesn’t go into the absolute raw reality of my life, no words could, as with every other ME patient, however much I share, you don’t know the half of it.

Now, I knew I wouldn’t get through this film without crying. The first tears I shed while watching it were at this point…

It was like I had died, but was forced to watch as the world moved on. If I completely disappear and I’m in this bed and I can do nothing then it’s like I don’t even exist or that I never existed. And then what was the point of it all? Of being born in the first place? You know and honestly there are a lot of days when I just feel like I’m doing a good job by just holding it together and not killing myself. Like I’m really proud of that. And it’s not – I really don’t want to die. Like I really don’t want to die. But at a certain point it’s hard to call this living and I think the grief of all those things I might not do or see or have or…

That was Jen speaking, but it could be me, I’ve said all of these things. I’m proud of me too. I believe that anyone who can exist through this illness, with the suffering, the stigma, the disbelief, the isolation… are in possession of the most incredible inner-strength. What we live through, for years, decades, lifetimes, most (healthy) people would find unbearable for just one day. We’re positively superhuman. If I get through this alive, I’ll be so goddamn proud of myself. But if I don’t, I won’t blame myself at all. Like they say in the film, suicide is the leading cause of death in people with ME, and that isn’t shocking to me. Like Jen, I don’t want to die, but I do want to not have ME anymore. This is one of the hardest things I have faced while living with ME, the effort of staying alive. Yet, while I do my hardest every day to keep going forward, to remain hopeful, I joined Dignitas (a Swiss non-profit members’ society providing assisted/accompanied suicide). It’s kind of funny, given its purpose, but it’s my Dignitas membership that actually helps me to keep going, knowing that I have that option, one day, if I choose, it’s like my comfort blanket.

Importantly, Unrest also has a focus on those who care for us. The people we couldn’t be without. I don’t feel I’m in a place to comment in much depth, given I’m the patient, and not the carer. But I do know how hard this life can be, the life of caring for someone with ME. And when the carer is a spouse, a sibling, or a parent, etc, it can muddy the relationship a bit. It was lovely to see, despite the odd bit of frustration, i.e. the tent scene, how much Omar values and loves Jen and their marriage. From what they showed us, they don’t seem to have lost what they had before ME joined the relationship.

I think Jen, her husband Omar, and all the film’s ME participants have been extremely brave in making this documentary. I’ve been wondering if I’ll ever be brave enough to turn the camera on myself, I can’t see it happening, but then I also never expected to blog about this stuff, or end up in my local paper.

I would also like to thank Jen, Omar, everyone involved in the making of this film. It’s already making a difference. Here in the UK we desperately need the government and the NHS to start listening. We need funding for biomedical research. We need the NHS to stop prescribing ‘lifestyle changes’ which only harm, rather than help. The biggest ever investment into biomedical research in the UK came from America, the NIH! We need our own government invest in us.

One of the wonderful things that the Unrest team were able to do was arrange a parliamentary screening of Unrest. Forty three MP’s attended. We can only hope now that these MP’s will start fighting for us. Labour MP Mark Tami has already said…

This sort of stigma around ME is exactly the sort of thing we need to eradicate. Little is known about the illness and there is no known cure for it, which is probably why society appears to be so ignorant towards it.

ME is clearly a very complex condition but as a country we are not doing enough for patients who are suffering from it. This essentially boils down to funding, I therefore intend to push the Government to provide sufficient funding, and ensure this funding is adequately spent in the right areas.

This is exactly the kind of response we need from this film. I want people (the ones who don’t have ME) to have their eyes opened by the brutality/reality of what they’re watching. I want them to be amazed at the resilience of the ME patients featured in the film, against all the odds these people keep smiling and keep hoping. I want this film to educate people. I want it to highlight the dire need for treatment and a cure. I want the people who have previously dismissed ME to admit they’ve been wrong, to put that aside and to keep educating themselves and others. I want our governments and our medical establishments to stop ignoring us. I want this film to push people into action, and if it doesn’t, I don’t know what will.

 

Unrest Official Trailer

 

Jennifer Brea’s TED Talk

 

WATCH UNREST

On the big screen (in Scotland)…

Vue GLASGOW Fort, Monday 27th November, 7pm. Buy tickets here… https://www.ourscreen.com/film/Unrest

Odeon EDINBURGH Lothian Road, Wednesday 29th November, 6pm. Buy tickets here… https://www.ourscreen.com/film/Unrest

Eastgate Theatre and Arts Centre PEEBLES, Thursday 18th January, 7.30pm. Buy tickets here… https://eastgatearts.com/events/unrest/. (Particularly pleased about this screening in my own town, in the theatre I used to work in! Arranged by myself, my mum and a good friend.)

For other screenings, search here… http://see.unrest.film/showtimes/

Online…

On iTunes… https://itunes.apple.com/gb/movie/unrest/id1265409535?mt=6&ign-mpt=uo%3D4

On Vimeo… https://vimeo.com/ondemand/unrest

On Google Play… https://play.google.com/store/movies/details/Unrest?id=iTC0y4l1Jgc

On Amazon Video… https://www.amazon.co.uk/Unrest-Jennifer-Brea/dp/B075LS6ZTZ?tag=geo01-21

On VUDU… https://www.vudu.com/movies/#!overview/894864/Unrest

On Netflix… https://www.netflix.com/title/80168300?s=i&trkid=14170032

On DVD…

Unrest is coming to DVD in December. Follow this link and fill out the form to receive a notification when DVDs are on sale… https://www.unrest.film/watch/#DVD

 

UNREST REVIEWS / UNREST IN THE NEWS

ITV News: https://www.youtube.com/watch?v=7UVmIc6FKnE

BBC Breakfast: https://www.youtube.com/watch?v=ZRAM7Q2nx10

The Daily Telegraph: http://www.telegraph.co.uk/health-fitness/body/could-documentary-change-way-perceive-chronic-fatigue-syndrome/

BBC / Mark Kermode: https://www.youtube.com/watch?v=NGoK56TdNQY&t=2s

The Times: https://www.thetimes.co.uk/article/our-lives-were-frozen-by-chronic-fatigue-syndrome-rdftnm75p

The Pool: https://www.the-pool.com/health/health/2017/43/the-pool-talks-to-jennifer-brea-about-unrest-documentary

Huffington Posthttp://www.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html

BBC News / Stories http://www.bbc.co.uk/news/stories-41888146

The Daily Express http://www.express.co.uk/life-style/health/870117/what-is-chronic-fatigue-syndrome-symptoms-treatment-me-unrest

The Salt Lake City Tribune http://archive.sltrib.com/article.php?id=4867522&itype=CMSID

The New York Times https://www.nytimes.com/2017/09/21/movies/unrest-review.html?mcubz=0

San Francisco Chronicle http://www.sfchronicle.com/movies/amp/Documenting-a-disease-from-the-inside-12217878.php

Megyn Kelly TODAY https://www.today.com/video/filmmaker-opens-up-about-illness-that-doctors-told-her-was-all-in-her-head-1056956483601

Cosmopolitan http://www.cosmopolitan.com/lifestyle/a12779054/what-is-chronic-fatigue-syndrome/

Chicago Reader https://www.chicagoreader.com/chicago/unrest/Film?oid=31012439

San Francisco Weekly http://www.sfweekly.com/film/film-film/unrest/

Los Angeles Times http://www.latimes.com/entertainment/movies/la-et-mn-capsule-unrest-review-20170928-story.html

The Hollywood Reporter http://www.hollywoodreporter.com/review/unrest-review-967867

Film Inquiry https://www.filminquiry.com/unrest-2017-review/

The Washington Post https://www.washingtonpost.com/national/health-science/a-film-directed-from-bed-tells-the-story-of-woman-with-chronic-fatigue-syndrome/2017/11/24/05a42594-cec1-11e7-81bc-c55a220c8cbe_story.html?utm_term=.bae816e6532c

Rotten Tomatoes https://www.rottentomatoes.com/m/unrest_2017

Vogue https://www.vogue.com/article/unrest-documentary-netflix-chronic-fatigue-syndrome-wellness

 

Post Seventeen. The PACE Trial Scandal.

I have been wanting to write about The PACE Trial for some time, about the background, the controversy and where we are at today. I have tried, but unlike my usual posts it is very technical, involves a lot of research and there’s a lot to cover. I just don’t have it in me, with my brain fog and inability to really concentrate, it’s just too much. Luckily, this morning, a UK newspaper published a really informative and accurate article on the very subject, basically, the journalist in question, Jerome Burne, has done my job for me.

This article was in the most surprising place, The Daily Mail Online. Not only did The Daily Mail publish a good article about ME, but they referred to the illness as Myalgic Encephalomyelitis (ME), this is actually quite ground breaking stuff. Most mainstream articles refer to it as Chronic Fatigue Syndrome (CFS), which isn’t officially inaccurate per se, but CFS is, on the whole, very misleading. For the uninformed, it implies that this illness is simply ‘fatigue’, it perpetuates the myth that we are ‘just tired’. I can’t think of any other major illnesses that are named after only one of their symptoms. A symptom of Multiple Sclerosis is fatigue, but it isn’t called Chronic Fatigue Syndrome. A symptom of Lung Cancer is coughing, but it isn’t called Chronic Coughing Syndrome. A symptom of Alzheimer’s Disease is memory loss, but it isn’t called Chronic Forgetfulness Syndrome. I think you get my point.

What’s worse than CFS, is when it is referred to as ‘Yuppie Flu’. This stems from a ME outbreak in the 1980’s, when it was seemingly mainly young professionals who became unwell with ME, and the term ‘Yuppie Flu’ was born. It is derisive, outdated and offensive, yet it is still frequently used in the reporting of ME. A recent article in The Telegraph actually used ‘Yuppie Flu’ in their headline. Thankfully they changed it shortly after publication, realising how offensive it was (after a lot of complaints from the ME community). You might think that these things shouldn’t be that important, that we are using our limited energy on the wrong battles. That we (people with ME) should be grateful for any scrap of exposure thrown our way. No. These things matter. Language matters. The words we speak have meaning, and impact. When reporting, in the science section of a national newspaper, on a serious health matter, the language used should not reduce the health matter in question to a joke.

The PACE Trial (short for “Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation) is, essentially, a medical scandal, not dissimilar to the Andrew Wakefield MMR vaccine controversy. The PACE Trial has impacted on every single person with ME in the UK, and beyond. It is the basis on which the NHS ‘treat’ ME, and due to the influence of the trial’s authors, it impacts heavily on the funding of ME research, which in the UK, is poured into psychiatry, rather than much needed biomedical research. Misconceptions were already there, but The PACE Trial, and the psychiatrists connected to it have actively encouraged the media, the government, medical professionals and the general public to believe that ME is a psychological illness. That it is ‘all in our heads’, that we don’t have an intolerance to exertion but ‘false illness beliefs’, that we have somehow, collectively, all 17 million of us, falsely convinced ourselves that exertion is harmful. In fact anyone with ME could tell you exactly how exertion, both mental, emotional and physical impacts on our bodies. I really don’t understand how it could be ‘false illness beliefs’ that cause my shoulder joints and muscles in my arms to hurt, to the point of tears, after a twenty minute (hands free) phone call. The damage that The PACE Trial has done/is doing to us is immeasurable. The trial has been widely debunked, but until it is officially retracted, the damage will be ongoing, in actual fact, the damage will probably live even after it is retracted.

Anyway, back to the article by Jerome Burne. He did such a good job, and I’m incredibly grateful to him. It’s one of the best articles on this subject that I have read. I have copied the article below, with a link to the original article (just click on the headline to take you to The Daily Mail website). Throughout the article I have added some additional information, and some of my own thoughts, you’ll find these in brackets in blue text.

Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating condition is one of the most bitterly contested areas in medicine

By Jerome Burne for The Daily Mail. 15 August 2017.

Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It’s linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — ‘like a dead battery’. (Yes this is a common symptom, but not the defining symptom. The defining symptom is post exertional malaise, an intolerance to exertion, which causes symptoms to flare after the activity. ‘Dead battery’ however is a good description of the exhaustion. The exhaustion is less ‘feeling tired’, but more a severe lack of energy, or severe weakness. I have experienced tiredness previous to having ME, I’ve had insomnia and sleepless nights for years. But it never caused me to be unable to lift my phone, my head, my toothbrush…)

The condition first reached mainstream consciousness in the Eighties following outbreaks in New York and Nevada. By then it was officially known as chronic fatigue syndrome (CFS).

For a time, it seemed everyone knew someone who was affected by it, and it was derisively dubbed ‘yuppie flu’ because it seemed typically to affect young professionals.

For years there’s been a long-running and bitter debate between doctors and patients about its cause and how to treat it.

The lack of a clear physical cause meant many doctors dismissed it as all in the mind. This infuriated patient groups who insisted it was all too real and the result of an infection or immune system failure.

Even now, when it is generally accepted that ME/CFS is a genuine condition, it remains one of the most angrily contested areas of medicine. But the battle lines are no longer drawn just between patients and doctors: the medical community itself is at loggerheads.

The issue: the best way to treat ME. This has huge significance for the estimated 500,000 people in Britain affected by it. The official NHS treatment for their condition is delivered by psychologists and involves a combination of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) which involves doing a little more each day. (Interesting to see the estimated figure as 500,000 rather than the usual 250,000. I learned recently that the ‘250,000’ figure was actually estimated around 30yrs ago, so of course this number has grown.) (As well as providing little benefit, GET is actually harmful and dangerous. This ‘treatment’ has caused many people with ME to experience a severe and often permanent worsening of their symptoms, and has, in some cases, lead to death.)

The idea is that doing regular aerobic exercise would help patients a lot, but that they are held back by ‘fear’ of activity: the CBT is meant to overcome this. (Using CBT to alleviate our alleged ‘fear’ of activity is of course nonsense. I did however find CBT useful in terms of helping me to cope with this huge life-altering diagnosis.)

Many patients and doctors claimed this combination provided little if any benefit.
This dispute has now broken out into the public arena in an extraordinary fashion. Two weeks ago the Journal of Health Psychology published what was effectively an attack on the official NHS treatment. (You can find the journal online here ‘Journal of Health Psychology, Volume 22, Issue 9, August 2017. Special Issue: The PACE Trial‘)

Three editors resigned from the journal in protest at this stance. In a leaked email, one of the resigners was described as a ‘disgusting old fat neo-liberal hypocrite’ and an ‘ol’ sleazebag’ by an editor who supported the journal’s approach.

But the insults swing the other way, too — recently, a scientist described patients critical of the CBT approach as ‘borderline psychopaths’ and likened them to animal rights activists. (Remember, these are professional scientists who are referring to the very people they claim to be ‘working for’ as ‘borderline psychopaths’, simply for questioning their claims.)

The row is about a trial published in The Lancet in 2011 that helped form the official guidelines on treating the condition. This was a large trial, called PACE, involving 641 patients, costing £5 million. It was paid for by the Government and carried out by psychologists at Queen Mary University in London. (Interestingly the trial was also part funded by the The Department for Work and Pensions (DWP), the only clinical trial they have ever funded, I believe. Could it be that The PACE Trial was less ‘science’ but more a cost cutting exercise for the government? With the aim of reducing benefit and insurance claims? It is in fact not at all uncommon for the DWP to turn down disability benefit applications from people with ME who refuse CBT and GET…)

PACE found that patients being treated with the combination treatment — 14 sessions with a therapist over a six-month period — improved by 60 per cent, while the ‘recovery rate’ (which implied a ‘cure’) was 20 per cent. (It is worth noting here that the researchers changed, throughout the trial, what constituted as ‘improved’ and ‘recovered’, because they weren’t getting the results they wanted. Participants could end the trial being more unwell than when they started, yet they were still categorised as ‘recovered’. Also, they used the Oxford Criteria for diagnosis of the participants, as opposed to the Canadian Consensus Criteria. The Oxford Criteria is widely considered to be overly broad. It does not include the defining symptom of ME, post exertional malaise, rather, it lists ‘fatigue’ as the main symptom. So, did the participants actually have ME to begin with?)

“For every 15 patients selected under Oxford criteria, 14 will be false positives when compared to Canadian Consensus Criteria” me-pedia.org

(There is now an even more up to date clinical criteria for ME. The ME International Consensus Criteria, published in the Journal of Internal Medicine in 2011. This is an update of the Canadian Consensus Criteria, which was published in 2003. You can read more about The ME International Consensus Criteria in my blog post, Post Seven. Symptoms)

But a new analysis of the data has suggested that patients experience just a 20 per cent improvement, and only 5 per cent are classed as recovered. (Would a pharmaceutical drug with such low odds for improvement or recovery be approved as an NHS treatment?)

‘This has cast serious doubts on the recovery rates being claimed,’ adds Dr Charles Shepherd, honorary medical adviser to the charity the ME Association (Dr Shepherd was also a member of the Chief Medical Officer’s Working Group on ME/CFS and the Medical Research Council’s Expert Group on ME/CFS research).

‘The trust of patients has been lost. PACE needs to be withdrawn.’

In fact, patient campaigners have been claiming for years that the psychological approach is profoundly wrong because it implies the problem is the way the patient thinks about it. They consider that they’re suffering from a physical disorder.

The re-analysis of the PACE data has set the cat among the pigeons. A challenge to evidence supporting a NICE-approved treatment is unusual, not least because the data was only made available after a protracted battle by patients.

Ever since its publication in The Lancet, the PACE trial had been questioned by patient groups. They wanted to see all the data the trial had gathered to check the statistics.

For five years patient advocates and some doctors sent letters and Freedom of Information requests to the researchers — Professor Peter White (of Queen Mary University of London), Professor Michael Sharpe (Oxford University) and Professor Trudie Chalder (King’s College London) — without success.

Grounds for refusal included risk of revealing patient identities and claiming the demands to hand over the data were vexatious or a form of harassment.

Indeed, one expert witness for the researchers drew parallels between these ME/CFS ‘activists’ and animal rights groups, suggesting there was a serious risk of violence to researchers if the data was released. But then the Information Commissioner’s Office became involved and the university was ordered to cough up the data. It refused and then spent more than £200,000 to have the order dismissed.

This was rejected by a tribunal (as for the claim of threats being made, under cross-questioning the expert witness admitted there hadn’t been any). (The witness lied about the ME community threatening them. There have been no threats.)

When the trial data was finally re-analysed and checked by two independent academics, Philip Stark, a professor of statistics at the University of California, Berkeley and Professor Bruce Levine from the Department of Biostatistics at Columbia University, it ‘revealed that the study contained little evidence that CBT and graded exercise add anything to standard medical care in terms of patient recovery’, according to Professor Levin.

This was backed by Jonathan Edwards, an emeritus professor of connective tissue medicine at University College London.

‘The results of the re-analysis shows that the call for access to the PACE data for independent analysis was justified,’ he said. ‘It confirms that this study failed to provide reliable evidence for useful, sustained benefit from either CBT or graded exercise therapy.’

Sir Simon Wessely, Regius professor of psychiatry at King’s College London, has long been identified with the psychological approach. When he was asked about the data re-analysis last year, he was quoted as saying: ‘OK folks, nothing to see here, move along please.’ (He is unable, or unwilling, to back up his data, or to provide any evidence.)

He added that patients did improve and that the treatments were moderately effective. (Again, he has nothing to back up his claims.)

ARTHRITIS DRUGS MIGHT HELP

The Journal of Health Psychology gave the original researchers the right to respond to the criticisms — they said they stood firmly by their findings, and that ‘the PACE trial… along with other studies provide patients, healthcare professionals and commissioners with the best evidence that both CBT and GET are safe and effective treatments’.

But what about the ‘biological’ theories of ME/CFS and the new research published recently suggesting a link with raised levels of molecules linked to inflammation?
Commenting, Dr Alan Carson, reader in neuropsychiatry at the University of Edinburgh, said what wasn’t clear is whether a higher level of these molecules ‘necessarily make you feel worse’.

He added: ‘It’s highly unlikely it will lead to a blood test any time soon.’

Yet Professor Edwards, who has described the PACE trial as ‘poorly designed, poorly executed and inappropriately interpreted’ believes that studies are needed.

‘Here in the UK we’ve spent far too much on the psychological aspect,’ he says.

‘Understanding the biology is what’s going to lead to an effective treatment.’

Professor Edwards, a rheumatologist, has previously found that patients with ME/CFS as well as rheumatoid arthritis reported great improvement when they were treated with the powerful anti-inflammatory drugs used for their arthritis. A trial of this is now under way. (This drug is called Rituximab. It is used to treat some autoimmune diseases and some types of cancer)

Meanwhile, PACE continues to have support among psychiatrists and psychologists. It seems unlikely that it will be withdrawn, and so the struggle between the doctors and patients continues.

UPDATE: COULD IT BE CAUSED BY INFLAMMATION?

At the heart of the issue is what causes ME. Patient activists and some doctors consider it a physical disorder.

This ‘biological’ theory appeared to be reinforced by recent research from Stanford University in the U.S. that identified a new set of ‘messenger’ molecules in the blood that are part of the immune system and behave differently in ME/CFS patients. (You can read about it here ‘Researchers identify biomarkers associated with chronic fatigue syndrome severity, Stanford Medicine News Center‘)

New, sophisticated equipment allowed a team to run a very detailed analysis of the blood of 192 patients, comparing it with nearly 400 healthy people. They found that immune system messenger molecules (cytokines) that trigger inflammation and produce flu-like symptoms were higher in patients with the most severe symptoms.

An independent expert, Gordon Broderick, a systems biologist at Rochester General Hospital in New York, commented that it was a ‘tremendous step forward’.

~~~

Again, I’d like to thank Jerome Burne for writing this article. It means a great deal, and it brings me hope when ME is reported in the mainstream media in such a fair, balanced, accurate, informative and sympathetic manner. More articles like this will help to change the general perception of ME and hopefully result in this debilitating illness to be taken more seriously.

 

Further Reading

PACE Trial, MEpedia

The Making of the PACE Scandal, Centre For Welfare Reform

The PACE Trial: The Making of a Medical Scandal, The ME Association

‘No confidence’: Charities reject NICE ‘no update’ proposal for ME/CFS guideline, VADA Magazine

Getting It Wrong On Chronic Fatigue Syndrome, The New York Times

Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back, STAT News

How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma, The Conversation

James Coyne “lays waste” to PACE trial in Edinburgh, Phoenix Rising