Post Twenty Two. Reblog, an Interview with Dr David Tuller.

A while ago, I can’t remember in which post, I said that from time to time I would be highlighting other articles about ME that I think are worth sharing. This is one of those.

Anil van der Zee is a professional ballet dancer, he was born in Sri Lanka and grew up in the north of Holland. He studied classical ballet at the Royal Conservatory in The Hague before working in several ballet companies in the Netherlands and Switzerland. In 2007 he became ill after contracting a viral infection, and never fully recovered. A few years later he was diagnosed with ME.

I can’t remember how I discovered Anil’s blog, I think on Twitter, or maybe one of his posts was shared in one of the ME Facebook groups that I’m in. But of all the ME blogs I’ve come across, his does stand out. He clearly does a huge amount of research, his posts are very well informed, and educational, for ME sufferers and non-sufferers alike.

In Anil’s most recent post, he interviews Dr David Tuller, an American journalist who has been instrumental in my understanding of the controversial PACE Trial (I wrote about the PACE Trial in Post Seventeen. The PACE Trial Scandal.) A few years before I became ill with ME, Tuller covered the PACE Trial results for The New York Times as health editor. However, he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE Trial authors which resulted in him investigating the trial and its authors further after contact with others in the patient community. Tuller is sympathetic toward the cause of the ME patient community. In an article in 2015 he wrote: “In the course of my reporting, I’d realised that the disease was both devastating and widely misunderstood. People were really, really sick – some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness.”

This interview by Anil offers an excellent overview of the current political climate that we, the people with ME, find ourselves in. He has kindly allowed me to share the post here, and it is my hope that it will aid my reader’s understanding of the horrific injustice that ME sufferers face. It makes me angry, and I want it to make you angry too. Angry people take action.

 

David Tuller and the (s)PACE cake eaters, by Anil van der Zee, Published December 26, 2017

In 2015 David Tuller, DrPH, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health at Berkeley University started writing 3 very detailed blogs about the flaws of the now infamous PACE-trial. The patient community has been advocating for years, if not decades against these types of trials of Cognitive behavioural therapy (CBT) as well as Graded Exercise Therapy (GET) for ME in general as they seem to be doing more harm than good. Unfortunately they were mostly dismissed as militants and “vexatious”. They were not being heard or believed. That has dramatically changed since Dr. David Tuller started writing extensively about the subject. A real paradigm shift is happening and I’m beyond honored to have been able to meet him, photograph him and ask him a few questions.

Hi David, how are you? Thanks for letting me interview you. For the people who are not familiar with the subject, what is the PACE-trial and why is this trial such a big deal? 

The PACE trial was the largest study of “treatments” for what the investigators called chronic fatigue syndrome. The investigators claimed it “proved” that CBT and GET were effective treatments for the illness. Given these alleged findings, the trial has had an enormous impact on what is considered the standard of care in the U.K., the U.S, the Netherlands, and many other countries. Yet the study is so flawed, it includes so many violations of core principles of scientific research that its reported findings are completely meaningless.

What was the reason you decided to start writing about the PACE-trial unlike many of your journalist colleagues? Many are reluctant to write about ME in general.

I started reading the patients’ commentaries about PACE and realized that they were right about the flaws in the trial. I understood why others weren’t interested—it’s very confusing to figure the whole thing out. As a journalist, it’s great to have a topic others aren’t covering, and no one was writing about this. I felt if I started looking into it, I could have an impact on the debate.

Could you explain what the main issues were with the PACE-trial?

There were so many issues, so it’s hard to pick just one! Probably the biggest issue is that they have been very explicit in their protocol about how they planned to measure success. But they changed the main outcome measures after collecting data, and all the changes allowed them to report better results than had they stuck to their original methods from the protocol. Then they refused to provide the analyses that they originally promised to provide, so no one could tell what the results would have been had they not changed all their outcomes. When patients asked for these anonymous data, the investigators accused them of being “vexatious” and refused. They only did so after being ordered to do so by a legal tribunal.

To read the rest of the interview please follow this link to the original post, and while you’re there I’d recommend that you take a peek at his previous posts.

http://anilvanderzee.com/david-tuller-and-the-space-cake-eaters/

David Tuller’s Virology Blog. 

In the spring of 2017, Tuller successfully raised money in order to continue investigating and blogging about the PACE trial and and other issues related to ME. The funds raised went to the Center for Scientific Integrity who transferred them to the School of Public Health at University of California, Berkeley, which in turn created a position for Tuller to continue his investigative work.

To read his posts related to ME please follow this link. I’d suggest you scroll down and begin with his first post from 2011.

http://www.virology.ws/mecfs/

For a bit more background about Tuller, and for more of his articles, check out his entry in the MEpedia site.

http://me-pedia.org/wiki/David_Tuller

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 Twenty. Thank You for Funding My Wheelchair!

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Claire, Stacey, Morag, Carola, Richard, Morag, Naomi, Kate, Gavin, Heather, Anthony, Nick, Paul, Jennifer, Lorna, Rebecca, Alan, Alison, Luca, Gillian, Kathleen, Ann, Bill, Gusia, Robert, Rhona, Seonaidh, Viv, Ian, Caroline, Ann, Gary, Morag, Robert, James, Jessica, Colin, Lorraine, Dot, Natasha, Christine, Kelly, Tony, Jennifer, Kathy, Clare, Kimberly, Angela, Phil, Richard, Clara, Agnieszka, Claire, Peter, Vikki, Sandy, Abigail, Emma and Anonymous Donors x 16.

Thank you so much everyone who helped me raise the money for my soon-to-be electric wheelchair. I’m completely overwhelmed by the generosity, support and encouragement I have received over the last few weeks. It’s been a really incredible experience.

Amazingly, I met my initial target of £2795 on day 12 of my campaign! It was so quick that I couldn’t even withdraw any of the funds yet!

When I set my target of £2795, I had been planning on covering the costs of the JustGiving fees (roughly 6.5% of the total amount raised) and the delivery fee for my wheelchair (£80) myself. However, some of my friends who had intended to make a donation, hadn’t been able to yet as they were waiting for payday. They asked me, after I had met my initial target, if they could contribute to these fees. So, taking this into consideration, I decided to increase my target to £3075. Which I then met on day 22! This means I now have enough not only to buy the wheelchair, a second battery, a travel bag/cover and three years of insurance, but it will also cover the delivery fee, and the fees deducted by JustGiving.

I have now withdrawn the funds and am just waiting for them to transfer to my bank account, which can take up to ten days. Then I’ll be able to contact Careco and order my new wheelchair!

Campaign began – Saturday 14th October 2017

I reached number 5 in the JustGiving Leaderboard! This means that only 4 other campaigns on JustGiving received more donations than mine in the previous 24 hours. – Sunday 15th October

Met first target £2795 –  Wednesday 25th October 2017

Met second target £3075 – Saturday 4th November 2017

I’m so grateful for every donation. This outpouring of support has been quite overwhelming, and it has meant so much more to me than simply being able to purchase the wheelchair.

As you may know from my previous post (Post Sixteen. Wheelchair Or Not?) I’ve been feeling very nervous about this wheelchair. While the sensible part of my brain tells me this will be good for me, the anxious side feels, well, anxious. It will, I imagine, take me some time to feel comfortable using in public spaces, such as Peebles High Street. While I get used to it, in terms of how it makes me feel, and how to operate it, I’ll be practising in less public places, and this will take as long as it takes!

I will also, as always, need to be careful about my overall use of energy. Having a wheelchair will not cure my ME. I will still only be able to go out, and use my wheelchair, when I feel well enough. This might mean only once a month, sometimes less, or sometimes more frequently. I do realise that it can be confusing for people to understand that I may not be able to undertake an activity that I managed to do a few days, or hours, or weeks previously.

Basically, my body has a pathological inability to produce sufficient energy on demand. Which means I have a limited amount of energy that I can use on a day to day basis. I have to pace myself and my activity, and be very careful to stay within my ‘energy envelope’, so to speak. Oh, and to make it even more interesting, my energy levels fluctuate, so I never know when I wake up how much energy I’ll have that day. If I over-exert myself, whether physical or mental exertion, and go outside my energy-envelope, that will cause a crash, which means my symptoms will worsen, and it can take, days, weeks, or months to recover. This worsening of symptoms after exertion is known as Post Exertional Malaise, which is the defining/cardinal symptom of ME. I really wish it had a better name though, ‘Malaise’ is so misleading, and really not very descriptive of the devastating destructive brutality of this symptom. I tend to refer to it as ‘payback’, because that’s what it feels like, like I’m being punished by my body for daring to live a little.

Now, if I were being very very sensible, I would only ever live within my energy-envelope, or my baseline, as it’s also sometimes known. In theory, if I stay below my baseline, I’ll be able to live with minimal symptoms. The problem is, life within my baseline is incredibly dull and boring, and it has done considerable damage to my mental health. I need more from life than what my limited envelope of energy allows.

There are also many things that use energy that are simply outwith my control, especially emotional stress. I can control the amount of physical activity I do, but I have no control over the things that I find upsetting, from the Tories persistent assault on the poor, vulnerable and disabled, to someone I love being in an accident, to my laptop dying. The resulting emotions, thought processing and communication required to sort these things out can also take me days, weeks or months to recover from. I’m also affected by sensory input; temperature, light, noise, smell and movement. No matter how well I control my environment at home, I cannot control the outside world.

So in a perfect world I would never go above my baseline. Even on my better days I’m meant to limit my activity/use of energy, and this is incredibly frustrating. It’s so difficult to suppress my natural instinct to be active, to go outside, to be sociable, and like so many people with ME, I tend to overdo it on my better days. This pattern, the overdoing it on the better days, then paying for it for days, weeks or months after, is known as ‘boom and bust’, and it’s what I should be avoiding. But like I said, this makes life so boring, too boring for me, and it’s that, along with the isolation that this life forces upon a person, that has damaged my mental health, and as a result I am now being treated for depression.

So anyway, this has been a really long way to explain why you won’t suddenly see me out and about every other day in my wheelchair, and also why you might see me only once every few weeks, maybe enjoying Dawyck Botanic Gardens, or Haylodge Park etc. For me, at this stage of my illness, I want to use the wheelchair to enjoy the places, mainly in nature, that have been inaccessible to me for the last couple of years. The wheelchair, will hopefully allow me to take in some of these places, every now and then, but not too often, without over exerting myself so much, that I’ll suffer for it afterwards. Also, please don’t be confused or alarmed if you see me walking! I can walk short distances, and by living right in the centre of town, this means I can walk, occasionally, to a nearby shop, or Costa, and to my weekly counselling appointments, which luckily, are very close to my home.

Something that I gained from this crowdfunding experience that I wasn’t expecting, was, it helped to take the edge off my fear of the wheelchair. I was so very moved, not just by the incredible generosity, but also the encouraging and supportive comments, that I actually began to feel excited. Everyone who donated has made this possible for me, and I feel like, it’s not just me anymore who is emotionally invested in this purchase, you are too, and I can’t wait to show you what you have paid for. One of the comments on my crowdfunding page said “I’ve been trying to find another little something to send you but instead I shall buy you a brake cable or a switch or something”. I love this! I love thinking that you can all decide which bit of the wheelchair you paid for. Obviously the brake cable is already spoken for, but there are four wheels, two batteries, the joystick, and all the others bits and pieces that hold it together and make it work, unfortunately some of you will be stuck with the insurance, which is kind of boring, but still necessary.

When I first set up my campaign, I never expected to reach my target, and I thought maybe only my mum and a handful of friends would donate. I’m so touched by every single person who made a donation. My family, my friends, my family’s friends, old colleagues, classmates from school and university and people I don’t even know. It’s so lovely that there are people who care enough to help out someone they’ve never met, unless we have met and I’m terrible and don’t remember! Although, being the daughter of two teachers from the local high school, and with a rather distinctive and rare surname, means that it’s possible some of these people know of me, or my parents, or my older sisters, and we do actually have some kind of connection. Or maybe they’re just dead nice people! Which of course, all of you are, whether you know me personally or not. The loveliest thing of all is knowing, and it took a friend to remind me of this, that “it’s proof, not that it was needed, of how much you are loved and cared about”. And this came at a much needed time.

I would also like to thank a few of our local media people.

Shortly after I set up my crowdfunding campaign I approached Kris Tatum at the Peeblesshire News. For me, it was more a matter of raising awareness of ME, which as I’ve said many times, is hugely misunderstood, (please read my last post for more info in regards to this Post Nineteen. Time For Unrest) than it was to get donations. But I was delighted to find that, after my story was published, I began to get donations from these lovely strangers I’ve spoken about. Shortly after my Peeblesshire News article was published I was contacted by Ally McGilvray at Radio Borders, who kindly publicised my campaign on air and on their website. Then, I was contacted by Sarah Frances at The Southern Reporter, who also very kindly featured my story.

You can read these here…

The Peeblesshire News

http://www.peeblesshirenews.com/news/15610306.Housebound_Peebles_resident__39_s_plea_to_get_her_life_back/

Radio Borders

https://planetradio.co.uk/borders/local/news/peebles-charity-worker-makes-plea-wheelchair-leaves-housebound-two-years/

The Southern Reporter

http://www.thesouthernreporter.co.uk/news/peebles-woman-smashes-wheelchair-fund-target-1-4601029

Thank you very much Kris, Ally and Sarah for helping to spread the word about ME, and of course for all the donations that were made as a result.

And lastly, thank you to JustGiving, who provided me with the platform that made this possible. Unbeknown to me when I set up my campaign, JustGiving help to spread awareness of the campaigns on their site. Sarah at The Southern Reporter was only made aware of my story when she received a press release from JustGiving! I find that quite remarkable, that someone at JustGiving made the effort to track down my local newspaper. Absolutely worth the fees they charge!

Now that I have managed to raise awareness of ME a little bit, I would very much like, if you would like to increase your awareness even further, to bring the film Unrest to your attention. Rather than going into it here, again I’ll direct you to my previous post, in which I kind of reviewed/shared my feelings after having watched it myself.

Post Nineteen. Time For Unrest.

If you like the sound of it, I’m delighted to share with you, that you (Peebles people) will be able to see it on the big screen at the Eastgate Theatre on Thursday 18th January at 7.30pm. Tickets are now available! If we can scrounge together enough people for a panel, including me, there might be a Q&A session afterwards! For non-Peebles people, you can find details of how/where to watch it, on the big screen or at home, in my previous post (Post Nineteen).

Thank you again everyone who supported me through my campaign. It means so much to me, and I’m forever grateful. I will update you all after the arrival of my fancy new wheelchair!

PS. If you would like a reminder of the wheelchair that you have funded, here you go…

(I had previously shared a video here but it no longer seems to be available, so here are a couple of photos.)

 

Post Nineteen. Time for Unrest.

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“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 Eighteen. Crowdfunding My Wheelchair.

You may have read my previous posts about my indecision regarding buying a wheelchair…

Post Sixteen. Wheelchair Or Not?

Post Sixteen Continued… Wheelchair Or Not. An Afterword.

Well, I have decided to go for it and have given myself 30 days to raise the £2795 I need via JustGiving Crowdfunding.

This a huge, emotional and scary leap for me. But one of the things that helped me come to this decision, were the many kind and supportive comments and messages that I received in response to the above posts, it was really very encouraging and I thank you all very much for taking the time and energy to contact me. I still feel nervous about this, in fact I’m downright terrified. But I’m also a little bit excited, I very much hope that this decision will lead to a better quality of life.

If you would like to contribute to my wheelchair please follow the link to my crowdfunding page below. All contributions will be very much appreciated. And please feel free to share my crowdfunding page, if you wish to. Thank you so much, Phoebe.

www.justgiving.com/crowdfunding/phoebeselectricwheelchair

 

My future wheelchair!