Post Thirty Four. Planning For A Future With Severe ME.

It’s been a good few months since my last post, and you’ll soon find out why, I’ve had a lot going on. With so much happening, my limited brain function has had to be directed elsewhere, and my poor wee blog has been neglected as a result. I then found that the longer I spent away from my blog, the less motivated I felt to get back into it. However, I have recently been following a discussion in one of my ME support groups, it got me thinking, and it inspired me to write this post.

The discussion was about what information/advice we should share with people who are newly diagnosed with ME, which I have shared this at the end of the post. I was especially interested in what we should tell them about the likelihood of recovery.

Once people with ME reach the five year mark, recovery is unfortunately, statistically unlikely. Should we warn those who are newly diagnosed about this? Or is that too harsh for them to hear at this stage? Should we never tell anyone that recovery is unlikely? Is keeping hope alive more important than facing the truth? Does belief affect neurology? By telling someone newly diagnosed that they may never recover, are we setting them on a course of certain non-recovery? Or, is it possible to face reality, accept that recovery may not happen, but still retain hope that it could?

This is where I stand. I think people need all of the available information, however upsetting. I think living in false hope is exhausting, cruel, and ultimately incredibly damaging. I think acceptance is key. I think we need to tell people who are newly diagnosed the truth, that recovery may never happen, that they may have ME for the  rest of their lives, and they should prepare themselves for that, but, some people do recover, it is possible, so accept your reality, but also don’t lose all hope.

When I was newly diagnosed I was told by many doctors that I would recover. One NHS GP said I would recover within four years, and a private doctor even told me that I would recover within one year.

I didn’t know much about ME back then, I was naive and I believed them. I was quite sure that taking time off work and temporarily moving from Edinburgh back to my hometown Peebles (to be nearer my mum) would help me recover.

When I moved back to Peebles I decided to rent out my flat in Edinburgh. This covered my mortgage and meant that when I was well enough I’d be able to give my tenants their notice and move back and get on with my life. I was so sure that this is what would happen that I was actually really worried about what I’d do if I recovered within six months of moving back home. My tenants lease was fixed for a minimum of six months, meaning that if I wanted to move back into my flat within six months of moving out, I wouldn’t be able to. I was genuinely concerned about this, it was a huge source of worry for me at the time.

Well I needn’t have worried, as time went on I realised that those doctors were wrong. The more I learned about ME, and as my ME progressed, the more I began to understand my reality. Most people with ME who do recover do so within two years, and once you hit the five year mark, recovery becomes statistically less likely. I am now in my sixth year of ME, and so far my ME has been on a path of gradual deterioration. It seems that positive thinking and genuine belief of recovery has little effect on an actual recovery.

I wish I had been told the truth when I was diagnosed. I don’t think the doctors told me an outright lie, I think they just didn’t know, so they made an uneducated guess.

My goal is to reach a state of acceptance. Of course I want to recover, that is my biggest wish, but I cope best by facing reality. How can I reach a state of acceptance if I’m not in possession of all the facts? Knowing what my reality is, however grim, is so much easier for me to bear than living in false hope.

What I am doing now is trying to build a life for myself as I am now. For the first time since having ME I am planning for a future that includes severe ME, and I feel so much calmer now than when I was living only in hope of recovery.

When my focus was solely on hoping and waiting for recovery, my mental health suffered. Because with that hope came the constant fear that I might not recover. With that fear came a near constant feeling of nervous dread and anxiety, and a very strong desire to no longer be alive. Without acceptance, I put more time into planning my death than I did my life.

Now, my focus is on living my life with what I have, severe ME. It won’t be anything like a non-ME life, it’s not what I would have chosen, but it’s the life I have, and I want to make it as good a life as possible. Accepting my reality is the healthiest thing I can do.

To achieve this goal I recently made a huge decision, well, two huge decisions. I had to let go of my pre-ME life. I had to let go of my flat in Edinburgh. In January this year I gave my tenants their notice, and in April I put my flat on the market. It sold within three weeks of being on the market, and the new owner has now taken possession of the flat.

Now, this next thing happened very quickly. There had been a house on the market in Peebles that seemed perfect for me, but I couldn’t do anything about it until I sold my flat. So the day that I accepted the offer on my flat my mum contacted the estate agent responsible for selling the Peebles house and expressed my interest in viewing it. We found out then that a closing date had been set for four days time. In those few days I viewed it, I liked it, I panicked, I doubted, I decided it was perfect and I made an offer. My offer was accepted. Within the space of one week, I both sold a flat and bought a house!

The house is in Peebles, just outside of the town centre, but as close to the town centre as possible while meeting the rest of my requirements. It is fully detached. This has been my ultimate dream. A house with no neighbours on the other side of the wall. It’s also a bungalow, which is so much more suitable for me. I thought a detached bungalow, my dream house, would remain a dream. I never expected to find one, and in such a good location.

It will be a couple of months at least before I move in as it needs some work to make it accessible for me – widening of external door frames to allow wheelchair access, ramps to the front and back doors, knocking down a wall to make the kitchen bigger,  new and accessible bathroom, etc.

This house I hope will allow for an easier, calmer and hopefully a happier life. I won’t have the various obstacles that I do in my current home, and I’m really looking forward to living there. I never thought I’d experience that again, feeling excited for the future. I can’t promise that I’ll never feel stressed again, or have periods of feeling low or anxious, but with everything combined, this house should be as close to what I need to live with ME in as much comfort as is possible.

If I hadn’t recognised and accepted the likelihood that I may never make a full recovery, this wouldn’t be happening. I wouldn’t have been able to let go of my flat, and without the money from the sale of my flat, I wouldn’t have been able to buy this house. I would likely remain living in my current temporary accommodation, and hanging onto a state of mind that left me in constant limbo and anxiety. Nobody can thrive in that mental state.

The best chance I have of regaining some health and some function, if I ever do, is to accept my reality and plan accordingly. If I do make some improvement, then that will be a very happy and welcome surprise. Denial, false hope and superficial positivity though, while they may help some people, they don’t do me any good at all.

 

Advice to share with people who are newly diagnosed with ME.

This was written by a member of the support group who has had ME for 25-ish years. He prompted the conversation and after some discussion and a few changes this is what we came up with. I think it’s good and practical advice. Not too gloomy, but also not steeped in false hope. This is the advice I wish I had received when I was first diagnosed.

The main tip for someone newly diagnosed is that most people who recover do so within the first two years, and if you haven’t recovered in 5 years, then you are unlikely to ever recover*. The moral is: do whatever you need to do in the early years to maximise your chances of recovery. In particular, put money and ambition aside. That can wait, because if it doesn’t, you may never be able to do it again. Most people with long term ME pushed themselves in the early years. There is no way that you can do that AND recover. Take having ME very very seriously. The rest of your life depends on it. Pace yourself. Never over do it. Avoid stress like the plague.

If you haven’t recovered within 5 years, you don’t have to give up hope of recovery (it’s not impossible) but you do have to learn to live with it. That’s a different battle. Avoid stress, but remember that life is for living, so overdo it if you must, but do so with a plan. Take control of the illness by deciding when you are going to be active and when you are going to be inactive. Have a predictable weekly – even monthly – routine. Expect to be better in the summer and worse in the winter (or vice versa) and plan accordingly. Try and keep an emergency reserve for the unexpected. Have a contingency plan for when your bad days – when you can’t do anything – last longer than you expect them to. Have a contingency plan for when your best days – when you can do things with minimal cost – last longer than you expect them to. Do you take the opportunity to do even more? Or do you try to build on your success in the hope of some long term improvement?

Over the long term you will have not just bad days and better days, bad weeks and better weeks, bad months and better months, but bad years and better years. Strive to listen to your body and the rules that you have set for yourself. Contact support groups and share. You aren’t alone.

*The statistics for the low recovery rates in long-term ME were shared by ME Research UK during a presentation at the Scottish Parliament, at which he (the member of the support group who began this discussion) was present.

While searching for confirmation of these statistics we found the following…

*These statistics also appear in this report published in 2002 by the Working Group on CFS/ME, a group established by the Chief Medical Officer in 1998.

Overall, there is wide variation in the duration of illness, with some people recovering in less than two years, while others remain ill after several decades.Those who have been affected for several years seem less likely to recover; full recovery after symptoms persist more than five years is rare.”

*The same statistics were shared by The ME Association in an open letter in 2015 to ITV’s ‘This Morning’, in regards to a segment on ME.

Sadly, the prognosis for many adults with ME/CFS, especially when they have been ill for several years and not made any significant progress even with good management is poor and, as the Chief Medical Officer’s Report on ME/CFS noted in the section on Prognosis: ‘Full recovery after symptoms persist for more than five years is rare’.

 

NEWS

Stanford Medicine. Biomarker for chronic fatigue syndrome identified. Stanford scientists devised a blood-based test that accurately identified people with chronic fatigue syndrome, a new study reports.

http://med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html?linkId=66719226

CNN. He pioneered technology that fueled the Human Genome Project. Now his greatest challenge is curing his own son.

https://edition.cnn.com/2019/05/12/health/stanford-geneticist-chronic-fatigue-syndrome-trnd/index.html

Health Rising. Chronic Fatigue Syndrome (ME/CFS) Article Rocks Top Medical Journal.

https://www.healthrising.org/blog/2019/07/11/jama-chronic-fatigue-syndrome-article-tony-komaroff-unifying-model/

MDPI. Post-Exertional Malaise Is Associated with Hypermetabolism, Hypoacetylation and Purine Metabolism Deregulation in ME/CFS Cases.

https://www.mdpi.com/2075-4418/9/3/70

Health Rising. “Just Be Positive!” Toxic Positivity, ME/CFS and Fibromyalgia.

https://www.healthrising.org/blog/2019/05/01/toxic-positivity-me-cfs-fibromyalgia/

The Herald Scotland. Belle & Sebastian frontman Stuart Murdoch on ME battle.

https://www.heraldscotland.com/news/17584375.belle-sebastian-frontman-stuart-murdoch-on-me-battle/

Not The Science Bit. If you spend 20 years gaslighting your patients, perhaps you should think twice before accusing *them* of trolling *you*.

https://notthesciencebit.net/2019/03/21/if-you-spend-20-years-gaslighting-your-patients-perhaps-you-should-think-twice-before-accusing-them-of-trolling-you/

The Guardian. Rod Liddle vilifies disabled people. I’m tired of the hate. We all should be. Whether it’s ME patients or another target, huge swathes of the media have normalised hatred of minorities for years.

https://www.theguardian.com/commentisfree/2019/mar/19/rod-liddle-disabled-people-hate-media-me

Disability News Service. UN’s torture committee probes UK on ‘grim and unacceptable truths’.

https://www.disabilitynewsservice.com/uns-torture-committee-probes-uk-on-grim-and-unacceptable-truths/

Post Thirty One. A Blog Post (Mainly) About My Blog – Looking Back & Looking Forward.

My blog was fairly quiet in 2018, with only eight posts. In comparison, I published fifteen posts in 2017, and eight posts in 2016, the first one being in August 2016. My reduced output has been a result of my worsened health and my various other commitments, which all contributed to the worsened health. The majority of 2018 was spent working on my PIP application and ESA renewal (disability benefits/social security), I also spent a lot of time going back and forth to my numerous hospital appointments – two Urology appointments, two Neurology appointments, one Gynaecology appointment, one CT scan, one MRI scan, a pre-op assessment and my Endometrial Ablation procedure. I’m hoping I’ll see fewer doctors this year, although it’s currently eight days in (to 2019) and I’ve already seen one consultant and had an ultrasound – I got to spend Christmas thinking I might have breast cancer – I don’t (phew), and I’m seeing another consultant in March – Gynaecology, again. I am hoping however that I’ll be a bit more prolific with my blog in 2019, I have so much I want to write about.

Stats

I’ve been thinking about what marks the success of my blog. It’s still a baby in the blogging world, when taking the numbers into account, but I take pleasure in seeing the number of people visiting my blog increasing steadily since I began it, from the hundreds to the thousands. I now have almost seven thousand readers, and almost twelve thousand views.

I also love to see how far reaching my blog has become. It seems completely unreal that there are people reading it all over the world. My blog is being read in sixty nine countries, that’s over one third of the world’s countries! See for yourselves!

Blog countries (2)
Argentina, Australia, Austria, Belgium, Brazil, Cambodia, Canada, Chile, China, Costa Rica, Croatia, Czech Republic, Denmark, Egypt, Estonia, Finland, France, Germany, Gibraltar, Greece, Guatemala, Guernsey, Honduras, Hong Kong SAR China, Hungary, Iceland, India, Indonesia, Ireland, Isle of Man, Israel, Italy, Japan, Jersey, Kenya, Lithuania, Luxembourg, Malaysia, Malta, Mexico, Monaco, Morocco, Netherlands, New Zealand, Norway, Pakistan, Philippines, Poland, Portugal, Qatar, Romania, Russia, Saudi Arabia, Senegal, Serbia, Singapore, Slovenia, South Africa, Spain, Sweden, Switzerland, Taiwan, Thailand, Trinidad & Tobago, Tunisia, United Arab Emirates, United Kingdom, United States and Vietnam.

Feedback

While the stats do make me happy, what means the most to me, is the positive feedback, especially from the ME community. When other people with ME can identify with what I’ve written, when they tell me how accurately I am portraying the illness, when they find comfort in it, when they use it to help educate the people in their lives, it is beyond anything I expected. I am now going to shamelessly blow my own trumpet. Here is a small selection of some of the lovely feedback that I have received.

A comment on Facebook about Post Nineteen. Time For Unrest. 

“I think this is probably the best piece of writing on M.E. I have ever seen. Smiling through the tears. Thank you.”

Someone shared my blog in the Phoenix Rising forum.

“I’ve only just discovered this blog, though I imagine others here in PR will already know of it. Not read all of it by any means, but what I read is good… in the sense it conveys well how bad life can be with ME. And Phoebe, whose blog it is, conveys a good sense of her own self, and hence how ME impacts her, and from that how so many other people are impacted by ME.”

A conversation between two people on Twitter about Post Twenty Seven. No, I’m Not Tired.

Person One: “The best coverage on the subject I’ve read in years.”

Person Two: “I was thinking the same thing – it sums up the situation beautifully!”

Person One: “Faultless and extremely comprehensive. Amazing though that so many words have to be used to explain the difference between fatigue and some other experience that probably doesn’t yet exist in any dictionary: hence, the art of description is a key aspect of this author’s triumph.”

A Facebook based ME support group shared my blog on their page. 

“I have a new favourite page! Love the posts, love the eloquence, love the wide range of M.E issues it focuses on, love the wealth of information … and I also love puffins and penguins! So it’s an all-rounder, really! Phoebe, who set up and runs the page, lives with severe M.E and I know from experience how much effort, energy and passion it takes to do this kind of thing, so please check it out if you can.”

The scariest post for me to publish was Post Twenty Six. How Having ME Has Affected My Mental Health. Having known people who have accused anyone who is open about their mental health struggles as “attention seeking”, I was really apprehensive about this post, but I received so much wonderful feedback.

“I very much admire the clarity and honesty of your writing. I recognise everything you say as true…your experience which you express so powerfully. I think you are a very special woman.”

“I want to thank you for your honesty and openness in expressing how your anxiety and depression affect you. Your courage in writing this and ‘socialising it’ is very powerful. It has arrived in my world at a time when I can say that from personal experience. I don’t have ME. My son does. But what you say rings very true for me sadly and that is validating. What you feel is what you feel and it’s important that others hold that intact and with respect.”

“You brave and wonderful person, as usual you have expressed so eloquently what many of us feel.”

“What an outstanding piece of writing. I and some of my close family have suffered from (non ME-related) clinical depression and your post perfectly encapsulates the feelings, desperation and hopelessness that depression produces.”

“I read your new blog yesterday. And goodness me it is so brilliant. So many of the things you write resonate deeply with things I’ve felt. And you’re just so good at phrasing things and expressing them. Also your raw and deep honesty is remarkable.”

“It’s brilliant. Really well written and really brave to put your feelings to paper. “

“You are amazing. I think your openness is admirable. People should hear. I’m really glad you are such a strong lady and still holding out and hate that you are having such a rubbish and painful time.”

University of Edinburgh

Something very unexpected happened in 2018. Every year the University of Edinburgh ask their Medical Sciences (BSc) students, as part of their module about long term illness experience, to talk, in pairs, to someone who lives with chronic illness or disability. These students go on to work as doctors, nurses, public health practitioners, research scientists or in other health-related occupations, and they consistently say that they learn the most from this part of the course.

I volunteered to be interviewed and within my email to the course lecturer I included a link to my blog. She replied to tell me that they actually had enough volunteers with ME, but she had read my blog, and thought it would make perfect study material for the module! As a result, my writing and experience reached all sixty students undertaking the course, and was discussed in class.

The class was in October, and I still feel amazed and honoured that my experience of ME was used in the teaching of the next generation of medical professionals, at least in this little corner of the world.

Borders General Hospital

I have been working on a post about my encounters with health professionals since having ME, both the good, the bad, and the downright disgraceful, but in the meantime, here’s one positive encounter I had with a doctor in 2018.

It was at my pre-op assessment appointment for my Endometrial Ablation. I always feel apprehensive about these appointments because I never know how they will react in the face of ME, I have no idea if my needs will be taken seriously, or mocked, or belittled, or just disregarded.

The doctor I saw was young, and, hold onto your seats, the first thing that came out of her mouth, was an apology, for not knowing much about ME. She told me it wasn’t covered at all at any point during her education/training. She asked me if it was ok to ask me some questions about my ME, and ME in general, because she wanted to learn. I was amazed and astounded. This so rarely happens. I have seen health professionals who haven’t heard of ME, or they have heard of it but know nothing about it, or they have heard of it but everything they think they know about it is incorrect, and whichever of these camps they fall in, they are rarely willing to learn from the patient. So I told her. I also gave her a card for my blog – I have some business-type cards for my blog which I always have on me – and I recommended that she watch the film Unrest on Netflix. She told me at the end of the appointment that she was going to spend the next weekend reading my blog and watching Unrest. Result! That’s one more doctor in the world who has a clue about ME.

What’s In Store For Me In 2019

I am hoping that this will be a better year, in terms of my health, blog output, benefits and stress levels, but I do have some big stuff about to happen.

I am planning on selling my flat in Edinburgh.

I moved out in August 2015 and have been renting it out since then. The plan was that the rental income would cover my mortgage, and I would eventually be well enough to move back in and get on with my life. I have now realised that this is not going to happen, the getting better, certainly not anytime soon. What I need to do, is to try and live as comfortably as possible, as I am, with severe ME. This means buying somewhere more suitable to live in Peebles and in order to do that, I have to sell my flat.

I have now given my tenants their notice, which I feel horrible about, I hate to be uprooting them, they’ve been good and hassle-free tenants, and when their tenancy ends, I will be putting my flat on the market. This has been a massive and terribly painful decision. When I moved out in 2015, it did not occur to me for one second that I would never move back in. Now, because I won’t manage the ninety eight steps up to my top/fifth floor flat, I’ll never even set foot in it again, not even to say goodbye.

I was so sure when I moved back to Peebles that it would only be temporary. I was even worried about what I would do if I was well enough to move back in within the first six months of my tenants lease, because within those six months, their tenancy was safe, it wouldn’t have been legal to kick them out. That’s how sure I was that I would recover. As sad as it is to think back to that time, I guess it definitively proves that ME cannot be cured by positive thoughts! Because back then, I absolutely positively thought I would get better, within months.

So anyway, this is big and scary decision, and it’s going to be a stressful few months, what will make it especially stressful for me, is that I have to trust other people to do everything for me. Relinquishing control will not be easy for me, actually, it will be excruciating, but I have no choice. Getting it ready for the publicity photos, the viewings, the packing, the removal of my furniture, all of it, will be outside of my control, which makes me feel sick.

I do however think that this decision perhaps signifies my acceptance of this illness, and my reality. The cottage that I live in now was only ever going to be temporary, and I’m now preparing for the long-term, the house that I will live in for as long as I have ME. If I do however get better, then I’m outta here! Peebles is a lovely town, but it was never where I imagined, or hoped, that I would spend the rest of my life.

I have also set a goal for myself this year. Partly because of a new rather annoying symptom in which I am sensitive to scents (in perfumes, soap, shampoo etc) and because I want to ensure that my presence on earth is doing as little harm as possible, I am planning on replacing all of my household cleaning products, toiletries and cosmetics with cruelty-free, unscented and preferably plastic free brands. I will be using up the items I already own, that I can tolerate, in terms of scent, because I don’t like waste, but I will slowly be replacing all of these products throughout the year.

This year I would also like to streamline my supplements. I want to be sure that the supplements I am taking are necessary, and I want to know if there’s anything I should be taking that I’m not. So I’m hoping to find a good, ME knowledgeable Nutritionist who is either local to me, or can do email/Skype consultations. If anyone can recommend someone, please let me know. Also, for ME people only, if there are any supplements you take that you think I should know about, please do let me know. I already take a few of the typical recommended supplements for ME people – CoQ-10, Acetyl L-Carnitine, L-Theanine, D-Ribose and B12, amongst others.

Now, this goes for all of you and for me, please remember that I have severe ME, this means that I may not be well enough to be successful in these goals, and I reserve the right to not meet them, and to not feel disappointed in myself because of it!

Finally, and slightly depressingly (not Brexit, although that is thoroughly depressing too), this year, on 28th February I will be “celebrating” my five year ME anniversary. While my more obvious ME symptoms didn’t start until late-summer in 2014, my first symptom, the one that started this whole thing, appeared late that night. I actually shared something on Twitter recently about how long I’ve had ME for, and someone commented saying she didn’t realise I was such a newbie, given how knowledgeable I am. This was really lovely to hear, especially from whatever the opposite of a ‘newbie’ is, ‘oldie’ sounds rude, but someone who has had far more experience of ME than I have.

 

NEWS

American Society of Hematology. Erythrocyte Deformability As a Potential Biomarker for Chronic Fatigue Syndrome.

http://www.bloodjournal.org/content/132/Suppl_1/4874?sso-checked=true

Health Rising. Could Poor Microcirculation Be Causing Chronic Fatigue Syndrome (ME/CFS)?

https://www.healthrising.org/blog/2018/12/04/capillaries-microcirculation-chronic-fatigue-syndrome-me-cfs/

Taylor & Francis Online. Genome-epigenome interactions associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

https://www.tandfonline.com/doi/abs/10.1080/15592294.2018.1549769?journalCode=kepi20&#.XAkeXL7haSg.twitter

ME Research UK. Visual aspects of reading performance in myalgic encephalomyelitis (ME).

http://www.meresearch.org.uk/our-research/completed-studies/visual-aspects-of-reading-performance/

Frontiers. The UK ME/CFS Biobank: A Disease-Specific Biobank for Advancing Clinical Research Into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

https://www.frontiersin.org/articles/10.3389/fneur.2018.01026/full

Health Rising. Ten Ways to Prove That Chronic Fatigue Syndrome (ME/CFS) is a Serious Illness.

https://www.healthrising.org/blog/2018/12/07/ten-ways-prove-chronic-fatigue-syndrome-serious-illness/

Cosmopolitan. 9 Rounds of Electroshock Therapy. 6 Years Lost. All Because Her Doctors Got It Horribly Wrong.

https://www.cosmopolitan.com/health-fitness/a25362145/electroshock-therapy-misdiagnosis/

Health Rising. Death in Chronic Fatigue Syndrome (ME/CFS) – What has it Told Us? The Autopsy Files.

https://www.healthrising.org/blog/2018/12/12/death-chronic-fatigue-syndrome-me-cfs-autopsy-files/

Presentation on ME/CFS from the OMF-sponsored Second Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University: Jarred Younger, PhD, of the University of Alabama at Birmingham on “How brain inflammation causes ME/CFS.”

Transcript: https://www.omf.ngo/wp-content/uploads/2018/11/EDITED-Jarred-Younger-How-Brain-Inflammation-Causes-MECFS.pdf

Watch: https://www.youtube.com/watch?v=8XrdSlpUQTE

Health Rising. Deconditioning Denied: Could a Large ME/CFS Study End the Deconditioning Myth?

https://www.healthrising.org/blog/2018/12/16/deconditioning-denied-chronic-fatigue-syndrome-deconditioning-myth/

Nick Brown’s Blog. Have scientists found an explanation for the onset of ME/CFS? 

http://steamtraen.blogspot.com/2018/12/have-scientists-found-explanation-for.html

Simmaron Research. The Probiotic Paradox: When Probiotics Fail or Even Do Harm – an ME/CFS Perspective.

http://simmaronresearch.com/2018/12/probiotic-paradox-probiotics-fail-even-harm-mecfs-perspective/

US National Library of Medicine. Peak Oxygen Uptake in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Meta-Analysis.

https://www.ncbi.nlm.nih.gov/pubmed/30557887/

Health Rising. Ten Ways To Prove That Exercising Will Not Cure Chronic Fatigue Syndrome (ME/CFS).

https://www.healthrising.org/blog/2018/12/28/ten-ways-prove-exercising-not-cure-chronic-fatigue-syndrome/

Valerie Eliot Smith. Changing the narrative #1: exploring a new approach to strategic communications in the ME community.

https://valerieeliotsmith.com/2019/01/07/changing-the-narrative-1-exploring-a-new-approach-to-strategic-communications-in-the-me-community/

Frontiers. Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning.

https://www.frontiersin.org/articles/10.3389/fped.2018.00412/full

Post Twenty Six. How Having ME Has Affected My Mental Health.

I would like to warn you that this post may be triggering to those who have experienced suicidal thoughts.

I feel like this post is a bit all over the place. I’m currently struggling to put my thoughts in order, and I keep going back for further edits. I have so much to say, and so much I’m scared to say, but I feel that it’s important to be honest about how having ME really affects me. I often feel I’m a failure for succumbing to depression since having ME, but the more I share, the more I hear from others who are in the same situation, and that makes me feel like I’m maybe not quite so crazy after all.

I’ve become used to sharing details about my life with ME, and I want to become used to sharing details about my depression and anxiety too. They all have stigmas attached, they needn’t and they shouldn’t, but they do, and the only way I can see to remove the stigmas attached to these illnesses is to normalise them, and that means talking about them, and how they affect me. I love what Geroge Monbiot said in a recent-ish article in The Guardian about his prostate cancer diagnosis…

“There are, I believe, three steps to overcoming fear: name it, normalise it, socialise it. For too long, cancer has been locked in the drawer labelled Things We Don’t Talk About. When we call it the Big C, it becomes, as the term suggests, not smaller, but larger in our minds. He Who Must Not Be Named is diminished by being identified, and diminished further when he becomes a topic of daily conversation.”

I love that, “name it, normalise it, socialise it.”. I think that can be applied to ME, depression and anxiety, and any stigmatised illness. The attached stigma, the misunderstanding, the shame, the mystery, will diminish when it becomes a topic of daily conversation. So I plan to do that, here and in person, no matter how uncomfortable people are to hear it.

It’s not at all uncommon for people with ME to develop depression and/or anxiety. I always feel quite amazed when I hear from someone with ME who hasn’t had it impact heavily on their mental health. I would be one of those people if I could. But just as I can’t ‘just stop’ having ME, I also can’t ‘just stop’ having depression or anxiety. This seems to be a difficult concept for some people. They can say they understand, but then their lack of understanding can jump out at me during conversation. When talking to people about how my depression or anxiety is affecting me, I’ve been told “you just need to not let it upset you” or “you just need to stop worrying about that”. But would the same people say, about my ME symptoms, “you just need to not let that migraine hurt your head”? I don’t think so. ME gives me symptoms. Depression and anxiety also give me symptoms. That’s how it is.

Right now, one of my main obstacles (symptoms) is, what I call, the nervous dread. It’s the feeling of fear that I often get, and is the exact same feeling that I had as a child when I woke up terrified after a nightmare, except now, the nightmare is my life, and the feeling can last for days at a time. What comforted me as a child, when I woke up after a nightmare, was to crawl into my mum and dad’s room, make a little nest on the floor with my quilt and go to sleep there. That helped me because I knew I was safe, that I had someone looking out for me and that I wasn’t alone. This feeling of dread is often how my anxiety and depression manifests, and I (and my counsellor) believe that it basically stems from the same place, the fear of being alone, forgotten or abandoned. I don’t just mean the literal isolation that I live in, or the fear of being abandoned and forgotten by the people in my life, although that affects me deeply too. I’m also talking about the general lack of understanding about ME as a whole –  the lack of funding for biomedical research, the lack of support from our healthcare providers, the lack of recognition by our governments and our media that ME is a serious, disabling and life-threatening illness – this too all makes me feel abandoned and forgotten, invisible.

It’s not just ME, depression and anxiety are vastly misunderstood illnesses too. I used to be one of the people who didn’t fully understand depression, but I’ve never disbelieved anyone. When someone told me how their depression affected them, I can’t say I always understood it, but I believed them, because why on earth would someone lie about that? I’ve had people confide in me about suicidal feelings, before I ever felt such things myself. The first time I had no idea what to say, I just had to wing it, I sensed that my friend needed to talk, so I let them talk. I think, I hope, I handled it sensitively. I always think about what my words mean to others, I never want my words to hurt anyone. Importantly, I didn’t tell them how they should be feeling. I never tell people what they should feel, people tell me what I should be feeling, a lot. When I tell people about my fear of never being well again, for example, I’m told I should be more positive and feel hopeful. Why? Why, for a moment, can I not just feel what I feel? Are people with incurable illnesses, who are unable to live the life that they want, who have had everything stolen from them, never allowed to feel despair, or grief, or sadness, or frustration, or anger? Sometimes it seems, apparently not, and when we do, we must keep it to ourselves.

I have a huge amount of fear about never being well again. I do not want to live the rest of my life as I am now. Most of the time I keep it to myself, but sometimes I want to talk about it, and cry about it, I want to be able to talk about what scares me. But more often than not I’m met with ‘but there will be a breakthrough one day’ or ‘they will find a cure’. Really? You know that for sure? You’re 100% certain about this? The fact is, not all illnesses have cures. Not everyone who gets ill, gets better. People die from illness all the time, sometimes quickly after an aggressive illness, sometimes slowly, after decades of a malingering chronic illness. To reach some sort of acceptance about my life with ME, I need to accept all the possibilities, and one of them is never getting better. To be shut down when I try to talk about this only adds to my isolation, and loneliness, and as a result, my depression worsens.

When people insist that I will get better, it can be really hard to hear, it makes me feel so much pressure, because if I don’t get better, then somehow it must be my fault. I would love it if people, when saying this, would also acknowledge, in the same conversation, that I might not get better. Being hopeful is fine and good, but also be realistic, acknowledge my life, don’t erase me, my suffering or my fears. No one knows if I will recover or not, no one. It’s entirely possible that I will not, and when I talk about that, it’s my attempt to try to normalise it, to accept this, it doesn’t help to then be shot down. Once I’ve accepted it, then I can work on making my life, as it is, as meaningful and fulfilling as possible. I cannot spend my life clinging on to a potentially false certainty that a cure will be found, because if that doesn’t happen, I won’t be able to handle the devastation. I’d much rather learn to live my life, as it is, as well as possible, and one day, hopefully, maybe I’ll be surprised with the news that there is a cure, or a treatment that works, but I cannot pin all my hopes on that, it’s simply too much pressure for me to cope with.

How I feel (mentally) is often, unfortunately, and unhealthily (I think), at the mercy of other people. My illness has caused a lot of the people in my life to drift away. I’ve been left with very few people I feel close to, and I’m constantly worried about losing them too. Because of my anxiety, and due to living in this bubble, with too much time to think, any perceived (by me) slight from one of these people is magnified by a million, I obsess over it, to a scary degree. If I extend an invitation to someone to visit me, for example, and it’s ignored, the reasons why will consume me. My paranoia will take hold and it will eventually lead me to a very dark place. But it is important to state that no one is responsible for me feeling like this, it’s not even me, it’s the illness. I don’t want anyone to feel they have to distance themselves from me, for fear of triggering my mental health problems. My depression and anxiety will find a way, when they want to, and they often do pop up with no obvious trigger whatsoever.

People are also what I need, when I’m at my lowest, in order to survive. I can’t speak for everyone, but, there’s this myth that you can’t speak about suicide to someone who has suicidal feelings. Like, if you mention it, it will suddenly give them ‘ideas’, but the thing is, those ideas are already there. The word ‘suicide’ itself, does not make me suicidal. I only feel that way when my depression is at its worst, at the moment, it’s happening roughly twice a month (I think severe PMS may play a part). The rest of the time, I can feel low, without feeling actively suicidal, but I do spend a lot of time thinking about my own death, and hoping for a natural death, my escape from ME. When I am thinking about doing it myself, and wishing I had ‘the guts’ to do it, it becomes overwhelming, and what helps me get through it, is talking about it, in that moment, that’s what generally diffuses it. Sharing how I’m feeling, however ugly, scary, upsetting or uncomfortable, with someone who cares about me, whom I trust, who can make me feel less alone, is what helps me through it. I think people worry that they won’t know how to respond, that they won’t have a solution, that they won’t know how to ‘fix me’. But they don’t need a solution, I’m not asking for a solution, or to be ‘fixed’. Just be there, just listen, just let me talk about how I feel, tell me you’re here for me and that I’m not alone, let me cry, let me feel I’ve been heard, tell me that what I’m feeling is ok and that you understand. I need people who will willingly give me their time, who will accept me and all the elements of my personality that make me ‘me’, people who can be patient with me, especially if I need to go over and over the same conversation, people who can be kind to me when my depression and anxiety are making me be unkind to myself.

Ultimately I try to remember that when I feel this way, I must not make a permanent decision based on what is likely a temporary feeling. With that and the fear of it going wrong and ending up worse off, and the thought of someone having to find me afterwards, is what has stopped me so far. But it’s an incredibly painful battle each time, it’s the worst thing I’ve ever experienced in my life.

What I just said about needing people to accept me and all of the elements that make me, ‘me’. This would include not telling me, when I’m in a pit of depression or an anxiety spiral, that I’m ‘too sensitive’, for example. I am a sensitive person, but I’ve come to learn that that’s not a bad thing. I’ve grown up with people telling me that I’m ‘too sensitive’, and it’s always come across as accusatory, or derogatory, so I used to think it was something to feel ashamed about, that it made me weak. But this is actually a really important part of who I am, and I wouldn’t change it. I’m able to tune into and understand my feelings, and it helps me tune into the feelings of other people too, it’s what gives me empathy. I would like it if this sensitivity didn’t impact as heavily on my anxiety and depression as it does, and this is something I am working on with my counsellor. For example, I’m very sensitive to how my actions affect others, when I find out that I’ve hurt someone, it hurts me, deeply. My anxiety will then take hold of me, I’ll agonise over it for days, weeks, months or years (I can still feel anguish over things that have happened decades ago), and it won’t let me move on until I have resolved it. It’s exhausting, it prolongs the upset, it keeps my body in a constant state of fight or flight, and that impacts heavily on my ME symptoms.

I asked my counsellor recently, in desperation, how I could stop letting things that upset me, upset me. This led to a conversation that actually resulted in me feeling a lot better about who I am. I can’t just change the things that make up the elements of who I am, and I certainly wouldn’t want to erase my sensitivity completely, not if it meant losing my empathy. I like empathy. I think it’s a highly admirable quality, and it’s the quality I value the most in others. I’m not suggesting that I’m better than anyone else, or anything. But I have always considered what my actions, or my words might mean to another person. One of my faults is that I tend to expect the same from others, and I judge them for not living up to my high standards, and the only person who gets hurt by that, is me.

Anyway, It’s not surprising how frequently people with ME develop depression and/or anxiety. We’re grieving for everything that we’ve lost, and the grieving process works the same way whether it’s due to the loss of a loved one or the loss of your health. I’ve grieved for people, I know what that’s like, I still feel pangs of grief when I think about my dad. When it’s unexpected, like when I come across an old photo, or I have a dream about him, I get a jolt of emotion that rushes through me, often picking up other memories and feelings on the way. I can think I’ve been doing ok, in terms of my dad grief, but I can very quickly turn into a panicked sobbing wreck when triggered unexpectedly. And he died ten years ago (it was ten years on 4th June). I’m still a newbie in the ME world, four years in, and I’m still very much dealing with the loss of my old life, and the loss of everything that I thought my life could become. I can be having an ok day, where, despite the sheer shittiness of my illness, I can be feeling fairly calm and content with what little I have. But then, BAM, something comes along that triggers the grief and throws me off course. I’m talking panic attacks, hyperventilating, the nervous dread and when it becomes too overwhelming, and when I feel that I’m dealing with it alone, suicidal thoughts. Sometimes the grief makes me curl up into a ball and just cry and cry, sometimes I just want to tear the room apart with pure rage and anger, sometimes it just renders me numb, flat, completely emotionless, and sometimes it makes me want to die.

For a while I really thought I was doing so much better, in terms of accepting my illness. But I’m not doing well, not at all. It’s kind of been compounded recently due to the payback I’ve been suffering since Iceland and also with my current PIP (Personal Independence Payment – a UK disability benefit) application. At the moment I’m trying to cope with the knowledge that this particularly bad relapse is probably due to my own decisions. The trip to Iceland to see Sigur Rós, going to my mum’s house for three hours to spend time with my family for a belated Christmas celebration only four days after returning from Iceland, then the screening of Unrest just thirteen days after that. The trip was at the end of December, and I still haven’t returned to my pre-Iceland levels of ME, and I don’t know when or if I ever will. Some ME relapses are permanent, and right now, I’m trying to deal with the fact that I may have done this to myself. This has caused what I can only describe as a shitstorm of emotions and symptoms; grief, anger, guilt, hopelessness, anxiety spirals, panic attacks, and suicidal thoughts. All of this emotional over-exertion of course impacts on my ME, and causes those symptoms to worsen. When this happens I wish I could talk my way out of it, but I just can’t. It’s actually entirely rational, to grieve over the loss of ones own life, whilst still being alive. I do believe that feeling these feelings will help me on my way to acceptance, more so than repressing them anyway.

My PIP application. I’ve put this off since 2015, my first attempt was just so traumatic, but I need the money, and I am eligible, it’s just a matter of convincing the people at the DWP. I haven’t received the ‘How your disability affects you’ form yet (I requested it two weeks ago) but in the meantime I have been preparing for it. This means I’ve spent a lot of time thinking, in depth, about how my illness affects me, which is the exact opposite of how I usually try to cope with this. I’ve lost my independence and my freedom, I do not live my life as I want to, I don’t even live where I want to. My entire life is now entirely about compromise and adaptations, based around my ME. I’ve made so many adjustments to my life in order to manage my illness. I’m used to the fact that I now only wash once per week, rather than once per day, as I did pre-ME. I’m used to the fact that I only eat twice per day, rather than three times per day, as I did pre-ME. I’m used to the fact that I can’t leave my house every day, as I could pre-ME. My day-to-day life is now built around my limitations, and sometimes, I feel quite proud of the way I’ve adapted. My life now, while completely unrecognisable when compared to my pre-ME life, is simply, my life. It is what it is. But now, as forced by my PIP application, I have to really think about how my illness affects me, and not in a ‘I’m proud that I’ve adapted’ kind of way, but in a ‘bloody hell this is thoroughly depressing, my life is total shit, I can hardly do anything anymore’ kind of way. I used to manage sixteen hours of non-stop activity during a day, now I struggle after fifteen minutes of activity. My capacity for doing stuff is now around 10% of what it was before I was ill. When writing it down for my PIP form, and explaining why I can only wash once a week, and how it affects me, it’s nothing to feel proud of, it’s depressing. When I write about why I can only prepare two meals per day, it’s depressing. When I explain why I can’t leave the house every day, it’s depressing. I expect this has a lot to do with the current state of my depression.

I mentioned the isolation. This is a huge factor in the state of my mental health too. I’m an introvert, I enjoy my own company and before ME came along, solitude was a choice for me, a luxury, even. But my depression and anxiety have turned me into someone who fears to be alone. When I get this nervous dread, I panic at the thought of having a day without human company. But I also have severe ME, so I don’t have energy to interact with humans every day, when I do, my ME symptoms worsen. So it’s a constant unwinnable battle between my ME and my mental health. Even with my introverted tendencies, I/humans need interaction with other humans, real life interaction. Social media is great, but it doesn’t compensate for the lack of real people in my day-to-day life. Add in the fact that I spend my days in the dark, because I’m sensitive to light. I also spend my days in an artificial silence, always wearing either noise cancelling headphones or ear plugs, because I’m hypersensitive to noise (and I currently have some rather loud neighbours, human and canine). I’m either huddled alone in bed, or alone on the sofa. Maybe I could cope with it a bit better if I could get lost in a book, but I have brain fog, I can no longer follow a story line, I can’t retain or process new information. I tried audio books but I can’t cope with them either, I simply don’t possess the required levels of concentration, my wreck of a body cannot produce the energy needed. Who knew, before I had ME, that reading, something I did every day, getting through roughly one novel per week, could one day be an impossibility. I have loads of TV shows and films in my Netflix and Amazon Prime watch lists, but at the moment I can only watch what I’ve seen before, because I can’t keep up and follow new story lines. I have a few TV shows that I keep on reserve for easy watching –  Grey’s Anatomy, The Big Bang Theory, 24, Parks and Recreation, Gilmore Girls, Little House On The Prairie, Gossip Girl, Friends… Re-watching these shows, as well as helping me to pass the time, I find it comforting, the familiarity of the characters. It’s the closest thing I have to going to work with the same people every day.

I’ve mentioned before that I’m a member of Dignitas (a Swiss non-profit members society providing assisted/accompanied suicide to members of the organisation who suffer from terminal illness and/or severe physical and/or mental illnesses). Dignitas, for me, is a separate topic, it’s not about depression, I actually became a member before I had depression. It is not based on fleeting suicidal feelings or fluctuating depressive episodes, it isn’t a knee jerk reaction, it’s not something I can’t understand, it is not something that scares me. Even when I’m feeling at my best, both in terms of ME and my mental health, Dignitas is still an option, and a rational option at that. If I decide to go this way, it will be based on rational and careful thought and discussion with my GP and counsellor. I won’t even get the provisional green light from Dignitas if they don’t trust my decision and believe me to be of clear and rational mind. Knowing that that Dignitas is there gives me comfort. The application process is daunting though, in terms of the paperwork, and it’s expensive. Just to make the initial request, that may be turned down, costs over £2000. Some people make that request and pay the money, get the provisional green light, but not follow through. Apparently, gaining that initial green light, can provide an additional layer of comfort, that allows people to keep going, knowing they do now have that option. That might be an option for me too at some point. I do think, when/if the time comes that I simply do not want to carry on with my life as it is, Dignitas is a much better option that suicide by my own hand, and so much easier on those who are left behind. Ideally, assisted/accompanied suicide will one day be legal in the UK, or Scotland, but I can’t see it happening anytime soon, the UK are rather behind, when comes to some things.

At the moment, in terms of ME, there is a feeling of potential change in the air. The film Unrest and the charity #MEAction have done so much for the awareness of ME worldwide. My mum attended the Invest In ME Research annual conference last week and heard some of the most prominent scientists in the field of ME research speak, she said there was a feeling of hope in regards to the current biomedical research. The NICE (The National Institute for Health and Care Excellence – the UK Department of Health organisation who provide guidance on the appropriate treatment and care of people with specific diseases and conditions) review of the ME guidelines is on the horizon, and will be completed by 2020. My fellow #MEAction Scotland volunteers met with the Scottish Parliament Petitions Committee today to discuss our recent petition (online and on paper we ended up with around 7000 signatures!) in which we are calling on the Scottish Government to review the level of support for people with ME in Scotland, in terms of biomedical research, education for healthcare professionals and specialist care for patients (the link to watch this is at the top of the NEWS section below). Some MP’s, including Carol Monaghan, recently put forward a request to the House of Commons Backbench Business Committee for a full debate about ME in the Main Chamber at Westminster. This has now (kind of) been granted, not for the Main Chamber, but for a three hour debate about ME treatment and research in Westminster Hall. Hopefully this will lead to a debate in the Main Chamber of the House of Commons in the Autumn.

So there are people doing things, and I want to feel hopeful, but so have the people who have been living with ME for decades, and seen no change. It is possible that biomedical research will find the cause of ME, to then find there is no cure. It is possible that the NICE review won’t in fact change everything, or they may change the guidelines for the worse. It is possible that the Scottish Government and Westminster will continue to neglect people with ME. We still have a long way to go and I want to be able to hang on, but I don’t know how long I’ll be able to. I don’t want it to, but I’m currently living knowing that my depression may one day ‘get me’. At the moment I’ve told myself I can’t go anywhere before the NICE review in 2020. I like to give myself a date, something firm in the diary to cling on to. The NICE review might just change things for the better for people with ME in the UK, and I at least need to live to see what happens there. Hopefully by then, I’ll have found something else to live for, I’ll have managed to find meaning in my life, I’ll have found somewhere to live that makes me happy, comfortable and settled (and with less need for noise cancelling headphones), and hopefully I can keep that going, and keep pushing back that date in my diary, at least until I’m an old lady with lots of cats.

When I do die I want my body to be utilised for ME research. If you live in the UK, this is how you can help progress ME research after you die. The ME Association is the only ME charity involved in the collection of post mortem tissue samples from people diagnosed with ME/CFS in the UK and their aim is to establish a national ME/CFS Post Mortem Tissue Bank where greater numbers of samples can be collected and stored for vital research. Learn more here:

http://www.meassociation.org.uk/research/current-research/post-mortem-tissue-bank/

Follow these links to mind.org.uk to learn about depression and anxiety.

Depression

Anxiety

 

NEWS

The Scottish Parliament Public Petitions Committee hear evidence from Emma Shorter and Janet Sylvester of MEAction Scotland and Professor Chris Ponting, Chair of Medical Bioinformatics at Edinburgh University and Deputy Chair of the UK CFS/ME Research Collaborative.

https://www.scottishparliament.tv/meeting/public-petitions-committee-june-7-2018?clip_start=10%3A10%3A46&clip_end=10%3A55%3A21

Futurism. Scientists are now calling the link between depression and inflammation caused by a faulty immune system definitive. Whether it’s causal or not, the connection opens up new avenues for treatment, and new hope for sufferers. 

https://futurism.com/researchers-depression-may-be-a-physical-illness-linked-to-inflammation/

ME/CFS Research Review. A team led by Edinburgh University’s Professor Chris Ponting has won funding for a PhD student who would follow up and expand on remarkable recent findings made at Stanford University, where Dr Mark Davis may have pinpointed a major issue in the immune system in ME/CFS.

https://mecfsresearchreview.me/2018/05/31/a-plan-to-replicate-mark-daviss-remarkable-findings-of-immune-activation-in-me-cfs/amp/?__twitter_impression=true

The ME Association. Inquest Ruling: Young drama student Merryn Crofts killed by ME.

http://www.meassociation.org.uk/2018/05/inquest-ruling-young-drama-student-merryn-crofts-killed-by-m-e-18-may-2018/

The Times. ME sufferer who was dismissed as hysterical vindicated in death.

https://www.thetimes.co.uk/article/me-sufferer-merryn-crofts-who-was-dismissed-as-hysterical-vindicated-in-death-lq9j2lc7w

Health Rising. The Migraine Drug Explosion Begins: Could Fibromyalgia and ME/CFS Benefit?

https://www.healthrising.org/blog/2018/05/19/migraine-drug-explosion-fibromyalgia-chronic-fatigue/

 

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 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 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!

 

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

 

Post Sixteen. Wheelchair Or Not?

I’m currently trying to decide whether or not to buy an electric wheelchair. It is however, an expensive purchase, in the thousands, so if I do, I have to be sure. The problem is, I’m not sure.

If I go for it I will first have to get over some significant emotional barriers about what this means for me. Does it mean I am ‘giving in’ to my illness? If it does, is that bad? There’s little point in pretending that I don’t have ME, that I’m not severely incapacitated by it. Will I become too dependant on it and risk deconditioning? I don’t think so. I can walk short distances and I don’t plan on using the wheelchair to get somewhere I can manage by foot, I like to use my legs when I can. So I’ll still be walking the same short, and infrequent distances as I currently do, and I had it confirmed at a recent hospital appointment that my muscles have not (yet anyway) deconditioned. Will I feel self-conscious and embarrassed to use it in public? Probably. I already feel self-conscious and embarrassed to use my walking stick. Will people treat me differently when they see me as a wheelchair user? Possibly. This article in The Pool suggests that 25 per cent of Brits find it “uncomfortable” talking to disabled people. Apparently some people feel they have nothing in common with disabled people. Will the people who once felt they had things in common with me no longer feel that way? Has my personality now reduced down to nothing but ‘chronically ill person’? To be honest I think some people already do feel that. They can’t see that despite this life-changing illness I am still the same person, with the same interests, the same morals, the same passions, the same dreams and the same goals, it’s just that my body no longer works as well as it used to. Something I struggle with is that my illness is ‘invisible’. Generally speaking I look ‘well’. There’s no way that someone who didn’t already know could look at me and know that I have a severe debilitating chronic illness/disability. So a wheelchair would solve that problem, wouldn’t it?

There are many situations that I currently avoid. On a better day I can manage the walk to the post office and back, although not without PEM (post exertional malaise). But this is based on not having to stand in a queue, and I can’t possibly know ahead of time if there is a queue or not, so I don’t risk it. A wheelchair would change this. There are also many activities that I simply cannot do, that are far too much for me, that I don’t have the energy for and that my legs wouldn’t manage. Like walking to my mum’s house, or having a wander along the High Street to visit my favourite coffee shop that is just that bit too far for me to walk (I’m talking about you Coltman’s). When I go out I might be able to stay out for longer while maintaining my energy levels. On better days I could do these things with a wheelchair. Note that this would still have be on a better day, I might have wheels but I’d still have ME, I’d still have daily widespread pain, debilitating exhaustion, dizziness, brain fog and sensory overload. Having an electric wheelchair won’t undo any of my symptoms, it will simply give me access to a higher level of mobility than I currently have. So far, I’ve begrudgingly accepted my current limitations, the fact that I’m mainly housebound, that many activities that used to be so everyday and normal for me are now off limits, I don’t like it, but it is what it is. But maybe it doesn’t have to be? With a wheelchair maybe I could regain some of my lost independence and freedom, maybe it would open my world up. If I can get past my fears and insecurities it could be wonderfully empowering.

I do however have concerns, some rational, and some possibly less so. I’m concerned about how much I will use it, will it be worth it? Like I said, the arrival of a wheelchair is not going to suddenly improve my health enough that I can start going out every day, or even every other day. What if I only get use out of it a couple of times a month, is that enough to justify the cost? I also have to think about the overall use of my already limited energy. If having a wheelchair will allow me to go out more frequently, will I actually end up using more energy on these outings, energy that I wouldn’t have used otherwise? Should I accept and stick to my limitations, remain mainly hosuebound in the hope that only prolonged rest and limited activity will allow me to recover? Maybe. But this existence has already damaged my mental health, so what will a few more years, decades, or a lifetime of this do to me?

One of my main concerns is based around the fact that I can walk short distances. I worry about what people may think, or say, when they see me get up from my wheelchair and walk. There’s a horrible meme that I’ve seen on Facebook a few times, (which unfortunately means that I have friends who have ‘liked’ or shared this meme). It’s a photo of a woman standing from her wheelchair to reach a high shelf in a supermarket. The caption reads “There’s been a miracle in the booze aisle!”, or something along those lines. It’s cruel, it’s ableist, and not in the least bit funny. I don’t want to become a meme. Some people seem to think that wheelchairs are only for those who cannot walk, at all, ever. I read The Mighty, an excellent website full of personal accounts written by people all over the world living with various illnesses and disabilities. I’d recommend it for anyone, it has aided my understanding of the vast world of illness and disability immeasurably, and couldn’t we all use a good dose of increased empathy. I come across a new post pretty much every day about people judging disabled people. Either they don’t look ‘disabled enough’ to use that parking space, despite having a Blue Badge (or the equivalent in their country), or they look ‘adequately disabled’ in their wheelchair, but then they rise from their wheelchair and their spectators think ‘my god it’s a miracle’, or more frequently, they think the person in the wheelchair is a fraud. This kind of thinking is common, far too common, I read these stories frequently. Many people judge and make assumptions, they lack the ability to consider any set of circumstance other than their own, they view disability in black and white, rather than the many shades of grey that make up the world of disability and chronic illness. I don’t want to be the person being judged for getting out of my wheelchair when I can, need or want to, and I don’t want to be the butt of anyone’s jokes, especially not when I’m already going to be feeling all sorts of self-conscious and vulnerable sitting in my wheelchair.

Of course, when I’m able to temporarily push my fears aside, when I’m thinking rationally, or when I think about how I would advise someone else, it’s a different picture altogether. I view a wheelchair like a pair of glasses. People who don’t have perfect sight wear glasses, or contacts, to aid their vision, and some people use wheelchairs to aid their mobility. It’s an aid, something to help and enhance a person’s quality of life. No one judges me for aiding my vision by wearing glasses when I use the computer or read, so maybe no one will judge me for aiding my mobility by using a wheelchair, and those who do view me differently, well, do I want them in my life? And I know I shouldn’t care what strangers think, but I do, sadly. When I’m able to think positively about this new world of mobility, I already know where I’ll go first. My favourite walk, in the valley behind my mum’s house, it’s so peaceful, the town is completely out of sight, and maybe this sounds cheesy, but it’s where I feel closest to my dad, we walked here together so many times. The wheelchair I have my eye on won’t manage the whole walk, I’d need an all-terrain, four wheel drive monster of a wheelchair to walk the full thing, but just a glimpse of the valley would be enough for me. The thought of being able to go out and not worry about how long my legs will hold me up, or whether my lightheadedness or dizziness will overwhelm me, well that thought brings me nothing but joy.

The wheelchair I’ve been eyeing up is lightweight and foldable, and of course it’s electric. I don’t have the strength in my arms to self-propel, I mean, I couldn’t even squeeze the juice out of a lemon the other day. And I don’t want to be reliant on someone pushing me, that defeats the purpose entirely. The reason I have to be absolutely certain about this is the cost, it’s incredibly expensive, around the £2,500 mark, possibly more depending on what accessories I buy, like a second battery etc. Before you ask, no, an electric wheelchair, for me, is not available on the NHS. If I want it, I have to buy it. There is however another option. Crowdfunding. It is not uncommon at all, actually it’s incredibly common, for people to crowdfund their electric wheelchair. I don’t know how I feel about this, actually I do, I feel really uncomfortable about this. I know it’s not exactly the same as a person asking for sponsorship to fund their amazing holiday to Peru so they can hike The Inca Trail to Machu Picchu, under the guise of ‘charity’, but the idea of it makes me squirm all the same. So I ask you, how would you, my friends, family and readers feel about me crowdfunding my electric wheelchair? Would it be really cheeky and/or presumptuous of me?

There’s another option, I could reapply for PIP (Personal Independence Payment), a benefit that helps with the extra costs of a long-term health condition or disability, it’s the one that is gradually replacing DLA (Disability Living Allowance). I did apply for this a couple of years ago, I attended the horrendous face-to-face assessment, the assessor lied in his report (for example, he claimed that I made my own way to the assessment centre, even though my mum drove me, which he knew, he gave her a form to claim back her petrol expenses) and the DWP turned me down. Despite the fact that more than half of PIP decisions are changed after mandatory reconsideration or an appeal to a tribunal, I didn’t fight it, I simply didn’t have the energy. I also felt that I could manage without PIP, I had my ESA (Employment Support Allowance) and the rental income from my flat (minus the letting agency fee, mortgage, insurance etc), so I wasn’t feeling hugely driven to challenge the result. Something really annoying though, I really could use a Blue Badge, which means when I go to the GP, or to the hospital, or anywhere that has designated disabled parking, my mum could park there. But, in the region in which I live (Scottish Borders), I can’t apply for a Blue Badge without first receiving PIP. So, to get a Blue Badge, I would need to reapply for a benefit that I don’t really need, then apply for the Blue Badge. It’s ridiculous. But actually, the more I think about it, I could use PIP. It would take time to save up, but it could pay for my wheelchair, it could pay for the expensive experimental treatments that I currently cannot afford, acupuncture for my chronic migraines, for example. It could pay for my counselling (currently paid for by a kind benefactor), it could pay for my supplements and my private prescription for Low Dose Naltrexone. The more I think about it, my illness/disability does incur many costs, having ME is expensive, and that is exactly what PIP is for. But do I have it in me to go through the traumatic (no exaggeration) application process again? I don’t know. My mental health is fragile, and the DWP are certainly capable of pushing me over the edge.

One of my biggest bugbears in life is unsolicited advice, people advising me when I haven’t asked for advice. But I am now asking for advice, your advice is very much solicited. What should I do? What would you do? Should I feel self-conscious? I know you’ll say I shouldn’t, I guess what I really mean is, can you understand why I will feel self-conscious? Can you empathise with me? Have you ever had judgemental thoughts about someone who can walk short distances using a wheelchair? Did you laugh at that internet meme? Do you think it means I’m giving in to my illness? Do you think it will hinder my recovery? How should I pay for it? Can I crowdfund this without people thinking “cheeky cow, pay for your own mobility aids!”? Should I put myself through the harrowing process of applying for PIP which will undoubtedly end up at a tribunal (most do)? Or, could it be one of the best possible things I could do for myself? I just don’t know. I really don’t.

Update: The day after I published this I had a moment of clarity regarding the fears that are holding me back. You can read about this here… Post Sixteen Continued… Wheelchair Or Not. An Afterword.

Post Nine. Why I Write This Blog.

I came across a blog post from The Mighty this morning and I urge you to please read it. It explains so well why someone living with chronic illness might share so much about their illness on social media. I’m aware I might have Facebook friends who think I’m oversharing, or attention seeking. I’d like to think that anyone who knows me well enough would know that this is not the case. I wonder if people think that I’m too ‘negative’. All I can say is, I’m realistic, I’m honest, I don’t exaggerate and to be frank, if anything, I probably downplay the reality of my illness. I don’t share everything. I possibly use humour too much, to make you feel less uncomfortable. And so begins why I share so much about my illness…

ME is a serious and debilitating illness, I want you to understand that.

It is unfortunate that the reality of living with ME is really very shitty, and that’s putting it mildly. So when I’m being honest about my illness, it’s going to come across, as guess what, really very shitty. ME is an incredibly debilitating illness. For moderate to severe patients (I’m on the severe end of moderate), living with ME is said (by many experts) to be “like living with late-stage cancer, advanced stage AIDS, or congestive heart failure, for decades”. ME is unfortunately such a massively misunderstood illness though that those comparisons may have shocked you, or even offended you. I am absolutely not downplaying the horrendousness of AIDS, or cancer, or congestive heart failure or any other serious and life-threatening illness. I am not looking for sympathy. I am trying to make you see ME more clearly for what it is. If being honest about my really very shitty illness is ‘negative’, then so be it. (Why is negativity such a bad thing anyway? Emotions and feelings can come in both positive and negative varieties. I personally don’t feel it’s healthy to repress what I’m feeling, I let it out, I ‘feel’ it, good or bad, and if it’s negative, I work through it, and eventually move on, and this will sound really clichéd, but maybe I’ll have learnt something from it.).

Not convinced that ME is that debilitating?*

I split my clinical time between the two illnesses (ME/CFS and HIV), and I can tell you if I had to choose between the two illnesses I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”—Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

“They [ME/CFS patients] experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy…” – Dr. Nancy Klimas, CFS researcher and clinician, University of Miami (2006 Press Conference)

“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.”—Dr. Daniel Peterson (Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)

“We’ve documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions.”– Dr. William Reeves, former CDC Chief of Viral Diseases Branch

“[ME/CFS patients] are more sick and have greater disability than patients with chronic obstructive lung or cardiac disease, and … psychological factors played no role.”—Dr. William Reeves, Chief of the ME/CFS research programme at the US Centres for Disease Control (CDC) (Press Release AACFS, October 7th, 2004).

“[ME/CFS patients] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)

The good news is, these patients don’t die. The bad news is, these patients don’t die.” – Ron Davis, California-based geneticist whose son has ME/CFS

To spread awareness.

My blog started because I wanted to raise awareness of ME. I know that there are many people in the world, including health professionals who do not take this illness seriously. I also know there are people in my life who do not take this illness seriously. Mainly due to being uninformed. But also, my friends and family (apart from my mum) only see me when I’m feeling well enough to see people. So of course you may see me and think, ‘ME doesn’t seem that bad’. Unless you are my mum, you have never seen me on my worse days, or possibly even my ‘normal’ days. You have only ever seen me on the ‘better’days, the days that I can scrounge up a bit of excess energy to have a conversation (I had no idea before ME how much energy was required to hold a conversation). You also see me putting on an act, I often pretend to feel better than I am. But also, when I am with people, I don’t want to go on and on about ME, I’m already living it, I don’t want to be always talking about it! It’s also an invisible illness, you can’t see my pain, my exhaustion, my weakness, my dizziness, my brain fog etc. You also don’t see me in the hours or days after your visit, when I am suffering for it, when every inch of me is in pain, when I don’t have the strength to hold my phone, when I’m crawling because my legs are too weak. So I am probably partly to blame for the people in my life not knowing the reality of my life with ME. The problem is, when I am feeling too unwell for visitors, I simply cannot have visitors. And the majority of my days are spent being too unwell for visitors. I recently had someone ask me how I was doing. I told them ‘really weak, achy and slowed down, like there’s an elephant sitting on my shoulders’. In reply they asked if I had a bug, or if it was an extra bad ME day. But no, it was a very normal, nothing out of the ordinary, run of the mill ME day for me. After two and a half years of this illness, people still struggle to understand. I hope this blog will help with that. Also, and most importantly, no one is going to fund research for an illness they aren’t aware of.

It gives me a sense of purpose that I don’t get elsewhere.

It gives me purpose and a sense of accomplishment. My purpose before I became ill was to help people. I worked, alongside an army of incredible volunteers, for a homeless charity redistributing surplus food from the food industry to those who needed it the most. I supported people with all manner of obstacles and difficulties in their lives, people excluded from their families and their communities, on their life journey. I could see how I was contributing to the world, to my community, to people’s lives. I could see the difference I was doing. That is what I did for a living. It was a privilege, and I was working with some of the most inspiring people I have ever met. In that job I had found my vocation in life. A friend of mine at the time told me I was her hero, that she was so proud of me. I now haven’t been to work for over two years. I no longer contribute. I’m not helping anyone. I have no purpose. I don’t feel that I have anything to offer anyone. I’m not making anyone proud. That was until I started receiving some really wonderful feedback about my blog. Then I got my first message from a stranger. A stranger who was newly diagnosed with ME, and my blog had helped them feel less alone. For the first time since I had been off work I felt I had accomplished something, something that had helped another person, and that makes my blog all the more worthwhile.

I have something that is mine, that I am in control of. It makes me feel a bit more ‘normal’.

My life is ruled by my illness. ME affects every single aspect of my life, there is not one thing that it hasn’t had an impact on. Daily tasks that were once so easy, so natural, are now mammoth tasks of endurance. All of my decisions these days revolve around my illness, I no longer have the freedom and independence that I valued so much. I’m not in charge, ME is. But my blog is all mine, I control the content, I control when I publish a post. Of course ME dictates when I can write and for how long, and it always punishes me afterwards. But I can bitch about it all I want in my blog. Mwa ha ha ha. 😉

It helps with the isolation and loneliness.

Back when I had a life (pre-ME) I would occasionally cherish having a few quiet days to myself, knowing I wouldn’t see another human until I was back at work on Monday. However, having two (plus) years to yourself when it is not through choice, when it is forced upon you through illness is horrible, and boring, so mind-numbingly boring. It is frustrating. It is upsetting. It is depressing. It is lonely, very very lonely. The isolation, I have found, can feel as bad as, if not worse, than the illness that brought upon the isolation. This illness prevents me from keeping in touch with people with the frequency and regularity I used to (I need both the required energy and a certain level of cognitive function to do that). And that results in people not contacting me as much as they used to. To go from being surrounded by people every day at work, the gym, the pub, the supermarket, the bus, or a restaurant, a cinema, Leith Walk, etc, to being almost housebound so very suddenly has been heartbreaking for me. It is incredibly difficult to cope with. Like in the post I shared from The Mighty, my world has become smaller and smaller, and I am alone most of the time. We need human contact, and my social media accounts, and my blog, have become my main source of interaction with other humans. I’m so grateful to at least have been struck down with a long term illness during the age of social media. When I share something about my illness on Facebook, whether an article, or one of my blog posts, I hope for ‘likes’ or comments. Not to feed my ego, but because it shows me that I am being heard. At least one person, for a short time, was thinking about me, and I feel a little less lonely, a little less forgotten and a little less invisible. And when, like me, you are so starved of human company, that one ‘like’ can keep me going for the rest of the day.

*Sources…

www.meaction.net

Dr Nancy Klimas. Readers Ask: New York Times Interview

Dr Nancy Klimas, Dr Daniel Peterson, Dr William Reeves and Prof Mark Loveless quotes

Ron Davis quote