How me and my M.E became worse 

I haven’t written a blog post for about two months, and the reason is that I have become very ill. For my friends who do not know much about M.E, I hope you will read what I am about to write so you can understand the severity of the situation in the UK – it is not just happening to me, but to many other hundreds of thousands of people across the UK. 

I have both Lupus and M.E, and while Lupus is taken somewhat seriously, M.E absolutely isn’t. Looking back, from June onwards, I was starting to notice more and more days when I felt overly unwell. This coincided with the time that I was put on a new CBT/ Graded Exercise trial, called the PRINCE Secondary Trial, run in St Thomas Hospital in London . For a long time, for hundreds of years, medicine didn’t understand M.E. A huge number of cases start with a serious viral infection (in my case suspected glandular fever which landed me in hospital for 10 days), and after that, patients are left with a condition that ranges from mild (where they are sometimes able to work but the energy required to do that, means they often don’t have energy to do much else), to severe (like me – housebound and/or bedbound) or even very severe (when they are bed bound, cannot move or swallow and need to be fed through a tube and cannot tolerate light, sound and touch). Often the severity of the illness doesn’t become apparent until the person pushes themselves too much, sometimes a few months after the virus (in my case, exactly 15 months after the virus first hit – after a year of pushing myself despite feeling increasingly ill, I became predominantly bedbound).  It affects every area of the body – the central nervous system, the cardiovascular system, the immune system, the brain, temperature control, the endocrine and gastroestinal system. Many years ago, because conventional blood tests did not explain the illness, and patients remained in such a severe state of illness for so long (the recovery rate is just 5%), instead of deciding to investigate it further, researchers decided to focus on the “psychology” of the illness. They called it CFS (Chronic Fatigue Syndrome), to belittle the illness, to make it seem as if we were just tired all the time. But as all M.E sufferers know, fatigue is just the tip of the iceberg. Those psychologists decided, with the help of a (now discredited – see links below my post) trial funded by the Department of Work and Pensions (called PACE), that the reason why patients were ill, was because they had “illness beliefs” that are “false”, which led to deconditioning. So it was decided that patients should, through a course of graded exercise and therapy, not think too much about the fatigue and the pain, even if they felt worse and worse. 

And so, all patients with M.E, despite having an illness which has incredibly severe and debilitating symptoms, are told it is all in their heads. To just get up, walk and exercise to condition their body back into a state of health; to ignore any symptoms. Over the past month, I have found out about many M.E patients who had a mild case, but then in many cases became irreversibly housebound and bedbound through these exercise programmes. A huge proportion of those who have severe M.E, became that way after trying to push through it and through exercise. One such case was of a young girl, who after a virus from which she never recovered, was told it was all in her head, put in a psychiatric ward and forced to exercise. She got worse and became bedbound. Her legs became paralysed, she was unable to read or speak or write, she had to be fed through a tube and never recovered. As her complications grew, she committed suicide. The MP Brynmor John, who developed M.E after a viral infection and found it increasingly difficult to work – he was told to keep exercising, but soon he wasn’t able to dress himself, but he was told to exercise himself to health. He died in the House of Commons Gym. There are too many of these heartbreaking stories. 

And now global research has caught up (links to research below this post). There been increasing evidence that M.E is an incredibly serious disease and exercise actively harms a person with M.E. For this reason, M.E is very different to other illnesses. The key defining feature of M.E is “exertion intolerance”, as defined by the Institute of Medicine – that is, exertion whether physical or mental, brings on the symptoms of M.E and can cause severe, sometimes irreversible, relapses. In a letter sent to the PACE trial researchers and the Lancet, signed by 42 prominent scientists and researchers (among them Ron Davis, professor of Genetics and Biochemistry at Stanford University), it says: This key IOM finding strongly suggests that to increase activity levels, as the PACE interventions recommend, is contraindicated and potentially harmful. 

In M.E patients, the aerobic energy system is broken. So they may be able to do little bits of exercise depending on the severity of the condition (gentle stretching or yoga if they are able, even short walks if they have mild M.E), but if they try to do more than their body can do – it breaks down. Recent research, published by the university of California, has shown that for those that M.E, even if it was triggered by different things (virus, intense psychological stress), all have the same mitochondrial metabolite markings. That is, their body is in a state similar to “dauer” – essentially a state where the body has slowed down dramatically. In response to environmental stresses (which otherwise would have led to cell death), it tries to preserve itself and keep going, at the expense of a very reduced quality of life. If you push a body which has tried to slow down to keep itself alive – you are going to cause a horrendous relapse. And that is why, when M.E patients are subjected to stress and exertion (mental or physical, and that especially includes exercise) that their body can’t handle, it shuts down further. Yet mental and physical pressure is what is heaped on M.E patients, to horrific degree, by medical professionals and as a result by society too. 

So, we come back to my story. For a few months, from about March to June, I had been feeling better. Before then, I had spent about 8 months with complete bed rest and meditating and reading. It had made me feel stronger. I was doing gentle stretching and yoga to help my muscles. So now I was able to leave the house once in a while in the wheelchair, and was also able to walk for about 5 minutes with breaks, once a week on good weeks. I was even able to go to the cinema and see my friends for meals. Life was good! 

But from June, I was enrolled on the PRINCE Secondary Trial. It was a trial where I had CBT sessions – but the sessions were based on a special form of CBT which told me I had false illness beliefs, and in every session I was given an exercise programme to do. The booklet I was given said, “The best advice would be to try out this practical approach because nothing will be lost by trying but much may be gained“. I was told to increase my exercising – so to go on a 5 minute walk, twice a week, instead of the once a week I was able to do. I did what they said, but was starting to feel more unwell than before, and told my therapist – she told me to meditate more, rest more in between (although that was all I was doing in between anyway!), and continue the walking. So I did. Then, she told me to increase it to 5 minutes, three times a week. I was given a booklet that told me that it was my beliefs that were perpetuating the illness, that even if I felt unwell or got pains, or wanted to cancel plans, I should rethink it, and not think negatively. I was having more and more “bad” days but kept going. The message was that even if I got pains or dizzy or got tired, it was my body getting used to new patterns and doing more exercise and I shouldn’t look into it too much.   I booked a trip to wilderness festival, thinking, well even though I am feeling more and more ill, at some point my body will get used to its new pattern. and I still wasn’t as bad as I was last August (when I first got ill) so I continued. 

During wilderness, I became very unwell and had to come back early by cab all the way from Oxford – by this point my body had gone numb and I was in tears. I came back from Wilderness, and I went into hospital a few days later and was told I should get out of my wheelchair and be more active. When I told them I often had a lot of pain in my arms, which is why I couldn’t do a lot of things and needed help with having a bath,  they told me to do weights. By this point in the trial, I was too unwell to travel to my appointments so was having phone appointments – I was told to do a 10 minute walk. During the walk, my legs wobbled and stopped being able to work properly. Despite this, I desperately tried to push through it and did a yoga session a few days later (the trial therapist knew about the yoga too), because I had been told that that pain wasn’t a big deal. And that was when my body finally collapsed in exhaustion. I had shooting, electrical-like nerve pain throughout my arms and legs, it was terrifying and I couldn’t sleep with the pain. I had palpitations, my body started shaking and twitching, I would burn up one minute and be freezing cold the next – I was feverish for over a week. 

I got even worse orthostatic intolerance, which means I couldn’t tolerate being upright or even sitting upright, sometimes even for more than a few seconds without feeling nauseous and dizzy and shivery. I felt sick all the time, found it difficult to tolerate food (or even sit up to eat) and the headaches were there all the time. My brain felt foggy. I became sensitive to light, and sound, and had to lie in a darkened room or I would get palpitations. The smallest thing I did- even eating a few spoons of breakfast, meant I had to lie down for hours to recover. I needed my mum and my boyfriend for every single thing. I couldn’t walk a few steps or type without horrendous pain. I couldn’t talk more than a few words or the exhaustion was too intense. I could drag myself to the toilet next door a few times a day, and and that was enough to make me more unwell. All in all, I was back to how I was last year. This relapse happened in the middle of August. It is now a month on from that, and although I am a little better, I am still very unwell – it has taken a lot out of me, lying down, to write this on my phone. And I know I will feel very unwell after this, and am feeling it now. But I am writing all this, however horrible it is to talk about, because I want people to know this is the reality of how M.E can be – that a young woman, who was getting better by herself with rest, and who had already lost so much, can be pushed into this state by being told that they should just “push through it”. And I also have Lupus, and the complications which arise from that.

I have had to have complete bedrest. I have felt so down, and upset, that I am so unwell again. But I learned a valuable lesson. It was only after I fell ill last month, lying in bed and not being able to move, that I spent time reading research about M.E on my phone. Before that, I only really knew about Lupus and didn’t realise the severity of how M.E would affect me, and more than that; I placed my trust in the professionals and therapists. But now I know what M.E is, what research has been done into it and what can make M.E worse. I know there are charities which are fighting for us, I know that there is now new biomedical research being done in the UK at UEA, and that the PACE trial researchers recently were ordered by a UK tribunal to release their trial data which they had so far refused to release. I hope, that in 10 years time and with research that the medical profession can no longer ignore, the medical guidelines will be changed and such sick people will not be actively made worse by the very people who are supposed to help them. Any “therapy” that ignores the serious physical causes and symptoms of M.E, is dangerous. 

But in the meantime, I am going to listen to myself. Yes it hurts me a lot, and I feel so alone, when doctors and hospitals treat me as if I am choosing to be this ill, especially when I am so severely ill. But, I don’t have to listen to them about M.E. I was getting better by myself, when I did only what I could – mindfulness meditation, reading, very gentle yoga and stretches. Then, doing cross stitching and sewing when I was feeling better, and after many months of rest, walks when I am able to. So I am going to go back to that, and not push myself any more than I can do. If my body hurts, there is a reason, and I will stop. 

And it’s ok to have limits to what I can do in my life . Those limits may change in the future, but now I do have limits, and that’s ok. I think accepting that,and trying to find contentment within that, rather than fighting against it, is one of the strongest things I can do. There is always beauty and peace to be found, even in the smallest things, in the things that I can do. 

All of this, the resting and the relaxing and not pushing myself, is something my boyfriend has been telling me from the start – if only I had listened to him! Well, I’m definitely listening to him (and myself of course) now!😊

I want to also say thank you to my boyfriend and my mum, without your support and your love, before and now, I don’t know where I would be right now. Words can’t express it. You are incredible. 💜💜

This is a picture of one of my new cuddly toys, Caramels the Baby sloth. She needs to rest a lot too but she’s happy with that 🙂 

Research published by the university of California: http://www.openmedicinefoundation.org/wp-content/uploads/2016/08/Naviaux-PNAS-CFS-Metabolomics-2016.pdf
Research published in Norway on B cell depletion: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0129898

One of the many open letters written to the PACE trial researchers and the Lancet, signed by world leading geneticists and statisticians: http://www.virology.ws/2016/02/10/open-letter-lancet-again/

His son seriously ill, top scientist  Ron Davis (Stanford University), takes on CFS: https://www.washingtonpost.com/national/health-science/with-his-son-terribly-ill-a-top-scientist-takes-on-chronic-fatigue-syndrome/2015/10/05/c5d6189c-4041-11e5-8d45-d815146f81fa_story.html

By Jonathon Edwards, Professor Emeritus at UCL about PACE, “Good Science doesn’t need protection” – http://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255
For information about the PACE trial and it’s many failings: http://meawarenesshour.blogspot.co.uk/2016/09/the-pace-trial-fiasco-for-me-awareness.html?m=1

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11 thoughts on “How me and my M.E became worse 

  1. Sorry to hear you are so unwell Rosa.
    I knew someone ages ago who had ME and they said it was ignored by the medical profession 25 years ago. It sounds like not a lot has changed.
    You are a very positive person so eventually I am sure you will see a way to feel better. It’s really disappointing that medical research and treatment seems to concentrate on what it can make money out of and not need. Generally we seem to treat chronic conditions poorly as they are difficult and expensive to treat.
    Now the emphasis seems to be trying to get people off benefits more than trying to genuinely help them.
    My mum had MS and she certainly got very little help from doctors even in alleviating symptoms.
    Best wishes to you and Martyn.
    Mark

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  2. You are doing a great service to ME sufferers, and the rest of us, by your detailed and very moving account of how the PACE worsened your illness.
    It seems that medics don’t know what to do , don’t understand the cause at all, and that a research breakthrough is needed to bring about treatment that will help instead of hinder ME sufferers. Your e perience should be a spur to medical staff to rethink their advice.

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  3. Rosa would you like this to be sent to NICE for their consideration on the review of the guidlines . A know someone who is in contact with a stakeholder who is submitting some comments before the 5th December . I think your piece would be a great addition .

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    1. Hi Amanda, yes absolutely, I’m happy for you to send it to them – I think NICE needs to read testimonials from people who have suffered in this country.

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  4. Great article. So very sorry for the way you’ve been treated ; it is not right, nor fair and needs to stop. You’ve raised some really good points: 1. The incorrect and dangerous current treatment programme. 2. What really happens with the body when you have M.E. – ‘Dauer’ and 3. The MP with M.E. who died, very sadly and ironically in the House of Commons gym. This would make a very good newspaper article I think for more awareness of how those with M.E are being mistreated. I wish for you a steady and safe improvement. God bless.

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    1. Thank you very much for your comment Cathy. Unfortunately I’ve become worse in recent months but I am hoping that I see some improvement soon. Thank you for reading x

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      1. Thank you, Rosa for sharing this with the world. You are doing a tremendous service sharing your experience. I have been ill with this dreaded M.E. for over 4 years now. Quite severely for the first few years. I am in the U.S.A. and my GP here has said, “I will not treat you for this illness”. So, it is no better here. I have been left to my own ability to research this illness and listen to my body. I am finally able to get out of bed but my health is still relapsing and remitting according to my “activity” level. For instance, I have been able to shower twice this week. I know you understand what a success that is. I was initially paralyzed and could not even hold a hairbrush, so I am grateful for what function I do have now. God bless you. Much love to you and please listen to your body so that you may work toward recovery. I hope you are feeling better soon. ❤

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      2. Thank you for reading, and im sorry that you too had to go through bad experiences with your doctors.. we all end up having to research the illness ourselves and do only what we can. Yes just having a shower twice a week is such an achievement 🙂 I haven’t had a proper bath/shower for many months now, it’s so weird to go from having daily or twice daily showers (1 and a half years ago).. to not being able to do hardly anything at all. Yes we all must try to listen to our bodies as much as possible, instead of the CBT dogma of ignoring our body. Thank you for your kindness xx

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