Researchers who conduct graded exercise therapy trials, or study related techniques encouraging activity increase, claim that they don’t find evidence of harm in the research setting. The inference is that they are delivering the therapy correctly and patient reports of harm occur due to doing it incorrectly. Rosa describes her experience of participating in a Cognitive Behaviour Therapy trial which focused on “false illness beliefs” and exercise (not standard CBT for adjusting to a chronic illness):
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 hundreds of thousands of people across the UK.
I have both Lupus and M.E, (Myalgic Encephalomyelitis) 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 Cognitive Behavioural Therapy (CBT) [with exercise] trial, called the PRINCE Secondary Trial, run in St Thomas Hospital in London…
For a few months 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 the 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 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 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.
I had 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 the University of East Anglia, and that the PACE trial researchers recently were ordered by a UK tribunal to reveal trial data 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 severe. 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.
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This post is edited for length from a post on Rosa’s blog. To read the original, including more information about the history and biology of ME see https://rosarainbows.wordpress.com/2016/09/17/how-me-and-my-m-e-became-worse/
Rosa has yet to return to her pre PRINCE trial level of health.