There was an article published in The Guardian on Monday entitled “It was like being buried alive”: battle to recover from chronic fatigue syndrome. I was pleasantly surprised when I saw it, I liked the headline, and was expecting a more sympathetic point of view that one might expect from The Daily Mail or The Sun (whose opinion I’ve had to suffer through many a time), and although the article did nothing so overt as calling ME “yuppie flu” which The Sun did just a few weeks ago, the inferences it was drawing were still pretty bad.
Usually I don’t comment on this sort of thing because it gets me ridiculously worked up, but this time I wanted too. Maybe because The Guardian is my newspaper of choice, maybe because the last few months quite a few negative articles have cropped up and the frustration at them has built up. I don’t, anyhow, I’m about to get worked up.
The summery paragraph at the top of the article in question reads as follows:
Is it physical or mental – or a combination of the two? Does chronic fatigue syndrome, or ME, even exist? In an extract from her book Cure, Jo Marchant tells the story of Samantha Miller, one sufferer of the controversial condition.
When I read that, my stomach dropped.
The article itself is an interview with a woman who says she has been cured of ME/CFS through Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). Although later on in the article she says if she gets too stressed at work or does too much she becomes ill again, so her definition of cured is very different to mine.
Then it goes on to talk about the PACE trial, and how the findings show that, although GET and CBT didn’t work for all the subjects, it worked better than pacing. They make out that because this trial proves that ME/CFS is at least partly psychological (which the trial does NOT, there is still missing data from the trials which the Queen Mary University of London is refusing to release – but that’s a whole other can of worms), the patient groups were so furious with the findings that they refused to accept them.
It then goes on to talk about a letter that was published is The British Medical Journal in June 2014 postulating that ME/CFS was in fact just a “meme”, in this context meaning a psychological idea or behaviour that is transmitted from person to person. This, for obvious reasons, went down even worse than the PACE trial.
The article was written by Jo Marchant who has recently released a book called Cure, which is all about the placebo affect and the minds ability to heal the body, so this was the angle the article was written from. Now let me say, I agree that the mind is extremely powerful and there is a lot about we don’t know. I agree that the placebo affect is fascinating, and that mind over matter can sometimes be very useful. The article talks about how there is a problem with medicine at the moment where the brain and body are treated completely independently. I agree with this as well, and I think that’s where the stigma of mental health issues partly comes from.
However, to use ME/CFS as the only example of an illness that demonstrates this idea in the article, is subtly (or not so subtly really) reinforcing the idea held by much of the medical community and the public that ME/CFS is all in the mind. The article also doesn’t explain the real reasons behind why the patient groups disagree with the PACE trail, it’s not just because we don’t like the results, it’s that the science is seriously flawed, and the university behind the study is refusing to be transparent about it!
I also understand that GET and CBT does work for some people. I have tried GET, I tried it every day for 2 years, and did I get better? No, I got markedly worse, but I am fully able to accept that just because it didn’t work for me, doesn’t mean it’s that way for everyone. To imply that some ME/CFS patients are refusing this treatment because they don’t like that it insinuates their disease is psychological is completely ludicrous.
On the whole this article is better than a lot of the others that have been published recently. It does give you an insight into what living with ME/CFS is like, and it does say (although once, is a short sentence) that “many authorities now agree” that it’s a physical illness. But at the same time it insinuates that GET and CBT are conclusive treatment, and by calling it a “controversial” condition inferring that doctors disagree over whether it is a physical or mental illness. I can’t decide if I it makes me feel better or worse that the undermining of ME/CFS sufferers is subtle. On the one hand there are some good points, but on the other, the negative conclusions people draw from the article might be subconscious, so they might not realise that they’re being drawn into the prejudice.
ME/CFS patient groups are often made out to be militant and oversensitive by the media and healthcare professionals. We are portrayed as spoilt children throwing our toys out of the pram because we’re not getting what we want, but we didn’t want any of this… We didn’t want to have to fight to get proper medical treatment, we didn’t want to have our independence, social lives and futures stolen away by an illness that baffles doctors. If you were constantly silenced, ridiculed, and had no treatment, forced to live in this horrific limbo you’d be angry, you’d be so fed up that nothings changing, you’d have no choice but to be militant.
A couple of weeks ago of another study was released showing that ME/CFS patients are six times more likely to commit suicide than the average person. I mean, is it any wonder? I’ve been trying to think of analogy to explain what it feels like to have the majority of the world question whether the illness that has completely ruined your life “even exists”. I mean… there truly are no words to express the disempowerment, the anger, the frustration, and complete sense of hopelessness that I feel. It destroys any sense of self esteem, any confidence you have in yourself or your beliefs is shaken to its very core. It changes you as a person in ways you couldn’t have imagined before.
I hope that one day it won’t be like this. I hope that one day I’ll be better and be able to shout from the rooftops about how unfair and soul destroying living like this is, and I hope that day comes soon.
Until next time, Rhosyn.
P.S. Well done if you got to the end, it was pretty long!