The study was based on the premise that in ME, the persistance of symptoms is caused by 'wrong illness beliefs' (ie believing you're ill when you're not), causing a fear and avoidance of activity, resulting in a deconditoning of the body due to lack of activity. (A premise which is not only completely ignorant of reality, but also deeply insulting!) You may at this point wish to note expert Dr Paul Cheney's deep concerns about graded exercise therapy, and Professor Hoopers Response to the PACE trial.
Honestly, my first reaction to these results was along the lines of 'same old, same old'. I mean, it's basically the same stuff psychiatrists, the government, and the benefits system in the UK have been harping on about for years now. I can't say it doesn't affect me, but you try to grow immune, you know?
Then came the storm of media articles, links popping up everywhere on twitter, and boy did my temper become engaged!!! I swear, my blood pressure must have doubled within seconds - all I think rushing immediately to my head, and perhaps beginning to boil while it was at it. I was fuming!
According to the hair-raisingly insulting title of The Independent's article, we should all just get out and exercise, and we'll be fine. Oh, and our illness is marked by "poor memory and concentration, disturbed sleep, aches and pains and disabling fatigue" - Oh yes, that perfectly sums up this life-destroying illness, doesn't it!!
The BBC's article was little better. Here they summed it up as 'Brain and body training treats ME'. Here our symptoms are described as mere 'tiredness, poor concentration and memory, muscle and joint pain and disturbed sleep'. If only!!!
The New York Times, thankfully, had a slightly more cynical & realistic view of the trial. (though this will make little difference for us here in the UK, it is nice to see!) It was a fairly balanced article, clearly showing the short-comings of the trial.
It took me quite some time to calm down after reading these articles. I don't often get quite so affected by these kinds of things, but for some reason it really caught me off guard tonight. I was actually on the verge of crying, I was so angry.
I think ... I think I'm just so tired of all this. The politics of this disease are as exhausting as the illness itself - and there's something really very wrong with that picture! We shouldn't have to fight for the right to be respected, to be valued as members of the community, and to have biomedical research funded into our illness.
What really upsets me about media like this is the influence it has on how the general public see M.E., including of course our friends and family. There's already enough of a problem with misconceptions and wrong & unfair judgements on us. It's heartbreaking to think of all the people out there who are so desperate for support and understanding from their loved ones, and instead receive impatience, lack of understanding, rejection, and even downright cruelty. I've been on the receiving end of that myself a hundred too many times.
So what to do now? Well, the only real option, given that I'm not well enough to do much to actively fight this situation, is to put my feelings away in a box and try to move on, move past, and not live in this bitterness. Try to breathe again. How else are we meant to be able to deal with this crap?
Warning : Compressed Anger!!!!
How are you guys feeling about this situation ... and how do you deal with those feelings in this seemingly never-ending bombardment of disappointment?
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)
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Great blogpost. I was, just like you, furious about the whole PACE trial results and of course about the deeply insulting articles in all those newspapers and more importantly, in all journals/magazines for doctors. To us - as active ME pts who keep an eye on the honesty and integrity of research - it is insulting, but we do know the thruth about those results: they are rubbish. Unfortunately, the uninitiated, but also the doctors (who have no time to make sure every research is done correctly) don't know about all the flaws of this research and that makes us to have to fight again to put it all right again.
ReplyDeleteTo me, it's horrible and disgusting that people who call themselves researchers/professors deliver such bad research and then just happily say they have found the cure to ME/CFS.
Michelle
The Netherlands
Thanks hon! :)
ReplyDeleteIt's hard to keep your eye on that truth sometimes, when people are playing magic tricks with it, isn't it? Sigh.
It's such a terrible situation where patients have to fight for their own rights, as well as fighting their own bodies. It seems so terribly, terribly wrong. When I think of all the people who've been sectioned, or forced into treatments that made them relapse into a much worse condition - and how long it's been going on for...!!!!
I've spent the last few years alternately unable to follow, then unwilling to follow, the politics - but recently started to dip my toes back into it - and found that basically nothing whatsoever has changed for the better. In fact, if anything, the last year has put us back 10 years. Grrr!!
Thanks for your comment - it's nice to meet you!! :)