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New York Times: Dodgy British ME/CFS research harming patients

(5 Posts)
CFSKate Fri 31-Mar-17 10:55:36

This is the trial that was part-funded by the DWP.

EnormousTiger Tue 04-Apr-17 18:38:57

We haven't got to the bottom of ME at all.
I do think doing a bit of movement even if just getting yourself from the bed to the door is probably going to have a bit of an advantage and even if only 7% benefit from it very very moderate movement is probably not a bad thing.

hubris Thu 06-Apr-17 12:13:33

Interesting, CFSKate. My issue is that when people read studies reporting on the benefits of exercise and psychotherapy they might rather get the impression that if CFS patients just move about a bit more and think positive they can overcome it all which is immensely unfair.

Ultimately I think it will be classified as a metabolic disorder triggered off by one of a number of viruses, even if you didn't know you'd had the virus. I think there is some kind of impairment in the speed at which CFS sufferers generate energy for function and recovery at the cellular level.

I had post viral fatigue once but luckily it went away quite quickly. I have not forgotten the invisible but overwhelming fatigue.

Jux Wed 17-May-17 15:17:09

I am interested in this as I have ms, and a large part of my problem is fatigue too. I think the two are linked - I've met families where one person has ms and another has me. I don't know how often that happens in reality, only my own anecdotal experience.

In ms - well, what I have anyway - I am absolutely positive that you are right about the impairment in generation of energy, I know that I have been certain that in myself I just don't generate energy as I used to before ms - and I was v fit and walked everwhere and was constantly on the move.

Jellytussle Thu 18-May-17 08:34:53

even if only 7% benefit from it very very moderate movement is probably not a bad thing.

As I understand it that article says that there's no difference between the 'recovery' rate among those receiving treatment and the control group. In other words 7% of patients 'recover' according to the test criteria regardless of whether they are following the programme of psychotherapy and exercise.

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