Talk

Advanced search

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

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

www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html

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.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now