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

[CFSKate]

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.

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.

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.

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.

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.

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

Can I ask how much you know about M.E? Because I'd say I'd have said exactly the same before I knew the reality of severe M.E.

For the most severe sufferers, they can't sit, they can't raise their arms, they can be paralysed. For some standing is completely impossible let alone walking. Patients who have been encourage to try a bit of walking for the benefit of their health have been pushed into much worse health. It's a horrendous illness.

I've come to this late, but thanks CFSKate, very, very interesting.

Don't have CFS but do have another condition with fatigue. It's impossible to explain the harm when 'professionals' believe such things, that revolve around blaming people for not just, getting better.

Much easier and I suspect more satisfying too, to proclaim 'nothing's wrong but deconditioning. You must simply mobilize more', than actually recognizing someone's pain and incredible difficulty in living.

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

I don't think so. Not for the recovery from the illness. An acquaintance suffers from severe ME and trying to exercise despite it worsened her illness horribly.

Of course, in general, moving a bit is a good thing, as muscles atrophy, etc, if you don't, but from what I know about the cause of ME, I do not see how exercise should help at all, but I do know it is massively harmful.

A person whose ME has been healed (not sure if there's any proven cases, there doesn't seem to be a real treatment offered) would profit from increasing exercise to regain muscles, etc.

But first the illness must be treated, and there is no way exercise could help. Someone with some unspecific kind of "CFS" perhaps, but if you know it is ME ... no.

This story is now starting to appear in the British press.

www.dailymail.co.uk/news/article-4790904/Why-doctors-patients-war-M-E.html