Don't you worry about this. A disease named CFS/ME does not exist.
Conversation
Replying to
I do agree that this terminology is unclear. It is what official bodies in the UK offer use. I apologise and agree that CFS and ME are best kept separate.
11
17
14
Oh! My daughter is under Bath specialist, they use both in their letters to me!
1
4
Many people - including David Tuller do use combined terms. Just my opinion that they are better separated, for research at least. As they were in the PACE Lancet report.
4
2
So, you are stating that PACE was a study on #CFS, not #MyalgicEncephalomyelitis? #CFS being the fatigue syndrome as opposed to #ME the acquired neuroimmune disease?
1
9
35
This Tweet was deleted by the Tweet author. Learn more
That is right - all participants met criteria for CFS and a subset also for (one set of) criteria for ME. All had to have fatigue as the principal complaint. I hope clear in the paper.
10
1
How, then, did the results go on to inform NICE guidelines for CFS & ME? The latter having exercise intolerance as a defining symptom? (1/2)
1
5
29
Did you and the team not spot this potentially harmful conflation? (2/2)
1
16
A complex question. Actually current NICE guidance were done before PACE was published. And I am just a researcher. I don't decide how they will use research next time and what definitions of illness.
3
Surely, if you see your work being misinterpreted (as with this conflation) with potentially harmful effects, you have a duty to speak out?
Because, even if the NICE guidelines were written pre PACE, it has been used to justify a treatment harmful to many ill people
1
Whose responsibility is it then that your research isn't used in ways that you don't think it is suitable for? Do you think perhaps you should have worded things better to make it clear this was not to be used in patients with PEM and an ME diagnosis?
7





