This is what researchers who are studying aspects of CFS/ME that activists don't want studied are up against.
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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.
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Oh! My daughter is under Bath specialist, they use both in their letters to me!
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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.
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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?
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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.
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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)
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Did you and the team not spot this potentially harmful conflation? (2/2)
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.
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Surely, if you see your work being misinterpreted (as with this conflation) with potentially harmful effects, you have a duty to speak out?
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