Preprint Mapping the Symptom Profile and Burden of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome ME/CFS: [TIMES Survey], 2026, Tyson & Fleming
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JellyBabyKid
Senior Member (Voting Rights)
Having one's custard doughnut and eating it, and still having one's custard doughnut?
JellyBabyKid
Senior Member (Voting Rights)
Do tell? I only saw one comment on FB
MrMagoo
Senior Member (Voting Rights)
There are 30 on the post on FB by ME/CFS science
There's something about this whole paper apart from what we've already discussed that disconcerted me and made me wonder what planet the authors are on. I'm too tired tonight to read back over it to find quotes, but I recall they say things like nobody has done this deep analysis of ME/CFS symptoms before.
They claim it's new to reveal the whole range of ME/CFS symptoms, which is patent nonsense - all you need to do is look at the ICC and CCC diagnostic criteria to see long lists including all the symptoms they have included.
And secondly, they make a big thing of their discovery that almost everyone has physical/muscular and cognitive symptoms, PEM and sleep problems. Given that in the UK those are the symptoms you need to have in order to be diagnosed, of course most people diagnosed have these symptoms.
Thirdly, by not asking about preexisting comorbidities, it's likely a lot of symptoms being reported are not part of the person's ME/CFS, but part of a comorbidiity, such as IBS, migraine and allergies.
Fourth, they have chosen to group and ungroup symptoms in some very odd ways, so for example someone with such severe OI and such a low PEM threshold that they are bedridden, but who does't have the long list of allergy and IBS symptoms and only has one on the sleep list, will seem to be less badly afffected than someone with mild ME/CFS, a high PEM threshold and no OI, but does have comorbid IBS and tinnitus, rather erratic sleep, and various other comorbidities may come out as just as sick on this oddly skewed scale.
They claim it's new to reveal the whole range of ME/CFS symptoms, which is patent nonsense - all you need to do is look at the ICC and CCC diagnostic criteria to see long lists including all the symptoms they have included.
And secondly, they make a big thing of their discovery that almost everyone has physical/muscular and cognitive symptoms, PEM and sleep problems. Given that in the UK those are the symptoms you need to have in order to be diagnosed, of course most people diagnosed have these symptoms.
Thirdly, by not asking about preexisting comorbidities, it's likely a lot of symptoms being reported are not part of the person's ME/CFS, but part of a comorbidiity, such as IBS, migraine and allergies.
Fourth, they have chosen to group and ungroup symptoms in some very odd ways, so for example someone with such severe OI and such a low PEM threshold that they are bedridden, but who does't have the long list of allergy and IBS symptoms and only has one on the sleep list, will seem to be less badly afffected than someone with mild ME/CFS, a high PEM threshold and no OI, but does have comorbid IBS and tinnitus, rather erratic sleep, and various other comorbidities may come out as just as sick on this oddly skewed scale.
Jonathan Edwards
Senior Member (Voting Rights)
Sadly, this is the planet that most health professionals inhabit. Measuring things for the sake of measuring is ubiquitous.