USA: National Institutes of Health (NIH) intramural ME/CFS study

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Trish said:
I guess we'll just have to wait until publication day on Wednesday. Not much point speculating before that. I don't hold out high hopes on the grounds that they don't, from their previous papers on PEM, have a good grasp of what it is, so how did they manage to diagnose accurately, and the small sample size.
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I agree.
Interesting though (for me) that they struggled to find "true ME/CFS" i.e. many (/most?) didn't meet the criteria. I think Jonathan's comment, re this "grey" area being useful, is interesting.
 
FMMM1 said:
Interesting though (for me) that they struggled to find "true ME/CFS" i.e. many (/most?) didn't meet the criteria.
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Wasn't it. I'd assumed a good number of the exclusions could be due to comorbidities / medication / recent surgery / ongoing investigation / pregnancy or fertility treatment / etc, but it would be puzzling if that wasn't the case.
 
Kitty said:
Wasn't it. I'd assumed a good number of the exclusions could be due to comorbidities / medication / recent surgery / ongoing investigation / pregnancy or fertility treatment / etc, but it would be puzzling if that wasn't the case.
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Interesting ---comorbidities --- cause or consequence or unrelated? If unrelated then presumably those with that [co-occurring] disease have the same incidence of ME/CFS as the rest of the population -- 0.4% or whatever?

I think the problem with PEM is that it's based on a questionnaire --- although maybe that's accurate?
 
FMMM1 said:
Interesting ---comorbidities --- cause or consequence or unrelated?
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People with co-morbidities might be excluded from some trials because they have diseases with overlapping symptoms, so it's not possible to say for certain which of them is causing Symptom X or Y. This could make the results of some studies unacceptably muddy.

I wasn't even sure I'd able to take part in DecodeME because I have psoriatic arthritis, which can cause severe fatigue during active phases. Also, my medication has side effects in some people that might be confused with ME symptoms. (In the end I was invited to submit a sample, but the disease might rule me out of some types of trial, specially if medication's involved.)
 
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