Hoopoe
Senior Member (Voting Rights)
I think I have understood something important that could explain why there exists two groups with very different views on ME/CFS that each think they are right.
The more a diagnosis is unspecific, the more it matters where study participants are recruited from. ME/CFS diagnosed with Fukuda criteria is probably quite unspecific (and the Oxford definition even more so). If you recruit from psychiatry care pathways, you'll get patients that fit this pathway (or else they would not stay there) and can benefit from CBT/GET. This may be what led the CBT/GET proponents to believe they had solved ME/CFS.
When they applied their ideas to a broader patient population in clinical trials that are more representative of the average patient, the treatment didn't work.
This idea of place of recruitment having a great influence on what phenotypes are actually contained in a study cohort could also explain part of the difficulty the field had in reproducing results.
This may have been obvious to some, but I can't recall having this idea stated clearly before.
The more a diagnosis is unspecific, the more it matters where study participants are recruited from. ME/CFS diagnosed with Fukuda criteria is probably quite unspecific (and the Oxford definition even more so). If you recruit from psychiatry care pathways, you'll get patients that fit this pathway (or else they would not stay there) and can benefit from CBT/GET. This may be what led the CBT/GET proponents to believe they had solved ME/CFS.
When they applied their ideas to a broader patient population in clinical trials that are more representative of the average patient, the treatment didn't work.
This idea of place of recruitment having a great influence on what phenotypes are actually contained in a study cohort could also explain part of the difficulty the field had in reproducing results.
This may have been obvious to some, but I can't recall having this idea stated clearly before.
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