ME/CFS and overlapping post-acute infection syndromes: international expert consensus framework for diagnostic standardization, 2026, Kujawski et al

[Joan Crawford]

7 is Komaroff and Lipkin. It’s not a great start to cite that terrible prevalence estimate. Why are there so many professionals that are unable to understand that ratios from tertiary specialty clinics are not representative for the entire LC population?!

The assessment of the «validity» of questionnaires doesn’t seem to account for the non-existent content validity - i.e. that we have no idea what they measure.

The diagnostic pathway they suggest is bonkers. Apparently, there is no need to rule out alternative diagnoses if the patient presents like an ME/CFS patient.
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"Apparently, there is no need to rule out alternative diagnoses if the patient presents like an ME/CFS patient."

That is truly extraordinary. The symptoms of ME overlap with many, many conditions..... Some with treatment options.

The collection of questionnaires information is useful in a research or in medicolegal context (e.g. assessing impairment etc) but not for establishing a diagnosis.

 

[Utsikt]

"Apparently, there is no need to rule out alternative diagnoses if the patient presents like an ME/CFS patient."

That is truly extraordinary. The symptoms of ME overlap with many, many conditions..... Some with treatment options.

Exactly! I had to check multiple times, but as long as you answer yes to all of the questions that equate to «does this fit with ME/CFS?», you get an ME/CFS diagnosis.

The collection of questionnaires information is useful in a research or in medicolegal context (e.g. assessing impairment etc) but not for establishing a diagnosis.

I doubt any of them have any use at all except for FUNCAP that was designed for a very niche use case. They have terrible construct validity, and are easily manipulated. FUNCAP can also be manipulated, but it does an okay job at quantifying functional capacity at a broad scale.