Discussion in 'General ME/CFS News' started by John Mac, Sep 30, 2020.
Disappointing not to see the involvement of the most important people, patients.
At a guess this may be referring to Results of the poll to inform the NIH/CDC’s definition of PEM in all their future ME/CFS research.
ETA: Here is the thread where the poll was announced, Do the poll! Are the NIH/CDC going to use the right definition of PEM in all their future research? Deadline 24 January
To clarify, it's great to see the forum name there, I'm just not sure it can be accurately described as a poll BY the forum.
Looks like the paper is mostly about which tests and questionnaires to use when studying ME/CFS. It's probably useful to have a European consensus paper on this, to standardize practices.
Very. Frankly there is little to no progress to make without. Barring massively increased funding to make up for the inherent complexity of this problem, and even then. The AIDS model is the one to follow.
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