World EBHC Day : October 20 2022

There's a lot there that is very ironic when looked at from the position of a person with ME/CFS.

e.g. Partnerships
from the first document:

That last sentence pretty much sums up the Cochrane Review of exercise as a treatment for ME/CFS - they'd like the appearance of collaboration with people with ME/CFS on the review with its advisory committee, but "vested interests, bureaucracy and inability to change" mean that the process is going nowhere useful.

from the blog about NICE

That's an interesting way to describe the 'lay members'. The first group of people bring their expertise in systematic reviews and health economics analyses; then there's the clinicians; and then, separated off by a comma, are the lay members with "an interest in the topic". There's no recognition that the lay members bring expertise. Perhaps it's pedantry, but the sentence construction betrays the bias. They could have easily said "The guidelines are produced by independent [advisory] committees of people with expertise in evidence analysis, health economics, clinical care and the patient experience."

Describing NICE's approach as "The guidelines are produced by independent advisory committees" is interesting too. My impression is that the NICE ME/CFS committee wasn't an advisory committee at all, it led the production of the guideline. Contrast that with Cochrane's approach, which traditionally has involved anyone with a particular agenda to push volunteering to write the review. The involvement of an 'independent advisory group' was trialled for the Cochrane ME/CFS exercise review - it's a Cochrane invention and it was supposed to be the way of the future. But it was not at all clear what power the IAG would have to influence outcomes.


e.g. Timing

The timeline for the Cochrane ME/CFS exercise review has certainly been 'flexible'.

Looks like they want input.