S4ME letter to Cochrane re: proposed new Exercise for Chronic Fatigue Syndrome review and patient involvement

MSEsperanza said:
Thank you everyone who have pursued the requests the letter asked for.

So the link now is added at a place a bit less easier to ignore, and it says:

'A statement from the Editor in Chief about this review and its planned update is available here: www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome. '

View attachment 11067

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/full

Not able to comment on this at the moment.

Also don't want to distract from forum members' work on contributing to ME advocacy and better science for ME in all the fields where this is most urgently needed, be it in the general field of 'MUS' trial methodology or the specific involvement with the Cochrane IAG or the NICE guideline revision or the quality of biomedical research etc.

So for now, just this question: Did S4ME receive any further reply from Cochrane or the IAG to our letter's requests, any reply apart from Karla's one line posted above -- any notification about the IAG or the link added to the review?

Edited to mention advocacy work and the work for the NICE committee.
Click to expand...
That's not nearly good enough. The warning should not be click-bait, it should be specific that it is about the review currently being re-evaluated for being entirely inadequate. It should also be in a colored box, something like a red background, much more prominent.

This is design and communication 101. When you want to bring attention to something you highlight it, make it stand out, especially when it is meta content that informs about prior existing content. When you want to make it blend in the background you present it the same as the rest of the content, even though it is not itself part of the review, which is what it looks like.

Very disappointed in Cochrane yet again, showing inability to do the most basic things a publishing company is easily able to do. Pathetic. Do better! We're literally asking for the bare minimum and you fail every single damn time at meeting this lowest of standards.
 
Our original letter was highlighted to @Hilda Bastian (before we found a workaround to allow her to be able to post on the forum) and she has "added Science for ME to the list of groups of people with ME/CFS with an interest in further involvement, and you'll be hearing more as we progress, including discussion of how to involve groups and interested individuals"

For those who wish to receive updates directly, "you can sign up for Cochrane's formal announcements by emailing: exerciseforme-cfsupdates@cochrane.org" - I assume a simple blank email is OK.
 
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