Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

This is the part that confuses me most. It says advocacy groups will be involved. S4ME asked to be involved. Yet we have received no information on how and when we should make our suggestions for IAG members. So where have these 'suggestions' come from? Random individuals? Twitter? Private invitation to selected advocacy groups? Public invitation?
I won't claim to be in contact with all advocates and advocacy groups but I do have some connections with various groups and I've not heard anything about any of them being involved with this. It doesn't lead me to have any confidence in the process, especially considering the totally inadequate communication levels.

I appreciate that Covid has had a major impact across the globe, but that doesn't stop at least minimal communication taking place, if the will to do so is there.
 
Well, at least I see no promise of transparency in the "new way" so it's not like not delivering on it is a failure. Well, it is, but it wasn't promised.

A significant problem was secrecy and things not happening the way they should have because of said secrecy, multiple arbitrary exemptions from the norm, none of which were justified. Once those things were exposed, they were forced to admit to those failings, which were protected only because of the secrecy under which the arbitrary exemptions were executed.

An organization that cannot deliver anything should not have this much power over millions of lives, completely unaccountable and without independent oversight. None of the people responsible for the old reviews and how they were published have any stake in the matter, it doesn't affect a damn thing in their lives so they can take all the time they want. This is why things are so terrible, they are completely detached from what they leave behind and they never have to, Marie Antoinette syndrome, or whatever.

Especially as the pandemic obviously raised the stakes, which Cochrane clearly does not understand.
 
yeah. I noticed that.
It's weird because i think Hilda left Cochrane (as a member) mainly (solely?) over the fact that reviews are not universally open access. But since getting involved in the exercise review and appointed as leader of the IAG she is doing other Cochrane stuff - maybe just COVID related? And the IAG stuff has stalled. Hopefully the report will explain all...
 
It's weird because i think Hilda left Cochrane (as a member) mainly (solely?) over the fact that reviews are not universally open access. But since getting involved in the exercise review and appointed as leader of the IAG she is doing other Cochrane stuff - maybe just COVID related? And the IAG stuff has stalled. Hopefully the report will explain all...
It seems Hilda has become a Cochrane member again - added to the database in March 2020.
 
I see no evidence of quality assurance anywhere in the process of clinical evidence or medical practice. QA does not end on release, it is a continuous process that not only works with feedback but is proactive in gathering information, all information, so as not to miss anything. It is obsessed with not deleting information. The rare good kind of obsession.

Ever wondered if the QA their stats code used to analyze trials.
 
It's weird because i think Hilda left Cochrane (as a member) mainly (solely?) over the fact that reviews are not universally open access. But since getting involved in the exercise review and appointed as leader of the IAG she is doing other Cochrane stuff - maybe just COVID related? And the IAG stuff has stalled. Hopefully the report will explain all...

I did wonder if there are some politics going on around who gets appointed since they say clinicians and researchers. I could imagine someone in Cochrane pushing for people with a particular view.
 
I'm confused. Which report are they waiting for?

A report from Hilda
Tweets said:
Hilda asked for input from people as soon as she was appointed Feb 2020


Said there would be news in April 2020


Started compiling a database of commentary on the Exercise review in May 2020.


Recent word was a report well before the end of February 2021.


The latest is
 
a report about setting up a committee to debate how to write a report to answer an enquiry about a previous report on a review of an update of a review that was out of date but needed updating but was ok to leave in place while they reviewed how to set up a committee to review the evidence, stir twice and repeat.
 
I see @Hilda Bastian is co-hosting the welcome session at this Virtually Cochrane event on the Thursday 22 April. If anyone interested in registering.

https://uk.cochrane.org/our-work/upcoming-event-virtually-cochrane-2021/virtually-cochrane-programme
Maybe @Hilda Bastian will take the opportunity of this event about evidence and uncertainty to give headlines from the much awaited progress report on the plans for the independent advisory group to engage with stakeholders on exercise in ME/CFS.
 
Maybe @Hilda Bastian will take the opportunity of this event about evidence and uncertainty to give headlines from the much awaited progress report on the plans for the independent advisory group to engage with stakeholders on exercise in ME/CFS.
I just registered as a patient advocate. And I can now access the online platform
 
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