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

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.

 

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

 

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 seems Hilda has become a Cochrane member again - added to the database in March 2020.

 

I'm confused. Which report are they waiting for?

 

A report from Hilda

 

Honestly no idea. A report. About what? Nobody knows.

 

Once again I am reminded of the Hitchhiker's Guide and why the white mice felt it was necessary to build the Earth in the first place.

 

I suspect the summation will not be a nicely rounded 42 in this case.

 

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.

 

No but the way things are going I wonder if, like Hitchhiker's, they already have the answer and just have to find the right question.

Again.

 

If it would only prove to be inconvenient though.

 

I just registered as a patient advocate. And I can now access the online platform