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

https://twitter.com/user/status/1285547582631088128


I have, and found it sadly lacking with regards ME/CFS research.

 

https://twitter.com/user/status/1285660849080852481

 

I was a bit put off by the article because it misrepresents NICE's non-statement, but it's otherwise a great summary of the situation and has very strong words from Garner. It clearly marks a shift in attitude. So weird that it's published on BMJ while the editorial board itself has been involved in defending this indefensible nonsense on many recent occasions.

How incredibly silly will that whole "WE ARE BEING SILENCED" thing will look in the next few months. Especially with the details having been made public as it happened. This process could not have been more inappropriate and corrupt. Politics and medicine make for a toxic mix.

 

Hilda Bastian: Steps to reduce bias in systematic review protocols
(The Publication Plan)
https://thepublicationplan.com/2020/07/22/steps-to-reduce-bias-in-systematic-review-protocols/

 

I finally got round to submitting a comment about this on the CBT for CFS review

https://healthycontrolblog.wordpres...hranes-2008-cbt-for-cfs-review-3-august-2020/

 

This is also relevant here:

Scottish Government Issue Caution Notice for Graded Exercise Therapy in ME/CFS & Post/Long-Covid

https://meassociation.org.uk/2020/1...d-exercise-therapy-in-me-cfs-post-long-covid/

Discussed here:
https://www.s4me.info/threads/the-m...cise-therapy-in-me-cfs-post-long-covid.17297/

Especially:

 

The Cochrane review is not being revised - it has been already been revised to say (still) that GET is effective at reducing fatigue. Cochrane are going back to the drawing board and doing a new protocol for the review - so it's a completely new review, not a revision. Cochrane have not made this clear, and that's why it's so ridiculous they have not withdrawn the existing "revised" review.

 

In other news, my 2nd comment on the 12 year old CBT for CFS review which is now used in four clinical guidelines has been published nearly three months after I submitted it, with another inspiring response from Cochrane Editor John Hilton. Fun fact, I applied for John's job ages ago, and was quite upset (at the time) not to get it! I know John quite well. He's a nice guy. I wonder if I had got that job, I would be writing such responses to people commenting on Cochrane reviews...difficult to get my head round that concept...

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001027.pub2/read-comments

 

Not until ME is moved out of the mental health corral, surely?

 

You'd have thought wouldn't you? Cochrane changed their withdrawal policy in August 2019 to allow this ridiculous situation to happen. It's absolutely nuts. When I suggested on this forum that the timing of the policy change was a bit spooky - ie a month after I and others met with the Editor in Chief and begged her to withdraw the exercise review rather than publish the amended version, I was told that there was no evidence that there was any connection between the complaints about the exercise review and the long campaign to get it withdraw and the policy change. True, and I think I have no way to collect any evidence either as Cochrane is not subject to FOI. But I intend to ask about it anyway - minutes of the meetings etc. Usually a Cochrane policy change takes years of consultation - many many meetings, working groups etc.

 

Have they explained what does happen then with a review in this situation? Does it just stay there forever? Can it be replaced by anything else?

What happens if a different set of authors want to review the exact same topic? Would it never be accepted by Cochrane, on the basis that there is a pre-existing review?

 

When ME comes out of Cochrane's mental health straitjacket, propose a review that excludes obsolete criteria, such as Oxford, and looks primarily at objective outcomes. A quick job, I imagine.

 

I think I will lodge a formal complaint about the conduct of the Editor-in-Chief regarding the introduction of the new withdrawal policy which I suspect is the only way to get out of continuing the correspondence via comments between me and John Hilton. There is a thing called "The Cochrane Library Oversight Committee" which is the nearest thing to independent you get within Cochrane - so probably not very independent. But I will give it a whirl. https://www.cochranelibrary.com/help/complaints

 

At least that will leave a document trail. Thank for your efforts. I have no expectation that it will lead to even a common sense result never mind justice but I hope that history will see what they have done to us.

 

Common sense is in very short supply at Cochrane. They have policies and processes aplenty to follow instead, which they seem to think makes up for it. So yes, it will be an academic exercise, but as you say, at least there will be a written record.

 

Is anyone receiving updates about the IAG and its progress?

I sent my submission in April, but have not heard anything back yet.

I also posted it here: https://lucibee.wordpress.com/2020/...sures-in-cochranes-exercise-review-on-me-cfs/