Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

Hutan said:
We still have a gap in our geographical coverage of supporting organisations when it comes to the Americas - North, Central and South. It's just Millions Missing Canada flying the flag for that region so far.

Also oddly a gap in Australia, despite the number of Australian individual signatories on the petition being relatively high.
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Yes, as an American I'm both surprised and a little embarrassed. What's going on with ME Action?! Solve?! Even, er, the Other Forum?

I dunno. Maybe because S4ME has a more British flavor it hasn't reached more Yanks?
 
As per that last post, Solve have been helpful in promoting the petition, and we are talking with them about the letter. Decisions understandably can take a while, especially in larger organisations.

But yes. Maybe many US advocates have focussed on other important advocacy targets and aren't so aware of the Cochrane reviews and their influence on GET and CBT recommendations in medical textbooks and training?

Possibly the heated discussions about the promotion of spinal surgery as an ME/CFS treatment has created some issues with some organisations supporting anything originating from here? If so, hopefully we can move on from that.
 
Ah yes, I had forgotten about that. I have sensed over the years that we have a bit of a reputation for being "the mean kids" (not just among other patients; plenty of researchers with savior complexes who have come on here over the years expecting nothing but fawning gratitude have been shocked when we, you know, pointed out weaknesses in their work--because how dare we actually care that medical research be about fixing us rather than stoking their egos! But I digress...:rolleyes:).

That would be a real shame if people and organizations kept their distance from this over personal differences. This is about helping themselves and other PWME rather than any sort of props to S4ME (even as, of course, you have my undying admiration @Hutan!--and not just for this petition but for all of your insightful contributions here).

Sorry. I know I'm way off topic now.
 
This has just come by email from the editor in chief of Cochrane:
_________________

Dear members of the Science for ME Committee and Forum,
Thank you for your email and sharing the open letter and petition.

After an unplanned hiatus, the Independent Advisory Group resumed its work last month, including preparing to resume public reporting and general communication. A first report and project website update is planned for release in the next few weeks. Reports and updates will be notified to those who subscribed to the email list at exerciseforme-cfsupdates@cochrane.org

We do regret the lengthy delays in this project, and are taking the concerns and requests in your letter into consideration.

Please subscribe to the above email for further reports and updates. Thank you.



King regards,

Office of the Editor in Chief
____________
 
Wow, what a coincidence that is all in progress at the same time as the open letter and petition!

Great work by Trish, Hutan and all to force this out of them, although I shall remain sceptical of their "next few weeks" timescale until I actually see them publish something.
 
Trish said:
King regards,

Office of the Editor in Chief
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And an insult to patients of course, yet again.
Why should anyone believe something is about to happen.
And why does it matter? Any reasonably intelligent person can see the whole re-review process is a waste of money and time.

All power to the petitioners' elbow.

Why do we not have a College of Physicians capable of telling Cochrane they are being idiots? Presumably because the politico physicians are idiots too.
Thank God there are a few Peter Barrys about.
 
Trish said:
We do regret the lengthy delays in this project, and are taking the concerns and requests in your letter into consideration.
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Although superficially conciliatory this letter yet again fails to address any of the substantive issues raised in our recent communications and the petition, rather it just repeats the previous 2020 failure to address the issues fobbing off serious complaints about their failure to adhere to their own policies and to good scientific practice by saying that people’s concerns would be dealt with by the independent advisory group (IAG) as part of the wonderfully innovative new review process.

Given Cochrane have already admitted the existing published 2019 review is flawed, surely any questions about that and about their handling of complaints relating to their failed processes should be dealt with by Cochrane themselves now independently of any plans relating to a new review process. They need to acknowledge their response to well found concerns about their actions so far has been grossly inadequate and need to address the status of the existing review independently of any plans to develop a new review.
 
Trish said:
We do regret the lengthy delays in this project, and are taking the concerns and requests in your letter into consideration.
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This isn't even proper English. Maybe the author does not have English as a first language. To take the concerns and request into consideration would need to refer to some specific action being taken that might be influenced by these concerns. Moreover, to take into consideration merely means judge whether or not relevant.
 
I just looked back at Cochrane version history for their exercise reviews (see https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/information#versionTable ) and was reminded that this has been going on not just since the publication of the current revised version in October 2019, but since the publication of Larun et al’s first version of their exercise review in February 2015.

Cochrane having been failing to adequately address these issues now for the best part of a decade further want us to wait for however many years it will take go through the new review process.
 
“In the next few weeks” is highly elastic and therefore meaningless as a timeframe - fudge

referring to “last month” in a response on the final Friday of a month is also fudging, giving the impression that it refers to August (before the letter) when it could mean in the last month September (after the letter)

taking into consideration -more fudge

this amounts to a standard response sent by someone in the office of the editor, not even under the editor’s signature, as a former civil servant I can say this is minimum possible effort they could make in reply


nothing indicates that the views of 8000 people and 30 plus organisations are being respected.


Eta it sits just above “thank you for your recent correspondence the contents of which have been noted”
 
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Peter Trewhitt said:
I just looked back at Cochrane version history for their exercise reviews (see https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/information#versionTable ) and was reminded that this has been going on not just since the publication of the current revised version in October 2019, but since the publication of Larun et al’s first version of their exercise review in February 2015.

Cochrane having been failing to adequately address these issues now for the best part of a decade further want us to wait for however many years it will take go through the new review process.
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Good find. This is highly pertinent I think in flagging how unreasonable and ingenuine a response it is for them to try and conflate and distract the question to withdraw by talking about what is another and different matter (that suffers from similar protocol and procedure issues) instead of even addressing the ACTUAL question the petition asked.
 
Peter Trewhitt said:
I just looked back at Cochrane version history for their exercise reviews (see https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/information#versionTable ) and was reminded that this has been going on not just since the publication of the current revised version in October 2019, but since the publication of Larun et al’s first version of their exercise review in February 2015.

Cochrane having been failing to adequately address these issues now for the best part of a decade further want us to wait for however many years it will take go through the new review process.
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Thanks Peter, yes, I noted that it has been going on since 2015 in the attachment to the letter and linked the history, and commented that it had been revised 5 times. Good to remind us this has been going on so long.
 
PETITION UPDATE
30 September - Cochrane has replied - but don't get excited yet

SEP 30, 2023 —

We wrote another open letter to Cochrane yesterday, 29th September, emphasising the need for urgent action.

We have today, 30th September, received a brief reply from Cochrane to the open letters and petition, copied below:

"Dear members of the Science for ME Committee and Forum,
Thank you for your email and sharing the open letter and petition.

After an unplanned hiatus, the Independent Advisory Group resumed its work last month, including preparing to resume public reporting and general communication. A first report and project website update is planned for release in the next few weeks. Reports and updates will be notified to those who subscribed to the email list at exerciseforme-cfsupdates@cochrane.org

We do regret the lengthy delays in this project, and are taking the concerns and requests in your letter into consideration.

Please subscribe to the above email for further reports and updates. Thank you.

King (sic) regards,

Office of the Editor in Chief"



We note that Cochrane has not addressed our primary request, the immediate removal of the flawed 2019 review by Larun et al.

We also note that Cochrane believes that the expressions of concern about the review from nearly 8000 individuals and over 30 organisations dedicated to the support of people affected by the review do not warrant a response by a named officer. Instead, it seems the job of responding has been delegated to an unnamed assistant.

The Science for ME committee and staff will continue to support this petition and related advocacy actions until Cochrane no longer provides a platform for a poorly executed and biased review of exercise therapies for CFS or ME/CFS.

The number of organisations supporting the open letter has increased by three since the last update:

RME Östergotland (Sweden)

#MEAction UK

ME CFS Foundation South Africa



Thank you all for caring about this issue. Please do keep spreading the word and encouraging others to sign.
 
As @NelliePledge points out above this feeble response gives us no idea if this resumption of action by the Independent Advisory Group would have happened any way or is a result of our open letter, but worse we have no idea if this represents a serious attempt to address what has gone wrong with the existing review and Cochrane’s apparent inability to deal with well founded concerns.

Is this in any way intended to address the very serious outstanding issues or to pretend to the wider Cochrane community and the public that action is being taken whilst yet again kicking the can down the road?
 
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