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

Hutan said:
It seems to me that, for an organisation providing medical advice, this management of obsolete reviews is really dangerous. It could be worth having a look around the Cochrane Library to see how reviews that have later been shown to be wrong have been dealt with. I know the review of Traditional Chinese Medicine approaches for CFS was withdrawn. But, it seems that earlier versions of the Larun review are not actually withdrawn.
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If I'm not mistaken, publications like this tend to be in packaged formats, such as PDF, re-hosted versions (which I assume is one way they make money from licensing) or in printed form, meaning there are several copies out there so that even if the original were flagged, the copies would not get updated and it's up to individuals/organizations to be aware of it because it's too much to keep track, and organizations like Cochrane are inept anyway, would botch this.

So they're not used to dealing with live documents like this, just haven't updated their culture and skills to account for it. And I don't mean Cochrane, I mean health care in general, because pretty much all medical academia seems to have this problem, one that information specialists have actually fully solved.

I mentioned this previously but in software development, it's critical to keep track of obsolete packages/libraries, with version checking built into it, especially those with identified security flaws. Many packaging systems will actually throw errors if a package/library has been marked as deprecated, and refuse to load at all if it's been marked as a security risk. This is super basic stuff that serious professionals can't just ignore. With modern technology this is trivial to deal with.

And all of this happened organically, with no one leading the charge on it. Mostly through volunteer work, because this is important for our work, it affects outcomes and we care about that. But also through important players like code repositories (think GitHub), where there are additional checks that can mark repositories as unsafe, even lock them. Clearly this isn't the case in medical academia, where they haven't updated much from paper.
 
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Versioning systems have been around for donkeys years to solve precisely this problem.

They've even been in the common office packages for ages, going all the way back to Lotus who I think had the first version in a general productivity suite, granted they went bust shortly after but.....other similar products started including them.

There simply is, and can be, no excuse for what is in effect a publishing/library company to not be using this sort of thing, 30 years after it became cheap and mainstream.

Bunch of computer illiterate mushrooms.
 
rvallee said:
If I'm not mistaken, publications like this tend to be in packaged formats, such as PDF, re-hosted versions (which I assume is one way they make money from licensing) or in printed form, meaning there are several copies out there so that even if the original were flagged, the copies would not get updated and it's up to individuals/organizations to be aware of it because it's too much to keep track, and organizations like Cochrane are inept anyway, would botch this.

So they're not used to dealing with live documents like this, just haven't updated their culture and skills to account for it. And I don't mean Cochrane, I mean health care in general, because pretty much all medical academia seems to have this problem, one that information specialists have actually fully solved.

I mentioned this previously but in software development, it's critical to keep track of obsolete packages/libraries, with version checking built into it, especially those with identified security flaws. Many packaging systems will actually throw errors if a package/library has been marked as deprecated, and refuse to load at all if it's been marked as a security risk. This is super basic stuff that serious professionals can't just ignore. With modern technology this is trivial to deal with.

And all of this happened organically, with no one leading the charge on it. Mostly through volunteer work, because this is important for our work, it affects outcomes and we care about that. But also through important players like code repositories (think GitHub), where there are additional checks that can mark repositories as unsafe, even lock them. Clearly this isn't the case in medical academia, where they haven't updated much from paper.
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Maybe but the state of information management in university libraries in general is a different matter I think. It seems an area where at least the better ones are really in top of things.

plus I assume given business has things like EBSCO collecting access to numerous journals there is a chance that access to Cochrane for many professional licenses (how most in the jobs or studying would access it) could be through a larger entity.

Ok I’m seeing from a quick Google they are indexed in databases including PubMed, web of science, scopus
 
I guess this is what Cochrane calls keeping us updated.

Posted on the letters thread:

Science For ME said:
Received today, 27th September 2024:

Dear Andy,

To update you, we are still investigating your complaint about the 2019 Cochrane review, "Exercise therapy for Chronic Fatigue Syndrome" by Larun et al., and we will update you as soon as we can.

Kind regards,
Cochrane Complaints
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This may be completely unrelated , and / or I may be misremembering , but has the classification of ME/ CFS been moved in Cochrane .

Could the delaying tactic be to facilitate the onward rise of FND to maintain a narrative.

This could of course be mindless 4-30 am conjecture when I should be asleep.
 
Latest petition update:
1 October 2024 Enough is Enough

Thanks to our supporters
Thank you so much to all have signed and shared the petition link.

Thanks to Fatigatio e.V. Bundesverband ME/CFS in Germany for adding their support to this campaign. We now have 77 organisations, including most national ME/CFS charities, calling for the Larun et al review to be removed. You can find the full list here. If an organisation you are connected with isn't listed, please tell them about this campaign.

People with ME/CFS-like Long Covid are also being targeted with psychobehavioural therapies such as graded exercise, with the Larun et al review cited as evidence of utility. If you know of a Long Covid organisation, please let them know about this campaign.

Five years of the Cochrane Larun et al review
With the fifth anniversary of publication of the exercise review rapidly approaching (2nd October), we sadly report that there has been no discernible progress on any front.

More on broken promises
None of the broken promises we reported in May and August have yet been fulfilled, and there are more.

* Broken promise 1. Resumption of monthly updates from the Independent Advisory Group (IAG) - still broken
* Broken promise 2. Revision of the editorial note on the 2019 Cochrane Exercise Therapy Review - still broken
* Broken promise 3. Appointment of a doctor who treats ME/CFS as a new IAG member - still broken
* Broken promise 4. Public consultation on a report on problems with previous reviews, first promised for autumn 2021, then for early 2024 - still broken

Here are the next two broken promises:

* Broken promise 5: Cochrane keeping us "informed of progress"
In an April 2024 letter from Cochrane to S4ME, after stating that the complaints response process will take 'some time', they said:
"In the short term, some of the questions will be addressed on the Cochrane project website. We will keep you informed of progress."
We have not been informed of progress, nor has there been anything on the Cochrane website since Hilda Bastian's last update in December 2023.

* Broken promise 6: IAG lead Hilda Bastian providing a route for public communication
Hilda Bastian has provided an IAG email, cochrane.iag@gmail.com and a 'Talkpage'.
Members of S4ME have described the talkpage and emails as a 'lightning rod', or a 'black hole' where community frustration is channelled and disappears. As far as we know, email communications are only read by Hilda Bastian, it is left to her whether to share emails with the IAG or anyone at Cochrane. Some posts to the talkpage wait weeks in moderation, and when posted, questions remain unanswered and nothing changes.
---------

Enough is enough
In our letter of 7th August 2024, we asked some questions about progress on our formal complaints that were sent to Cochrane in October 2023. The questions remain unanswered; the complaints remain unresponded to. We said in an earlier update that Cochrane's quality control processes are broken. A year of no useful response to well-considered complaints is not good enough for an organisation that provides information to guide clinical decision-making.

In that August 2024 letter we said we expected
- a thorough review of our complaints and the harms evidence we submitted, with a report back to us within the next two months;
- withdrawal of the 2019 review by 2nd October 2024, five years after publication

We concluded:
Anything less, and we will be forced to conclude that Cochrane does not take its own policies and charitable objectives seriously, and to consider our next steps including taking our complaints to other bodies.

The deadline is a day away, and there has been no progress from Cochrane. People continue to be harmed by the flawed review. Therefore, we are starting work on making formal complaints to organisations such as Cochrane's funders and the UK Charity Commission, and to contact the media. If you can help, please contact a moderator at the Science for ME forum.
 
The latest update has generated further signatures, total is now 11,627 showing there are potential supporters in the ME/CFS and Long Covid community who weren’t already aware of the petition.

Please consider resharing the petition on your social media if you’re active there. Please also highlight the petition to any organisations or groups and ask them to share or reshare it.
 
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