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Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
- Thread starter Hutan
- Start date
Peter T
Senior Member (Voting Rights)
This is a link to the version history of the Cochrane CFS exercise review
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/information#versionTable
The 2004 version by Edmunds at al was the most recent in 2011, see
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub2/full
Perfect, that date ties in with the beginning of the WHO Patient Safety work. Thank you @Peter Trewhitt
We've had a query about whether the original link to the petition still works, now that the title has been changed (with the addition of '2024'). It does still work - here's the link again:
Petition link: https://chng.it/zTZ7vX9Czd
Petition link: https://chng.it/zTZ7vX9Czd
Another petition update:
How a review published in 2019 became a review published in 2024
24 Dec 2024
2019 or 2024?
The observant among you will have noticed that we are now calling for the Cochrane 2019/2024 review (rather than the 2019 review) to be withdrawn. The reason for the change is astonishing.
Back in 2019, the Cochrane Editor-in-Chief Dr Karla Soares-Weiser published the Larun et al review, but noted that, even after a series of amendments, it was
"still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s". She noted that Cochrane had decided that "a new approach to the publication of evidence in this area is needed" and announced the new review development process on this "globally important health topic". Since then, a global pandemic has resulted in a huge increase in the number of people meeting ME/CFS diagnostic criteria, surely making it an even more important topic.
As we reported in the last update, Cochrane announced that that replacement review that has been in the works for some five years would now not go ahead. The carefully selected writing team finished a protocol nearly two years ago and delivered it to Cochrane for approval. The carefully selected Independent Advisory Group was poised to provide comments on the protocol, but was never given it. Cochrane abandoned the new review process, citing "insufficient new research in the field" and "a lack of resources to oversee the work". We'll have a closer look at those reasons in the next update.
On 19 December 2024 Cochrane added a new editorial note to the 2019 review, informing readers that
" Cochrane is ceasing the production of a full update of this Cochrane review. A pilot project for engaging interest holders in the development of this Cochrane review was initiated on 2 October 2019 (see Editorial Note below) and has now been disbanded. Cochrane maintains its decision to publish this Cochrane review in 2019."
To be clear, the 2019 review has not been changed, it has not been updated.
The only things that have changed about the 2019 review are the addition of that editorial note about the abandonment of the new review process...
... and the citation for the 2019 review.
"Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews 2024"
Yes, it is now a review with a 2024 publication date. It is not yet clear if the 2024 citation date is just an error, or if it was done deliberately. If an error, we expect that the incorrect date will be swiftly corrected.
The effect of a 2024 publication date is to make the review seem much more relevant than it otherwise would. The unchanged 2019 review now appears from the citation to be a fresh new up-to-date review, and indeed it has been shared on social media, probably mistakenly, as a new review. Uninformed readers will assume that it represents a distillation of the latest knowledge using the best methods, and that criticisms of the 2019 version have been fully addressed. The review, with its 2024 date, appears newer than the 2021 NICE Guidelines and Evidence Review which unequivocally warned that people with ME/CFS should not be treated Graded Exercise Therapy.
A 2024 publication date is particularly misleading as the 2019 version of the review was actually the result of a series of amendments over several years. The literature search was undertaken in 2014 and so the review contains no source material more recent than the 2011 PACE study report.
Surely this situation where an unchanged review is relabelled with a publication date 5 years after the actual publication date is preposterous and will not be allowed to stand?
Our best wishes to the supporters of this campaign
As a new year approaches, we thank you for your support and hope that 2025 brings better health, much happiness and exciting new developments in the understanding of ME/CFS.
How a review published in 2019 became a review published in 2024
24 Dec 2024
2019 or 2024?
The observant among you will have noticed that we are now calling for the Cochrane 2019/2024 review (rather than the 2019 review) to be withdrawn. The reason for the change is astonishing.
Back in 2019, the Cochrane Editor-in-Chief Dr Karla Soares-Weiser published the Larun et al review, but noted that, even after a series of amendments, it was
"still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s". She noted that Cochrane had decided that "a new approach to the publication of evidence in this area is needed" and announced the new review development process on this "globally important health topic". Since then, a global pandemic has resulted in a huge increase in the number of people meeting ME/CFS diagnostic criteria, surely making it an even more important topic.
As we reported in the last update, Cochrane announced that that replacement review that has been in the works for some five years would now not go ahead. The carefully selected writing team finished a protocol nearly two years ago and delivered it to Cochrane for approval. The carefully selected Independent Advisory Group was poised to provide comments on the protocol, but was never given it. Cochrane abandoned the new review process, citing "insufficient new research in the field" and "a lack of resources to oversee the work". We'll have a closer look at those reasons in the next update.
On 19 December 2024 Cochrane added a new editorial note to the 2019 review, informing readers that
" Cochrane is ceasing the production of a full update of this Cochrane review. A pilot project for engaging interest holders in the development of this Cochrane review was initiated on 2 October 2019 (see Editorial Note below) and has now been disbanded. Cochrane maintains its decision to publish this Cochrane review in 2019."
To be clear, the 2019 review has not been changed, it has not been updated.
The only things that have changed about the 2019 review are the addition of that editorial note about the abandonment of the new review process...
... and the citation for the 2019 review.
"Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews 2024"
Yes, it is now a review with a 2024 publication date. It is not yet clear if the 2024 citation date is just an error, or if it was done deliberately. If an error, we expect that the incorrect date will be swiftly corrected.
The effect of a 2024 publication date is to make the review seem much more relevant than it otherwise would. The unchanged 2019 review now appears from the citation to be a fresh new up-to-date review, and indeed it has been shared on social media, probably mistakenly, as a new review. Uninformed readers will assume that it represents a distillation of the latest knowledge using the best methods, and that criticisms of the 2019 version have been fully addressed. The review, with its 2024 date, appears newer than the 2021 NICE Guidelines and Evidence Review which unequivocally warned that people with ME/CFS should not be treated Graded Exercise Therapy.
A 2024 publication date is particularly misleading as the 2019 version of the review was actually the result of a series of amendments over several years. The literature search was undertaken in 2014 and so the review contains no source material more recent than the 2011 PACE study report.
Surely this situation where an unchanged review is relabelled with a publication date 5 years after the actual publication date is preposterous and will not be allowed to stand?
Our best wishes to the supporters of this campaign
As a new year approaches, we thank you for your support and hope that 2025 brings better health, much happiness and exciting new developments in the understanding of ME/CFS.
yeah, this seems like what's happening.
ME/CFS Skeptic
Senior Member (Voting Rights)
One caveat is that PACE is not really the trial that is driving the effect in the meta-analysis (it often found lower effects than the meta-analysis estimates). It's mainly the 2001 Powell et al. study that inflated the effects.
I guess more accurate to say that it was designed to save the PACE paradigm. And if I remember, Powell wasn't even a GET study, though it called itself that. It was a pacing study designed to see if people could increase without breaching their PEM threshold.
ME/CFS Skeptic
Senior Member (Voting Rights)
No, I think that was Wallman 2004. The Powell 2001 trial used the same intervention as FITNET.
Yann04
Senior Member (Voting Rights)
Andy
Retired committee member
Sly Saint
Senior Member (Voting Rights)
So will Cochrane now include this means of turning an out of date review into a new one in their new training manual ?
adendum " or you could skip all this, just add a comment and reset the publication year, and voila you have a 'new' updated review ".
Chapter IV: Updating a review | Cochrane Training
bicentennial
Senior Member (Voting Rights)
very key point indeed, and by Cochrane's own admission
So the 2019 review was out of date thereby providing misleading information to decision makers being asked by this deception to obtain money by deception (unless and until withdrawn)
This was not my opinion it was Cochrane's opinon so please don't accuse Cochrane's lawyer of "harassment by false (implied) allegation"
So far this remains so because Cochrane's periodic* re-assessment(s) completed, completely determined that an update was in fact needed, to which everyone had agreed because the obsoleted update of 2019 had become that misleading, in the interim
For this update, the scope, eligibility criteria and methods used in the 2019 review were revised according to any review standard, the change was managed appropriately, and clearly reported to readers, as required (by Cochrane)
There can be no doubt and so for the avoidance of doubt I may say that the 2019 update became misleading, since the circumstances have changed, so it got withdrawn, all thanks to and courtesy of Cochrane, my hero
Citing The Book.
Cochrane wrote The Book.
Available from www.training.cochrane.org/handbook.
Please don't omit to buy The Book and study it well so that you know how to standardise your own reviews of your own systematic rehab interventions
Cochrane has rehabitlitated itself. Joyous day
* since 2019 all subsequent study was counted and very recently filed study was recounted to make up sufficient numbers for the 2024 update (of the 2019 review)
edited to move the punctuation mark from star to star in < harassment * by false (implied) allegation * >
So the 2019 review was out of date thereby providing misleading information to decision makers being asked by this deception to obtain money by deception (unless and until withdrawn)
This was not my opinion it was Cochrane's opinon so please don't accuse Cochrane's lawyer of "harassment by false (implied) allegation"
So far this remains so because Cochrane's periodic* re-assessment(s) completed, completely determined that an update was in fact needed, to which everyone had agreed because the obsoleted update of 2019 had become that misleading, in the interim
For this update, the scope, eligibility criteria and methods used in the 2019 review were revised according to any review standard, the change was managed appropriately, and clearly reported to readers, as required (by Cochrane)
There can be no doubt and so for the avoidance of doubt I may say that the 2019 update became misleading, since the circumstances have changed, so it got withdrawn, all thanks to and courtesy of Cochrane, my hero
Citing The Book.
Cochrane wrote The Book.
Available from www.training.cochrane.org/handbook.
Please don't omit to buy The Book and study it well so that you know how to standardise your own reviews of your own systematic rehab interventions
Cochrane has rehabitlitated itself. Joyous day
* since 2019 all subsequent study was counted and very recently filed study was recounted to make up sufficient numbers for the 2024 update (of the 2019 review)
edited to move the punctuation mark from star to star in < harassment * by false (implied) allegation * >
Very close to 14,000 signatures
24 to go
24 to go
bicentennial
Senior Member (Voting Rights)
All of that still being salvageable, while yet another "scrap-it and upgrade" became ruinous and also pandemically unaffordable, plus all those model examples (of how not to) admittedly withdrawn 5 years later:
- Cochrane can finally join N.I.C.E and the W.H.O, get called a bullied bully, enjoin the human race, and lead the way again, world class (based in the UK. USA, still in 2 minds, to follow)
Can someone please clue me up on (with evidential links if possible) exactly who the target audience for a Cochrane Review is designed to be? Obviously researchers but who on the medical frontline treating patients would actually check up on them, or is it just policy makers and management boards? It's for my draft personal complaint of extreme harm.
Peter T
Senior Member (Voting Rights)
I thought the following recent comment on the petition was worth copying here:
In 2019 Cochrane in effect acknowledged the chasm between the group of researchers advocating exercise as a curative treatment for ME and the majority of people with ME and their advocates and promised us a means of input into the new exercise review. Five years on Cochrane, despite some 80 ME and Long Covid patient organisations and very nearly 14,000 individual petition signatures, have chosen to backtrack on that commitment and stand firmly in support of an approach to treatment that they know causes harm.
This commenter has identified the core issue that the BPS approach to ME is based on a fundamental denial of the patient experience, a profound contempt for the very people they are meant to be helping, that Cochrane are actively lending their prestige and influence to promote this harmful treatment knowing it will be used in national and local guidelines and service planning as we are seeing in the current new guideline process happening in Australia.
In 2019 Cochrane in effect acknowledged the chasm between the group of researchers advocating exercise as a curative treatment for ME and the majority of people with ME and their advocates and promised us a means of input into the new exercise review. Five years on Cochrane, despite some 80 ME and Long Covid patient organisations and very nearly 14,000 individual petition signatures, have chosen to backtrack on that commitment and stand firmly in support of an approach to treatment that they know causes harm.
This commenter has identified the core issue that the BPS approach to ME is based on a fundamental denial of the patient experience, a profound contempt for the very people they are meant to be helping, that Cochrane are actively lending their prestige and influence to promote this harmful treatment knowing it will be used in national and local guidelines and service planning as we are seeing in the current new guideline process happening in Australia.
Most nations have enshrined the principles of the 1948 Declaration of human rights, freedoms and responsibilities into their local laws. Is there a link to the Australian and New Zealand versions?
ETA: Montgomery v. Lanarkshire Healthboard [2015] Supreme Court case is a common law case. It can be cited in other common law jurisdictions which include Australia and Canada. The issue of consent to treatment, they have to disclose the deaths from the illness. Jodie Baxter (hummingbird).
Montgomery (Appellant) v Lanarkshire Health Board (Respondent) (Scotland) - UK Supreme Court
ETA: easy read version Montgomery v Lanarkshire Health Board - Wikipedia
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Jonathan Edwards
Senior Member (Voting Rights)
I don't know if Cochrane ever said explicitly who the target audience was. I don't think it is researchers though. The reviews were seen as providing systematic analysis of the benefits and disadvantages of treatment modalities in a form that would be useful in the building of a consensus for medical training and continuing education of the medical community.
When Cochrane reviews started coming out they were welcomed as unbiased and systematic summaries for management in areas where one had not oneself carefully scrutinised the evidence. This might seem peculiar but medics have always worked on the basis that they have certain areas of special interest where they make it their responsibility to be completely up to date and to form their own judgment on treatments but also want to be broadly familiar with the treatment options in areas that their work might overlap with. So, for instance, if I had a rheumatology patient with bone pain and found a high calcium level, I would be thinking of the possibility of myeloma, and would want to be aware of the current state of options for treatment in myeloma in general terms because I might want to refer to a haematologist for diagnosis and treatment.
In this way Cochrane reviews were seen as serving a function a bit like the BMJ, or Journal of the American Medical Association, which kept doctors abreast of management options on a broad front, not so much to provide specific new findings as to update the wider knowledge base needed to judge how to handle problems outside one's immediate focus.
For general practitioners Cochrane reviews might have been particularly important because GPs rarely had the opportunity to scrutinise recent evidence on a topic in detail in the way specialist physicians would do at society meeting and in journal clubs.