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

Question:

Can anyone easily point me towards a link to the relevant review which was current in 2011?

 

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

 

yeah, this seems like what's happening.

 

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.

 

No, I think that was Wallman 2004. The Powell 2001 trial used the same intervention as FITNET.

 

Link to update

13,950 signatures at time of posting.

 

So will Cochrane now include this means of turning an out of date review into a new one in their new training manual ?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

 

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So the 2019 review was out of date thereby providing misleading information to decision makers being asked by this deception to obtain money by deception (unless and until withdrawn)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 * >

 

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)

 

Could we make a pun of the new year coming as a social media campaign vs just adding a new year to the same old tired should’ve been withdrawn review?

 

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.

 

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.

 

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

 

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.