2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

[Robert 1973]

The original statement by Karla Soares Weiser is suitably quotable. I'll look up the link.

Thanks. It’s ref 2 in my post (https://www.cochrane.org/news/cfs)

Perhaps: “the editor-in-chief acknowledged that the review was out of date and would ‘not resolve all the ongoing questions about this globally important health topic’”?

 

[Trish]

https://www.cochrane.org/news/cfs

Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser, commented on the publication of the review, “Cochrane recognizes the importance of providing the best available evidence on interventions for ME/CFS to enable patients and clinicians across the world to make well-informed decisions about treatment. This amended review is 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. Having heard different views expressed about the evidence base for this condition, we acknowledge that the publication of this amended review will not resolve all the ongoing questions about this globally important health topic.

 

[Nightsong]

There is also the point that the British government is still apparently funding Cochrane, in the form of what is essentially a country-wide site licence for the Cochrane Library. From Wikipedia:

In many countries, including parts of Canada, the United Kingdom, Ireland, the Scandinavian countries, New Zealand, Australia, India, South Africa, and Poland, it has been made available free to all residents by "national provision" (typically a government or Department of Health pays for the license).

HB mentioned this in her recent Bluesky thread ("some countries pay to have the paywall down in their region"). It might be worth trying to find out which department funds this - perhaps DHSC? - what they spend on it, and if the Government funds Cochrane in any other ways.

 

[Robert 1973]

There is also the point that the British government is still apparently funding Cochrane, in the form of what is essentially a country-wide site licence for the Cochrane Library. From Wikipedia:

HB mentioned this in her recent Bluesky thread ("some countries pay to have the paywall down in their region"). It might be worth trying to find out which department funds this - perhaps DHSC? - what they spend on it, and if the Government funds Cochrane in any other ways.

I could ask her to submit that as a separate question.

 

[Robert 1973]

To ask the Secretary of State for Health and Social Care if he is concerned about Cochrane’s decision to abandoned its plan to update its review of exercise therapy for chronic fatigue syndrome

Re-reading the Cochrane statement (https://www.cochrane.org/news/cfs) I’m minded to change the wording to “Cochrane’s decision to renege on its commitment”

 

[Utsikt]

There is also the point that the British government is still apparently funding Cochrane, in the form of what is essentially a country-wide site licence for the Cochrane Library.

The use of the word ‘funding’ is a bit misleading here. The British government currently purchases a product from Cochrane.

I believe it’s probable that Cochrane moved away from donations from governmental sources in order to avoid the governmental oversight and regulations that accompanies public funding.

I can’t imagine that the contract includes any stipulations about how they have to handle the review processes. The only possible leverage the British government could have would be to threaten to stop the purchase alltogehter until they fix this mess. But I doubt that would happen.

That being said, raising awareness about the issue can’t hurt.

 

[rvallee]

Cochrane denies this as far as I can tell. So maybe a direct quote they can’t deny? Or is it better for the sake of brevity.

Which is really damning in itself, since it doesn't meet their rules. Which says they don't even mind that reviews they publish don't meet the rules they pretend to follow.

Because the quote can always be attributed to 'a past editor, now retired from Cochrane'. But it never met their rules. They never deserved to be trusted for anything, they have no honor.

 

[Trish]

I believe it’s probable that Cochrane moved away from donations from governmental sources in order to avoid the governmental oversight and regulations that accompanies public funding.

I thought it was the NIHR decision to stop funding Cochrane. It led to the major reorganisation of Cochrane that was part of the excuse for delays to the now cancelled new review process.

 

[Trish]

https://community.cochrane.org/orga...llenges,National Institute of Health Research.

 

[Utsikt]

@Trish you’re right, I was not aware of that.

On another note, the document you linked is one of the most confusing strategy documents I’ve ever read. If this is the ‘less complex’ version of Cochrane, I’m terrified of what the previous version looked like.

It’s also ironic how they talk about ‘editorial independence’ as a means to ensure integrity and quality..

 

[Nightsong]

The use of the word ‘funding’ is a bit misleading here. The British government currently purchases a product from Cochrane.

Never heard of a government purchasing a country-wide licence to academic journals or databases before, except for those that do so from Cochrane (has anyone?). The US Government funds MEDLINE/PubMed, but that was created & is maintained by their National Library of Medicine. Most universities, and presumably the NHS, will already pay Wiley (Cochrane's publisher) for access to at least some of their journals & ebooks; why should the Cochrane Library be an exception?

Cochrane has a list of funders and partners, but it dates from 2019. Maybe their Charity Commission reports will have more detail; failing that, perhaps a few FOIs to NIHR, DHSC etc might be in order.

 

[Hutan]

Great initiative @Robert 1973. There is a typo in the first line - abandoned (not sure if that wording is still in your question).

Because the quote can always be attributed to 'a past editor, now retired from Cochrane'. But it never met their rules. They never deserved to be trusted for anything, they have no honor.

The quote came from the current editor, Dr Karla Soares-Weiser, who presumably is completely on-board with the decision to now abandon the new review process.

I thought it was the NIHR decision to stop funding Cochrane. It led to the major reorganisation of Cochrane that was part of the excuse for delays to the now cancelled new review process.

Yes. Although it is interesting to think about why Cochrane decided to abandon their open access strategy (with fundraising to cover expenses). It's not making much sense to me right now. Surely it would be easy for Cochrane to get enough donations to cover the costs of the central organisation rather than sell licences?

 

[Utsikt]

Surely it would be easy for Cochrane to get enough donations to cover the costs of the central organisation rather than sell licences?

From Trish’s link above:
«Cochrane's reputation alone is no longer sufficient in the context of funding constraints and competition. National funders want assurance they will receive the evidence syntheses for which they pay, on the topics they consider important, and within an acceptable timeline. It is no longer realistic to expect core funding without that level of accountability. Furthermore, to secure new funding we will need to be able to meet similar funder requirements on quality, relevance and timeliness. The new model sets out a way to transform the way we produce evidence synthesis to maintain the quality and number of Cochrane evidence syntheses our users need.»

From a national budget perspective, donations are probably more vulnerable to cuts compared to purchases, and therefore a less reliable source of income.

There’s also the question of why someone would pay for something that’s free. The current model uses price discrimination to get around this, only the rich pay. But would you get them to donate? I know the cost might be the same, but the framing matters.

 

[Hutan]

But, it sounded as though the funding required for the central organisation was only 11 million something (US dollars?). Which is nothing, in terms of a global organisation with Cochrane's previous 'gold-standard' reputation raising that money from wealthy philanthropists. But, perhaps they had tested the waters and the philanthropists they approached weren't so keen after the mask debacle. Perhaps other issues, possibly including the issues with ME/CFS, were also a problem. Perhaps fundraising for the central organisation was thought to influence the operation and fundraising for regional offices?

Maybe they realised that philanthropic donors would poke into the operation of the organisation? Maybe there are things they have to sweep under the carpet before the donors are invited. But still, I would have thought there would be some foundation, with funding channeled from BPS interests, that could have come up with 11 million without blinking an eyelid.

I don't know.

From a national budget perspective, donations are probably more vulnerable to cuts compared to purchases, and therefore a less reliable source of income.

Yes, maybe this.

 

[dave30th]

@dave30th might have one.

She said it was based on out-dated questions and an outdated understanding of the disease. She also said it clearly wouldn't resolve all the questions. That seems to be a pretty clear statement that it is not "fit for purpose." If it were fit for purpose, why commission another one? Having said that, I think Karla's words make the same point without using the phrase "not fit for purporse."

 

[Utsikt]

Maybe they realised that philanthropic donors would poke into the operation of the organisation? Maybe there are things they have to sweep under the carpet before the donors are invited.

Several pages on their website have alluded to struggles with maintaining their reputation among stakeholders due to a host of ongoing issues like editorial independence, quality, speed, and outdated and complex organisational structures. They certainly put effort into making it seem like they were addressing all of these issues.

The public have not caught on yet, but some of the stakeholders might. Based on information that I’ve read here, I would not be surprised if it’s an open secret that Cochrane is vulnerable to external and internal influences.

They also have a history with a failed efficiency project that cost £800.000 py. Given the rapid pace of science (or at least publications), three years lead time for a review is untennable.

Over the years many attempts have been made to address these issues, improve quality and processes, and reduce the burden on Review Groups (see Figure 2). Most were only partially successful, and some have added complexity to the current model; the creation of Networks is an example of this. The Network model was intended to improve the quality and relevance of reviews through standardizing editorial processes and prioritization, providing quality assurance, sharing good practice, and promoting greater collaboration between Review Groups. At a cost of approximately £0.8m per year (to run the Networks) these objectives were only partially achieved.

There was some improvement in the quality of high priority reviews but overall they proved a weak mechanism for improving relevance and quality generally, and usability of all reviews, because lack of accountability of Review Groups to Cochrane remained. There is no evidence that Networks helped to address efficiency of process or contributed to reducing the length of development for reviews, indeed, the median time from published protocol to complete review has been approximately three years since 2018.

 

[Trish]

It seems like time Cochrane was closed down. They are in any case duplicating the evidence reviews done for national guidelines, and not doing them well because they rely too much on people who have vested interests rather than real understanding.

 

[Robert 1973]

I could ask her to submit that as a separate question.

I asked Hilda on bluesky: https://bsky.app/profile/hildabast.bsky.social/post/3likkk7n3vs22

Hilda: “In England, NICE pays for the national licence for the Cochrane Library, health departments for other parts of UK https://www.cochranelibrary.com/help/access#Funding_sources The UK Foreign Office funds Cochrane Infectious Diseases Group. Unsure of any other structural funding. Some individual review funding from NIHR.”​

“Also relevant to the NICE situation: https://subscriptionsmanager.jisc.ac.uk/catalogue/2911”

​

Meanwhile, I’ve been reading the rules on WPQs (https://www.parliament.uk/globalassets/documents/commons-information-office/Brief-Guides/Parliamentary-Questions.pdf), which state:

“A parliamentary question must:

- either (a) seek information (‘what, how many, when…’) or (b) press for action (‘if he will…’);

- not offer or seek expressions of opinion;”
​

With these rules in mind and Hilda’s response on funding I may need to consider re-wording the question. Suggestions welcome.

I could also ask my MP to write to NICE.

 

[Utsikt]

and not doing them well because they rely too much on people who have vested interests rather than real understanding.

They wrote something about recruitment issues, and I can’t help but think that Cochrane is in a particulary vulnerable situations. Their reputation as the gold standard means that they might attract people that wants to shape the opinions in a field. Those people might not be the most suited to produce impartial reviews. Or they attract people that wants to be important, but can’t achieve that through other means.

Even without the internal vested interests, I can imagine a situations where Cochrane is taken advantage of. Because what do you do when you’ve spent theee years on a review that stakeholders are waiting on, and it turns out to be subpar? If you publish it, you errode the foundation of the organization. But if you don’t, you’re a review producer without any reviews.

 

[Peter T]

Given the rapid pace of science (or at least publications), three years lead time for a review is untennable.

Somewhere on one of these threads I posted a study that looked at the time taken to do a Cochrane review and I am sure the time taken was on average longer than three years.

[added - not finding this study again and find stuff suggesting a shorter time. However I do think the study I remember was talking about a mean of four years or longer, though my memory is not reliable. It may have been the previous time we were looking at Cochrane’s funding sources that I posted on this.]