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

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Perhaps: “the editor-in-chief acknowledged that the review was out of date and would ‘not resolve all the ongoing questions about this globally important health topic’”?

 

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.

 

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”

 

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.

 

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 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..

 

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.

 

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.

 

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."

 

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.

 

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.

 

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.

 

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.]