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

[Trish]

It shouldn't take 3 years. They are mostly reviewing a single treatment, as far as I know. Compare that with the NICE evidence review that had to review evidence on all treatments and management for a condition and produce a guideline including taking feedback. I think that whole process only took about 3 years. Postgrad students do systematic reviews as a preliminary to research projects. They are not very complex.

 

[Trish]

Larun et al only included 8 trials, most very small. The whole review process is a major performance trying to squeeze some semblance of evidence of efficacy out of flawed trials.

A quick read through the 8 trials would have told anyone unbiased and sensible that there was no evidence of clinically useful treatment in any of them. No need for complicated analyses, grading etc. It was barn door obvious that there was no objective or long term subjective advantage from GET.

Cochrane have turned what should be basic common sense into a ridiculous circus that can't see the wood for the trees.

 

[Utsikt]

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.

They self-reported an average of three years in early 2022. I don’t know what timeframe they measured over.

It shouldn't take 3 years. They are mostly reviewing a single treatment, as far as I know.

Cochrane have turned what should be basic common sense into a ridiculous circus that can't see the wood for the trees.

It’s a farce.

One thing I still don’t understand, is how the new review took so long time in the first place. The whole conflict fatigue argument seems to relate to relatively recent happenings. It would be very interesting to know the timeline.

It also seems weird if any reviews of the previous review process, or any other happenings for that matter, were tied to the process of completing the new review. I could understand wanting to fix issues before doing it again, but what does that tell you about their confidence in their own processes?

Even if you don’t consider the fact that they let vested interests taint their decision making, there’s no way for Cochrane to leave this with a favourable impression.

 

[rvallee]

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 think there was a much stronger quote from Tovey on this. S-W's mostly says the same thing but it wasn't as categorical.

 

[Robert 1973]

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

Perhaps something like:

To ask the Secretary of State for Health and Social if he will review the government’s relationship with Cochrane through its departments and agencies following the charity’s decision to renege on its commitment to update its review of exercise therapy for chronic fatigue syndrome [1], given that: (a) at the time the review was published Cochrane was funded by the NIHR and it continues to receive funding through NICE; (b) Cochrane’s 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’ [2]; (c) the review directly contradicts the NICE Guideline for ME/CFS [3]; (d) over 15,000 individuals and 79 ME/CFS and Long Covid organisations have signed a petition calling for the review to be withdrawn [4,5]; (e) the decision to abandon the update has been criticised by the Independent Advisory Group for stakeholder engagement for the review [6]; (f) Cochrane also misled the public about the efficacy of masks in preventing the spread of Covid-19 [7,8]
​

It's not perfect but it would at least be a request for action, as required by the WPQ rules above. If anyone has any suggestions, please let me know. Otherwise I will write to my MP over the weekend with my suggestions and see what she thinks.

 

[Peter T]

Perhaps something like:

To ask the Secretary of State for Health and Social if he will review the government’s relationship with Cochrane through its departments and agencies following the charity’s decision to renege on its commitment to update its review of exercise therapy for chronic fatigue syndrome [1], given that: (a) at the time the review was published Cochrane was funded by the NIHR and it continues to receive funding through NICE; (b) Cochrane’s 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’ [2]; (c) the review directly contradicts the NICE Guideline for ME/CFS [3]; (d) over 15,000 individuals and 79 ME/CFS and Long Covid organisations have signed a petition calling for the review to be withdrawn [4,5]; (e) the decision to abandon the update has been criticised by the Independent Advisory Group for stakeholder engagement for the review [6]; (f) Cochrane also misled the public about the efficacy of masks in preventing the spread of Covid-19 [7,8]
​

It's not perfect but it would at least be a request for action, as required by the WPQ rules above. If anyone has any suggestions, please let me know. Otherwise I will write to my MP over the weekend with my suggestions and see what she thinks.

Excellent, but would it be worth also pointing out that the Government also pays Cochrane to make the library available free of charge in this country, so in the case of the CFS Exercise review the government are paying for people to access something that argues for a treatment that NICE rejects as harmful for people with ME/CFS.

 

[Robert 1973]

Excellent, but would it be worth also pointing out that the Government also pays Cochrane to make the library available free of charge in this country, so in the case of the CFS Exercise review the government are paying for people to access something that argues for a treatment that NICE rejects as harmful for people with ME/CFS.

According to Hilda NICE pays for it in England and the Health Departments pay for it in other parts of the UK (ie Wales, Scotland and NI):

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”

I’m concerned that the question may already be too long, so let me know if you can suggest wording which might improve it without making it longer.

 

[Hutan]

I think that's terrific @Robert 1973

A few suggestions:

(b) Cochrane’s 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’ [2]

I think the 'would not resolve all the ongoing questions' is the weaker part of the statement. A review might not resolve all the ongoing questions and yet be true and useful for clinical decision-making.

Maybe, "Cochrane's Editor-in-Chief acknowledged in 2019 that the review used research questions and methods from 2002 and that a new approach was needed"?

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.

“We have decided, therefore, that a new approach to the publication of evidence in this area is needed; and, today we are committing to the production of a full update of this Cochrane Review

(e) the decision to abandon the update has been criticised by the Independent Advisory Group for stakeholder engagement for the review [6]

maybe "the decision to abandon the update has been criticised by the Independent Advisory Group for the review that Cochrane itself established "?
I think it's worth noting that the IAG is not some random group but was created by Cochrane to advise it.

(f) Cochrane also misled the public about the efficacy of masks in preventing the spread of Covid-19 [7,8]

Maybe "Cochrane appears to be having problems with quality control, notably regarding reviews regarding masks as part of PPI to prevent the transmission of Covid-19 and [the issue to do with cesarean births]."

I think Cochrane might be able to argue that it didn't mislead but was misunderstood. Rubbish of course, but maybe it's more effective to suggest that there is a systemic problem. An MP might be more comfortable with that approach too.

 

[Nightsong]

maybe "the decision to abandon the update has been criticised by the Independent Advisory Group for the review that Cochrane itself established "?

Just a quick thought: there are some potentially useful quotes from HB's recent blogs that could be attributed to "a founder of Cochrane" that might be useful for this or other government/Parliamentary correspondence - e.g. in her Balancing Act blog she said that "[t]he way it has gone about this raises serious red flags about the organization’s current course" and that Cochrane has "veered away from its principles of openness, responsiveness to criticism, and accountability". There may be choicier quotes still (don't have the energy at the moment to read back through them all)

 

[Hutan]

On the issue about a possible controversial review on steroid injections for cesarean births - that was mentioned in a German article linked and translated upthread. I haven't found much about the issue online. Obviously we'd need to be sure about it.

 

[Nightsong]

I tried to find a source earlier on the steroids-in-caesarean-births claim. It seems there was a debate over the use of antenatal corticosteroids, particularly the applicability of the research to low-resource / developing countries. There are a number of papers discussing this; I haven't got the energy to go through them all, but some quotes from one, "Antenatal corticosteroids for women at risk of imminent preterm birth in low-resource countries: the case for equipoise and the need for efficacy trials". (Not entirely sure that this is what is being referred to in the German article, but seems like a good candidate.)

Antenatal corticosteroids (ACS) have long been regarded as a cornerstone intervention in mitigating the adverse effects of preterm birth. The Cochrane Collaboration logo is itself constructed from an early ACS meta-analysis.22 The first randomised controlled trial of ACS (betamethasone) in humans to prevent respiratory distress syndrome was published in 1972.23 Since then, dozens more trials have been conducted, exploring neonatal risks and benefits when given to women at risk of preterm birth,24 the use of different dosing regimens25 and the use of ACS for preventing neonatal respiratory morbidity after elective caesarean section at term.26

In March 2017, the updated Cochrane systematic review on ACS for accelerating fetal lung maturation for women at risk of preterm birth was published, including 30 trials of 7774 women and 8158 infants.The findings are similar to earlier iterations, showing striking reductions in neonatal mortality and several morbidity outcomes (box 1). This analysis has contributed to the widespread (and often overly liberal) use of ACS for women at risk of preterm birth, including in low-income and middle-income countries (LMICs).

However, there are several critical limitations in the Cochrane review evidence base that complicate their application to many hospitals in LMICs, as discussed below.

 

[Sean]

Cochrane have turned what should be basic common sense into a ridiculous circus that can't see the wood for the trees.

And all too often don't want to.

 

[Hutan]

I tried to find a source earlier on the steroids-in-caesarean-births claim. It seems there was a debate over the use of antenatal corticosteroids, particularly the applicability of the research to low-resource / developing countries. There are a number of papers discussing this; I haven't got the energy to go through them all, but some quotes from one, "Antenatal corticosteroids for women at risk of imminent preterm birth in low-resource countries: the case for equipoise and the need for efficacy trials". (Not entirely sure that this is what is being referred to in the German article, but seems like a good candidate.)

That's an interesting read @Nightsong.

The Cochrane review was published in March 2017 and this rebuttal of it was received in May 2017 and published in June 2017. I haven't finished reading it, but it seems as though the Cochrane review was poorly done. I'm surprised that the rebuttal didn't seem to produce much media coverage. The review may well have produced a range of negative outcomes.

I don't think there is a paper that is specifically a rebuttal of the Larun et al review yet? It's certainly something that we could do. It might get some attention in places where we aren't making much headway.

 

[Jonathan Edwards]

I think there was a much stronger quote from Tovey on this.

Yes,my memory is that Tovey was much more straightforward. I still think @dave30th might have something on this. He talked to Tovey.

 

[tornandfrayed]

Really good, @Robert 1973 and Hutan's suggestions.

Is it worth mentioning the international reach of the petition?

 

[Caroline Struthers]

Yes,my memory is that Tovey was much more straightforward. I still think @dave30th might have something on this. He talked to Tovey.

I don't know if you can quote correspondence obtained via FOI, but there are lots of quotes from Tovey, including...

"I am afraid that I am not able to publish this version...either one should downgrade the certainty of evidence further, or it should be acknowledged that the magnitude of the effect is likely small" 27 May 2019
[my bold. in the end, they did neither of those things and the review still says there is moderate certainty evidence of a positive effect]

"I believe that we have reached the end of the road. I do not anticipate that you are willing to go further than you have now, and it is my judgement that my successors are unlikely to be willing to
publish a future version of this review" 24 May 2019

"Cochrane and the review author team have been unable to agree on revisions to the review, and therefore, with regret, it will now be withdrawn from the Cochrane Database of Systematic Reviews.
The Cochrane authors are not in agreement with this decision" Suggested press announcement, 27 May 2019

"the conclusion that this is moderate certainty evidence seems indefensible to me, and as we know, I am not alone in this" 27 May 2019

https://acrobat.adobe.com/id/urn:aaid:sc:EU:d4b5c8dd-59e8-4f51-8cfd-998fbb3a275e

 

[Utsikt]

(f) Cochrane also misled the public about the efficacy of masks in preventing the spread of Covid-19 [7,8]

This is not on topic for the question, and it might be used as an opportunity to derail the response.

Maybe "Cochrane appears to be having problems with quality control, notably regarding reviews regarding masks as part of PPI to prevent the transmission of Covid-19 and [the issue to do with cesarean births]."

I think Cochrane might be able to argue that it didn't mislead but was misunderstood. Rubbish of course, but maybe it's more effective to suggest that there is a systemic problem. An MP might be more comfortable with that approach too.

I’m not certain it’s an issue of quality control per se. Based on the quotes by @Caroline Struthers , it seems like an issue of governance, integrity and conflict shyness.

The Cochrane authors are not in agreement with this decision"

I don’t understand why this would even be relevant to mention publically. The opinions of the authors should be completely irrelevant to any decision regarding the publication or withdrawal of the reviews. The only reason would be to publically distance themselves from the authors, but then again, it was Cochrane that published the review in the first place. I’m confused..

I don't know if you can quote correspondence obtained via FOI,

Why not? The fact that the correspondence was covered by FOI means that it always has been public information even before the FOI request. It just wasn’t broadcasted.

You can’t have any expectation of privacy if you communicate with someone that’s covered by FOI laws, and the same goes if you’re covered yourself due to your position. Everything said is instantly considered public.

 

[Nightsong]

I don't think there is a paper that is specifically a rebuttal of the Larun et al review yet? It's certainly something that we could do. It might get some attention in places where we aren't making much headway.

There was the Vink reanalysis paper:

"Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review" (2018)

and an evaluation of the 2019 update to Larun:

"Graded exercise therapy does not restore the ability to work in ME/CFS – Rethinking of a Cochrane review" (2020)

 

[Caroline Struthers]

to publically distance themselves from the authors, but then again, it was Cochrane that published the review in the first place. I’m confused..

I think Cochrane, under Tovey, and then even more so under Soares-Weiser, is a review author (emotional/career/marketing) support service. They seem to be mostly concerned with looking after their authors and making sure they're happy, have a great experience etc because they operate a volunteer model and they want authors to do as much as possible for free, and then charge the world for their work. I think attention to detail in picking up when authors have something to sell (even if it's not a drug) and want to produce a review to sell that thing is not high on Cochrane's agenda

Her vision “to improve health care decision making by consistently publishing timely, high priority, high-quality reviews responding to the needs of our end-users. I am committed to working with the Cochrane community to achieve this vision, strengthening diversity, and striving for an excellent author experience.” https://www.cochrane.org/news/introducing-karla-soares-weiser-editor-chief-cochrane-library

 

[Utsikt]

I think Cochrane, under Tovey, and then even more so under Soares-Weiser, is a review author (emotional/career/marketing) support service.

That’s very far from how they describe themselves!

Has the public caught on to this yet?

Cochrane exists to provide reliable evidence that people can use to make more informed health decisions. We produce evidence in the form of systematic reviews by carefully examining all of the scientific research to answer a particular question – for example, ‘does treatment X help people with disease Y?’ – and working out what the overall effect is. We use sophisticated methods to combine and compare several studies, sometimes hundreds, making our reviews more reliable than individual studies.