Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

[Sean]

I think they are throwing whatever they can get their hands on against every wall in the house in defence of the whole psycho-behavioural project in the hope that something sticks.

Which it appears to have at Cochrane.

 

[Jonathan Edwards]

Yes, I think Glasziou is central to this. There was a version of the review that included PACE names as authors, as well as Glasziou as author. The peer review for that version was so damning it never saw the light of day. I think that made the review a cause celébre for certain Cochrane worthies, who also came to the rescue of poor Mrs Floptop in Norway, whose unit was disintegrating anyway.

 

[Sean]

The peer review for that version was so damning it never saw the light of day.

Is that review confidential? Might contain some useful stuff for us.

 

[Jonathan Edwards]

Is that review confidential?

Yes, they are.

 

[Midnattsol]

I’ve been thinking about Cochrane’s motivations in cancelling the update.

Of course in a way it doesn’t matter. This is S4ME, and our focus is on science, not institutional politics. But in this case politics has successfully obstructed science, so we need to understand how that happened.

Some have suggested that Cochrane axed the update because it would have exposed methodological flaws that affect most of Cochrane’s reviews of pschobehavioural interventions.

I wonder though if that is giving Cochrane too much credit.

I doubt they got that far in their analysis. And if they did, they would also have realised that - just like NICE - they could junk PACE for using Oxford criteria without needing to get into the issues with subjective measures for unblinded interventions.

It seems to me that this was about this review specifically.

I suspect Cochrane leadership were persuaded that to redo Larun would destroy their credibility by giving in to a vested interest, i.e. patients. Since Cohrane’s business is appearing to be immune to vested interests, that argument must have persuaded leadership that blocking this review was an existential issue worth almost any amount of pushback.

This was a neat rhetorical trick in which the true vested interest (BPS advocates) were able to paint themselves as neutral proponents of EBM, while the patients (who as Jo Edwards points out have a strong interest in treatment efficacy) were successfully painted as biased.

This pseudoargument could have ensured no one senior in Cochrane considered the merits of the patients’ critique in detail.

I also wonder if one of the purposes of White et al’s Anomalies paper was to achieve exactly this result. They were not able to get NICE to back down, but they were able to set up a bogus narrative that “NICE was nobbled” to discourage Cochrane and others from listening to patients’ arguments.

Once again those with interventions to peddle have successfully persuaded large parts of the medical research community that we are toxic and can’t be engaged with. Previously we were portrayed as violent and unstable. Now the argument is that we are too involved in the science and therefore are a vested interest who need to be kept at arm’s length lest our views contaminate treatment evaluation.

I think Flottorp and others at FHI at one point (I think as part of the whole issue with getting the Lightning Process trial through the ethics board) used their strong defense of the Cochrane review as a way of showing how they stand up for evidence based medicine.

 

[Trish]

Yes, I think Glasziou is central to this. There was a version of the review that included PACE names as authors, as well as Glasziou as author. The peer review for that version was so damning it never saw the light of day. I think that made the review a cause celébre for certain Cochrane worthies, who also came to the rescue of poor Mrs Floptop in Norway, whose unit was disintegrating anyway.

As I understand it, the plan was to do a separate review of exercise therapy based on individual patient data from the trials, obviously including PACE. I think what happens in cases like this when a protocol is rejected and the project cancelled, is that the authors can then publish their protocol and proceed to publishing a paper with a different publisher, but not call it a Cochrane review. I think it has been made public that they are intending to do so. I don't think we've seen it yet.

Similarly the author group just effectively sacked by Cochrane who produced the draft protocol intended to replace the Larun review may be given permission to publish their protocol with a different publisher, and write a review, but the problem I see is that the group appointed to write the protocol and new review was led by a Cochrane staffer, who would no longer be likely to want to or be allowed by Cochrane to be involved any further, so the whole thing may just be scrapped. I haven't heard anything about who will be allowed ownership.

 

[Jonathan Edwards]

I think it has been made public that they are intending to do so. I don't think we've seen it yet.

The original review was about eight years ago now. I don't see it likely to appear. I think it was just an excuse to try to guild the existing Cochrane review lily. If it is not Cochrane there seems no point because Cochrane will not be able to say that you cannot play with their football.

 

[Peter T]

I suspect Cochrane leadership were persuaded that to redo Larun would destroy their credibility by giving in to a vested interest, i.e. patients.

(Please correct me if I have got any dates or the order of events wrong.)

This was Lady Wessely’s and Sir Colin Blakemore’s public arguments that were part of the campaign to stop Cochrane retracting Larun et al 2017, which presumably fed into the decision to instead allow them to redraft, creating what became Larun et al 2019.

Even then there were arguments (within Cochrane?) that Larun’s redraft failed to address the valid criticisms (from patients) such that an independent arbitrator was called in, but even then his conclusions were disregarded when Cochrane published Larun’s redraft in 2019. So the current editor in chief published Larun’s et al’s update knowing it failed to address patient criticisms previously acknowledged as valid and ignoring at least some of the independent advice Cochrane sought out themselves.

Around this time Cochrane redrafted their policy to make it much much harder to withdraw any review. I suspect there was then also pressure for Cochrane to be seen to protect its authors who are necessary for Cochrane’s meaningful ongoing existence over and above any patient interests, though I doubt it was expressed quite so openly.

I think in 2019/2020/2021 there was still from Cochrane a genuine commitment to a new review using the IAG for genuine consultation. I think they naively believed that there could be a compromise created that would be acceptable both to the vested BPS interests and the patient community.

The usual suspects failed to block the publication of the new NICE in their current form in 2021, indeed in forums for direct debate they were left with egg on their face. As you say, @dratalanta, they gradually built a campaign to undermine these new NICE guidelines by what ever means possible, part of which required the continued existence of Larun et al to help back their claims to hold a widely accepted scientifically valid position.

However in 2022? there was a campaign from the usual suspects within (and outside Cochrane?) to undermine the IAG, delaying it from any action whilst Cochrane examined the make up of that group, accepting the weak argument that it was biased towards the patient perspective, the same argument being falsely levelled against the NICE guidelines committee. Cochrane concluded that more medical professionals currently working in ME/CFS needed to be included in the IAG, though I don’t know if the group ever had a full complement.

In early 2023 Cochrane received and then sat on the draft protocol for undertaking the new review, though this draft was not passed on to the IAG and we don’t know if it ever underwent peer review, both presumably necessary prior to it being published. However as late as 2023 Cochrane agreed to fund Hilda Bastian’s continued role suggesting they had not completely abandoned the idea of a new review.

However through 2023 complaints and pressure from us and presumably others about the ongoing delays in the new review and the demand for Larun et al 2019 to be withdrawn, culminating in our letter now signed by so 80 organisations internationally and petitions now signed by very nearly 14,000 people. These communications have been rejected, disregarded and/or ignored as far as we can tell. Although Cochrane promised some of our complaints would be addressed there is no sign of that having happened, unlike in 2017 and 2018 when the previous editor in chief took the detailed argument analysis by several individual patients seriously, leading to the current saga.

We have no idea what has been happening since late 2023 within Cochrane in relation to the new review process until their recent statement abandoning the new review process indefinitely, publicly standing by the 2019 version and indeed reissuing it with a 2024 date.

[note - sorry this took me an hour to write so I have cross posted with subsequent post.]

 

[Hutan]

A nice summary, Peter.

We have no idea what has been happening since late 2023 within Cochrane in relation to the new review process until their recent statement abandoning the new review process indefinitely, publicly standing by the 2019 version and indeed reissuing it with a 2024 date.

Other than there appears to have been a decision that staff and Cochrane officers should not (must not?) individually respond to emails and queries about the Larun et al review, that it all needed to be managed centrally. For at least a year we have been hearing that there was absolutely no chance that the Larun et al review would be withdrawn. Our complaints about the review were responded to initially with the suggestion that some of them had been recognised as worthy of further investigation, although we were not told which ones. And then we heard nothing at all.

So, presumably there was a decision made at the highest levels in the last year to double down on the protection of the review, to effectively put Cochrane fingers in Cochrane ears and chant 'lah, lah, lah' very loudly until we go away.

I hope that some people in Cochrane who have seen this all play out are concerned enough to ignore the requirement for individual silence, or at least to start asking some hard questions within the organisation.

 

[bobbler]

I think they are throwing whatever they can get their hands on against every wall in the house in defence of the whole psycho-behavioural project in the hope that something sticks.

Which it appears to have at Cochrane.

Which department is Cochrane specifically housed in at McMaster out of curiosity? Am I right in thinking they would have been in a position without / looking for key resources without that?

 

[bobbler]

As I understand it, the plan was to do a separate review of exercise therapy based on individual patient data from the trials, obviously including PACE. I think what happens in cases like this when a protocol is rejected and the project cancelled, is that the authors can then publish their protocol and proceed to publishing a paper with a different publisher, but not call it a Cochrane review. I think it has been made public that they are intending to do so. I don't think we've seen it yet.

Similarly the author group just effectively sacked by Cochrane who produced the draft protocol intended to replace the Larun review may be given permission to publish their protocol with a different publisher, and write a review, but the problem I see is that the group appointed to write the protocol and new review was led by a Cochrane staffer, who would no longer be likely to want to or be allowed by Cochrane to be involved any further, so the whole thing may just be scrapped. I haven't heard anything about who will be allowed ownership.

Thanks that’s interesting to know. I’m getting confused between the first para and term authors and second para with author group - are these the same people?

 

[bobbler]

(Please correct me if I have got any dates or the order of events wrong.)

This was Lady Wessely’s and Sir Colin Blakemore’s public arguments that were part of the campaign to stop Cochrane retracting Larun et al 2017, which presumably fed into the decision to instead allow them to redraft, creating what became Larun et al 2019.

Even then there were arguments (within Cochrane?) that Larun’s redraft failed to address the valid criticisms (from patients) such that an independent arbitrator was called in, but even then his conclusions were disregarded when Cochrane published Larun’s redraft in 2019. So the current editor in chief published Larun’s et al’s update knowing it failed to address patient criticisms previously acknowledged as valid and ignoring at least some of the independent advice Cochrane sought out themselves.

Around this time Cochrane redrafted their policy to make it much much harder to withdraw any review. I suspect there was then also pressure for Cochrane to be seen to protect its authors who are necessary for Cochrane’s meaningful ongoing existence over and above any patient interests, though I doubt it was expressed quite so openly.

I think in 2019/2020/2021 there was still from Cochrane a genuine commitment to a new review using the IAG for genuine consultation. I think they naively believed that there could be a compromise created that would be acceptable both to the vested BPS interests and the patient community.

The usual suspects failed to block the publication of the new NICE in their current form in 2021, indeed in forums for direct debate they were left with egg on their face. As you say, @dratalanta, they gradually built a campaign to undermine these new NICE guidelines by what ever means possible, part of which required the continued existence of Larun et al to help back their claims to hold a widely accepted scientifically valid position.

However in 2022? there was a campaign from the usual suspects within (and outside Cochrane?) to undermine the IAG, delaying it from any action whilst Cochrane examined the make up of that group, accepting the weak argument that it was biased towards the patient perspective, the same argument being falsely levelled against the NICE guidelines committee. Cochrane concluded that more medical professionals currently working in ME/CFS needed to be included in the IAG, though I don’t know if the group ever had a full complement.

In early 2023 Cochrane received and then sat on the draft protocol for undertaking the new review, though this draft was not passed on to the IAG and we don’t know if it ever underwent peer review, both presumably necessary prior to it being published. However as late as 2023 Cochrane agreed to fund Hilda Bastian’s continued role suggesting they had not completely abandoned the idea of a new review.

However through 2023 complaints and pressure from us and presumably others about the ongoing delays in the new review and the demand for Larun et al 2019 to be withdrawn, culminating in our letter now signed by so 80 organisations internationally and petitions now signed by very nearly 14,000 people. These communications have been rejected, disregarded and/or ignored as far as we can tell. Although Cochrane promised some of our complaints would be addressed there is no sign of that having happened, unlike in 2017 and 2018 when the previous editor in chief took the detailed argument analysis by several individual patients seriously, leading to the current saga.

We have no idea what has been happening since late 2023 within Cochrane in relation to the new review process until their recent statement abandoning the new review process indefinitely, publicly standing by the 2019 version and indeed reissuing it with a 2024 date.

[note - sorry this took me an hour to write so I have cross posted with subsequent post.]

Lots of important points in summary form here - thanks

glad to see Gerada’s input and relationships being noted . I’m sure I’ve other thoughts that have been prompted here too but..

my main thing I wanted to not forget right now is your para 6 : bps selling the idea that ‘patient representatives are now the conflicts of interest, and researchers whose career has been based on a very particular type of cfs treatment (which they misrepresent as ‘working in the field for the past years’) and establishing a dominant paradigm so those outside this paradigm can’t hold those jobs/tick that box’ is truth vs an inversion attempting to stack the decks to 50% must be biased to holding a strong conflict of interest to a specific paradigm and the other 50% will be balanced

in relation to the ‘update to the declaration of Heksinki: Nature’ thread

this warping of truth / what is fact (pushing new belief system) should be flagged as not only hugely worrying but also a vital inversion psychosomatics seems to have decided it relies on - and is pushing to undermine the definition of science with

I could go furthe but brain not there to nail it right now

 

[Sean]

Excellent summary, @Peter Trewhitt.

Which department is Cochrane specifically housed in at McMaster out of curiosity? Am I right in thinking they would have been in a position without / looking for key resources without that?

Don't know.

 

[Sean]

Now the argument is that we are too involved in the science and therefore are a vested interest who need to be kept at arm’s length lest our views contaminate treatment evaluation.

But by some miracle the main players in the psychosomatic club and their chosen successors are not, and are entitled to infinite benefit of doubt and influence over the proceedings.

 

[Peter T]

Which department is Cochrane specifically housed in at McMaster out of curiosity? Am I right in thinking they would have been in a position without / looking for key resources without that?

McMaster hosts Cochrane Canada which describes it self as follows:

Cochrane Canada is the Canadian arm of Cochrane – an independent global network of over 38,000 healthcare practitioners, researchers, patient advocates and others. Cochrane works to turn the evidence generated through research into useful information for making everyday decisions about health.

Canada is one of 130 countries involved in this non-profit organization that promotes evidence-based decision-making in healthcare by producing high-quality systematic reviews that are free from commercial sponsorship.

Cochrane Canada is one of 18 Cochrane Centres worldwide and was established in 1993. We contribute to Cochrane by:

• Acting as the central point of contact for Cochrane within Canada;
• Promoting awareness, access and use of its main product, Cochrane Reviews;
• Developing relationships with relevant organizations in Canada;
• Coordinating training activities across Canada on how to use and write Cochrane Reviews; and
• Supporting other Cochrane groups located in Canada.

See https://canada.cochrane.org/about-us

It is interesting to look at the list of their Decision-friendly products - Produced by Cochrane Canada and affiliated entities

The umbrella international organisation, which oversees the Cochrane Library is based in London, but is not to be confused with Cochrane UK which had previously been hosted in Oxford but which has been wound up because of lack of funding.

 

[Sasha]

I hope that some people in Cochrane who have seen this all play out are concerned enough to ignore the requirement for individual silence, or at least to start asking some hard questions within the organisation.

Maybe not many people in Cochrane are watching it play out. If there are key players we would like to know about it, we could write directly to them: not as a complaint, not as an attempt to open up a correspondence, simply to say, 'This is going on in your organisation. Don't you think you should be asking questions about it?'

 

[Trish]

Maybe not many people in Cochrane are watching it play out. If there are key players we would like to know about it, we could write directly to them: not as a complaint, not as an attempt to open up a correspondence, simply to say, 'This is going on in your organisation. Don't you think you should be asking questions about it?'

We tried that with our series òf letters which we sent to various senior people. I think that's probably why they issued a warning with their announcement of cancellation of the update, by saying any responses sent to anyone other than the complaints department would not get a response.

 

[Caroline Struthers]

Excellent summary, @Peter Trewhitt.


Don't know.

It's the GRADEing methods group which is based at McMaster. https://www.cochrane.org/ms/about-us/our-global-community/methods-groups#g-30

I think it's hilarious that they have listed a Co-production methods group but it doesn't actually exist! Co-production is working in partnership with people who are the intended beneficiaries of research. Which Cochrane said it wanted to do with this "pilot" project. I don't know if they used to have a co-production methods group and lost interest, or whether they thought it would be a good idea to set one up, until their "pilot" showed the full horror of working with "beneficiaries" they'd been harming for over a decade.

 

[Sasha]

We tried that with our series òf letters which we sent to various senior people. I think that's probably why they issued a warning with their announcement of cancellation of the update, by saying any responses sent to anyone other than the complaints department would not get a response.

Which suggests to me that it had an effect, otherwise they wouldn't be trying to stop us doing it. It doesn't matter if we don't get a direct response from the people we write to; what matters is that people in the organisation are told what is going on, from patients' point of view, and have their consciences prodded and are put in a position where they can't say, in future, that they didn't know what was happening.

This is assuming that there's anyone in there with a conscience, and who cares about patients being harmed. I find it hard to believe that there wouldn't be.

 

[Peter T]

It's the GRADEing methods group which is based at McMaster. https://www.cochrane.org/ms/about-us/our-global-community/methods-groups#g-30

I think it's hilarious that they have listed a Co-production methods group but it doesn't actually exist! Co-production is working in partnership with people who are the intended beneficiaries of research. Which Cochrane said it wanted to do with this "pilot" project. I don't know if they used to have a co-production methods group and lost interest, or whether they thought it would be a good idea to set one up, until their "pilot" showed the full horror of working with "beneficiaries" they'd been harming for over a decade.

I notice there is a Bias Methods Group and an Adverse Effects Methods Group, should we be contacting them given the failure of Larun et al (2019 misleadingly redated 2024) to address either of these issues?

Was the existing CFS Exercise Review and the discontinued replacement review process hosted by any specific Cochrane group, though it seems to have been managed or mismanaged from the Editor in Chief’s office?