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

[Sasha]

Huge thanks to you, @Trish, for all the work you're putting into this. Please don't crash yourself!

 

[SNT Gatchaman]

hope you will, because Cochrane are doing an outstanding job of not listening to patients.

And by "patients" we mean "reason".

 

[Andy]

Petition signatures at time of posting: 14,573

 

[Caroline Struthers]

As I understand it their protocols are about what sort of studies they will include, what they are going to use as the primary and secondary outcome measures, how the data from the studies will be combined and analysed etc. In other words it's a paper and mathematical exercise, not one that involves patients.
I'm not an expert on how the Declaration of Helsinki does or doesn't apply to Cochrane reviews.

It doesn't apply to reviews which is classed as secondary research. That's the loophole for Cochrane - they set a protocol for reviews making decisions which may or may not make sense or may or may not be biased. Then they follow it, or adjust it if they feel like it, and if anyone criticises the resulting review, they say they were just following the protocol, and/or justify any post hoc changes they make during the review process. Protocols of reviews should go through an independent ethics committee approval process in my opinion. In the same way as protocols of primary research do.

 

[Caroline Struthers]

If I was not preoccupied this week I might think about a very brief letter to the BMJ basically saying that it is essential that the international medical community has taken note of Hilda Bastian's recent statements and their implications for Cochrane's credibility.

I might get around to it, especially if one or two others wanted to join in.

yes please

 

[Ash]

I think that at some point there is a piece of work to be done on the levels of coercion that are particularly present and directed at pwme in these subjectively-measured experiments. Including gaslighting having been created from so many different angles, and eg reporting back to employers pressures, being seen to not be 'non-compliant' and so on.

Some people would have been left with an actual choice of 'say you are progressing or lose even more of everything today', ie the consequences or perceived threats weren't hidden under which people were giving their answers. There were obvious 'safe/right answers' put into newsletters.

I say pwme because it is a context, so it can be plotted, not because I don't think that this hasn't at least in some ways been multiplied to other conditions too. However 10+ years ago around the time of these trials in particular the punitive, terrifying and evangelical context towards cfs was pretty extreme and isolated them from social support (which is proper psychology then was well-known and written about as the most important determinant of mental health not being significantly harmed and risked - so I find it fascinating how targeted that was by people who were in that specific area to deliberately create isolation and compulsion by threat of alienation if you do not pretend not to be ill etc)

The method is bad enough. That it was combined with these features makes it a different level of issue. It was no longer just a study on measuring 'treatment' but 'nudge' to a level that you are probably looking at other situational-pressure terms.

A really good point.

It will be that other patient groups have also been targeted for similar or identical tactics of coercion. As there is such an abundance of reports collected by people with M.E. this would make great material for an investigation into this specific angle.

The extent and breadth of pressures to give the right answer. Or risk getting slapped with a diagnosis of psychological pathology, over our act of defiance or non compliance. One that would worsen the quality of our care even further.

Or simply that we’re walking on eggshells trying not to get anyone offside, least we lose whatever support we might need to navigate financial and practical issues such as housing related to disability.

 

[Nightsong]

Someone asked (on another thread which I can't find now) about the citations all the different versions have accumulated, so I used Web of Science to look for all the versions with a similar DOI and explore the citations. Here's the summary containing the cite counts for each version:

 

[Caroline Struthers]

I wonder if the IAG would now consider making a complaint to Wiley about both the publication ethics aspects of all this, & in particular the "update" that has allowed Larun to be cited spuriously as a 2024 review?

I have requested that Wiley investigate my complaint of editorial misconduct and they said in November an investigation is underway. I wrote to them on Friday to inform them of the latest developments (see below). My original complaint to Wiley was directed via this site https://www.wiley.com/en-us/network...integrity/contact-the-research-integrity-team but you could also email them researchintegrity@wiley.com

Dear Dr Williams

Please could you give me an update on the status of the investigation?

In case you are not aware, in December 2024 Cochrane abandoned its commitment to producing a new review and republished the 2019 version with a 2024 date. This could give the impression that the review has been updated when the last search for studies was done ten years ago. In fact, some people on social media have cited it as a new review (https://twitter.com/user/status/1869734984237686937
). This is also unethical, notwithstanding my separate complaint about the (documented) misconduct of the Editor in Chief in 2019 which you are investigating

The Independent Advisory Group appointed to guide Cochrane on the production of the new review has written an open letter to the Chief Executive which give more details.

https://hbprojecttalk.wordpress.com/2025/01/24/independent-advisory-group-open-letter-to-cochrane/

With best wishes

Caroline

From: Wiley Research Integrity <researchintegrity@wiley.com>
Sent: 26 November 2024 03:08
To: Caroline Struthers <caroline.struthers@csm.ox.ac.uk>
Cc: dpentesc@wiley.com; cope_assistant@publicationethics.org
Subject: Re: Allegation of misconduct of Editor in Chief of Cochrane Library

Dear Ms. Struthers,

I am writing to you from the Integrity Assurance & Case Resolution (IACR) team at Wiley regarding your allegation of editorial misconduct against the Editor-in-Chief of the Cochrane Library, Dr. Karla Soares-Weiser. My apologies for the delay in getting back to you.

As the publisher's (Wiley's) integrity team, the IACR has been independently investigating the case to ensure that Cochrane followed the correct processes regarding your complaint to them. To be clear, Cochrane has the primary responsibility to handle complaints regarding their publications. However, Wiley and the IACR do have a role in making sure that Cochrane's own guidelines and, more broadly, COPE principles were followed. This is what we are focused on in this investigation.

While I understand that this can be frustrating, investigations such as these can unfortunately take quite some time. We are not always able to give prompt status updates or specific timelines. However, I will do my best to keep you updated, and I will report our findings to you when our investigation is concluded.

Kind regards,
Dr. Max Owen Williams

Max Williams
Associate Research Integrity Auditor
Integrity Assurance & Case Resolution

 

[rvallee]

Hilda Bastian has just posted the following on her talkpage in response to some questions I asked there a few weeks ago.
https://hbprojecttalk.wordpress.com/2024/12/18/brief-message/

This whole project is a dumpster fire. Cochrane is inept and behaving in very bad faith, literally all the excuses they have amount to "we are completely incompetent and don't care". But Bastian seems to mostly accept it and leave them do as they please. Can't be both confrontational and chummy at the same time. She seems to want to do the right thing, but doing so is incompatible with retaining a good relationship with Cochrane, which clearly takes precedent.

The IAG seems to come off rather well here, having tried, but everything in secret, behind closed doors. But Cochrane has been nothing but malicious and Bastian too comfortable with their obvious malice and obstruction. It's been 5 years. This is pathetic.

 

[Nightsong]

Just to note that Hilda has made a few additional remarks in this Bluesky thread; there is also some discussion of context & background, including other problems at Cochrane.

Full thread under the spoiler tag for those who don't want to click through to social media.

Spoiler: BlueSky thread

└─ [Hilda Bastian | @hildabast.bsky.social] 2025-01-24T05:17:27.958Z
I never thought a day would come when I would write a post this critical about the Cochrane Collaboration. But today was that day:

absolutelymaybe.plos.org/2025/01/24/w...

#mecfs
├─ [Robert | @robertb1.bsky.social] 2025-01-24T06:57:01.822Z
│ Wow, just wow. /Sad face
│ └─ [Hilda Bastian | @hildabast.bsky.social] 2025-01-24T07:02:32.322Z
│ Yeah. Me too.
├─ [Gilles Thöni, PhD | @thonigilles.bsky.social] 2025-01-24T09:51:19.598Z
│ bsky.app/profile/thon...
├─ [@monika-dryburgh.bsky.social] 2025-01-24T10:01:01.789Z
│ Thank you for this.
├─ [@mariasale8.bsky.social] 2025-01-24T10:24:13.294Z
│ Thank you so much for this important article. You must feel so angry and let down,as do we.
├─ [Dom | @domsalisbury.bsky.social] 2025-01-24T11:16:18.201Z
│ No doubt Paul Garner is having an influence, with his lobbying for pseudoscience and constant false information on ME/CFS and long covid.
├─ [Robert Saunders (aka McMullen) | @roberthmcmullen.bsky.social] 2025-01-24T11:33:45.475Z
│ Anyone reading this, please consider signing and sharing the petition calling for Cochrane to withdraw its harmful review of exercise therapy for CFS: www.change.org/p/cochrane-w...
├─ [PZ | @itsmepz.bsky.social] 2025-01-24T12:34:40.852Z
│ Thank you for your persistence and candidness.
├─ [Dr Hannah Farrimond | @hannahfarrimond.bsky.social] 2025-01-24T12:45:29.960Z
│ Wow, and not in a good way...
├─ [Winged Hussar | @wingedhussar.bsky.social] 2025-01-24T14:22:54.165Z
│ If there was a single phrase that largely explains all the problems, it's "brought in consultants".
│ └─ [Hilda Bastian | @hildabast.bsky.social] 2025-01-24T22:18:01.849Z
│
├─ [FionaMECFS | @fioname.bsky.social] 2025-01-24T16:04:03.341Z
│
├─ [Hubba Bubba | @hubbubhullabaloo.bsky.social] 2025-01-24T16:08:37.623Z
│ Didn’t they have a “masks don’t work” paper that was an absolute catastrophe and embarrassment a couple of years ago where the authors had to apologize? The damage was already done at that point though.
│ └─ [Hilda Bastian | @hildabast.bsky.social] 2025-01-24T22:17:38.394Z
│ In the post I refer to a major pandemic-related controversy in 2023 which I didn't name. That was it.
├─ [Katie Corker | @katiecorker.bsky.social] 2025-01-24T16:56:11.533Z
│ Thanks so much for writing this, Hilda! What a terrible situation. You've piqued my interest about the structure of the Cochrane Collaboration as a journal. Is there somewhere I can read more about the history/specifics of that setup? The journal is owned by Cochrane, published by Wiley, I see.
│ └─ [Katie Corker | @katiecorker.bsky.social] 2025-01-24T16:56:11.534Z
│ I see a bit of info here: futurecochrane.org/frequently-a...
│
│ about a shift to OA. I'm curious if any real champions for preprinting or open peer review come to mind in Cochrane-land. Appreciate any contacts, thanks! Happy to follow up by email if that's easier.
│ └─ [Hilda Bastian | @hildabast.bsky.social] 2025-01-24T22:17:01.053Z
│ They're not shifting to OA after all: that changed late last year too. Wasn't room for everything in the post. I don't know who's championing preprints & open peer review, sorry. For this project, I got them to agree to plan to preprint the protocol, but couldn't win on open peer review.
│ └─ [Katie Corker | @katiecorker.bsky.social] 2025-01-25T11:44:55.136Z
│ Wow, that's wild that they abandoned OA. I wonder what they plan to do about the growing number of researchers facing OA policies. In any event thanks for the insights - sounds like a very challenging situation.
│ └─ [Hilda Bastian | @hildabast.bsky.social] 2025-01-25T11:55:44.398Z
│ They are partially there - green access (after a year) and a author-charge gold option. It was the promise to be fully OA in 2025 without author charges that they dropped.
│
│ www.cochranelibrary.com/about/open-a...
│
│ And some countries pay to have the paywall down in their region.
│ └─ [Katie Corker | @katiecorker.bsky.social] 2025-01-25T12:08:13.929Z
│ The embargo (should be) a no-go under US policy, and the hybrid OA a no-go under a growing number of European and foundation policies. Weird move at this moment to walk promises back.
│ └─ [Hilda Bastian | @hildabast.bsky.social] 2025-01-25T12:13:25.102Z
│ I don't know enough about how some of what's on that page works at the moment - I used to be on top of it, but not any more.
├─ [David Tuller | @davetuller1.bsky.social] 2025-01-24T16:59:00.972Z
│ There's always a first time. It's like when you recognize for the first time that your parents can be total assholes!!
│ └─ [Hilda Bastian | @hildabast.bsky.social] 2025-01-24T22:13:19.106Z
│ lol. But nah. Until fairly recently, this organization had a membership-based power structure. Which meant (a) it tended not to drift too far away from its rank and file, (b) if it did, it could be snapped back on track by internal outcry, and (c) you could mobilize for progress from within.
├─ [The Real McCoy | @rippermd41.bsky.social] 2025-01-24T17:07:25.401Z
│ Thank you for speaking up on this
├─ [Snow Leopard | @snowypanthera.bsky.social] 2025-01-25T01:20:52.266Z
│ It looks very much like a faceless takeover of Cochrane by the medical establishment, complete with resistance to any challenge to their power.
├─ [Otrosdías | @otrosdias.bsky.social] 2025-01-25T07:51:39.612Z
│
├─ [Jo Morrison | @jomorrison.medsky.social] 2025-01-25T23:22:13.628Z
│ Shocked and saddened, Hilda. Personally very grateful for your involvement as a critical friend of reviews
│ └─ [Hilda Bastian | @hildabast.bsky.social] 2025-01-26T02:25:51.803Z
│ Thank you, Jo! It's a symptom of some things going off the rails, and that means getting the word out across our community. This retreat from responsiveness can, and must, be turned around.
│ └─ [Jo Morrison | @jomorrison.medsky.social] 2025-01-26T09:20:39.249Z
│ The impact of loss of funding from NIHR and Canadian government has been disastrous, as the majority of the CRGs were lost, along with a huge number of really great, dedicated people. It also meant the loss of Coeds meetings with EIC, which lost a huge amount of accountability for CEU
│ └─ [Jo Morrison | @jomorrison.medsky.social] 2025-01-26T09:20:39.250Z
│ All this happened at same time as COVID and loss of F2F meetings.
│ └─ [Hilda Bastian | @hildabast.bsky.social] 2025-01-26T10:39:09.826Z
│ I'm so sorry the CRG community was hit so hard.
│
│ Yes, there was a lot of adversity in quick succession. Delays in reviews, especially when so many Covid reviews were needed, is understandable. But most of this isn't about the review side at all.
│ └─ [Jo Morrison | @jomorrison.medsky.social] 2025-01-26T11:08:33.416Z
│ The problem with areas of polarised controversy is that if you are being balanced you are going to get a lot of flak from one or both sides. We need editorial, academic and scientific bravery now more than ever.
│ └─ [Hilda Bastian | @hildabast.bsky.social] 2025-01-26T11:15:39.701Z
│ It's not that common tho for both sides to be equal. Vaxes are controversial & polarised, but dramatically different in validity of arguments.
│
│ I agree on bravery++. Skill in managing controversies also matters, or it drives constant escalation. Giving people more cause for anger is disastrous.
└─ [Judy Stone | @drjudystone.bsky.social] 2025-01-26T03:01:21.200Z
What a sad post, @hildabast.bsky.social, seeing how far #Cochrane reviews has fallen. I feel bad for you, too; this must have been infuriating and disillusioning. Thank you for writing this about #ME/CFS and #PEM and them.
└─ [Hilda Bastian | @hildabast.bsky.social] 2025-01-26T03:09:13.949Z
Thanks, Judy! Not disillusioning - there were always bad Cochrane reviews. Not the first staff drift away from the soul of the organisation. It's not the first personal betrayal, or major policy loss. Movements are like that. But it's the 1st time I have to try to mobilize in public & on principles.
└─ [Hilda Bastian | @hildabast.bsky.social] 2025-01-26T03:10:46.222Z
...And yes, it is awfully sad that it came to this. Been a long time since Cochrane brought me to tears.

 

[Maat]

I have just submitted this complaint to Cochrane on behalf of the committee.

In brief, it's a complaint that we have not been informed of the outcome of our previous complaints, contrary to Cochrane's own complaints policy.
This also means we theoretically can't escalate our complaint to the Cochrane appeals process or to COPE or the Charity Commission, since they require evidence that we've made a complaint and the outcome. We've given them 3 weeks to come back with a substantive response or we'll escalate it anyway.

Doesn't a chronology really show up how bad this has really been. Well done.

One could also argue that Cochrane's actions in December 2024 IS a response and that, in and of itself, is reason to escalate.

Therefore, giving them a further 3 weeks is a very reasonable attempt at reaching a proper conclusion of the complaints process under their own complaints procedure. i.e. you're following it and they're not.

 

[Hutan]

This whole project is a dumpster fire. Cochrane is inept and behaving in very bad faith, literally all the excuses they have amount to "we are completely incompetent and don't care". But Bastian seems to mostly accept it and leave them do as they please. Can't be both confrontational and chummy at the same time. She seems to want to do the right thing, but doing so is incompatible with retaining a good relationship with Cochrane, which clearly takes precedent.

The IAG seems to come off rather well here, having tried, but everything in secret, behind closed doors. But Cochrane has been nothing but malicious and Bastian too comfortable with their obvious malice and obstruction. It's been 5 years. This is pathetic.

That's an interesting assessment @rvallee. I think I attribute well-meant and sincere effort, complacency and naivety to both Hilda and the IAG as a collective.

No doubt there were some individuals on the IAG who put a lot of effort and time into trying to make the review a success. But it was many years and, in a lot of ways, we are at a worse place than we were in 2019. When it was known that the draft protocol was done, why didn't the IAG announce that? Why didn't they tell the world that they were waiting for Cochrane to consult them, so that others could help to apply pressure in the right places?

Some of my email conversations with IAG members indicated a substantial amount of the attitude 'I understand everything that needs to be known, the IAG has everything in hand, just leave it to us'. That didn't come from all of the IAG members I communicated with, but some. The lack of information made planning the Science for ME campaign extremely difficult - we did not know exactly what we were dealing with, and who we needed to target. Some of the people associated with the IAG (not just representatives but also their organisations), not all, were actively critical of our campaign, and most did not help it in any way.

In choosing to make the whole process so opaque, and in their lack of understanding of the risk around achieving a good quality new review, I think the IAG have to accept some of the blame for the current situation.

Perhaps the politically wise thing to do here is to thank the IAG for their efforts and only criticise Cochrane. But, I think there are lessons to be learned about how advocates should engage with BPS-promoting organisations and with others in the ME/CFS community. A lack of transparency often plays into the hands of bad actors. The long periods of silence from the IAG felt like disrespect to those who were not in the inner circle.

It would be good to see some accounts from the IAG members who were representing ME/CFS communities, along with some acknowledgement that they could have done things better, and will do things better going forward.

 

[Ash]

X

That's an interesting assessment @rvallee. I think I attribute well-meant and sincere effort, complacency and naivety to both Hilda and the IAG as a collective.

No doubt there were some individuals on the IAG who put a lot of effort and time into trying to make the review a success. But it was many years and, in a lot of ways, we are at a worse place than we were in 2019. When it was known that the draft protocol was done, why didn't the IAG announce that? Why didn't they tell the world that they were waiting for Cochrane to consult them, so that others could help to apply pressure in the right places?

Some of my email conversations with IAG members indicated a substantial amount of the attitude 'I understand everything that needs to be known, the IAG has everything in hand, just leave it to us'. That didn't come from all of the IAG members I communicated with, but some. The lack of information made planning the Science for ME campaign extremely difficult - we did not know exactly what we were dealing with, and who we needed to target. Some of the people associated with the IAG (not just representatives but also their organisations), not all, were actively critical of our campaign, and most did not help it.

In choosing to make the whole process so opaque, and in their lack of understanding of the risk around achieving a good quality new review, I think the IAG have to accept some of the blame for the current situation.

Perhaps the politically correct thing to do here is to thank the IAG for their efforts and only criticise Cochrane. But, I think there are lessons to be learned about how advocates should engage with BPS-promoting organisations and with others in the ME/CFS community. A lack of transparency often plays into the hands of bad actors. The long periods of silence from the IAG felt like disrespect to those who were not in the inner circle.

It would be good to see some accounts from the IAG members who were representing ME/CFS communities, along with some acknowledgement that they could have done things better, and will do things better going forward.

I understand that this refers to private correspondence So you’ll probably not be naming and shaming the organisations.

But I’d like to know or be reminded what these objections consisted of?
The S4ME campaign didn’t even kick off until it was clear the project’s was stalled, that was the whole point.

Yes. I think taking on an advocacy role does come with responsibility to do this well, most importantly by being sure to take a realistic assessment of landscaping at the out set of involvement with a project. At a certain point good intentions become less relevant when failure follows failure and the same mistakes are repeated over and over.

 

[dave30th]

This is interesting, was their any particular sticking point? Or was it the fact that he was unwilling to throw out/re-think much of the findings associated with psychological therapies in particular?

It was a while ago so memory is fuzzy. I raised the entire design as a problem, and he more or less indicated that the notion of discounting all such studies was a non-starter.

 

[dave30th]

But Bastian seems to mostly accept it and leave them do as they please.

i understand why you might feel this way, but I don't share this view. It's always possible to argue that those on the inside trying to make change should have done more and left sooner or whatever. I think she accepted an impossible task and has done her best to do it in very, very difficult circumstances--and not only institutional ones but personal ones as well (death of a child). It might be the entire project was a dumpster fire from the beginning. But I don't read Hilda's post or statements as indications that she's trying to remain cozy or buddies with Cochrane or do anything but figure out how to move forward.

ADDED: In other words, there's always a discussion about whether it might have been more wiser or more effective, especially in hindsight, to do this or that instead of that or the other. But that's different from questioning whether someone's motivation is to try to do the best for patients as possible.

 

[Jonathan Edwards]

It was a while ago so memory is fuzzy. I raised the entire design as a problem, and he more or less indicated that the notion of discounting all such studies was a non-starter.

It would have been interesting to have a video of that conversation to re-run in slow motion like on a TV crime series.

I used to think Cochrane reviews were fairly reliable but I also assumed that anyone who got involved in the practical side of Cochrane must be a bit of a nerd, addicted to dotting 'i's and crossing 't's in words they did not necessarily understand. Maybe that is why the founders of Cochrane were able to run an organisation that at times was garbage in garbage out - to suit their specific agenda.

 

[Jonathan Edwards]

i understand why you might feel this way, but I don't share this view. It's always possible to argue that those on the inside trying to make change should have done more and left sooner or whatever.

I agree that Hilda seems to have done her best and cannot be now accused of still trying to cozy up to Cochrane.

But what has been clear from the outset is that, apparently as with Tovey, she never understood the general argument about these trials being worthless as gauges of treatment efficacy. Maybe a lot of people just don't get how it works, although it seems easy enough to see if you are familiar with how patients and health care professionals normally interact.

I suppose that it is possible that she publicly pretended not to understand, in order to be allowed to run the project, but we now have the worst of all outcomes after 5 years of prevarication by Cochrane. Was there ever any point? - I don't know.

 

[Caroline Struthers]

I agree that Hilda seems to have done her best and cannot be now accused of still trying to cozy up to Cochrane.

But what has been clear from the outset is that, apparently as with Tovey, she never understood the general argument about these trials being worthless as gauges of treatment efficacy. Maybe a lot of people just don't get how it works, although it seems easy enough to see if you are familiar with how patients and health care professionals normally interact.

I suppose that it is possible that she publicly pretended not to understand, in order to be allowed to run the project, but we now have the worst of all outcomes after 5 years of prevarication by Cochrane. Was there ever any point? - I don't know.

I hope the collected email correspondence is published, as Hilda promised it would be. And the collated report of criticisms. There is an awful lot to sweep under the carpet...I don't think there's a carpet big enough

 

[Trish]

I hope the collected email correspondence is published, as Hilda promised it would be.

I'm not clear which email correspondence you are referring to here. Can you clarify?

 

[Caroline Struthers]

I'm not clear which email correspondence you are referring to here. Can you clarify?

All the correspondence to and from the IAG email address. cochrane.iag@gmail.com. I will try and find where she committed to this.