Blog: Hilda Bastian "Six Months Later: What Their Response on ME/CFS Tells Us About the Cochrane Collaboration"

[SNT Gatchaman]

https://absolutelymaybe.plos.org/20...fs-tells-us-about-the-cochrane-collaboration/

In giving this review the status of a 2024 version, Cochrane is remaining active on one side of a major controversy, rather than retiring the review and leaving the field with a neutral posture. This is extremely problematic on a topic where systematic reviews are cherry-picked and weaponized, with claims that reviews unfavorable to one side or the other represent caving in to pressure. The status Cochrane has given this review encourages the perception that it yielded to vested interests rather than staying true to its mission of providing reliable evidence and health information.

There are many people who care about the harm this outdated review can do, and won’t let it go – myself included. And it’s only a matter of time till other influential reviews that are misleading by virtue of being out-of-date stir up the same kind of conflict. Cochrane’s response to the complaints about their exit from updating the ME/CFS review show they aren’t well-placed to deal with that – and reveal some other issues of concern.

Six months ago, I ended my post with this comment about the organization’s current trajectory: “It needs to change course. The new conflict it has created around the ME/CFS review presents it with a valuable opportunity to do so.” The organization’s leadership have, so far, chosen not to take that opportunity. Given the Cochrane Collaboration’s reliance on their exceptional status and members, that is untenable. Not retiring influential out-of-date reviews is a ticking time bomb.

 

[forestglip]

S4ME got a mention:

On the other hand, issuing a new citation for a review just because an editorial note has been edited is definitely not covered by policy: Indeed, this is the only time that has been done. That’s because a new citation is constructed to show as an update. See for example the entry for the previous version in PubMed, which automatically flags it is updated in the new version. On Cochrane’s website, it is automatically flagged with, “This is not the most recent version.”

We weren’t the only people complaining, of course. And there was a flash of openness about this in their reply to a complaint by Science For ME:

“This decision does not breach our editorial policy but uses operational discretion in applying the publication guidance regarding editorial notes.” [Cochrane Complaints, March 3, 2025]

Policy is not standing in the way of making it clear to readers that the ME/CFS review is out of date.

 

[bobbler]

before I've got on with reading this it has reminded me that this was released on the last day before recess for xmas.

And of course the implementation plan was the last day before parliamentary recess this summer.

It seems a pattern and I haven't looked any further.

1. is there co-ordination going on for this choice of dates being on the last day before a big parliament break happenning for ME/CFS

2. has this 'habit' ever happened for anything else? particularly any other medical things?

 

[Nightsong]

The "national licence" that the British Government pays for (for everyone in UK IP ranges to be able to freely access Cochrane's content) is clearly the largest source of its income. At present the universities and NHS bodies don't need to pay for access to the Cochrane Library - as they pay academic publishers for access to other journals - because of this arrangement, which is administered by NICE. Hilda also discussed this in her previous blog:

One of the pivotal national licences is for England, paid for by NICE. For its last licence, NICE had called on the higher education sector to help with the costs. NICE’s annual report shows that this yielded less than £50,000 per annum, though they don’t report how much they pay for the licence. (For perspective, Switzerland, a country a small fraction of England’s size, paid over US$200,000 for their 2024 licence.)

NICE is obviously an arms-length quango but this is clearly going to be something authorised by the Department for Health. And, as Hilda mentions, New Zealand are ending a similar arrangement with Cochrane very soon. Perhaps if some of the ME patient community's friends in Parliament could be persuaded to raise Cochrane's diminishing standards, its behaviour towards patients, and the other Cochrane scandals such as the masking controversy - with DHSC. . .

British taxpayers absolutely should not be paying for this.

 

[Sean]

Thank you, @Hilda Bastian, for not letting this go.

Previously, reviews had been the domain of editorial review groups, but now, reviews are edited centrally, and can be submitted directly too. However, in mid-2023, the centralized editorial process for responding to feedback was ended. It is now the authors’ responsibility whether or not they respond to criticisms. Yikes!

In abdicating this editorial responsibility, along with a new policy of not informing readers when they know a review is out-of-date, Cochrane has dismantled a core part of what defined Cochrane reviews.

Every time I start thinking the 'authorities' couldn't get any worse, there they go and prove me wrong. Again.

 

[hotblack]

2. has this 'habit' ever happened for anything else? particularly any other medical things?

It’s very common for all sorts to go out on the last day(s) before recess. Not a good practice, but a common one.

 

[Hutan]

Great to see this followup from Hilda.

In abdicating this editorial responsibility, along with a new policy of not informing readers when they know a review is out-of-date, Cochrane has dismantled a core part of what defined Cochrane reviews. Meanwhile, the reviews are getting progressively more out-of-date. With the loss of funding for so many editorial review groups recently, and the centralization of editing in a small group, the rate of reviews being out-of-date is presumably escalating, while key mechanisms for dealing with outdated or inaccurate reviews have been curtailed.

Meanwhile, the organization’s promotional rhetoric hasn’t been updated to reflect the changed nature of Cochrane reviews. The Cochrane website has had a major update in the last few weeks. They still have the central goal and claim of of providing the “best evidence to help patients and health organizations to make informed decisions.” A new section was added: “Why our evidence is trusted,” with the tagline, “We provide high-quality, unbiased health information.” And there is this claim:

“We are committed to regular reviews of every piece of our evidence. We assess whether findings are still relevant, and we identify aspects to investigate further or update. We believe this is critical to ensure the ongoing reliability and trust in our work as medicine progresses.”

They go on to say, “Governments in all continents of the world regard our evidence so highly that they give their entire populations access to our systematic reviews by funding national provision through the Cochrane Library.” Of course, governments don’t typically do this for medical journals: They do this because of the unique nature the Database used to have. If key pillars of reliability of the Database for users are no longer there, and Cochrane doesn’t take action on high profile unreliable reviews, how long can this special status last?

This is existential for an organization whose current long-term economic strategy involves publicly-funded subscription, especially national ones. I wrote about this earlier this year. Since then, one of only 10 countries outside the UK funding like this has announced it will end soon (New Zealand).

British taxpayers absolutely should not be paying for this.

Neither should the taxpayers in countries and states still paying Cochrane for access to the Library.

I've made a post on the Cochrane's Funders thread, listing out the funders of these regional access arrangements.

 

[Maat]

It seems a pattern and I haven't looked any further

Yes. Cochrane's republishing of the review with the 2024 date coincides with the (3 days before or after) coroner's 56 day deadline to respond the PFD Report on Maeve Boothby O'Neill. Although not a recipient of the PFD, this inexplicable event landed within the same timeframe.

This follows a now clearly identifiable, recurring pattern surrounding all significant milestones in ME/CFS - unique to this illness. It's the mechanism employed to support the political/medical agenda for the last 30 years.

The core reason no progress has been made up to and including the Final Delivery Plan which is an official government policy document.

The complaint I'm finalising lays this bear with supporting evidence to this assertion.

 

[rvallee]

https://absolutelymaybe.plos.org/20...fs-tells-us-about-the-cochrane-collaboration/

Rather strong words, given Bastian's generally very moderate, even generous, attitudes towards Cochrane. She really seems to have genuinely tried her best, but with an organization that never had any intentions of doing the right thing, it was an impossible task. I really doubt this is confined to this review, it's almost guaranteed that those problems are common, even a feature of evidence-based medicine, which seems to operate within a parallel worldview.

The status Cochrane has given this review encourages the perception that it yielded to vested interests rather than staying true to its mission of providing reliable evidence and health information.

I think it's more than fair to say that this was never Cochrane's true mission. To me it seems more like a high school clique, only exists for its own sake and interests.

The controversy is extending, as the literature on Long Covid grows

I really wonder if they get that. I don't think they do. They are really not thinking of the consequences of them being wrong here.

But it’s not that alone that gives it a special status: It’s because they are meant to be reliable by updating in response to new evidence and valid criticism.

I think that up-to-date also works this way? It's not any better, that's for sure. Not much point in having up-to-date reviews of evidence that aren't actually up-to-date and distort the evidence while featuring heavy bias.

There are many people who care about the harm this outdated review can do, and won’t let it go – myself included.

Because of the secrecy around the entire process, it was always impossible to say exactly who did their job, and who didn't, and it's clear that the fault is 100% with Cochrane here. It looks as if they assumed that Bastian would be a good team player, eventually side with them and do a proper cover-up, but she is better than this. Thank you for not giving up Hilda.

 

[Peter T]

It looks as if they assumed that Bastian would be a good team player, eventually side with them and do a proper cover-up, but she is better than this. Thank you for not giving up Hilda.

I must admit for several years, I interpreted Hilda’s apparent willingness to indulge or even seemingly cover for Cochrane’s delays and obfuscation as indicating that she regarded Cochrane’s game playing and internal politicking as more important than good science. However, her subsequent persistence and outspoken criticism makes it clear I had misjudged her.

 

[Utsikt]

I must admit for several years, I interpreted Hilda’s apparent willingness to indulge or even seemingly cover for Cochrane’s delays and obfuscation as indicating that she regarded Cochrane’s game playing and internal politicking as more important than good science. However, her subsequent persistence and outspoken criticism makes it clear I had misjudged her.

The road to hell is paved with good intentions. I’m glad she is putting science first now.

 

[SNT Gatchaman]

Update on August 3: I added a second country announcing the end of its national subscription (Switzerland).

 

[Yann04]

@Hilda Bastian vis à vis Switzerland ending national subscription, I think this is slightly innacurate. The SAMS has announced it will stop providing money towards the national subscription but given that many universities and university library plus the Federal Office of Public health provides much of the money towards the “national subscription”, I don’t think that means the Swiss national subscription is ending?

 

[Nightsong]

Interesting that, now, two countries are discontinuing such an arrangement. This is what the Swiss Academy for Medical Sciences webpage says:

The SAMS has decided to end its support for two main reasons. The first is that the Academy, in its role as catalyst, has as a rule financed projects for a fixed period, often shorter than the 10 years of support for the Cochrane Library. The second reason is the absence of any increase in the subsidies granted by the Confederation to the SAMS over the period 2025-2028, forcing the SAMS to make budgetary trade-offs.

Of course, the Academy reiterates its support for evidence-based research. Aware that its decision leaves a gap, it has endeavoured to find other partners to fund the national licence. Unfortunately, prior contacts have not identified an entity willing to take on this responsibility. We are well aware of the inconvenience caused by this situation, which is why we wanted to inform those concerned as soon as possible.

Presumably that means that it will be left to the individual institutions (universities, hospitals, health agencies) to subscribe to Cochrane content via Wiley on an institution-wide basis, as occurs in countries without a national licence.

The "national licence" concept is actually quite unusual - certainly, I've never heard of any other organisation's journal being made available, by taxpayer provision, to everyone coming off a specific country's IP address ranges before. There are some examples of outsourcing, such as NICE CKS (the provision of which is outsourced to Clarity Informatics) but not for a journal; Cochrane seems to have finagled themselves quite a unique arrangement here.

If the statement is taken at face value, SAMS have discontinued their support for financial reasons, rather than due to a fundamental reassessment of Cochrane itself.

Nonetheless, good news.

 

[Nightsong]

A further mention in a new blog post by HB, "When an Old Weak Theory Leads a Field Astray":

I spent a lot of time recently on another example of this phenomenon. Back in May, the BMJ ran an online opinion piece by Alastair Miller and colleagues arguing that even people with severe ME/CFS can recover if they are guided down a path that begins with “reframing beliefs about illness.”

That theory of ME/CFS – that the mind is central to overcoming the condition – persists in large part due to sustained promotion like this. It comes, as these things tend to do, with a lot of references that gives an impression of solidity. Readers ordinarily don’t have time to do anything other than take all that at face value. This time, I decided to go systematically down the rabbit hole of citations, to understand the the links in the chain of theory that leads to telling people they are, in effect, responsible for their own suffering.

https://hildabastian.wordpress.com/2025/08/06/when-an-old-weak-theory-leads-a-field-astray/

 

[bobbler]

That theory of ME/CFS – that the mind is central to overcoming the condition – persists in large part due to sustained promotion like this.

in reference to

Back in May, the BMJ ran an online opinion piece by Alastair Miller and colleagues arguing that even people with severe ME/CFS can recover if they are guided down a path that begins with “reframing beliefs about illness.”

A really important thing for someone to say.

Particularly given eg this specific issue of 'confusion' [due to mixed messages about what was useful for the illness/its cause] that came up as being behind continual delays/non-treatment in Maeve's inquest (summer 2024) that culminated in a prevention of future deaths follow-up (autumn 2024) - although I don't know whether that was sent to the BMJ or those that commissioned this article by Miller et al (and included Garner) that was published in May 2025?

I'd be brave and wonder what was going on when he wrote an article published on 27th July 2024, ie at the actual time of the inquest itself too: https://www.theguardian.com/comment...case-highlights-clashing-nhs-narratives-on-me.

Where he [Miller] tried to pick a slightly different path of rhetoric about what his/their narrative was, about what they claimed they had merely been 'pushing' (as in 'push' communications/education etc) and why. my bolding:

Sadly, it is this conflict between those who think that ME/CFS is a purely psychological condition, with no biomedical basis, and those who believe it is a purely physical condition, with no psychological implications, that has dominated the narrative around this illness.

In mainstream ME/CFS clinics where I’ve worked in the NHS, the conversation is completely different. I know of no colleagues who hold the view that ME/CFS is “all in the mind”. It is just that we currently cannot yet identify a mechanism. Not surprisingly the highly unpleasant and debilitating symptoms are often exacerbated by associated depression and anxiety, and therefore many patients benefit from appropriate psychological interventions such as cognitive behaviour therapy (CBT).

It is also clear to doctors in the field that the individuals who recover best from ME/CFS are those who steer a “middle road” between excess physical activity and excess rest. Patients can’t exercise their way out of the illness but neither will total inactivity deliver recovery. The fact that we use CBT and other behavioural approaches in no way implies that we do not believe this is a physical condition. After all, we use CBT and rehabilitation to relieve symptoms in cancer, in rheumatoid arthritis and following heart attacks. Nobody has ever suggested that those conditions are “all in the mind”.

 

[Utsikt]

They knew exactly what they were saying. Not owning up to it just goes to show how little credibility they can be given.

After all, we use CBT and rehabilitation to relieve symptoms in cancer, in rheumatoid arthritis and following heart attacks. Nobody has ever suggested that those conditions are “all in the mind”.

And you’re sure those interventions actually achieve anything for those conditions?

 

[bobbler]

Apologies for being late to the game on picking this one out and sure it is repeated elsewhere but as there was a link to her rapid response to that Miller et al article (that included Garner): https://www.bmj.com/content/389/bmj.r977/rr-30

I couldn't help but thank her for underlining the following, (particularly considering Miller's assertions/narrative in the third quote box of my comment above):

Perhaps part of why psychologically-based rationales for disease can be widely accepted is because the harm this can do is underappreciated. Miller et al argued that their narrative inspires hope, and people with severe ME/CFS deserve that. But when the unproven theory can’t deliver on the claims, what then? In a study Miller et al cited, researchers found that being told the disease was psychosomatic was the most common reason for suicidal thoughts for people with ME/CFS. [9]

 

[Yann04]

Apologies for being late to the game on picking this one out and sure it is repeated elsewhere but as there was a link to her rapid response to that Miller et al article (that included Garner): https://www.bmj.com/content/389/bmj.r977/rr-30

I couldn't help but thank her for underlining the following, (particularly considering Miller's assertions/narrative in the third quote box of my comment above):

Glad she picked up on that. I said it in the thread on the paper and some germans partially (but unfortunately not very explicit) mentioned that in a later rapid response.

Glad to see her take it up and write it out simply and clearly.