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

rvallee said:
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.
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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.
 
Peter T said:
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.
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The road to hell is paved with good intentions. I’m glad she is putting science first now.
 
@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?
 
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.
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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.
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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.
 
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.”
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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.
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https://hildabastian.wordpress.com/2025/08/06/when-an-old-weak-theory-leads-a-field-astray/
 
That theory of ME/CFS – that the mind is central to overcoming the condition – persists in large part due to sustained promotion like this.
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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.”
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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”.
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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”.
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And you’re sure those interventions actually achieve anything for those conditions?
 
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]
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bobbler said:
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):
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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.
 
Not that it applies to any other group either. The whole thing has been revealed as a total scam, regardless of what criteria are used. It makes no meaningful difference for anyone who has fatigue significant enough to warrant a complaint to a health care professional. And even then "I have fatigue" is almost never the actual complaint, all of this is just a corrupt distortion of basic facts with very flawed intent and purpose.

But seeing the pathetic state of Long Covid, stuck in the exact same bind, it's cleat that none of the problems have anything to do with the patients, and everything to do with the terrible state of health care for any issues where the biology is not understood. This is what needs to be fixed. The medical profession needs to do the equivalent of putting on their own oxygen masks before they start thinking about putting it on someone who is unable to. The industrial scale publication and application of flawed pseudoscience is a major scandal in itself, and the industry is clearly incapable of moving out of it.
 
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