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

It’s so confusing because she’s a sort of celebrity “advocate” for people with Long COVID. But has a terrible track record on ME.

 

George Monbiot has shared Bastian's blog on Bluesky together with a thread:

This is deeply shocking and disturbing, the opposite of scientific good practice. As I see it, a group of diehards promoting a discredited treatment (exercise "therapy" for ME/CFS patients) are seeking to stifle medical progress - to protect their reputations. And Cochrane has kowtowed to them.

The result of their concerted reputation-washing is that patients continue to be abused and subjected to treatments that make their condition worse. However grand and eminent scientists may be, their reputations must always take second place to the evidence. They need to admit they got it wrong.

Instead, a massive propaganda effort, led by the Science Media Centre and lapped up by credulous journalists, has protected their discredited claims from criticism, at a devastating cost to patients. *There is no place for grandeur in science*.

It seems horribly symbolic of what is happening in other areas of public life: powerful interests override the public good, evidence and reason. The last places where this dynamic should operate are science and medicine. But even here, eminent bodies succumb to the pandemic of grovelling.

 

For those like me who struggle to remember who people are, or for people from outside the UK Wikipedia says:

 

Worth remembering that statisticians tend not to understand anything about blinding of trials. Blinding is there to solve a problem with human nature entering with measurements. Statisticians are often not that good on human nature. Medical students get steeped in it from their first clinical year!

 

The choice of criteria is relevant but if criteria are wider than the set of interest they are still valid for that set unless there is evidence to the contrary.

In the end the analysis is a statistical one of what is the most likely predicted probability of result in a study applying to another set of patients, based on all available knowledge. If you say, 'Ah but the cohort might not be representative on factor x', without evidence then that is special pleading and a statistical analysis explicitly disallows special pleading because it gives a prediction considered most likely to apply all current knowledge considered.

You can certainly raise concerns about a subgroup not being represented adequately by a larger group. But then what you do is stratify by subgroup and re-analyse. To their credit, the PACE authors did this and showed no difference between results for the wider group and for a more specific ME/CFS group. They didn't point out that there were no eggs in either box but they did what they could be expected to do.

 

Of course they are. They are appointed because they are reliable non-boat-rockers. Every time.

 

Yes, but, as my old boss used to say, even a policeman could work out that 'it's difficult' is no argument and that objective results are the solution. At that stage it is simply a question of assuming that young doctors have basic common sense.

 

It is simply because they are biased and dumb, let's face it.

 

There is no justification for using rules based on what other people think. Someone assessing reliability has to know why things are reliable themselves. It isn't difficult. It is almost entirely common sense. But rules can only ever be an approximation to what some other people think and in science you never go by what other people think anyway.

 

Suspect her views re Cochrane are not so much about ME/CFS but shaped by other events - both the mask review and other events such as this:

https://blogs.bmj.com/bmj/2018/09/17/trish-greenhalgh-the-cochrane-collaboration-what-crisis/

 

I don't think the current government have any more of a clue as to the machinations of medical politics than the Flowerpot Men.

 

I see it as a desire to appear as an 'Outraged Medical Intellectual'. As to what the outrage is about that may not matter much.

 

No, if the methodology is OK the studies will be right. They may not tell you what you want to know but they will be right on their own terms. You cannot force other people to use the diagnostic criteria you prefer. They are always an arbitrary choice based on personal opinion, even if the opinion of a gaggle of people (with another gaggle disagreeing).

 

The contrary side of my brain thinks it might be better to have a note saying it's outdated and unreliable than allowing Cochrane to save face further down the line by disappearing it altogether.

 

There are also a number of medical professionals who get, or know someone very well who has got, ME/CFS-like Long COVID (and so are inherently sympathetic to that) but who cannot shake their long-held, ingrained views of "ME activists".

Perhaps another way of solving the Cochrane debacle would be around the fact that their post-2019 withdrawal policy isn't actually appropriate at all for systematic reviews. They seem to have created a policy that aligns more with COPE guidelines & retraction policies at other journals, but what is needed with outdated, dubious or low-quality systematic reviews is more formal deprecation than retraction in the classical sense; I think HB alludes to this in her blog when she says that systematic reviews are generally considered outdated after 5 years. Perhaps Cochrane needs a deprecation policy separate from the withdrawal policy?

If there is one potential benefit that comes from all of this, it is that people with significant roles in influential organisations are becoming aware of the scope & magnitude of the psychobehaviouralists' behind-the-scenes campaigning and influence-peddling. It happened with the NICE guideline, now it is happening with Bastian/Cochrane. What gets you the Maddox prize once may seem unseemly now - the culture seems to be changing, yet their playbook hasn't.

 

my guess is reverse ferreting for her life. She blocked me on Twitter and then insulted me behind my back for daring to make a joke about her mates Sir Simon and Lady Clare

 

It's really impressive to see how close to the real intervention the controls match. Almost the same.

This right there is what 'the placebo' is. It's 'real' in the exact same sense as the psychobehavioral ideology claims our symptoms are. It is a real effect. It's just not the effect that is being described. It's simply shoddy methodology in a field where shoddy methodology has long been accepted, especially when it gives you a false positive, aka hopium for physicians.

 

From memory, though it's long in the past, I don't think Bastian agrees with that being a problem either. It would pretty much kill Cochrane's business model, would be massively embarrassing to the medical profession. Especially after decades of overt hostility where this 'controversy' has existed mainly on insisting that this pseudoscience may as well be the work of gods, indisputable and irrefutable.

MEAction can definitely do better. I'm sure they get it. Maybe they just mirror Bastian's argument.

 

Adding to this, though, the more general problem being that even in the broader population, the results are so mediocre that they rarely reach statistical significance, and it's only through spurious secondary data torture that positive claims are made.

Even in the general healthy population, exercise is mostly good at improving fitness, and where evaluations of fitness are used as proxy for health, it looks beneficial. But those benefits are massively overhyped because it fits perfectly in the dominant neoliberal politics that seek to cast all social problems as having purely individual solutions, aka "you do you, stop bothering us".