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

I would argue that the most plausible explanation of this study is that people with asthma are terrible at rating their asthma in a blinded study environment.

Asthma is an objectively measureable phenomenon, so any perceived benefit is irrelevant if they don’t improve the underlying condition.

Furthermore, the sham inhaler was not blinded to the patients. There’s absolutely no reason for not blinding it.

I’m testing my own understanding:

The problem isn’t that they are using other criteria, the problem is that they are trying to generalize results from their wider criteria to the population in the narrower criteria.

Ideally, they should recognize that the results are worthless due to the methodological flaws. If they don’t do that, they should still recognize the very limitied generalizability of the findings.

I believe that both issues (methods and generalization) are highly relevant, and Cochrane needs to up their standards for both.

 

A lot of people simply don’t understand the concept of scientific methodology. They believe that an opinion has the same value as evidence.

This is something I frequently argue with my family about. If I say that a study they read about in the news is nonsense (95 % are BPS), they almost get angry at me for dismissing the opinions of «experts».

This is not unique for ME or LC, it happens for every topic. «You should listen to everyone» is a common phrase.

This is a serious issue when it comes to public health, and it’s something the MEAs have to address in general. This misconception is prevalent in the patient community as well.

Which further highlights the need to get Cochrane to do a proper review, because we simply need some leverage to discredit the studies and interventions amongst the patients and their carers. IMO, just pulling the review is worse than pulling it and writing a proper one. Writing a new bad one is the worst option.

 

That argument is incorrect. You can legitimately apply results from wider criteria to a population with narrower criteria. It is the opposite, true generalisation that is not legitimate.

If bones are good for dogs you can assume they are good for whippets, unless you have evidence otherwise. You cannot assume they are good for all mammals.

If a narrower population has a feature that suggests it does not follow the general pattern then it is sensible to invoke caution but you still need evidence that it matters. As Hutan says, inxremental exercise might actually be good for exercise-induced asthma. After all, the whole idea of de-sensitisation comes from asthma and allergy.

The trials that are available tell us nothing about any difference in efficacy of GET and CBT for those with exertion intolerance and those without. But the whole thing is irrelevant because none of the trials show any reliable evidence of efficacy for anybody.

It is a bit like saying 'Oh I don't know if these eggs are any good because they have been delivered in the wrong boxes when there aren't even any eggs there.

 

Absolutely it would. In clinical pharmacology we use different categorisations all the time. I have done studies on rheumatoid arthritis, inflammatory arthritis, seropositive rheumatoid arthritis, active rheumatoid arthritis, arthritis in general - you name it. Asthma is an outdated concept. These days you would be talking of reversible airflow obstruction, which, as Hutan says, you might want to qualify with allergen sensitivity, exercise induction or whatever. A bronchodilator like Ventolin is used for airflow obstruction even more widely on the basis that even partial reversibility might be helped.

Asthma and ME/CFS are not fixed things. They are useful categories amongst many other useful categories that can be wider or narrower.

If PACE had been properly designed and showed an objective benefit for GET it should be recommended unless there is evidence that a subgroup does not benefit. We cannot criticise the BPS people for muddled thinking if our own thinking is just as muddled.

This is not a valid methodological issue.

As indicated above, the whole issue is irrelevant because there are no eggs anyway.

 

I am doubtful that my Rapid Response will appear. There are none up and I suspect this indicates that none will be put up. The potato is too hot.

 

I don’t understand this.

If the narrow population (NP) is such that the entire population fits inside the wider population (WP), then it’s still possible that a study on the WP doesn’t include any patients from the NP.

If you study only men, you can’t say that the results also apply to women just because they are all human.

If you can’t prove that your selection also includes women, then you’ve only studied men. Claiming to have studied humans is incorrect and misleading.
(Edit: then you could potentially have only studied men)

By studying chronic fatigue patients and not properly testing for PEM (assuming it can even be done), you can’t claim that you’ve studied the entire CF group. You could have studied the non-PEM CF group only.

 

But that would mean that the 'wider' population was in fact the narrower population in that regard.

 

It may be worth reminding people that when I presented my thoughts about the PACE trial to the University College London Division of Medicine (cardiologists, endocrinologists, haematologists, clinical pharmacologists etc.) nearly ten years ago now the audience unanimously agreed that PACE was a non-starter methodologically because it was open label nd with subjective outcomes. This isn't a minor issue. It is the bedrock of trial design. In other branches of medicine we simply do not take any notice of trials like this.

 

The problem is not that it's outdated, though - this is the obscurantist reason that the editor-in-chief gave to not pull the review in the first place. It allowed her to avoid saying it was rubbish. Something that is merely 'outdated' is fine. My sofa is outdated but I'm still sitting on it.

An honest editor's note would give the real reason why the review is so bad that it needed to be withdrawn (open label, subjective measures) but that would involve admitting that they were wrong to publish it in the first place and that the rest of the BPS literature is a house of cards.

 

Maybe they just need a bit longer to think about it, given the heat of the potato.

 

Can you offer a guest editorial? I honestly can't understand how this situation prevails.

It's frankly weird how doctors are expected to be 'collegiate' in this situation and not criticise other doctors. What is the point of doctors who are loyal to each other rather than to patients?

 

Which means that the choice of criteria is relevant because of the possibility of studying a non-generalizable selection of the CF population.

The other methdological flaws are more than enough to disquslify the studies, but the criteria are still relevant.

 

It is taught in clinical pharmacology courses, if I remember rightly at the preclinical stage of basic sciences. When I was taught it we used Desmond Laurence's textbook (Desmond was at UCL). It is part of the basic explanation of why we do double-blind trials. Every medical student has heard of double blind trials and ought to have an understanding of why they are done. The let out is that if you have truly objective endpoints you may not need to double blind, but that is the exception.

 

I learned about it at VGS (upper secondary/high school). Might have been my statistics teacher that was very into methodology.

 

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