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

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I'm wondering, what do people think about the new review being abandoned? I mean, apart from it being a sign of a massive amount of disrespect towards people with ME/CFS from Cochrane, and making the five years of effort from Hilda, the writing group and the IAG a colossal waste of time, are we upset that the new Cochrane review isn't proceeding?

I'm feeling quite ambivalent. No, I think it might even be a good thing. Nothing I'm seeing from anyone suggests to me that Cochrane or the people involved in the new review process, taken as a collective, are willing to identify the fundamental problem with the CFS exercise therapy studies. I have serious doubts that the review, even without active Cochrane interference, would have been what we think it should be.

And of course, given it would have been a Cochrane product, the editors and whatever forces that seem to govern their actions would have still had control. Things might have still fallen apart, just another year down the track, with the time and energy of people with ME/CFS having continued to be sucked into the black hole of Cochrane.

It seems to me that Cochrane has acted so egregiously badly, the warnings we gave Hilda when she was engaging on the forum have been proven to be well-founded, the relabelling of the 2019 review as 2024 is so preposterous, that perhaps their actions have actually helped us shine a light on the problems?

So, perhaps we don't want to beg Cochrane to restart the process? Perhaps we should sigh with relief that that episode is over and we can get on with getting rid of the Larun et al review without the distraction of a new review process? Perhaps it would be best if a good independent team of people wrote a review of exercise therapy for ME/CFS? Or perhaps a new review isn't needed at all.

I don't know. What are you thinking? What are the members of the IAG and writing group thinking?

 

I'm coming round to that view too. Though at the time it was set up in October 2019, we were a year away from even seeing the NICE draft review, and two years from its publication in October 2021. If Cochrane had stuck to their 2 year timetable, their new review would have come out shortly after the NICE review, and could even have been influenced by it.
Now 3 years further down the track, it's far better if Cochrane withdraw the Larun review and refer people to NICE.

 

Yes, that's what I'm thinking too. The 2024 label together with the editorial note asserting that there is no new evidence is the problem that we should concentrate our efforts on. It's as if Cochrane are saying 'Magenta? Never heard of it'.

Along with progressing the complaint that Cochrane has no working quality control/complaints process.

 

Magenta was on children. The Larun review explicitly says it's only about adults. Even so, I think Magenta is a valuable contribution on harms as well as ineffectiveness, and should be included.

 

That's wonderful. It's a short straightforward article quoting the BMJ article by Jacqui Wise, with some clear comments from Charles Shepherd.

Thanks very much to the UK MEA.

 

It goes back much further than PACE. BPS supporters have been in key positions at Cochrane from the start, as I understand it. And they determined who got to write reviews, which ones they accepted and how studies are analysed. For example, none of them seem to understand that subjective outcomes in unblinded trials are unreliable and should not be used as the primary outcome measure. That should have made the 2002 protocol unacceptable along with all the versions of the review based on it.

 

Over 14,700 signatures on the petition.

 

There are different sorts of asthma that you ideally might want to stratify out and treat differently, although they have often been lumped together in one study e.g. asthma caused by an allergy, asthma caused by exercise, and, for all I know, it may be hard to differentiate these, maybe they overlap, maybe we now know other sorts of asthma, maybe we will discover that there other sorts of asthma that we don't know now. Even with exercise-induced asthma, it could be a reasonable study question to ask - does careful exposure to exercise help?

So, it could be reasonable to do a study combining different sorts of asthmatics and see if exercise helps. Maybe it helps nobody, and then you know something. Maybe it only helps some, and so you have questions for another study. The biggest problem is if you use the faulty study design that gives you a positive result, regardless of treatment.

Your choice of the asthma example is interesting because there is that fantastic study where they told people that they were being given an effective asthma treatment and gave some people a placebo. The people with the treatment and the placebo both reported that their asthma was considerably better. But only the people with the treatment had improved respiratory function. That is the demonstration of the problem we are concerned about. I'll see if I can find a link.

If you do a mixed asthma study (allergic asthma, exercise-induced asthma, maybe some people have both) with only subjective outcomes and no placebo, everyone might seem better. Was it because they hoped they were better, or were they really better? You don't know. You have not learned anything.

*****
Honestly, how good are the ME/CFS diagnoses? Even experienced clinicians are struggling. We've seen that in the rate of misdiagnoses identified. Even if you think you have a "pure" ME/CFS cohort it will be mixed.

Take a group of people diagnosed under the Fukuda criteria, use a good objective outcome such as tracking their activity levels over 6 months, have two treatments that the participants think are equally likely to work, and you might be able to say that the treatment truly helped some people. Or it didn't. You have learned something. Until we have a biomarker, if you truly find exercise does help some people with chronic fatigue, it could be a reasonable thing to say 'look, we know that exercise truly does help some people with chronic fatigue, but our data also shows that it truly can set some people back'. So, we need to investigate the people who improved versus the ones who didn't because we aren't very good at knowing in advance. And, we need to be very alert to whether you might have PEM if you do decide to exercise.

Alternatively, if you find that exercise truly helps no one with Fukuda chronic fatigue, things are simple, don't recommend it to anyone.

Or, take a group of people carefully diagnosed under CCC or IOM. Give them a programme of a treatment you say is great, even exercise, then ask them how they feel. Some will drop out, but you don't count them. The ones who make it to the end of the six weekly sessions and the celebratory cake will report on your subjective survey, 'I feel better'. And that goes into a review with other similar studies, and there you have it, scientifically proven!, Cochrane gold-standard endorsed! Impossible to question. Exercise helps people with CCC criteria ME/CFS.