Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

The harms paper Graham and others wrote tried to look at what recording they do in clinics to see if they would know if patents improved or got worse and they didn't have strong enough recording for clinics to know if people are harmed. Therefore I assume that by 'clinical experience' what they mean is the impression given by patients who don't want to upset therapists rather than any real analysis and objective measures showing patients are much better (even without control groups to say they would be anyway!).

 

I find that post very depressing. Are you saying that all we can expect is people who believe more in their own therapy than in scientific oversight of whether that therapy has any positive effect should have a part in the review process? Why? It's not a debating society where all views, however self serving and unscientific need to be heard and included in the review? Or that we have to accept yet another flawed review because the problem is really with Cochrane's failed systems and that has to be tackled first?

This paragraph makes no sense to me as a patient affected by this:
I am not saying that I think that a sensible conclusion will be reached but what actually gets written in this review is probably of less importance than trying to get into the public domain how much of a mess things are in, with the possibility of getting people to face up to how muddled their thinking is.

When and how do you realistically expect such enlightenment to dawn? And if the process of turning the ship around isn't started by a good review team showing the way by doing a scientifically literate review, how else will it happen?

Just to clarify, this is the first I have heard of this. Whatever Infinite Rubix is planning in the way of letters (or legal action?) is not a forum project, though of course any member is welcome to use the forum for ME advocacy communication. Perhaps, @InfiniteRubix, you could clarify what you are planning when you are ready. As I'm sure you know, open letters as part of ME advocacy can be posted here:
https://www.s4me.info/forums/open-letters-and-replies.100/

Thank you for reading our posts and doing your best to reply. I do understand that you may feel under constraints because you have been employed by Cochrane to carry out a specified role.

 

I don't think it's as clear cut as that. That study appears to have done CPET studies on a number of male patients over a period of time. The CPETs were part of a diagnostic process, which classed people as having ME/CFS or not. I think it's highly likely that anyone having a positive CPET test would be assessed as having PEM, and the fact that they are in the clinic means they have fatigue. So probably all of the people with a positive CPET got the label 'ME/CFS', and the people with a negative CPET got the label 'ICF'. The researchers did not actually do new CPETS, so we don't know how replicable CPETs are. (We need studies on that.)

It's very possible that some of the people showing a good response to exercise in the paired CPETs were just having a good period in their illness. Perhaps their trigger for PEM was higher than 8 minutes on a bicycle. Perhaps some of them were really well rested before the test and some of them weren't.

So, it's quite likely that people with a positive CPET in this clinic were classed as having ME/CFS. And so when charting the results of the people diagnosed with ME/CFS and people diagnosed as without ME/CFS, it is hardly surprising that the people with ME/CFS are found to have a positive CPET. It's circular.

edit: link to the discussion thread on this paper
Comparing Idiopathic Chronic Fatigue and ME/CFS in Males: Response to Two-Day CPET, 2021, van Campen and Visser


Trials with mixtures of people with fatigue meeting and not meeting criteria requiring PEM have not shown GET is helpful. Why could that be?

One possibility is that processes for assigning people to various criteria aren't very good. It might be hard to know if you have PEM, if no one describes it to you well, or if your life is not very regimented, so that it's hard to see patterns. The doctor asking the questions might just have been really useless. So some of the people who are recorded as not meeting more stringent criteria might actually get PEM, and might really have ME/CFS.

Another possibility is that graded exercise therapy isn't helpful in more fatiguing conditions than just ME/CFS.

Another possibility is related to the fact that the efficacy of GET relies on two assumptions - one is that exercise really does improve the health condition. The second is that telling someone that they need to exercise more actually makes them exercise more. So, even if, in theory, exercise could make some of the people with fatigue feel better, if telling them to exercise doesn't make them exercise more, then telling them to exercise is not a useful treatment.

Another possibility is that GET artificially reduces the amount of exercise a person is doing to start with - to establish the baseline before gradually increasing it. The end result might therefore be some people feeling a bit better initially because of less activity and then feeling as bad as ever as the level of activity goes back to what it was. But, overall, the amount of exercise the participants do doesn't change from trial start date, and so even the people who might benefit from exercise don't experience a benefit.

 

This. The Cochrane reviews are a major obstacle to getting better guidelines in place around the world. A finding that GET is useful for ME/CFS would be a tremendous set-back. I feel uncomfortable gambling on that, for the sake of Cochrane sorting out its internal issues. Cochrane seems to have been fine with Paul Garner departing from evidence-based medicine by telling the world that his personal experience proves ME/CFS is a mind over matter issue. As far as I am aware, he is still the Cochrane Coordinating Editor of the Infectious Diseases Group - so I don't have much confidence in Cochrane management's ability to ensure good science is done.

We don't know how the IAG is going to work, but I've seen no evidence yet of processes that will allow members of that IAG to exert useful influence. Even if they can, you have the likes of Peter Gladwell in that group - so we are still relying on the review group to be sensible about how they use IAG input.

If you look at the latest CDC evidence review (which Mary Dimmock contributed to), you will see that she, on her own, can't ensure sensible outcomes (no one could). So we really need the systematic reviewers to be smart and unbiased. I don't know anything about them.

Review team

• Consumers: Mary Dimmock (USA, carer, person with ME/CFS advocacy background), Kay Hallsworth (UK, person with ME/CFS);
• Clinicians: Todd Davenport (USA, physiotherapy), Julia Newton (UK, medical);
• Systematic reviewers with relevant methodological expertise: David Nunan (UK, experience with systematic reviews of exercise as an intervention); Argie-Angeliki Veroniki (Greece, statistician);
• Systematic reviewers from Cochrane response: Hanna Bergman (Israel), Nicholas Henschke (Germany, lead author).

 

Yes, I agree.
I'm not completely sure that the CPET studies are rock-solid yet (and I've done a CPET and shown the performance drop, so I'm biased towards them being evidence) - we could use more replication from some independent exercise physiology researchers. But it is does look like evidence worth considering.

And it's not even that Cochrane needs to recognise that exercise should not be endorsed - I mean we all do activity to a greater or lesser degree. And I think we all agree that activity is good - it gets stuff done and it helps keep our bodies working. It's the 'exercise therapy' that's the problem - the assumption that we aren't doing enough activity to start with, even if that is as much as many healthy people our age; and the assumption that increasing activity levels has any positive impact on the illness.

 

Where I am, there isn't really anything in the way of services for people with ME/CFS at all. Hardly anyone is going to actually be prescribed GET; it's more likely the doctor will just say 'perhaps you could try getting out and about a bit more?' and not advocate for help with household tasks or mobility aids in case that would be facilitating your laziness. There's no institutional investment at all, and I'm sure that applies to large chunks of the world.

But what the Cochrane Exercise Therapy Review has allowed, is the unquestioning adherence to the idea that ME/CFS is a behavioural issue. And that means that when you try to argue with politicians for research funds, they just consult their doctor friends, and they come back looking pitying at you and say that ME/CFS research is not a priority. I've had 'Cochrane says..' quoted at me. Or when you are trying to get care for some other health problem, the doctors see 'ME/CFS' in your notes and don't believe anything you say.

Cochrane's reviews have been absolutely fundamental in propping up the 'ME/CFS is a behavioural issue' idea and preventing progress.