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

You referred to the “demonization of an entire community because of the behavior of a few” and “the stigma that flows from all being judged by the behavior of a minority”. I think it is reasonable to infer from those comments that you were implying that some people have behaved inappropriately and/or unethically. If you don’t want to say what behaviours you are referring to, please could you stop referring to them? I think it is clear that many of us find these unspecified references unhelpful at best.

It might also be helpful if you could explain why you are unwilling to give any details of any of the behaviours you have referenced.

As others have pointed out above, the history is important here. As you highlighted in one of your blogs (for which I was grateful), people with ME have been the victims of “unconscionable” orchestrated “collective ad hominem attacks” from some researchers, in which legitimate and necessary activities, including valid scientific criticism, has been deliberately conflated with harassment and worse. It is also important to remember that many of the targets of these smear campaigns have been members of this forum. Given this context, I think it is particularly important not to suggest or imply that any ME groups or “activists” are behaving in a way that is counterproductive without being specific about what those behaviours are.

A danger with internet discussions can be that people’s positions become more entrenched as disagreements escalate. I hope that will not be the case here. I have often had my opinions on subjects changed by the information and opinions that have read on this forum and I hope you may be similarly receptive. Thanks for reading and engaging with this thread.

 

I undertook to consult and consider alternative language to activist: I've done that, as well as some hunting around about the language people and groups use to describe themselves. Lots of activist/action and advocacy language. I've changed the language in the report to advocacy. Thank you!

 

I'm afraid this only worsens the issue of her biases towards physical activity/exercise being reflected in the updated review.

I understand better why her advisory roles in AfME and MERUK may have picked her given her advisory roles in AfME and MERUK. Unfortunately, there is a long history of issues with medical advisors to ME associations. For example, AfME had BPS proponents as advisors for many years, and they helped recruit participants for the PACE trial. However, I fully appreciate that you are not expected at all to know the long and arduous history of ME research and associations. As @Hutan offered, please do not hesitate to ask if you need more background on these issues.

Edited to add: some MD-researchers outside the UK and US who have recently published on muscular or physiological aspects of ME/CFS, who MOSS could consider: Dr Carmen Scheibenbogen, Prof Yves Jammes / Dr Frédérique Retornaz, Dr Katarina Lien.

 

That one got lost in QMUL databases and conveniently cannot be retrieved.

 

Yes, and wasn’t one of the reason’s given for why it couldn’t be retrieved because Peter White (who is currently publishing papers on CFS) had retired?

 

https://twitter.com/user/status/1399841680459591681

 

One of the things we have had problems with is that the oversight bodies for research all seem to have very narrow remits. I am too ill to go into details, this is just the overall outcomes but they have all been used by the BPS to claim that their research is valid and criticisms baseless. (An aside, but it can take someone with ME hours to write a post. Forums are not just places where people get together to reinforce their prejudices, here we are literally giving voice to the voiceless, often at great personal cost.)

Despite the fact Cochrane agreed all criticisms of a review were valid it could not be changed because the authors refused and there was no mechanism to deal with that. An ethics review basically stated that all documents had been filled in at the right time but again this was used against us.

I keeps happening; we get within spitting distance of officialdom but our problems with the research are so blatant that no one has considered it could possibly happen so there is no mechanism for redress.

 

ME papers are unlike others. The "research" that shows how good GET is needs very careful examination for things that are not usually encountered in a peer reviewed paper. The references do not always match the assertions in the paper. I stopped checking but now assume they are all dodgy if not to one of their friends.

One paper from a few years back said that all people with chronic fatigue and ME are much the same with a reference to a paper that said that it was vital that people with ME were subtyped.

Another said ME was not neurological as there were no problems shown in part of the brain which had been checked by MRI. This was true except the paper had found problems inn other areas that has been examined at the same time.

Then the main problem with the PACE trial, that you could be sick enough to enter the trial with a score of 65 (where 100 is good health) at the beginning of the trial but at the end of the trial they changed recovery to 60, was hidden in the error range.

A recent paper said in the abstract that 90% of patients were satisfied with the treatment and it was only scrutiny of the paper by forum members that made it clear that this 90% were people who had filled inn the questionnaire at the end of the course and did not include the large numbers who had dropped out.

These are not easy things to pick out and anyone checking the papers must do so with a sceptical eye. They are carefully written to sound plausible and give the impression that treatments are a success.

I was going to carry on but it is just more and more of the same.

Peer reviewers seem unable to find the flaws in the methodology of BPS trials and editors of journals unable to see how logic fails in them and how often they break the code of conduct the journals claim to follow.

We have good reason to want a robust proper review and to be sceptical that is what is going to happen. All too often there are rules but they can be broken with impunity if it is to do with ME.

Better people than me can tell you more about these things if you find it hard to believe; it is not a paranoid fantasy.

Oh, and remember at all times that the stunning success of the GET trials is being touted to the MS society, the Arthritis Society, longcovid people and others as a treatment for fatigue. Certain people have an awful lot to lose if the review gives a true report.

 

It looks to me as if the lead author for the new review will be a physiotherapist, Nicholas Henschke. That seems a bit crazy since the problems with the last review stem from having a physio as lead author. If you are a physio and you write a review of physio that says there is no evidence it works you will be blackballed from jobs and professional organisation officership pretty much for good. So quite apart from any problems with therapeutic zeal there is a huge competing interest problem here.

Yes, it is useful to have people with practical experience, but not if they can only come to one conclusion.

I know all about this because I did a Cochrane review with two podiatrists. The minor crime we committed was to recommend a treatment for heel pain that was not podiatric but medical. The senior podiatrist made a career in health care research. The junior one was vilified by his colleagues and felt very badly done by.

It looks to me as if the decision on this will have come from the MOSS review group - the video for which is all political sound bites and no substance.



I have not looked at this beyond the abstract but it does not look promising.

Exercise reduces pain and improves physical function for people awaiting hip replacement surgery

1. Nicholas Henschke1,
2. Joanna Diong2,

http://dx.doi.org/10.1136/bjsports-2013-092726

 

Great. HAve you already looked at the Vink Vink-Niese re-analysis? https://journals.sagepub.com/doi/pdf/10.1177/2055102918805187. I think I suggested at some point that they be invited to Cochranize their work. I may not have done, but would that be considered once you and the IAG had read and analysed it? Of course they may not be willing to do that, but it seems a very logical solution.

 

The RCTs and reviews that Henschke has co-authored, which focus on chronic pain, seem to acknowledge low to very low quality evidence, but not enough in that most of those still recommend interventions for which only such poor evidence is available. Unfortunately, this is precisely the case of the current Cochrane review of exercise therapy for CFS.

Efficacy and safety of pharmacological, physical, and psychological interventions for the management of chronic pain in children: a WHO systematic review and meta-analysis, Fisher et al., 2021

Association of Therapies With Reduced Pain and Improved Quality of Life in Patients With Fibromyalgia: A Systematic Review and Meta-analysis, Mascarenhas et al., 2021

Low back pain in children and adolescents: a systematic review and meta-analysis evaluating the effectiveness of conservative interventions, Michaleff et al., 2014

Effect of Primary Care-Based Education on Reassurance in Patients With Acute Low Back Pain: Systematic Review and Meta-analysis, Traeger et al., 2015

Interestingly, this last review is challenged by a RCT from the same team: Effect of Intensive Patient Education vs Placebo Patient Education on Outcomes in Patients With Acute Low Back Pain: A Randomized Clinical Trial, Traeger et al., 2019

(And a small study that relates to the ongoing discussion of clothes worn by psychotherapists on S4ME: What you wear does not affect the credibility of your treatment: A blinded randomized controlled study, Traeger et al., 2017.)

ETA: Henschke's work seems to show more sensitivity towards evidence quality than the previous authors team (Larun et al.), so hopefully he can acknowledge Todd Davenport and Mary Dimmock's explanations of the issues with the evidence base for exercise therapy in CFS.

 

It is an intriguing idea. But if you are testing whether or not an information package is valid then to assume it is 'education' and an alternative' sham education' begs a very big question. If the sham group had done better then presumably it would have been real education and the test sham.

I find it hard to believe that you can do this with a straight face and retain blinding. It looks as if the trial was 'positive' on secondary measures only - which does sound familiar.

 

This would have been the best case scenario, but that ship has sailed and it would frankly be unfair to the work already done, this is on an all-volunteer basis, unlike the never-ending flow of busywork funding and pompous self-awards that created this evidence base made entirely out of low-quality sophistry and statistical wizardry.

Frankly this project is as much about Cochrane as it is about the review itself. So far the organization has been unable to acknowledge they have been anything but perfect and beyond any criticism, leaving others to clean up their mess, never did any better than a politician's insincere "I'm sorry I got caught" apology and swiftly walked it back once the public threats came pouring out from the likes of Gerada. This remains one rare opportunity for the mutual admiration society approach that rules evidence-based medicine to be challenged from within. Maybe.

So much suffering would have been avoided if they had done the right thing, the obvious inevitable thing that will happen anyway.

 

The setting of expectations is arguably one of the most important things in research.

As a techie, I have spent an awful lot of what working life ME allowed me dealing with problems caused by previous companies and their engineers not managing client expectation.

If two engineers go to do the same job for different clients and complete it to the same acceptable standard, I guarantee the engineer who sets and manages the customer's expectations will be perceived as doing the better job. in the company I worked for my line manager even gathered data on it as they followed up with customer satisfaction questionnaires.

The expectations set between both arms will have a significant effect on how well those patients feel their treatment has worked for them.

The type of questionnaires we have repeatedly raised concerns about can further enhance that effect.