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

I find that an odd statement @petrichor. Everyone has ideologies, and some are more useful than others. Some are worth holding onto and some are changed by what we learn. An ideology that 'sound scientific enquiry helps to understand if treatments work' is a useful ideology for this review. An ideology that 'we know GET works because we use it in our clinics and people get better and there's nothing wrong with the trials that have been done and nothing will make me re-evaluate my beliefs' is not so useful.

Have you not seen the public statements made by Julia Newton? Also, presumably, being the Associate Medical Director of the Newcastle- upon-Tyne Hospitals NHS Foundation Trust and having a deep and long-standing interest in CFS, she either wrote or signed off on the Trust's comments on NICE ME/CFS Guideline draft (from page 422 in Part 1 of the comments). The Trust's comments seem to me rather ideological in an unhelpful way when it comes to the task of evaluating evidence in a careful and unbiased way.

Here the Trust is talking about people with severe ME/CFS, where apparently their problems are their anger, their involvement in patient groups, their misguided belief that they can't get better and their voluntary reduction in activity levels:

Here's a little of the criticism of expert testimonies and particularly that of @Jonathan Edwards, revealing an ideology that non-pharmacological interventions are somehow special and not amenable to being studied in trials that reach normal scientific standards.

Here there seems to be an ideology of clinicians knowing best what goals people with ME/CFS should have, and ignoring the substantial uncertainty there is about illness trajectory. The Trust seems to have the ideology that they can be objective about how much fatigue and disability can be reduced for a particular patient. Further, they seem to have the ideology that identifying psychological factors that are maintaining the condition will lead to recovery:

Here the Trust seems to have the ideology that ME groups hold an unrealistically pessimistic view of the illness and that informed ME/CFS patients are very angry people. They seem to have the ideology that these people being 'very angry' about a particular issue means that they are both wrong and are just generally very angry people. That ideology is surely not conducive to understanding what the 'very angry' people are actually complaining about.

Here the Trust makes clear that their treatment approaches are based on the evidence that NICE found was useless. Clearly, there is an enormous incentive for the Trust to overturn the findings of NICE. Such a conflict of interest makes for strongly held ideologies.

Here the Trust's comment suggests that people will be advised to push through their symptoms. It also, in its reference to 'the CBT model of CFS/ME' seems to suggest that 'catastrophic thoughts about harming oneself' is a feature of the illness. And again, it reveals a strongly held ideology that patient groups don't understand ME/CFS.

I find it rather worrying that you would count Julia Newton as 'one of the best possible people who could have been chosen for this'. Perhaps you can explain why I am wrong to be concerned?

 

Ah, ok, I just assumed based on your post (copied below) where you said that you have learned more about the people involved in the process as time has gone on. There hasn't been any public news about the process that I'm aware of for quite some time, not since we last talked about the people involved.

I think we can agree that some at least hold ideologies that are unhelpful for a considered evaluation of the evidence. I'm interested to know what you have learned recently that makes you feel that some are better than you expected?

 

After Montgomery's letter to the committee, I sent the attached response to him. He passed it on to the HRA who replied as follows:

I have copied the letter (attached) to a few people but nothing came of it. Misleading parliament is a very serious matter. I would note in particular in this regard points 9 and 13.

 

Perhaps Cochrane felt pressured to include some kind of pro-GET clinician. Perhaps they actively sought one out. But the one they chose not only has a career tied to delivering GET in a clinical setting, she also has a long career in ME/CFS research, making her conflicts of interest particularly deep and unshakeable. She has much more at stake than the average pro-GET clinician.

I too googled David Nunan and thought he might be ok. But, have you seen this thread and the company he has kept? Hopefully despite that, he will be ok.

 

We can give a strong message that if GRADE finds (or allows some to find) that what are really poor quality trials (with measurements that are highly subject to bias and a lack of control for different expectiations) then it does not mean that the trials provide moderate evidence but that GRADE is not fit for purpose. By some of the GRADE authors sticking their heads above the sand and saying if correctly applied then everything would be ok with these trials they are opening their work up for careful examination and criticism - something that should have been done as it was developed.

 

Yes. Pointless from our point of view. I am sure there are some who see the Cochrane review as an opportunity to fight back against the NICE findings and make everything as it was. Which is why the people involved matter.

Some information I have seen recently about Peter Gladwell (who is on the IAG) has added, rather than reduced, concern. Gladwell's article about the use of TENS for ME/CFS is discussed here. His article, which aimed to inform doctors, is the opposite of evidenced-based medicine. And we are relying on him to help hold the writing group to high scientific standards.

Yes, some of the projects he worked on look really good, indicating a good understanding of evidence evaluation. But he worked on some of those projects with some of the people who wrote the very flawed Cochrane Exercise Review that this new process aims to replace. So:
1. producing material promoting good evidence evaluation is clearly not a guarantee of actually doing good evidence evaluation, and
2. we don't know what influence Nunan's past and present Cochrane colleagues (some of whom have reputations tied to the previous exercise review) might have on him.

I'm trying to think of things we can do that actually make a difference to the review. There's probably not much now. But, at least we can make sure that people with ME/CFS are aware of the unfounded prejudice, conflicts of interest and lack of knowledge that a substantial number of the people who will be determining the content of the new exercise review bring to the task.

 

The HRA isn't an audit body in that it doesn't actually do checks. They expect certain documentation to be sent and check it ticks their boxes. An auditor would go in and demand access to all the information and select randomly from that to look for evidence that what is being claimed is actually happening. I.e. the processes that the trial PIs have signed up to are being followed (as well as looking at whether those processes meet the requirements. Its a much more detailed look by people who are used to checking evidence that things are correctly run and looking for violations (or potential issues). Auditors tend to like to identify problems.

This seams really different from an ethics board or the HRA who seem to just look at the documents supplied and say they are ok. They would have no knowledge if the documents were a made up public view and something entirely different was happening behind the scenes. They also don't seem to have much expertise in that they let bad practices through without having an overall view on risks.

 

Gee, I can't imagine why that would be. Real head scratcher, that one.

Besides, I'd like to see the hard evidence for these claims and adverse interpretations.

I look forward to this novel approach from the NHS.