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

The IAG has a very influential role in the editorial process. I'll expand on that in the June report. We will be advising on all of that, and will also make recommendations to Cochrane about processes generally.

 

I don't expect agreement on that, of course.

 

Thanks!

I can't see why they would have met, but even supposing they had, and even supposing she knew the opinion and it was relevant to her then, she's not part of that infrastructure now.

Important points, thanks. But there are plenty who believe that other than a sprained wrist from a fall or something, exercise is always good for people.

 

I'm presuming that's the volunteer position to which she refers, and if there's a status change, she'll notify it. And as you say, it doesn't suggest any reason for her being beholden to the head of a healthcare service in the organization she no longer works for. Even when she was writing a public piece, as an employee, she did not espouse the treatments advocated by the people to whose influence you're implying she is susceptible.

No one suggested Kay (or Mary) to me.

I was fully aware, of course, that appointments would be contentious - different appointments unpopular in different quarters - so a lot of time was spent on each of these positions. There's a level of interest and concern that is, of course, completely understandable. But my view on drawing the kind of long bow that's being drawn here is in this post, for anyone who's interested in my opinion.

 

Long bows can be drawn in thin air, yes. That doesn't mean there's a there, there.

I'll expand on methods/processes down the line - the progress report isn't intended to be all there is on the early processes.

We have very different beliefs and expectations of consumer participation in research teams, and I'm not going to try to convince you to share my point of view: but I will be clear about why and how things were done.

For those who are interested in the background here, one of the common criticisms of this Cochrane review was that it failed to follow Cochrane policies on consumer involvement. You can read more about the Cochrane position on this here. (Disclosure: Decades ago, back in my Consumers' Health Forum of Australia days, I established the original framework and policies for consumer participation in the organization and Cochrane reviews, founding the Cochrane Consumer Network and being involved in it until 2003.)

 

Can you elaborate on this?

 

Here's how I summarized it in a 2019 blog post: "Exercise is something of a sacred cow to many – including in the evidence community. So there was a constituency that wasn’t going to be as critical of studies claiming advantages of exercise as they might be for other treatments." The belief in its inherent benefits and harmlessness runs so deep that studies of exercise often don't assess harms properly. (I wrote about this somewhere ages ago - I'll try and remember where, because then there'll be examples of what I mean.)

 

J Newton's co-author of that paper seems to be an other person - a Kate H., not Kay.

see https://pubmed.ncbi.nlm.nih.gov/21708823/

I agree the research / paper by Newton et al. you linked seems to be very badly done. Would be interesting to know what she (J Newton) thinks about it today.

(Edited several times to make that readable -- apologies, shouldn't post with PEM.)

 

That's Kate Hallsworth. Kay Hallsworth was a Naval Commander, and as her bio states, she was doing that* for 28 years, so no, she wasn't a researcher in Newcastle in 2011. She's not a physiotherapist.

Edit: * serving in the Navy.

 

Still only able to skim a bit and need a break.

But on refelection, want to leave here some preliminary thoughts:

I share the disappointment about the bad communication with S4ME about the IAG's setup process.

I think though we shouldn't (edit: publicly) speculate about persons appointed to the group. It's OK to ask questions but there seem to be some assumptions that to me look a bit unfair to post them here and with what I feel has a flavour of suspicion.

Skepticism is warranted for many reasons repeatedly mentioned. When it comes to the persons on the IAG though, I think it's good to ask in an open-minded manner, and with the idea in mind that they will also be open for a discussion with us.

That said, I remain very skeptical. I don't know enough yet to say how much I feel represented by the people in the group. Probably I don't feel represented. But I hope that, at least, sound arguments won't be rejected by the people that are in the group on our behalf, and where arguments are not understood or remain unclear, they will aks and engage in a discussion.

 

It would be reassuring to know if it was also possible that the review concluded with the statement that there is no evidence of benefits from exercise for pwME, but sufficient evidence for potential harms.

What keeps me skeptical is that 'consumer' involvement can easily be instrumentalized and isn't always in line with a robust assessment of teh quality of evidence.

PACE and some of Esther Crawley's trials are examples for that with regards to ME/CFS . Recent example unrelated to ME/CFS is the NICE guidance on chronic 'primary' pain.

Edited to remove a question about possible patient involvement in a CDC guidance on chronic pain. Too confused now to check and fix wrong link to forum post. Apologies.

 

Agree.

In this case I think it's better to check first how likely it is that

I wouldn't want similar associations posted about my person on a public forum if there actually aren't any associations.

It's OK to ask, and it's OK to be suspicous and it's very helpful to investigate. I agrree we have any reason to be suspicous. I just think it's better to be careful when we write about persons.

 

Last addition for today:
I think it's very important to look into potential COI and ask about them.

The UK defence forces are a large organization. There could be a COI if there are relevant affiliations with departments / persons doing rehabilitaion or reseaech relevant for ME and so-called MUS and Post Covid Snydromes. So need to be considered with that regard and thoroughly checked -- just like any other other institutional affiliation, no matter whether military or not.

-- just don't think it's fair to publicly suggest links of which we can't know whether they actually apply.

Edited for clarity, 3x, sorry.