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.
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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.
To the contrary, if you told us something about her views and her knowledge e.g. what she thinks about the CFQ and what her thoughts are about subjective outcomes of recovery in unblinded trials I would give what you say a lot of weight. I believe you to be an honest person who would not knowingly mislead. It is the absence of information that is the problem, coupled with a background that makes an association with people who are defending careers built on the promotion of GET highly likely.
. Not every patient has been employed as part of the medical infrastructure of the powerful organisation that ran the health care service that they speak glowingly of.
I think it's important not to mix 'attitudes to exercise' with 'attitudes to exercise as a successful treatment of ME/CFS'. To do so risks painting people with ME/CFS as being fearful of exercise in general, of somehow being 'against exercise' in general. Many of us here were keen on exercise before becoming ill, and many of us automatically tried to exercise our way out of our illness. Some of us still enjoy exercise, allocating scarce energy to that. I'm sure all of us recognise the importance of keeping as active as we can to maintain our bodies in the best condition we can.
And I'm sure that even the most ardent exercise fan understands that exercise can't fix every medical problem.
Therefore, the opinions that people hold about exercise in general are probably pretty similar. It's not beliefs about exercise that have been the problem with GET. It's beliefs about ME/CFS and people with ME/CFS, and beliefs that subjective outcomes in unblinded trials reliably tell you about recovery or improvement that have been the problem. And that is why who is on the writing panel matters.
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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 see that Kay's twitter name says 'Operations Manager, ARNORNOC (Association of Royal Navy Officers Royal Navy Officers' Charity). Which is obviously nothing to be ashamed of, I'm not suggesting otherwise. And her tweets suggest that the navy is still a very big part of her life. So, I don't think her association with the Navy is 'past tense' at all.
Kay's previous occupation in the defence force medical infrastructure and her current occupation would be largely irrelevant here, except that a leader of the UK defence forces rehabilitation services has just co-authored the recent paper saying that GET is good. And Kay's appointment to the writing team of the Cochrane review does not come, as far as I know, on the back of a track record of analysing exercise trials - she does not seem an obvious choice for the role. @Hilda Bastian, who suggested Kay to you?
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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 only be easily drawn where there is a space. And the information I'd like to fill that space is Kay's qualifications to be writing a review of exercise as a treatment for ME/CFS as a patient representative. I think that's reasonable. Perhaps she is eminently qualified, but all I have to go on so far is that one 2019 article.
How did you become aware of Kay's 'history of interest in research on ME/CFS' prior to getting in contact with her? What material is there online?
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.)
Hoopoe
Senior Member (Voting Rights)
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.)
Thank you, that will be good. But I'm not actually asking about processes here.
You say that no one recommended Kay to you. And you say that the patient reps on the writing team needed to have a history of interest in research in ME/CFS. Therefore, I assume you found out about that history by googling, by finding some materials online. So, I was just asking where to find those materials. The 2019 article doesn't talk about an interest in ME/CFS Research.
I have now found this paper:
Physical activity intensity but not sedentary activity is reduced in chronic fatigue syndrome and is associated with autonomic regulation
Sadly, the authors include both Julia Newton and a K Hallsworth. Perhaps this is what convinced you that Kay would be a suitable person to co-author the Cochrane exercise review Hilda?
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MSEsperanza
Senior Member (Voting Rights)
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.)
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The Newton activity levels paper just has the initial of the person, and the paper you have linked MSEspe is a different paper. So I don't yet know for sure, but I agree that it would make more sense for the co-author of the Newton paper to be a Kate Hallsworth - a physiotherapist.
But that leaves us back at the issue of 'what evidence do we have that Kay Hallsworth has a history of interest in ME/CFS Research?
It wasn't obvious in my last post, but I've created a thread for the Newton activity levels paper here.
But that leaves us back at the issue of 'what evidence do we have that Kay Hallsworth has a history of interest in ME/CFS Research?
It wasn't obvious in my last post, but I've created a thread for the Newton activity levels paper here.
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.
MSEsperanza
Senior Member (Voting Rights)
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.
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.
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I think it's fine to ask for ME/CFS-related information about patient representatives on a review that will affect the management of patients around the world. If the representatives are not widely known and it's not yet obvious why they are qualified to do the job, I think it's reasonable to ask for that information. A lack of information does breed suspicion, especially when we consider Wessely's relationship with defence forces, and the defence force funding of a number of poor studies that we have reviewed.
Hilda has said that she became aware of Kay on her own - so presumably there is some information about Kay's qualifications in the public domain that we just haven't seen yet. I'm not asking for information unrelated to Kay's ability to do the job.
I agree it was unfortunate that the Newton paper didn't give first names so we couldn't be sure which K. Hallsworth was involved, but it was still interesting to read that paper.
MSEsperanza
Senior Member (Voting Rights)
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.
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.
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https://www.arno.org.uk/commander-kay-hallsworth-joins-arno-rnoc/. Feb 2021. Just for info, a permanent position with the Association of Royal Navy Officers. Not that that is a problem, just that there is a very clear ongoing link to the UK defence forces.
MSEsperanza
Senior Member (Voting Rights)
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.
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MSEsperanza
Senior Member (Voting Rights)
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.
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.
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