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

Thanks - I'll check when they last updated the bios/declarations of the authors to make sure. (We updated ours for the IAG in the last month or so.) (Still not remotely agreeing this this attempt to somehow saddle Kay Hallsworth with suspicion by theoretical association with the opinions of someone in the Naval healthcare services is reasonable in any way at all.)

 

I am confused by all this stuff about Kay Hallsworth. I must admit it seemed odd for someone who was very grateful to rehab services for recovering to suddenly pop up unknown in the ME world. I also note that she has been involved in medical services not just as a patient but also very much as a service deliverer:

Kay is a highly experienced specialist with a history of delivering medical operational capabilities in the Defence Medical Services. We wish her every success in her new role.

So it seems likely that she has a very real competing interest in the way that those providing therapist-delivered services do. Much of the medical service delivery in the forces centres on rehabilitation and exercise - hence Headley Court etc.

 

Look who retweeted this
https://twitter.com/user/status/995680588765040641

 

'Activist community" is an ascription that doesn't match how I perceive S4ME and my forum membership.

And it feels strange to me to oppose an alleged "activist community" to someone who also seems to be an 'activist', maybe just belongs to another network of activitsts.

 

Having looked up Kay, I can see why you might choose her - she seems like a pleasant and competent person, seems to want the best for people with ME/CFS, has a medical background, and doesn't have any particularly outspoken view one way or another on relevant issues. Having looked at her twitter a bit, she does talk about important pacing is, and talks about her negative experience of being told how ME is in her head, and how she just needs to exercise more.

So I can see why she'd be a good fit, and it doesn't seem likely at all that she's been chosen specifically to support GET or anything like that. But that doesn't really change that people are confused about why she's been appointed, especially when the only bit of information they can really find about her is her writing a blog (which is 2 years old) which does seem to pretty much praise GET, the thing being reviewed.

So I think she could be a good representative, but I feel like the process and reasoning behind how and why she was chosen could be communicated better

 

I don't think that addresses my query, Hilda. She obviously had a major commitment to it if she was a 'specialist' in that area.

Well, that seems to indicate that whoever delivered the brief believed that there is an 'activist community' beyond people interested in good ME science. That is very telling but sadly unsurprising. Maybe those who issue briefs at Cochrane should do a little looking in the mirror when it comes to 'activism' - was Cochrane an 'activist' project I wonder. I bet you all thought it was.

 

@Hilda Bastian
Why is there no one in the group who doesn't have an impressive CV in lieu of the fact that they have been too ill to work for most of their life?

By only including those who have not experienced the illness for themselves, or were only mildly affected and thus were still able to pursue a career, is this not a clear bias?

Likewise, why is there not a diversity of views from around the world, particularly non-English speaking countries? I know there is very strong advocacy from Japan for example.

 

Cochrane has been told to be "iconoclastic" by important funder NIHR - not sure it has achieved that in any shape or form.

 

While we are about it it might be good to make sure Kay Hallsworth isn't Kate Hallsworth's auntie. Outside Yorkshire it is not a particularly common name.

The ME community has been accused of mounting an organised campaign but when it comes to cronyism and back scratching behind the scenes it is the GET/CBT community that has been breathtaking in its organisation.

 

I'm going to pass this message on as some were so concerned that they don't have an impressive CV because of being too ill to work: it supports my contention that they are indeed impressive.

I agree diversity is lacking, and it's one of the issues on the list to consider for the final position. (There is only one person on the IAG at the moment from a non-English speaking country and one person of color.)

 

I would be very surprised if she didn't have any connection to Wessely

https://www.arno.org.uk/commander-kay-hallsworth-joins-arno-rnoc/

eta: I think this might be posted somewhere on the forum
Personal Disability Stories: 10 – Kay’s story
https://civilservice.blog.gov.uk/2019/05/03/personal-disability-stories-10-kays-story/

 

Cut and paste from the May progress report, for those who might not have read it:

The new author team was decided by MOSS and PaPaS, in consultation with the Cochrane project manager and me. The IAG was not yet established at that time. We agreed on this composition for an author team of eight:

• Two consumers;
• Two clinicians with experience of clinical care with people with ME/CFS – one medical, one physiotherapy;
• Two systematic reviewers with relevant methodological expertise – including a statistician; and
• Two systematic reviewers from the Cochrane Response team, including the lead author.

.....

As mentioned above, after Cochrane posted in March 2020 that additional new authors were being considered for this review, there were expressions of interest. We are grateful to all of them for their interest, and all were considered as potential authors. In addition, the project manager identified a shortlist of candidates for clinician positions via a search of recent relevant publications and other scientific and community involvement.

I nominated several candidates for the consumer author positions, with some consultation, again considering expressions of interest, plus searches of social media and community activity, and consumer representatives in committees addressing ME/CFS issues in scientific organisations. I also nominated candidates for the authors with specific expertise, after reviewing expressions of interest and seeking some recommendations.

To make that clearer, I nominated candidates for half the positions, Cochrane nominated candidates for the other half.

 

But surely, Hilda, the only way to deal with this is to be honest about the reality. As you know I have absolutely no competing interests here. I write papers on neurophysics and go birdwatching. I am intrigued by a situation with on one hand a group of patients making an intelligent critique of studies that fall way below anything even a medical student should think any good and on the other a group of dog-in-the-manger health care workers with vested interests in selling unproven and almost certainly (from PACE) useless therapies. If someone talks of ME activism they should be told to grow up. If the Cochrane hierarchy has not got beyond that it remains in tatters.

The problem is not one of mutual distrust. The problem is that an inappropriate group of people have sold themselves as carers for people with ME and they should just accept that they have nothing to offer, at least on present evidence. They shouldn't even be there.

The situation is anomalous because roles such as physiotherapist, rehabilitationist, liaison psychiatrist etc are all predicated on providing a particular modality of care - in this case inappropriate. For other roles like cardiologist, epidemiologist or nurse, the role is not tied to any specific care modality. Vested interest is uniquely problematic in the 'rehabilitation' context.

I actually think that the list of names to be involved is pretty good. But I can't help thinking that the only sensible answer to the problem of the useless exercise review was to admit that there is no evidence worth reviewing because none of the trials are adequately controlled and leave it at that.

 

I don't understand what you mean by this?

Even if the remaining position is filled with people who have been too ill to work (or hold prominent volunteer positions in various organisations!) since their childhood (such as myself), this is still not much representation.

One additional question: is the IAG considering any late applicants?