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

[Hilda Bastian]

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.

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.)

 

[Jonathan Edwards]

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.

 

[Caroline Struthers]

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

 

[Caroline Struthers]

Look who retweeted this

 

[MSEsperanza]

so I don't see why it's odd that the person is unknown in the activist community.

'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.

 

[Sean]

Exercise harms ME/CFS patients, and has left many more disabled than they were before. Aside from that it is not relevant, because it is not a treatment for ME/CFS. The literature, despite using case definitions that fail to capture core features of the illness (PEM) and the efforts of a small group of researchers, has not shown that exercise is particularly relevant to the management of ME/CFS. A causal relationship between any patient improvement and structured exercise programmes has not been established. I hope that one of the conclusions of all of this is that we need to stop framing this whole issue around exercise once and for all.

It is politically inconvenient that there are conditions that are made worse by exercise, and that the infrastructure of "rehab" and "structured" programmes is not suitable for some patients and conditions. But it is the truth.

If the research shows anything it is that ME does not respond to any activity, exercise, or rehabilitation in the normal restorative way, but in fact does the opposite, with patients becoming sicker. It is, indeed, the most distinctive and defining feature of the condition, and nobody knows why.

No amount of games with words and statistical thresholds, and then blaming the patient when that inevitably fails, will change that.

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.

If she is military, she may well be influenced by the views of Wessely, given his longstanding professional relationship with the military, (the work for which he was anointed Sir Simon, IIRC).

 

[Hutan]

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.

I'm not sure what you mean here. Are you suggesting that it's not preferable for consumer representatives to have a good understanding of research issues relevant to the illness they are representing?

I had an experience with a large funding process where there were two consumer reps with a good knowledge of ME/CFS and research issues, and two consumer reps with no clues at all. The consumer reps who weren't familiar with ME/CFS said things that were unhelpful - things like 'I googled [famous BPS researcher who was proposing some research] and he seems really respected', and had no idea about PEM, or the need for monitoring to last a long time to cover fluctuations or the potential problems with subjective outcomes. Their presence really slowed things down and it took a lot of effort from the informed patient reps to try to ensure that the subject experts were given good information.

Conversely, the interactions between the subject experts and the patient reps with knowledge was productive and enjoyable, with everyone learning things.

I came away from that thinking that consumer reps who don't have a really good understanding of the politics and the reality of the disease are worse than useless. Consumer reps who know the disease but don't know much about research are only marginally useful. The real gains come when you have reps who have a knowledge of their own illness and have spent time with others with the illness to understand the range of experiences AND also have a really good knowledge of the politics and the personalities and the literature and research methodology. Those knowledgeable consumer reps would probably be labelled 'activists' by some.

 

[petrichor]

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

 

[Jonathan Edwards]

Health service delivery is not in her recent past. (I'll ask for the bio to be expanded.)

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.

My brief, as I explain in the report, was explicitly to locate someone who was not from the activist community, so I don't see why it's odd that the person is unknown in the activist community.

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.

 

[Snow Leopard]

@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.

 

[Caroline Struthers]

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.

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

 

[Trish]

No problem - she was in the Navy in 2019. Her bio makes it clear that's past tense, though.
Yes, I know you don't know her views or her capabilities, and I realize you're not going to take my word for it. I wouldn't expect anything different.

I don't believe every patient who ever depended on a health care service is compromised by the views of the people who ran it.

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.

If a person is selected as the sole patient representative on a research review panel, albeit alongside a well known and respected carer as the second patient representative, then surely it is unsurprising that people who are allegedly being represented will ask questions.

I think it is beholden on the person/organisation who selected that individual from all the possible patient representatives in the world, especially in opaque circumstances like this where there was no open application process advertising the role, to make a clear and public statement about the selection process. Why was there no open application process, with qualifications and experience requirements listed and with closing date specified, and the qualifications that made the selected individual suitable to uphold the patient priority for detailed understanding of and scrutiny of the scientific validity of the whole review process and product?

So far all we have been told about the selection of one particular individual as part of the team writing the review is that she was selected because she is not an activist and has a diagnosis of ME.

I think if the patient involvement process is to be meaningful, clarity of process and open applications are the least we can expect.

I would like to know whether the patient and carer reps on the review writing group were selected by Hilda or by Cochrane who presumably selected the rest of the review authors. And how Kay's name came to be put forward, given that her 'qualification' for the role seems to be 'non activist'.

Kay, if you are reading this, I have no personal opinion of you, but I think it would help clear the air if you were to join us here and tell us about how you came to be involved, and anything you want to share about your interest in and views on the research you will be helping to review. I am sure, as a fellow sufferer you would be welcome here. Our concerns about your selection are about the selection process and criteria, and why others were not openly invited to apply, not about you personally.

 

[Jonathan Edwards]

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.

 

[Hilda Bastian]

@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.

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.)

 

[Sly Saint]

If she is military, she may well be influenced by the views of Wessely

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

Commander Kay Hallsworth Comes On Board
Posted on Monday 1 February 2021


We would like to extend a very warm welcome to Commander Kay Hallsworth to her new permanent role as Operations Manager. Kay has been volunteering with ARNO and the RNOC for the past 12 months during the COVID-19 crisis and so many of you will already have encountered her, both on and offline.
Commander Kay Hallsworth joined the QARNNS in 1992 as a Probationary Student Naval Nurse. In 2002 she commissioned as a Medical Services Officer and has worked across a wide variety of jobs in the UK and overseas. In 2020 she was named as the inaugural Naval Servicewoman of the Year. Compassionate and inclusive, 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.

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/

 

[Hilda Bastian]

If a person is selected as the sole patient representative on a research review panel, albeit alongside a well known and respected carer as the second patient representative, then surely it is unsurprising that people who are allegedly being represented will ask questions.

I think it is beholden on the person/organisation who selected that individual from all the possible patient representatives in the world, especially in opaque circumstances like this where there was no open application process advertising the role, to make a clear and public statement about the selection process. Why was there no open application process, with qualifications and experience requirements listed and with closing date specified, and the qualifications that made the selected individual suitable to uphold the patient priority for detailed understanding of and scrutiny of the scientific validity of the whole review process and product?

So far all we have been told about the selection of one particular individual as part of the team writing the review is that she was selected because she is not an activist and has a diagnosis of ME.

I think if the patient involvement process is to be meaningful, clarity of process and open applications are the least we can expect.

I would like to know whether the patient and carer reps on the review writing group were selected by Hilda or by Cochrane who presumably selected the rest of the review authors. And how Kay's name came to be put forward, given that her 'qualification' for the role seems to be 'non activist'.

Kay, if you are reading this, I have no personal opinion of you, but I think it would help clear the air if you were to join us here and tell us about how you came to be involved, and anything you want to share about your interest in and views on the research you will be helping to review. I am sure, as a fellow sufferer you would be welcome here. Our concerns about your selection are about the selection process and criteria, and why others were not openly invited to apply, not about you personally.

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.

 

[Adrian]

My brief, as I explain in the report, was explicitly to locate someone who was not from the activist community, so I don't see why it's odd that the person is unknown in the activist community.

I think that brief already shows a high degree of tone policing from Cochrane - the use of the word activist is implicitly trying to devalue and that is what has happened over many years. Why for example, not use the phrase expert patients. As soon as someone gets involved in a patient community and says something negative around psychosomatic research they are labelled as an 'activist' in a way to discredit. So it is interesting that Cochrane had this initial briefing and what it suggests around their underlying thinking about patients (and their views on patients having and expressing opinions about research).

 

[Trish]

I would also like to know Cochrane's definition of activist in this context. And why it is such an issue that they think they need to appoint a non activist to this crucial role.

As a long term sick person with caring responsibilities for another long term sick person, and as someone who was able to work part time for the first decade or so of my illness, I had no time or energy for getting involved with othe people with ME back when my ME was mild. So presumably that made me a non activist.

Does the fact that in the last few years I have been too sick to do much more socially than lie in bed communicating with other people with ME through patient forums, and in the process came to understand more fully the problems people with ME face, and decided to focus my limited energy on following the research and helping to run a patient forum now qualify me as an 'activist' and therefore disqualify me from representing patients in the role of scrutinizing research and helping to write a review?

What exactly is Cochrane's agenda here?

Edited spelling and grammar.

 

[Jonathan Edwards]

It's a tough situation and I wish it wasn't like this: I very much hope that this overall process is going to help move nudge towards a future when there is less mutual distrust/concern, so that relationships with ME/CFS community groups becomes the norm and not fraught. Unfortunately, not there yet.

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.

 

[Snow Leopard]

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 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?