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

I think @Hilda Bastian's desire to have a patient who isn't an "activist" (although the patient selected does seem to have a professional interest in rehab, which isn't seen as a conflict) will likely mean she ends up with voices who represent certain professional vested interests instead, and signals a capitulation to those vested interests who have caused problems throughout the history of ME.

A better approach would be to recognise that everyone is going to have an opinion on this, that those opinions may indeed be very polarised, and so instead seek a genuine balance of opinions as NICE did. Otherwise, you'll just end up with patients being gaslighted and harmed again.

It's also worth bearing in mind that the very idea that membership in a patient group is "activism", "militancy" and "bias" is inherently ableist. If advocating for ourselves is considered verboten by Cochrane and the IAG, that is institutionalising our disempowerment and a Victorian "doctor knows best" attitude.
 
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adambeyoncelowe said:
It's also worth bearing in mind that the very idea that membership in a patient group is "activism", "militancy" and "bias" is inherently ableist. If advocating for ourselves is considered verboten by Cochrane and the IAG, that is institutionalising our disempowerment and a Victorian "doctor knows best" attitude.
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This!
Also a patient who is connected to other patients can give a wider perspective than simply their own.
 
It should be noted that Kay Hallsworth now has as her pinned tweet a tweet celebrating the new NICE guideline and the derecommendation of Graded Exercise Therapy. In addition to evidence I've mentioned previously in this thread that she does not seem to currently have a pro BPS view of ME/CFS.

We have fairly direct evidence of her current views and quite indirect and tenuous evidence that she has strong links to or is under influence of BPS type people. I think it's likely she was chosen on the basis of that pro-rehabilitation blog she wrote, but it doesn't seem to be reflective of her current views.
 
Hutan said:
Just as a reminder, @Hilda Bastian told us that she found Kay Hallsworth, the only ME/CFS patient in the review writing team, through an internet search. Kay's primary qualifications to be writing a review of exercise therapy appeared to be that she has ME/CFS and has not been 'an activist'.
(Lest you be thinking J. Etherington of Pure Sports Medicine, surely that's not the same person as Colonel Etherington CBE Director of Defence Rehabilitation?...
https://puresportsmed.com/team/dr-john-etherington-cbe)
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I share the concerns about what is viewed as qualification to be in the writing team.

Thank you also for highlighting the co-authorship of PACE investigator Peter White and Colonel John Etherington ina recent paper.

I still think we should be very cautious in drawing conclusion about potential links between Kay Hallsworth and proponents of the cognitive-behavioral approach to ME.

"Colonel John Etherington is the Director of Defence Rehabilitation and a Consultant in Rheumatology and Rehabilitation at the Defence Medical Rehabilitation Centre, Headley Court in Epsom, Surrey."

From that link: https://www.gresham.ac.uk/professors-and-speakers/colonel-john-etherington-obe/

I'm confused.

Is that his current or his past position?

From Kay Hallsworth's Blog: (3 May 2019) :

"Thankfully, my fantastic GP at HMS Excellent, and the team at DMRC (Defence Medical Rehabilitation Centre) Stanford Hall"

See also: https://www.s4me.info/threads/the-s...n-2020-barker-davies-et-al.15403/#post-396566

No 'John Etherington' among the authors.

Also, have I got it right that Kay Hallsworth stressed that she mostly has mild ME and in addition was in a privileged position to be able to pace effectively most of the time:?

From Kay Hallsworth's Blog (3 May 2019) :

"I have had two bad relapses since my first diagnosis, both brought about by situations that removed my control over my pacing. I am currently on a phased return to work after the second relapse."

She says her latest relapse was due to a separate medical condition. So that could be understood that she didn't get "medication, treatment and a rehabilitation programme" primarily for ME but for the condition that caused the relapse?

edit: cross-posted with @petrichor
 
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Headley Court was sold and due to be converted to living accommodation and a newly built place, nearer the centre of the country 'Stanford Hall' has bbecome the defence rehab facility.
Headley Court was set up as "Mary Seacole Hospital", like other Nightingale Hospitals. It has now changed its name back to Headley Court, but is being used, presumably only partially, for Covid rehab.
(We live quite near and have seen the road signs change.)

"The new Defence Medical Rehabilitation Centre, known as ‘DMRC Stanford Hall’, started treating patient in October 2018, with the transition of staff from the previous Defence rehab facility, Headley Court in Surrey, having occurred in the previous two months. Headley Court has now closed."
https://www.thednrc.org.uk/what-are-we-doing/the-defence-facility-is-up-and-running.aspx
 
rvallee said:
Underselling it. It's amazing. Thank you, Caroline! Love to use Garner's words trashing Cochrane against him. Not so much as a gotcha but to get Cochrane to at least acknowledge his unprofessional behavior and how it reflects poorly on them.
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And to put the frighteners on NICE - NICE must be seriously concerned that they have a leading figure in Cochrane/GRADE going around making statements like this.

I really encourage Paul Garner to keep going --- anything linking to the Lightning process is particularly helpful! If Science 4 ME had an award for the most influential individual then, apologies to all here, I think there's a case for Paul Garner.

The letter is indeed amazing - I wouldn't like to be the person(s) in NICE reviewing this/flagging up the issues.

Well done and thanks @Caroline Struthers
 
Given the (shocking yet unsurprising) revelations of blatant attempts to corrupt the process at NICE, I think it necessary for Cochrane to address how they will prevent this, with the assumption that no response means that it is happening and they are OK with it, given what we know of how Cochrane has operated with us so far. It's not likely, it's guaranteed to have been happening alongside the attempts to corrupt NICE. And hearing nothing pretty much means the worst, that Cochrane is enabling it.

Not the IAG, Cochrane itself. Because it is Cochrane that would put pressure on this project, and as we have seen how extensive the machinations were, independence means nothing here, there is just too much at stake, too much money and political pressure, too many self-serving egomaniacs gravitate towards psychosomatic ideology.

Precisely: how will Cochrane prevent this from happening to their own process, given the full expectation that if it can happen with NICE, it's far more likely to happen at Cochrane since their process is far more secretive and open to manipulation? Not words of reassurance, we need full disclosure and clear efforts at countering it. Otherwise I simply cannot trust anything they put out, including from the IAG. The stakes have risen significantly and this needs to be dealt with ASAP and forcefully.

I will not be holding my breath on this...
 
Ash said:
“With medication, treatment and a rehabilitation programme, I am now looking at a full-time return to work in the summer.” I expect we can imagine the rehabilitation program. But what medication and treatment could this be that raised one up and back into full time work?
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It's my understanding that the planned return to full-time work in 2019 did not eventuate. She retired from the Navy in 2021 on medical discharge.
https://community.cochrane.org/orga...high-profile-reviews-pilot/author-team#KayBio
Kay was in the Royal Navy for 28 years; from 1992 to 2002 Kay was a nurse with specialist training in cardiac care. She then took on a less physically demanding role in the Royal Navy as a medical planner. Kay is now Operations Manager with the Association of Royal Navy Officers (ARNO), working from home.
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https://www.gosportconservatives.org/people/kay-hallsworth
In 1996 Kay was diagnosed with Myalgic Encephalomyelitis (ME), originally only mildly limited by this she is now disabled and works mainly from home in Gosport, she can often be seen whizzing around on her white mobility scooter.
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I found an audio interview of Kay Hallsworth from mid 2021 here:
https://player.fm/series/lockdown-2...ns-manager-association-of-royal-navy-officers
It's 48 minutes, so a long listen. There's quite a change from the 2019 article.
“ …I think if the homeworking situation that we have now… if I had been allowed a bit more flexibility within the roles that I was (doing) at the time, to be able to work like this, I probably wouldn't have left. I'd probably still be serving.”
She also is very clear about the need for more research.

So, I don't know. It seems that she has experienced the BPS rehabilitation at its best, and, despite that, her health became worse. But Kay confidently asserts that the illness is an autoimmune condition 'like MS', and that still worries me. I mean, perhaps ME/CFS is an autoimmune condition, I wonder that myself sometimes, but I would not state it with certainty. We saw it in earlier statements where she confidently asserted things that there is no evidence for. Maybe now, she could be a useful advocate, influencing people others wouldn't, and perhaps if she engages with those in the ME/CFS community who have spent time understanding the politics and the science and learns a bit more she could be a really good advocate.

But the Cochrane Exercise therapy review should not be primarily an advocacy event. It should be a careful review of the evidence by people with the expertise to do that.
 
I have had a reply to my letter to Toby Lasserson. I was planning to follow up today to ask why they have removed the "used in" link from the reviews to the NICE Clinical Knowledge Summary but not to the new NICE ME/CFS guidelines which explicitly say the Cochrane reviews were excluded. I will do that now.

Dear Caroline,

Thank you for your recent message addressed to the Deputy Editor in Chief of The Cochrane Library.

As you will be aware, Cochrane continues to support the ongoing review of exercise therapy with a new review team, in conjunction with an Independent Advisory Group. The decision to retain the amended review from 2019 will not be reconsidered by the Editor in Chief, nor will any further action be taken relating to other reviews implied by the Editorial Note posted in the review of cognitive behavioural therapy. We are in discussion with colleagues at Cochrane UK as to the how links to guidelines and other dissemination products such as the Clinical Knowledge Summaries for the reviews of exercise therapy and Cognitive Behavioural Therapy are best displayed on the Cochrane Library.

NICE have confirmed that details of the collaborative approach to support the use of both Cochrane reviews and the topic expertise of Cochrane review authors, groups and networks in the development of NICE guidelines will be included the planned update to the NICE Guidelines Manual expected in 2022.

Best wishes,

Katie Abbotts
Communications and External Affairs
Cochrane

Cochrane, St Albans House, 57-59 Haymarket, London SW1Y 4QX UK

www.cochrane.org

Trusted evidence. Informed decisions. Better health.
 
Caroline Struthers said:
I was planning to follow up today to ask why they have removed the "used in" link from the reviews to the NICE Clinical Knowledge Summary but not to the new NICE ME/CFS guidelines which explicitly say the Cochrane reviews were excluded. I will do that now.
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I checked again, and they have now removed the links to the new NICE ME/CFS guideline as well!!!! No idea why they didn't do both at once, but hey!
 
Caroline Struthers said:
The decision to retain the amended review from 2019 will not be reconsidered by the Editor in Chief, nor will any further action be taken relating to other reviews implied by the Editorial Note posted in the review of cognitive behavioural therapy
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Ah, the use of a passive voice when trying to minimize responsibility in a decision. However this is problematic as the decision to retain the amended review from 2019 was... not to retain it. Then there were threats and attacks and that decision changed, although the most weaselly way possible: pretending their hands are tied, even though they did make decision initially. This has been going on for over 5 years and the process is completely stalled.

For an organization whose product is evidence, they really don't have much trust in their evidence. Or care much what it says, or how it's used. What a dysfunctional mess this organization is.
 
Hutan said:
It's my understanding that the planned return to full-time work in 2019 did not eventuate. She retired from the Navy in 2021 on medical discharge.
https://community.cochrane.org/orga...high-profile-reviews-pilot/author-team#KayBio


https://www.gosportconservatives.org/people/kay-hallsworth


I found an audio interview of Kay Hallsworth from mid 2021 here:
https://player.fm/series/lockdown-2...ns-manager-association-of-royal-navy-officers
It's 48 minutes, so a long listen. There's quite a change from the 2019 article.
“ …I think if the homeworking situation that we have now… if I had been allowed a bit more flexibility within the roles that I was (doing) at the time, to be able to work like this, I probably wouldn't have left. I'd probably still be serving.”
She also is very clear about the need for more research.

So, I don't know. It seems that she has experienced the BPS rehabilitation at its best, and, despite that, her health became worse. But Kay confidently asserts that the illness is an autoimmune condition 'like MS', and that still worries me. I mean, perhaps ME/CFS is an autoimmune condition, I wonder that myself sometimes, but I would not state it with certainty. We saw it in earlier statements where she confidently asserted things that there is no evidence for. Maybe now, she could be a useful advocate, influencing people others wouldn't, and perhaps if she engages with those in the ME/CFS community who have spent time understanding the politics and the science and learns a bit more she could be a really good advocate.

But the Cochrane Exercise therapy review should not be primarily an advocacy event. It should be a careful review of the evidence by people with the expertise to do that.
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Thanks @Hutan. That’s an interesting update. I agree on the autoimmune condition possibility and yes we don’t know enough yet.
 
Caroline Struthers said:
NICE have confirmed that details of the collaborative approach to support the use of both Cochrane reviews and the topic expertise of Cochrane review authors, groups and networks in the development of NICE guidelines will be included the planned update to the NICE Guidelines Manual expected in 2022.
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"NICE --- confirmed details --- collaborative approach --- use of --- Cochrane reviews and the topic expertise of Cochrane review authors, groups and networks"

You mean the self interested reviews, authors etc. are going to be used in developing NICE guidelines - oh dear. Also, as you (Caroline) and @rvallee have highlighted, Cochrane is dysfunctional - it cannot produce high quality reviews or even correct reviews that have been shown to be flawed, in a timely fashion (if at all).

I suspect they're (Cochrane) taking some pleasure in highlighting Cochrane role in working with NICE --- NICE are probably wondering what a crowd of loopers senior management have linked up to.

There were comments about Britain's place in the world post Brexit --- if the UK is inadvertently promoting Cochrane, i.e. via the NICE/Cochrane partnership, then that is hardly going to be a positive contribution.
 
Finally got around to drafting a reply* to NICE (Katy's) reply**. Grateful for your suggestions.

I've plagiarised some of your quotes @Caroline Struthers !

*Me to NICE (Katy):
"Regarding your comment: "Each review question in the NICE guideline has its own review protocol agreed by the guideline committee. These protocols are different to those used by Cochrane reviews (for example, different inclusion and exclusion criteria), and the NICE guideline conducted its own independent systematic reviews based on Developing NICE guidelines: the manual<https://www.nice.org.uk/process/pmg20/chapter/introduction>"

I think this is essential i.e. so that NICE can produce evidenced based reviews. I reiterate that the NICE guideline committee, the support technical staff and others in NICE, who participated in the development of the new ME/CFS guideline, have indeed reviewed the evidence and produced a sound guideline. However, leading figures in GRADE/Cochrane, such as Professor Paul Garner, have attacked the new guideline and praised others (involved in the discredited Lightening Process) who have also criticised the new guideline [Note 1]. While such unwarranted, and unevidenced, criticisms are often considered the norm on social media, the fact that they are made by a leading figure in GRADE/Cochrane is evidence that NICEs collaborative agreement is not appropriate.

Understandably the ME/CFS community, and indeed those who view NICE as an example of how to produce clinical guidelines, are concerned by the unevidenced attacks on the new ME/CFS guideline.

To summarise, while I understand that NICE will attempt to manage its use of GRADE/Cochrane reviews, the evidence so far indicates that NICE's role is incompatible with the use of GRADE/Cochrane reviews and indeed the maintenance of public confidence in the system for producing guidelines.

EDIT - I think I need to encourage NICE to highlight that much research funded by the Department of Health and Social Care (which also funds NICE) is unsuitable for use in guidelines - unblinded + subjective outcomes. Joined up Government and all that!

Regards

NOTE -
Paul Garner, a co-founder and influential member of Cochrane, said on Twitter “Nice (sic) lost the plot with GRADE with ME/CFS, according to the people that actually developed the methods: “a disastrous misapplication of GRADE methodology is the source of the problem” (16). Garner also describes Live Landmark, a Norwegian PhD student and Lighting Process practitioner as “Somebody being honest about the perversion of the GRADE process by Nice (sic) on ME/CFS” (17)


**NICE (Katy) to me:
FMMM1 said:
Folks, got this reply from NICE i.e. to my email setting out my concerns re NICEs use of GRADE/Cochrane. I haven't even read it yet

@Jonathan Edwards @Caroline Struthers


"Dear Francis.

Thank you for your follow up email.

The Cochrane review Exercise therapy for chronic fatigue syndrome<https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/full> (Larun et al. 2019), and the evidence reviews on exercise therapy in support of NICE guideline NG206 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management<https://www.nice.org.uk/guidance/ng206>, are separate entities. The Cochrane review by Larun et al. was examined by the NG206 guideline committee<https://www.nice.org.uk/guidance/ng...acological-management-of-mecfs-pdf-9265183028> (see p.7, section 1.1.3.2 ‘Excluded studies’) who noted that it “…pooled all exercise therapies irrespective of the type of exercise therapy, and also pooled all control arms considered ‘passive’ (including treatment as usual, relaxation and flexibility). We did not consider this methodology appropriate for decision-making.”

Each review question in the NICE guideline has its own review protocol agreed by the guideline committee. These protocols are different to those used by Cochrane reviews (for example, different inclusion and exclusion criteria), and the NICE guideline conducted its own independent systematic reviews based on Developing NICE guidelines: the manual<https://www.nice.org.uk/process/pmg20/chapter/introduction>.

In terms of quality assessment of the evidence, the NICE guideline committee exercised their clinical judgement to decide which components of GRADE were important for downgrading evidence quality, for example, risk of bias, population directness, and threshold(s) for minimal clinically important differences. The full details of the review protocol and data analysis relating to exercise therapy in NG206 can be found in Evidence review [G] for the non-pharmacological management of ME/CFS<https://www.nice.org.uk/guidance/ng...acological-management-of-mecfs-pdf-9265183028>. The clinical evidence summary tables for exercise interventions, including GRADE analysis, begin on p.147.

These differences between the methods and processes of Cochrane reviews and NICE guidelines can result in different quality ratings of the evidence in GRADE, as in this case with exercise therapy for ME/CFS.

Please also note that in Oct 2019 Cochrane announced<https://www.cochrane.org/news/cfs> that “a new approach to the publication of evidence in this area is needed; and, today we are committing to the production of a full update of this Cochrane Review”.

Regarding the announcement in Sept 2021 that NICE have signed a collaborative agreement with Cochrane. This is a high level agreement, and NICE is in the process of working with Cochrane in an attempt to align processes and methods in the future, and this will take time.

I hope the above information is useful for you.

Kind regards
Katy
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Hutan said:
It's my understanding that the planned return to full-time work in 2019 did not eventuate. She retired from the Navy in 2021 on medical discharge.
https://community.cochrane.org/orga...high-profile-reviews-pilot/author-team#KayBio


https://www.gosportconservatives.org/people/kay-hallsworth


I found an audio interview of Kay Hallsworth from mid 2021 here:
https://player.fm/series/lockdown-2...ns-manager-association-of-royal-navy-officers
It's 48 minutes, so a long listen. There's quite a change from the 2019 article.
“ …I think if the homeworking situation that we have now… if I had been allowed a bit more flexibility within the roles that I was (doing) at the time, to be able to work like this, I probably wouldn't have left. I'd probably still be serving.”
She also is very clear about the need for more research.

So, I don't know. It seems that she has experienced the BPS rehabilitation at its best, and, despite that, her health became worse. But Kay confidently asserts that the illness is an autoimmune condition 'like MS', and that still worries me. I mean, perhaps ME/CFS is an autoimmune condition, I wonder that myself sometimes, but I would not state it with certainty. We saw it in earlier statements where she confidently asserted things that there is no evidence for. Maybe now, she could be a useful advocate, influencing people others wouldn't, and perhaps if she engages with those in the ME/CFS community who have spent time understanding the politics and the science and learns a bit more she could be a really good advocate.

But the Cochrane Exercise therapy review should not be primarily an advocacy event. It should be a careful review of the evidence by people with the expertise to do that.
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I'd rather leave Kay alone, personally. I'm sure she has patients' best interests at heart. But the point still stands that if the IAG won't accept "activist" patients, it is endorsing the silencing of patients. That's a better angle, I think, and one Hilda has more control over.
 
I agree that publicly discussing a person and their qualifications and views feels uncomfortable. But Kay is not on the IAG, she is on the review writing team. She is the only patient on the review writing team and the ME/CFS community knew very little about her.

I think it was reasonable to try to determine whether Cochrane has chosen people based on their ability to evaluate evidence well and bring specific knowledge that they can contribute to the team. I think it's reasonable to determine what scope remains for those with a vested interest in maintaining the status quo to bias the process. So, I think it's reasonable to evaluate the people on the writing team.

adambeyoncelowe said:
I'm sure she has patients' best interests at heart
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Having the patients' best interests at heart is not enough of course - I'm sure White, Crawley and Chalder would say they do too. In fact, it's not even necessary for this task I think. All we really need is for the people chosen to have the skills to evaluate evidence in an unbiased way and to present the results clearly.

Hilda has told us that she largely chose the people appointed to the writing team and the IAG.
 
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