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.

 

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.

 

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

 

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

 

It could be that Col Etherington did not fancy the idea of a move to the Midlands, so is now concentrating on other roles.

 

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...

 

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.

 

One has to be impressed by their sense of...Irony.

 

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!

 

I know, I copied and pasted the whole signature on purpose ;-)

 

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.

 

Thanks @Hutan. That’s an interesting update. I agree on the autoimmune condition possibility and yes we don’t know enough yet.

 

"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:

 

What are you hoping to achieve with this correspondence?

 

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.