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

Interesting to see that the only university in NL that's put money in is the one that hosts the dreadful NKCV(Knowledge center chronic fatigue) that hosts Hans Knoop, Tanja Kuut etc.

Edit for clarification it's the AUMC that's put in 100-500 thousand GBP.
 
Hutan said:
Is the full list of IAG members in the public domain? I know we got information about the initial appointments, but there were at least a couple of appointments later.
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Presumably neither Cochrane or the IAG have published such a list, and at present I suspect it is probably better not to speculate at all about the group’s membership unless individuals put themselves forward officially as Hilda Bastian did in relation to her lead role. Do we know if she is still continuing in that role?

However, if any members are representing an organisation or voluntary group, I personally feel the organisation or organisations should be identified.
 
We have had it confirmed that Hilda remains part of the IAG.

I agree we shouldn't speculate, but I also think the full list should be in the public domain.

It was made clear that people were appointed as individuals, and not representatives of any organisations they were associated with. That is why I cannot understand organisations saying that they are constrained by the confidentiality agreements that IAG representatives signed. That is not how confidentiality agreements work - the organisation would have to be a party to the confidentiality agreement if they were also constrained. This seems to be wrong -see later posts
 
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Cochrane published the list of review authors and IAG members back in May 2021 along with short biographies of each.
https://community.cochrane.org/orga...older-engagement-high-profile-reviews-pilot-1

Review authors
You can see biographies and disclosures of interests of the authors here. They bring a great depth and breadth of expertise to the project, and we are grateful to them for their commitment:

  • Consumers: Mary Dimmock (USA, carer, person with ME/CFS advocacy background), Kay Hallsworth (UK, person with ME/CFS);
  • Clinicians: Todd Davenport (USA, physiotherapy), Julia Newton (UK, medical);
  • Systematic reviewers with relevant methodological expertise: David Nunan (UK, experience with systematic reviews of exercise as an intervention); Argie-Angeliki Veroniki (Greece, statistician);
  • Systematic reviewers from Cochrane response: Hanna Bergman (Israel), Nicholas Henschke (Germany, lead author).
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Indenpendent Advisory Group (IAG)
IAG membership (eight appointed, two vacancies):

  • Nominees of three organisations representing people with ME/CFS:
    • Penelope McMillan (with Penelope Del Fante, and proxy, Geoffrey Hallmann) (Australia) - ME/CFS Australia;
    • Jaime Seltzer (USA) - #MEAction;
    • Samuli Tani (Finland) - European ME Alliance;
  • Two people from a clinical background with active interest in ME/CFS:
    • Lily Chu (USA) (medical practitioner);
    • Peter Gladwell (UK) (physiotherapist);
  • Individuals who had been involved in discussions with Cochrane preceding the IAG:
    • Hilda Bastian (Australia, Lead);
    • Mike Clarke (Ireland/UK, systematic review methodologist); and
    • George Faulkner (UK, independent researcher).
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IAG 9th member added June 2021
https://community.cochrane.org/orga...older-engagement-high-profile-reviews-pilot-0
I’m pleased to introduce our ninth member, Miranda Cumpston. Miranda has 15 years of wide-ranging experience in systematic reviews and the methods of evidence synthesis – with expertise in several methods that have been contentious in this review. Miranda is a senior methods editor for Cochrane Public Health. She is one of the co-editors of Cochrane’s Handbook on methods for Cochrane reviews, as well as a member of the GRADE Working Group. Her bio and disclosures are here.
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July 2021 update:
https://community.cochrane.org/orga...ngagement-high-profile-reviews-pilot/cochrane
At this point, nine members of the IAG have been appointed including me – you can see their bios and disclosures of interest here. A tenth member is to be appointed by the IAG, and that has resulted in considerable debate and lobbying. Cochrane’s editor-in-chief, Karla Soares-Weiser, and I met to discuss this, and agreed to expand the IAG to add an additional position for person who has recovered from ME/CFS. Suggestions for this 11th position are welcome by August 22 to: Cochrane.IAG@gmail.com
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So the first 9 members of the IAG are publicly listed here with their biographies, but the remaining 2, if they were every appointed, are not listed:
https://community.cochrane.org/orga...older-engagement-high-profile-reviews-pilot-2
 
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So Karla Soares-Weiser, the editor in chief, and Hilda put their heads together about the IAG in July 2021 after 9 had been appointed, and decided someone who had recovered from ME/CFS should be added to the IAG, with no logic provided on why they thought that was necessary.

My suspicious mind suggested to me that they thought the needed someone who favoured exercise therapy to provide their desired 'balance'. And my even more suspicious mind suggests to me that Paul Garner might have decided he needed to muscle in on it, with his personal mythology of having cured himself of ME/CFS with happy thoughts and exercise. He has the credentials of being the 'patient rep' on COFFI, I seem to remember. Of course this is all speculation. Perhaps it's Live Landmark!!!!
 
Interesting on the issue of whether the IAG members who have links with named ME/CFS groups are representing organisations or themselves, they are described as “Nominees of three organisations representing people with ME/CFS”, the groups being
  • European ME Alliance
  • #MEAction
  • ME/CFS Australia
though it was not unambiguously clear if the individuals were ‘nominated’ by Cochrane or by their ME/CFS groups. So we don’t know definitively if Cochrane chose the individuals or the patient groups, though perhaps the wording ‘nominees of’ inclines more to the latter. Do any members of these groups also members here have any views on this (that is if it is possible to respond to this, given the non-disclosure agreements)?

I suppose this currently seems more significant than it might have had the wider consultation on the new exercise review process begun in 2021 as promised.

There is also potential links to UK clinicians group BACKME, perhaps explaining why they seemed to be aware in September of the current IAG reactivation before Cochrane had responded to our communications. Interestingly there is some over lap with the latest NICE ME/CFS guidelines group.

[edited for clarity and to add the final sentence]
 
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https://community.cochrane.org/orga...older-engagement-high-profile-reviews-pilot-1
To achieve a balance of independent appointment and community representation, for the three positions representing people with ME/CFS internationally I invited organisations to hold these positions: the participating individuals are their nominees. Although there is no direct Cochrane policy for this, we asked the three organisations for informal disclosures of interest: we did not consider having an established policy on exercise and ME/CFS a conflict of interest. For individuals, we adopted a process on conflicts of interest similar to that for Cochrane authors.
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This paragraph suggests that you are right @Peter Trewhitt, that the ME/CFS rep positions do represent organisations, and so their confidentiality agreement could potentially prevent the whole organisation they represent from commenting on Cochrane and the process. Which is disturbing.

I feel sure that I have recently seen a comment from Hilda suggesting that the IAG reps were appointed as individuals - in that they were not reporting an organisation position but rather bringing their own opinions. I've been wrong before, of course. I'll see if I can find it. Both things could be true I guess.
 
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I had forgotten it was stated that organisations were appointed to hold positions. I wonder how deep into their membership involvement was expected to reach, and how you can appoint a membership organisation and then ask its nominated representative(s) to sign non disclosure agreements. Are they allowed to disclose IAG matters and discuss them with their staff, their trustees their whole membership? It sounds like complete nonsense. And the European group is itself an umbrella organisation, so are all their member organisations' members involved too?
 
Trish said:
So Karla Soares-Weiser, the editor in chief, and Hilda put their heads together about the IAG in July 2021 after 9 had been appointed, and decided someone who had recovered from ME/CFS should be added to the IAG, with no logic provided on why they thought that was necessary.

My suspicious mind suggested to me that they thought the needed someone who favoured exercise therapy to provide their desired 'balance'. And my even more suspicious mind suggests to me that Paul Garner might have decided he needed to muscle in on it, with his personal mythology of having cured himself of ME/CFS with happy thoughts and exercise. He has the credentials of being the 'patient rep' on COFFI, I seem to remember. Of course this is all speculation. Perhaps it's Live Landmark!!!!
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On that theme my mind starts running regarding the not wanting to withdraw the 2019 review vs Cochrane basically closing down in England due to funding and survival perhaps related to that moving to a Scandinavian university. and the clear push there in particular (seemingly Scandinavia in general) from certain individuals for lightning process psychosomatic and so on. Terrible timing I guess for them to have to remove the exercise review if future involves keeping certain types happy/not rocking that boat even if that is just the few shouting the loudest vs eg those who care about quality and standards they could make it feel that way etc
 
Trish said:
I don't see an overlap with the NICE guidelines group. Who were you thinking of, @Peter Trewhitt?
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I seem to be hallucinating, when I was reading up about Dr Gladwell, I thought one of the Bristol NHS websites said he was on the NICE guidelines committee. However, looking again I haven’t found that again and he is not on the NICE list for the most recent guidelines committee members.

He did though draft BACKME’s position paper clarifying they no longer support GET in the light of the NICE guidelines (see https://www.csp.org.uk/frontline/article/physiotherapy-mecfs-towards-consensus ) and worked with Action for ME on their Pacing Guide ( see https://bacme.info/people/dr-peter-gladwell/ ).
 
bobbler said:
On that theme my mind starts running regarding the not wanting to withdraw the 2019 review vs Cochrane basically closing down in England due to funding and survival perhaps related to that moving to a Scandinavian university.
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The Scandinavian move is a move of the Norwegian office from one place to another within Norway. I don't think that's directly linked to the UK central office closing, but I could be wrong.
 
Trish said:
The Scandinavian move is a move of the Norwegian office from one place to another within Norway. I don't think that's directly linked to the UK central office closing, but I could be wrong.
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Yes, that move is just within Norway. Cochrane Norway moving from one institution (where the lead author of the exercise review is) to another. Only the head of the Cochrane group, Clare Glenton, has moved too. The UK Cochrane Centre (was in Oxford) has closed, but Cochrane head office, where Karla and co. hang out is still going (in London 11-13 Cavendish Square W1G 0AN)
 
Peter Trewhitt said:
BACKME
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its BACME
BACME_logo.svg
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no K
 
As others ( @Hutan, @Peter Trewhitt )have said, If you are representing an organisation, would it not be necessary for you to have interchanges with that organisation? I would have expected the answer to be 'yes. It is very different from acting as a patient representative putting forward your own views as a patient.

@Trish stated

"I had forgotten it was stated that organisations were appointed to hold positions. I wonder how deep into their membership involvement was expected to reach, and how you can appoint a membership organisation and then ask its nominated representative(s) to sign non disclosure agreements. Are they allowed to disclose IAG matters and discuss them with their staff, their trustees their whole membership? It sounds like complete nonsense. And the European group is itself an umbrella organisation, so are all their member organisations' members involved too?"
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Repeating this, it seems to me that Cochrane set up a process that was unworkable. It asked organisations to select members to represent them, but also added a non disclosure agreement so presumably those members could not exchange information with the nominating body. This is senseless. How can Cochrane make progress on the review within such a senseless structure? Is this part of the problem?

It would be helpful to know if the 3 individuals appointed to represent patient organisations are actually constrained in this way, or if they have a way of exchanging information with the nominating organisation that does not fall foul of the non disclosure agreement. It would seem a very uncomfortable position for them to be in.
 
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