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

Penelope McMillan said:
It is certainly our intention to bring the lived experience of severe ME to the IAG.

Additionally, I am heavily networked with people who have a wide range of illness severity. I seek their input and try to be transparent about when I am speaking for myself and from my experience, as opposed to when I am representing our community.
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I am very glad that there will be some representation of severe ME. However I am concerned that this is being put together in the manner of a bunch of consumer interest groups coming together in a public relations exercise. It is not about science.

I am glad there is inclusion of so-called "lived experience" of patients, but it is orthogonal to the main point which is that the science is flawed, or missing altogether. After all, you can just have different people with a different "lived experience" including "recovered" patients - and if it's about lived experience why shouldn't their views be given equal weight?

This is supposed to be about the quality of scientific evidence. The "lived experience" narrative, while helpful in the sense that it's preferable to the dynamic in which patients are referred to pejoratively or ignored, often obscures this point about scientific evidence and can even feel patronizing to many. It can also be capitalized on by people who will simply present a different and more convenient "patient experience" with equal weight.

I really hope any reps of severe ME patients can try to counter this dynamic and framework of consumer experience. This is about scientific evidence.
 
Lucibee said:
Re Recovered person - what about @phil_in_bristol ?
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Phil has not indicated any knowledge of science. I think if we are going to suggest anyone, it should be someone who can contribute to the scientific discussion in a meaningful way. I wondered about Charles Shepherd. I don't think he says he has recovered, but he has said he has improved significantly since the early years I think.
 
Robert 1973 said:
Thanks for the latest progress report, @Hilda Bastian. Like others, I’m puzzled why you and Karla Soares-Weiser decided to add “a person who has recovered from ME/CFS” to the IAG. Please can you explain your reasoning behind this decision?

To be clear, I would have no objection to someone with relevant expertise being included who happened to have recovered after being diagnosed with ME/CFS, but I can’t understand why you feel it is relevant to appoint someone because that have recovered from ME/CFS, for the reasons others have given above.
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The whole recruitment process seens a strange process in terms of a random mix with no assessment criteria ever being published so we have no idea why one person is chosen over another or why a mix of attributes are required (some such as 'non-activist', 'recovered' are defined but no rational for why such groups have been published). Also why Hilda with the editor deciding rather than the existing IAG.
 
Adrian said:
or why a mix of attributes are required (some such as 'non-activist', 'recovered' are defined but no rationale for why such groups have been published).
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Reads to me like these categories are supposed to be something akin to (possibly competing) interest groups to give the impression of a "plurality of voices" being represented (to use a phrase I believe OFCOM uses), whereas while politically plausible, is not what is required for a scientifically rigorous result.
 
Ariel said:
Reads to me like these categories are supposed to be something akin to (possibly competing) interest groups to give the impression of a "plurality of voices" being represented (to use a phrase I believe OFCOM uses), whereas while politically plausible, is not what is required for a scientifically rigorous result.
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Also there is no justification as to why those definitions would be a 'plurality of voices' rather that say people with ME from different socioeconomic backgrounds or PwME with a range of scientific skills etc. Its purely arbitry choices made I can only assume because Hilda thought it seemed like a good idea at the time.
 
Robert 1973 said:
Thanks for the latest progress report, @Hilda Bastian. Like others, I’m puzzled why you and Karla Soares-Weiser decided to add “a person who has recovered from ME/CFS” to the IAG. Please can you explain your reasoning behind this decision?

To be clear, I would have no objection to someone with relevant expertise being included who happened to have recovered after being diagnosed with ME/CFS, but I can’t understand why you feel it is relevant to appoint someone because that have recovered from ME/CFS, for the reasons others have given above.
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"The editor-in-chief said to" doesn't sound so independent to me.
 
A tenth member is to be appointed by the IAG, and that has resulted in considerable debate and lobbying.
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The lobbying gives the impression that people with conflicts of interest (COI) are trying to influence the process.

ME/CFS charities likely want to have their say in this process but in most cases, they exist solely to represent the general interest of patients. They can be incompetent and wrong, but usually, they don't have a COI. I suspect most ME/CFS organizations want to be involved in reviews like this because in their surveys a lot of ME/CFS patients say that graded exercise therapy made them worse. And as I understand it, patient organizations from around the world were invited to participate in this process, so I assume they aren't the ones the lobbying refers to.

Then there are ME/CFS patients like myself who have submitted comments to Cochrane to point out issues with the review but these are all public and focused solely on methodological issues of the review.

So who is doing the lobbying and why? By requiring the 11th member of the IAG to be a ME/CFS patient that recovered (a bizarre requirement) Cochrane gives the impression that people with COI are successfully influencing this review.

I find it strange that Cochrane is soliciting suggestions for this position without specifying that this person needs some understanding of evidence synthesis, statistical methodology, GET trials, or the scientific process in general. The only requirement seems to be that it has to be someone who recovered from ME/CFS.
 
Amw66 said:
I feel sorry for Hilda Bastien - this looks like there is a new puppetmaster who has just found out how to pull strings. I hope I am wrong, but the high hopes I had are not quite as high.
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The only consolation in this latest politically motivated recruitment decision is that it is unlikely that the IAG as a whole will have much impact on the outcome. As ridiculous as this diversity side show is, it probably doesn't matter very much.

My feeling is that whatever the outcome was planned to be from the beginning, that will indeed be the outcome - the infrastructure is not set up for proper scientific analysis. I'm just not completely sure yet what the planned outcome was.
 
Hutan said:
The only consolation in this latest politically motivated recruitment decision is that it is unlikely that the IAG as a whole will have much impact on the outcome. As ridiculous as this diversity side show is, it probably doesn't matter very much.

My feeling is that whatever the outcome was planned to be from the beginning will indeed be the outcome - the infrastructure is not set up for proper scientific analysis. I'm just not completely sure yet what the planned outcome was.
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Hard to agree with that but the inability to even find a working group to accept it told us everything we need to know about where it's going. Very hard to go anywhere from there. Especially as until then it's still in the mental disorders group, likely to stay there for at least a full year, and then, what, people will take a review no working group accepted as valid? Doubtful. My guess at this point is the exercise review will stand as is, marked as deprecated like the CBT one but in a way that is hard to find and certainly not altering the already-published versions, the new one will be posted somewhere and people will be free to pick their cherries all they want.

I hope I'm wrong but whatever I stopped expecting anything useful out of any official institution a long time ago. The imposition of odd requirements by the editor-in-chief suggests this is not an independent process after all. Medicine is simply not set up for complexity like this, too easy to fall into logical fallacies and old trusty ruts that go nowhere in a comforting way. And then there's ideology. The celestial spheres may be a lie but aren't they so pretty with their perfect circular orbits and everything?

I really wanted this to work but I think Cochrane set this up for failure on purpose, to then be able to point at how horribly bitter and divisive we are and to punish Bastian for having taken our side, to show how even those who try to help us can't win, because they get sabotaged. No need for conspiracy, it's consistent with the last few decades and with what Cochrane does. They are the establishment now and like all institutions they fall for the iron law of institutions, they are in the business of self-preservation and nothing else.

Looooong desperate sigh
 
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It may be relatively hard to find someone completely recovered interested in joining - unless someone with a pet theory of how they recovered. That pet theory is quite unlikely to be about exercise though. The absurdity of the 'inclusivity' may be all the more obvious within.

The coincidence is too much to believe, this must originate with the Garner-Norway connection.
 
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