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

[Peter T]

This is a fair point but I strongly suspect that the people in favor of the review who complained about the update process did not have to wait two weeks to obtain a response from Cochrane.

I suspect the big issue is not timings, rather that any of the complaints/concerns about the 2019 Review were either ignored or responded to with the reply it would all be fed into the IAG, whereas the pro 2019 review objections to any replacement review process even happening resulted in pausing the IAG.

Hardly treating all views equally.

 

[Trish]

Thanks @Caroline Struthers. If I understand it correctly, Cope is telling Cochrane that they can't just say we've decided not to investigate your complaint, they have to follow the process on the flow chart and have procedure set up to follow. Since we have submitted a 5 part complaint about the editor in chief's actions and policies, they presumbably have to follow this process and inform us of the outcome on each of our 5 complaints. What I'm not clear about is whether they have to give the reasons for their decisions or inform us who or which committee was involved in the decisions.

 

[Caroline Struthers]

Thanks @Caroline Struthers. If I understand it correctly, Cope is telling Cochrane that they can't just say we've decided not to investigate your complaint, they have to follow the process on the flow chart and have procedure set up to follow. Since we have submitted a 5 part complaint about the editor in chief's actions and policies, they presumbably have to follow this process and inform us of the outcome on each of our 5 complaints. What I'm not clear about is whether they have to give the reasons for their decisions or inform us who or which committee was involved in the decisions.

They are asking Cochrane to explain the process they went through to decide not to investigate, and explain how it corresponds to the COPE flowchart (which obviously it doesn't!) Who knows what Cochrane will come up with...

 

[Sly Saint]

@Caroline Struthers
why do they alternate between calling you Ms Struthers and Dr Struthers? (It's almost like they are addressing two different people.)

 

[Caroline Struthers]

@Caroline Struthers
why do they alternate between calling you Ms Struthers and Dr Struthers? (It's almost like they are addressing two different people.)

The default is always Dr, just because I am a researcher I guess although obviously I never put PhD anywhere near my name! I always ask them to call me Ms, or preferably Caroline, and usually they remember in subsequent correspondence. I get Professor-ed sometimes, which is funny.

 

[Sly Saint]

The default is always Dr, just because I am a researcher I guess although obviously I never put PhD anywhere near my name! I always ask them to call me Ms, or preferably Caroline, and usually they remember in subsequent correspondence. I get Professor-ed sometimes, which is funny.

it's just weird that they use both Ms and Dr within the same letter, sometimes in the same sentence!

 

[Caroline Struthers]

it's just weird that they use both Ms and Dr within the same letter, sometimes in the same sentence!

I've stopped noticing...it's quite funny also that early on in correspondence I'm often Caroline, and then am converted back into Ms/Dr Struthers when I keep challenging the attempts to shut me down.

 

[Andy]

Trial By Error: Cochrane Ends Silence on ME/CFS Exercise Review Developments

"I recently posted about Cochrane’s unsatisfactory responses to a request from the Science for ME forum that the organization withdraw “Exercise therapy for chronic fatigue syndrome.” a seriously flawed and unreliable 2019 review. The forum also requested an update on Cochrane’s delayed efforts to produce a new ME/CFS exercise review designed to replace this 2019 document; the latter, unfortunately, remains on Cochrane’s site and continues to get cited by promotors of the GET/CBT treatment paradigm. The forum found the organization’s responses inadequate and has filed a formal complaint with Cochrane about the matter.

In the meantime, after more than two years of silence about what has—or has not–been happening with the planned new review, Cochrane last week finally offered a glimpse into developments. The information arrived on November 10th in the form of a report from Hilda Bastian, a long-time Cochrane associate and the designated head of a team, called the Independent Advisory Group (IAG), that is charged with overseeing the development of the new review."

https://virology.ws/2023/11/16/tria...lence-on-me-cfs-exercise-review-developments/

 

[dave30th]

Trial By Error: Cochrane Ends Silence on ME/CFS Exercise Review Developments

I have updated this to add that Cochrane has rejected S4ME's complaint. ADD: And COPE's letter to Cochrane.

 

[Hutan]

It's a nice summary of events @dave30th, thank you. Also some great comments on the blog @Peter Trewhitt, @Snow Leopard.

 

[Hutan]

@Peter Trewhitt writes about the silence and secrecy of the past two years. Actually it mostly continues. A large chunk of the international ME/CFS advocacy machinery is presumably tied up in confidentiality agreements. #MEAction's silence seems to cover the US head organisation and its US subsidiaries; I don't think the UK branches have felt constrained. EMEA though seems to include a lot of European organisations, and potentially the regional subsidiaries of those European organisations. ME/CFS Australia has organisations in most of the Australian states that seem to be unable to comment on Cochrane issues. IACFSME also is unwilling to comment (Lily Chu is a member of the IAG). What has been done, planned or not, is to very effectively hobble the ME/CFS community's capacity to know, to comment and to influence what is going on.

And, although Hilda is now communicating, what is being said is very very limited. Mostly all we know is that work continues, an extra person will be added to the IAG presumably to placate the BPS people - was that negotiated as part of the resolution of their complaint? And there will be some sort of new note added to the old review, the contents of which presumably won't be agreed upon until the new member of the IAG is finalised.

It feels as though this whole exercise is a product of negotiation rather than attention to science. And our side definitely does not have as much information about the process or the same access to the decision makers as the BPS side does.

 

[bobbler]

@Peter Trewhitt writes about the silence and secrecy of the past two years. Actually it mostly continues. A large chunk of the international ME/CFS advocacy machinery is presumably tied up in confidentiality agreements. #MEAction's silence seems to cover the US head organisation and its US subsidiaries; I don't think the UK branches have felt constrained. EMEA though seems to include a lot of European organisations, and potentially the regional subsidiaries of those European organisations. ME/CFS Australia has organisations in most of the Australian states that seem to be unable to comment on Cochrane issues. IACFSME also is unwilling to comment (Lily Chu is a member of the IAG). What has been done, planned or not, is to very effectively hobble the ME/CFS community's capacity to know, to comment and to influence what is going on.

And, although Hilda is now communicating, what is being said is very very limited. Mostly all we know is that work continues, an extra person will be added to the IAG presumably to placate the BPS people - was that negotiated as part of the resolution of their complaint? And there will be some sort of new note added to the old review, the contents of which presumably won't be agreed upon until the new member of the IAG is finalised.

It feels as though this whole exercise is a product of negotiation rather than attention to science. And our side definitely does not have as much information about the process or the same access to the decision makers as the BPS side does.

Can we guess at approx what date the silence/potentially confidentiality agreements came in? Based on when comments were being made and then stopped from organisations or individuals within them?

 

[bobbler]

@Peter Trewhitt writes about the silence and secrecy of the past two years. Actually it mostly continues. A large chunk of the international ME/CFS advocacy machinery is presumably tied up in confidentiality agreements. #MEAction's silence seems to cover the US head organisation and its US subsidiaries; I don't think the UK branches have felt constrained. EMEA though seems to include a lot of European organisations, and potentially the regional subsidiaries of those European organisations. ME/CFS Australia has organisations in most of the Australian states that seem to be unable to comment on Cochrane issues. IACFSME also is unwilling to comment (Lily Chu is a member of the IAG). What has been done, planned or not, is to very effectively hobble the ME/CFS community's capacity to know, to comment and to influence what is going on.

And, although Hilda is now communicating, what is being said is very very limited. Mostly all we know is that work continues, an extra person will be added to the IAG presumably to placate the BPS people - was that negotiated as part of the resolution of their complaint? And there will be some sort of new note added to the old review, the contents of which presumably won't be agreed upon until the new member of the IAG is finalised.

It feels as though this whole exercise is a product of negotiation rather than attention to science. And our side definitely does not have as much information about the process or the same access to the decision makers as the BPS side does.

The irony isn't lost on me that a pretty heavyweight seeming head of governance has stated in their letter that they are too small a charity to be able to reply to a complaint and provide updates to significant issues raised in them - but yet on the otherhand.... this?

 

[Solstice]

Was surprised that this thread suddenly had an influx of posts. Even more surprised that Cochrane felt compelled/pressured to start up dialogue again. That said it seems as placating us more than anything so far and without further pressure I think this is what we'll be left with.

Kudo's to everyone on S4ME that helped draft the open letter and of course to the people that have been continuously lobbying on our behalf. My memory is as shitty as the next person's posting here so I mostly remember @Caroline Struthers picking this up, anyone else that's helped in any way shape of form deserves praise too.

I hope this is just the beginning.

 

[Andy]

Email received today,

"Dear all,

The December 2023 report from the Independent Advisory Group is now available online.

There are updates on:

• Preliminary timetable for the new year;
• Complaints and communication; and
• IAG membership.

Best regards,
Cochrane"

 

[Trish]

So no news on the protocol timetable, and the new member of the IAG is to be a clinician working with pwME for 'balance'. They already have two on the IAG, Lily Chu and Peter Gladwell. The only other thing of note is that Cochrane, having gone through major reorganisation and cutbacks, is only now trying to get its act together on handling complaints.

 

[Peter T]

Interesting that there is no mention of the year or so delay due to objections by undisclosed parties to any replacement of the current 2019 version of the CFS Exercise Review, despite it being already recognised at publication by Cochrane to be flawed failing to address the recognised concerns about the draft it replace[d] some of which, but not all, were raised in [the] added editorial note.

Also it was not very explicit concerning the streamlining of Cochrane’s complaints procedures or if the new process will look again at the extant complaints that Cochrane has declined to address. Hopefully complaints about the Cochrane processes in relation to their overall handling of the 2019 review will not just be handed down to the IAG which has no authority in relation to senior Cochrane officials. Certain I feel now our complaints and the issue [of] withdrawing the 2019 Review immediately should now be dealt with at a Trustee level.

[corrected typos]

 

[Jonathan Edwards]

The description 'medical practitioner working with patients' is odd.
"Working with patients' tends to be an American phrase used to describe shopping around by physicians for answers to a person's medical problems. I am not quite sure why she has used the phrase. I have worked with PWME for about 3 hours a day seven days a week for ten years but am probably not what is in mind. I am not quite sure what working with patients amounts to otherwise if we have no proven treatments.

It is a pity that the report ends up hinting at topics but saying nothing - about what 'bias' is of concern, what the actual hold up was or what is going to be done.

 

[Peter T]

So no news on the protocol timetable, and the new member of the IAG is to be a clinician working with pwME for 'balance'. They already have two on the IAG, Lily Chu and Peter Gladwell. The only other thing of note is that Cochrane, having gone through major reorganisation and cutbacks, is only now trying to get its act together on handling complaints.

Was it October when we were told our questions about timescales would be answered in a couple of weeks? However despite two official updates (Nov and Dec) on the Cochrane site and much discussion on Hilda’s personal blog, we are no wiser than we were in mid 2021 when previous updates stopped.

 

[Trish]

I think it's all pretty much outside Hilda's control on timetables, details etc. The speed or lack of it seems to be down to when editors get around to talking to her and making decisions. So slower than a snail.