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

I don't think we'd get past first base with doing an exercise review, because Cochrane can correctly say they already have an approved group working one one. I think it would be worth attempting a CBT for ME/CFS review, since the current one is out of date and and as far as we know there isn't a new one in the pipeline. Given that CBT is still recommended in the NICE guideline, I think a review specifically on directive CBT based on the unhelpful beliefs and fear avoidance of activity model is very much worth doing, especially as the whole CBT/IAPT for MUS including ME/CFS is based on that model.
 
Trish said:
I don't think we'd get past first base with doing an exercise review, because Cochrane can correctly say they already have an approved group working one one. I think it would be worth attempting a CBT for ME/CFS review, since the current one is out of date and and as far as we know there isn't a new one in the pipeline. Given that CBT is still recommended in the NICE guideline, I think a review specifically on directive CBT based on the unhelpful beliefs and fear avoidance of activity model is very much worth doing, especially as the whole CBT/IAPT for MUS including ME/CFS is based on that model.
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But NICE have done a review of everything. Exercise, CBT, and everything else. It all documented for anyone to read. This is the review that SW tried to get Gillian Leng to tamper with. There is literally no point in doing a Cochrane review on anything for ME/CFS. I have kept saying this over and over to Cochrane, Hilda, etc. but getting no where.
 
Caroline Struthers said:
But NICE have done a review of everything. Exercise, CBT, and everything else. It all documented for anyone to read. This is the review that SW tried to get Gillian Leng to tamper with. There is literally no point in doing a Cochrane review on anything for ME/CFS. I have kept saying this over and over to Cochrane, Hilda, etc. but getting no where.
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I take your point about the CBT focused on the unhelpful beliefs/activity avoidance model.
 
Caroline Struthers said:
But NICE have done a review of everything. Exercise, CBT, and everything else. It all documented for anyone to read. This is the review that SW tried to get Gillian Leng to tamper with. There is literally no point in doing a Cochrane review on anything for ME/CFS. I have kept saying this over and over to Cochrane, Hilda, etc. but getting no where.
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The problem is the existing review still stands and no one is paying any attention to the hard to find 'warning' that a 'new review is underway'.

Caroline Struthers said:
the CBT focused on the unhelpful beliefs/activity avoidance model
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this is something that NICE maybe should have looked into further (as Trish has said); namely the actual CBT being 'offered' to pwME is not neccessarily the 'supportive counselling' that some patients have found useful and which NICE has approved on the basis that it is currently offered to other patients with LTCs.

However, there are still documents/manuals on CBT specifically for CFS (ME) that are apparently exempt from being 'updated' even though they include goal-setting for activities and exercise.
 
Caroline Struthers said:
But NICE have done a review of everything. Exercise, CBT, and everything else. It all documented for anyone to read. This is the review that SW tried to get Gillian Leng to tamper with. There is literally no point in doing a Cochrane review on anything for ME/CFS. I have kept saying this over and over to Cochrane, Hilda, etc. but getting no where.
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If Cochrane were to withdraw the current reviews and instead redirect their readers to NICE then I would agree. Sadly that's not the case, and the reviews are still being used against us.
 
Maybe another angle worth pursuing is getting Cochrane to flag (on both reviews) that they have both been re-assessed in the new NICE guidelines and linking to the NICE evidence.
(Particularly as they are supposedly now 'collaborating' with NICE).

This is supposedly already done by Cochrane on other reviews used in guidelines.

see my earlier post
https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-99#post-448448
 
Sly Saint said:
Maybe another angle worth pursuing is getting Cochrane to flag (on both reviews) that they have both been re-assessed in the new NICE guidelines and linking to the NICE evidence.
(Particularly as they are supposedly now 'collaborating' with NICE).

This is supposedly already done by Cochrane on other reviews used in guidelines.

see my earlier post
https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-99#post-448448
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Not only are they collaborating with NICE, but Gillian Leng, former CEO of NICE, is now on Cochrane's governing board. I have asked Cochrane to forward various communications to the Governing Board, but they don't do it. And there seems no mechanism to communicate directly with board members. I may try and find Gillian Leng's email address and write directly to her about it.
 
Trish said:
I don't think we'd get past first base with doing an exercise review, because Cochrane can correctly say they already have an approved group working one one. I think it would be worth attempting a CBT for ME/CFS review, since the current one is out of date and and as far as we know there isn't a new one in the pipeline. Given that CBT is still recommended in the NICE guideline, I think a review specifically on directive CBT based on the unhelpful beliefs and fear avoidance of activity model is very much worth doing, especially as the whole CBT/IAPT for MUS including ME/CFS is based on that model.
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And mention/tie it to recent changes in things like conversion courses being allowed to be offered and concerns over how content can be harmful if incorrect assumptions are behind what is being directed at etc.

I do think there is a common sense/descriptive model based on logic for harm of that, and the poor excuse of ‘maybe there are some who might not actually have the illness’ shouldn’t be an excuse for any condition to offer the opposite of what is useful. The idea a dodgy survey done under unequal power relationships as data retrospectively from a time when anyone claiming they got worse might perceive risk from saying that honestly for essential things in a situation that is precarious really is not the basis for data. If the model is broken - which the reconditioning etc shows then psychologically brainwashing that model is not a good thing. Quite simple.

more to the point is there is no evidence for other types of CBT or a model for it particularly because it was a weird addition that would be a footnote ‘and if’ for most other conditions without specifying CBT specifically vs counselling or something that might fit such an ‘and if’ more aptly.

what does a review do when a treatment might be effective at teaching behaviour that is harmful? In a way it failing and having no impact would be ‘better treatment’ than for those poor souls it did change the beliefs for? It certainly shouldn’t be based on stats without heeding that point.

it’s also confused by the fact that such material and other articles put online would have embedded bigotry towards any other behaviour and meant those on it had a dilemma of following their body and taking flak that took more energy than ‘playing along’ too. Which certainly means the course didn’t work other than like bigotry gourses telling people to hide their disability and neglect their needs because those very vourses had created a culture that made them less safe doing and being what their body needed.
How you can separate the cess pit everyone around pwme got bathed in ideology wise causing indirect closing down of options from the direct as if it were without that I don’t know. It’s like a course saying another minority just doesn’t try hard enough and has false beliefs as advertising then claiming your course is really effective even though it tells people to just suck up that being true and it’ll make life easier for them when they should never have to?
 
Hutan said:
So, it becomes a question of, is this the best way to use one's time? At this point, it's quite likely that we could produce a great protocol for the CBT review, or the exercise review, but it ends up being a waste of time. Working on a protocol for the CBT review is actually on my to do list, but I've been having a bit of a late-life crisis, trying to work out what's most important, and, in the process, not progressing anything much at all.
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Actually I forgot to address this in my comment but, does it even matter? I'm not even sure if this review matters anymore, given the sheer mass of published research since. I'm really not sure what weight the original review still has, especially given the widespread hostility to the NICE guidelines and how little evidence actually matters to the EBM process. It's still cited, but citations are always cherry-picked anyway, if the review did not support GET anymore, ideologues would just cite other biased research instead.

It's just that ending the process with nothing else is just a win for them, it basically ends this issue as far as they are concerned. I'm just not sure if it even matters, given how little weight the promised review that will never come would have.

But it can't just be left hanging while they pretend that they're doing what they're supposed to do. IMO they made the point that they really don't care what happens to patients, loud and clear, and that evidence is irrelevant to the evidence-based model and how this organization works. Either way likely won't change the timeline where inevitably the paradigm will have to shift, most likely because of AI automating the entire process and making organizations like Cochrane superfluous.
 
rvallee said:
Actually I forgot to address this in my comment but, does it even matter? I'm not even sure if this review matters anymore, given the sheer mass of published research since. I'm really not sure what weight the original review still has, especially given the widespread hostility to the NICE guidelines and how little evidence actually matters to the EBM process. It's still cited, but citations are always cherry-picked anyway, if the review did not support GET anymore, ideologues would just cite other biased research instead.

It's just that ending the process with nothing else is just a win for them, it basically ends this issue as far as they are concerned. I'm just not sure if it even matters, given how little weight the promised review that will never come would have.

But it can't just be left hanging while they pretend that they're doing what they're supposed to do. IMO they made the point that they really don't care what happens to patients, loud and clear, and that evidence is irrelevant to the evidence-based model and how this organization works. Either way likely won't change the timeline where inevitably the paradigm will have to shift, most likely because of AI automating the entire process and making organizations like Cochrane superfluous.
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It matters a great deal because national health authorities around the world defer to Cochrane. Psychosomaticians who want to incorporate CBT & GET into ME/CFS guidelines could probably find other ways to do so without the Cochrane review, but for now it remains a very handy tool for them because it is so authoritative. If Cochrane were to update their review and not recommend GET anymore, this would reverse the power balance — patient representatives would have significantly more leverage (when considering that NICE, the IOM and the CDC all stopped recommending GET, too).
 
cassava7 said:
If Cochrane were to update their review and not recommend GET anymore, this would reverse the power balance — patient representatives would have significantly more leverage
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Which is exactly why the process has stalled. I am confident that they will manage somehow to blame patients and other critics for the stalling. And retain their power over us. It's quite clever really.
 
Sly Saint said:
However, there are still documents/manuals on CBT specifically for CFS (ME) that are apparently exempt from being 'updated' even though they include goal-setting for activities and exercise.
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just found another example which has started appearing on searches again

Cognitive Behavioural Therapy For Chronic Fatigue Syndrome by Kinsella

Code: 
https://books.google.co.uk/books?hl=en&lr=&id=PnD8DwAAQBAJ&oi=fnd&pg=PT8&dq=Cognitive+Behavioural+Therapy+For+Chronic+Fatigue+Syndrome+by+Kinsella&ots=M-ZkmqM-10&sig=ooWnUEkP-5HJJxONyhCuIu2p2LQ#v=onepage&q=Cognitive%20Behavioural%20Therapy%20For%20Chronic%20Fatigue%20Syndrome%20by%20Kinsella&f=false
a lot readable on Google books.
 
Had a flurry of activity over the weekend and wrote to Cochrane Trustees. no idea if I will get through. I also submitted another complaint the the Charity Commission about Cochrane's lack of complaints procedure or justification for not investigating. I put the whole (latest) saga on Twitter . I even tagged Gordon Guyatt, just for fun.

Dear Cochrane Support (cc Gillian Leng, Lorrraine Ross, Charity Commission)

I have asked at least once for you to forward correspondence regarding complaints to the governing board, and have never received a reply. I am not happy with how recent complaints have been handled by the CEO, and so I need to contact the Trustees. Please could you confirm you will forward this email to them?

A complaint against the Editor-in-Chief has not been investigated. The complaints procedure has also not been followed for a complaint about the Cochrane Library Oversight Committee and the poor management of the Exercise for CFS review update. I don’t see how “making a note” of complaints is a credible procedure for a Charity when serious concerns are raised, particularly concerning potential harm to its beneficiaries. The Charity Commission responded to my concerns by saying if decisions are made by the trustees and those decisions have been properly made within the law and the provisions of the charity’s governing document, then they won’t engage with the charity if people don’t like those decisions.

Please could you give me evidence that Trustees have seen and discussed my complaint about the Editor-in-Chief, and evidence that the decision not to investigate, despite the CEO’s earlier acknowledgement that it would be, has been properly made. Please can you also point me to the provision in the governing document which was used to make their decision?

I have copied in Gillian Leng on her NHS email address, as I corresponded with her on a related matter when she was CEO of NICE

Many thanks

Caroline
 
Hello

Had a response from the Charity Commission today, but nothing yet from the Cochrane Trustees. I have bolded and italicized a paragraph which is quite interesting. They have never contacted Cochrane Trustees before - not in connection with any of my complaints anyway.

Dear Caroline Struthers

THE COCHRANE COLLABORATION 1045921

Thank you for your emails of 21, 23 and 25 April and 24 and 25 June. I am sorry for the delay in responding to you.

We have considered your concerns again, together with the additional information you have submitted. We note that you have raised concerns about the accuracy of a report published by the charity, and whether the content could potentially cause harm to beneficiaries. We note that you have raised your concerns with the charity, and have received a response, but you are not satisfied with the charity’s handling of your complaint.

As you will be aware from my previous correspondence, we assess all concerns in accordance with our published risk and regulatory framework. Having carefully reviewed all of the information provided, we have determined that there are no regulatory concerns for us to act upon at this time, for the reasons set out below.

You have raised concerns regarding the charity’s editorial policy and its application, including the content of a specific published report.

It is not for us as the regulator to intervene in the charity’s editorial process; this is a matter for the trustees to decide, with the involvement of the charity’s senior staff if applicable. The role of the Commission is to ensure that charities are governed effectively, and that trustees’ decision-making is in accordance with their legal duties. We have not seen any evidence that decisions around the editorial process were in breach of any legal duties.

We have, however, taken this opportunity, in line with our usual processes, to remind the trustees that they must be aware of the importance of the charity’s reputation and be vigilant about the charity’s independence. In addition, the trustees should ensure that, in the context of the charity’s objects, what it is publishing has passed the appropriate standards of intellectual and academic rigour.

If you are unhappy that we are not taking forward your concerns you can raise a complaint through our complaint process: Complaints procedure - The Charity Commission - GOV.UK (www.gov.uk). To assist, it would be helpful if you read the guidance CC47, provide any additional evidence to support your concerns and explain why you think we should take forward your concerns.

You can raise a complaint about the Commission by emailing the Customer Service Team at: CustomerRelations@charitycommission.gov.uk

Yours sincerely

Rachel Walker
Intelligence Assessment Manager
 
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