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

I got a reply to my email this morning (reminder of email https://healthycontrol.org/2021/12/31/letter-to-gill-leng-nice/)

Dear Caroline

Thank you for your email regarding the Cochrane/NICE collaboration. I understand that you raise 2 key issues for NICE which I will address in turn.

Firstly, your concern about the ongoing Cochrane review into exercise therapy. It would be inappropriate for me to comment on decisions taken by Cochrane about the continuation of their review. From a broader perspective on NICE’s collaboration with Cochrane, we are developing a Guideline Support Document (GSD). This will be an operational guide that broadly aims to support the use of Cochrane reviews and topic expertise within Cochrane Review Groups in the development of NICE guidelines. We are currently compiling a working draft of the GSD for inclusion within the 2022 update to the guideline manual, where it will be subject to public consultation later this year.

We recognise the inherent value of reducing duplication of reviewing activity. However, we also accept that there will be occasions where undertaking separate reviews will be beneficial/appropriate. This is supported by the following extract from the working draft of the GSD:

“Discuss and seek agreement from the NICE quality assurance team for the rationale for the exclusion of a Cochrane review, at the earliest opportunity, if the guideline committee is of the view that it is not appropriate for consideration in the guideline and a new review is required. On occasion, it might be appropriate or beneficial for Cochrane and NICE to produce separate systematic reviews on a topic. For example, where differing perspectives (NICE’s UK focus versus Cochrane’s global perspective) may impact on how the question is framed, or where there are particular controversies or uncertainties in a research area and replication of a review could be helpful.“

Secondly, in terms of the quality assurance of Cochrane reviews. As above, we recognise that there will be occasions where replication of a review to ensure NICE’s needs are met will be appropriate (for example, where differences in PICOs, methodological approach etc between NICE and Cochrane might be entirely reasonable). As you say, our guideline development and quality assurance processes are designed to mitigate risk. Importantly, the GSD also provides mechanisms for linking guideline developers, the NICE QA team, Cochrane authors and the Cochrane editorial (QA) team for surfacing and understanding points of divergence which will be key in informing ongoing development of systematic reviewing and guideline development methods and processes.


Yours sincerely,

Professor Gillian Leng CBE
Chief executive

National Institute for Health and Care Excellence
2nd Floor, 2 Redman Place
London
E20 1JQ
 
MEMarge said:
Thanks for all you are doing on this @Caroline Struthers, the above reply is encouraging.

Gillian did mention her husband's death, when she announced her decision to step down from NICE.
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I missed that. Very sad.

She said she had plans on what to do next...and she was going to carry on working. So I do wonder whether she might take on Cochrane. They could do (have done) a lot worse. But unless the new CEO admits there is a problem with conflict of interest affecting review conduct, then nothing much will change. Also, to have a database of reviews which are not updated yet stay on the Cochrane Library as supposedly usable useful documents is absolutely bonkers. A review is not a useful thing unless it's up to date. That's what Gillian Leng was saying yesterday - in NICE's case they take over a decade to update guidelines - and she realises that's not helpful. It most certainly isn't. It's like doing a review of a drama production, and then when someone else does a new production, using the review you wrote for the old production to help people judge whether to go see the new production.
 
Caroline Struthers said:
I got a reply to my email this morning (reminder of email https://healthycontrol.org/2021/12/31/letter-to-gill-leng-nice/)

Dear Caroline

Thank you for your email regarding the Cochrane/NICE collaboration. I understand that you raise 2 key issues for NICE which I will address in turn.

Firstly, your concern about the ongoing Cochrane review into exercise therapy. It would be inappropriate for me to comment on decisions taken by Cochrane about the continuation of their review. From a broader perspective on NICE’s collaboration with Cochrane, we are developing a Guideline Support Document (GSD). This will be an operational guide that broadly aims to support the use of Cochrane reviews and topic expertise within Cochrane Review Groups in the development of NICE guidelines. We are currently compiling a working draft of the GSD for inclusion within the 2022 update to the guideline manual, where it will be subject to public consultation later this year.

We recognise the inherent value of reducing duplication of reviewing activity. However, we also accept that there will be occasions where undertaking separate reviews will be beneficial/appropriate. This is supported by the following extract from the working draft of the GSD:

“Discuss and seek agreement from the NICE quality assurance team for the rationale for the exclusion of a Cochrane review, at the earliest opportunity, if the guideline committee is of the view that it is not appropriate for consideration in the guideline and a new review is required. On occasion, it might be appropriate or beneficial for Cochrane and NICE to produce separate systematic reviews on a topic. For example, where differing perspectives (NICE’s UK focus versus Cochrane’s global perspective) may impact on how the question is framed, or where there are particular controversies or uncertainties in a research area and replication of a review could be helpful.“

Secondly, in terms of the quality assurance of Cochrane reviews. As above, we recognise that there will be occasions where replication of a review to ensure NICE’s needs are met will be appropriate (for example, where differences in PICOs, methodological approach etc between NICE and Cochrane might be entirely reasonable). As you say, our guideline development and quality assurance processes are designed to mitigate risk. Importantly, the GSD also provides mechanisms for linking guideline developers, the NICE QA team, Cochrane authors and the Cochrane editorial (QA) team for surfacing and understanding points of divergence which will be key in informing ongoing development of systematic reviewing and guideline development methods and processes.


Yours sincerely,

Professor Gillian Leng CBE
Chief executive

National Institute for Health and Care Excellence
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I think these are two excerpts from your email to Gillian Leng:
"It was a shocking revelation, via Freedom of Information, that a person who is on first name terms with you and also acknowledged to be connected with the Royal College of Psychiatrists, put pressure on you to alter the NICE review evidence reports after recommendations based on those reports had been agreed and signed off by the Guideline Development Committee [9]"

"Rather than deliver the hoped-for time efficiencies and value for money, it could further obscure corrupt forces at work within the clinical research establishment. This could result in recommendations based on biased or corrupted appraisals of the evidence. This is not in the best interests of patients."

Anyone - did Gillian answer either of these?
 
Especially since the old reviews are still published (and no, the advisory text changes nothing, clearly, as it's still being cited and overlooked) because this review process is still happening. Allegedly.

I frankly wouldn't mind if the old reviews didn't stand, but keeping them on the premise that something is happening while nothing is happening is, well, frankly on brand for Cochrane.

Odds that we see a positive review of exercise for Long Covid before anything happens here are pretty high. Probably from the same authors in the same working group. Now that would be peak Cochrane and eminence-based medicine.
 
Having just seen a random mention of the Cochrane exercise review in the wild, on a Reddit thread about the NYT article about LC and PEM, I had another look at the notice from the editor and it really doesn't say anything.

The comment just quoted from the review's conclusion about how blah blah blah so I thought I'd leave the quote on the review saying it's deprecated but really it says nothing of the sort, just that there's some change in procedure and blah blah blah another review blah di blah word from the editor blurgh.

Not that it matters, but that notice may just be about the most useless disclaimer put on anything. It says nothing at all and simply waits for this interminable process to... do whatever it's probably not doing. While apparently two other reviews for CBT and GET are happening from the same group of people.
 
Caroline Struthers said:
I missed that. Very sad.

She said she had plans on what to do next...and she was going to carry on working. So I do wonder whether she might take on Cochrane. They could do (have done) a lot worse. But unless the new CEO admits there is a problem with conflict of interest affecting review conduct, then nothing much will change. Also, to have a database of reviews which are not updated yet stay on the Cochrane Library as supposedly usable useful documents is absolutely bonkers. A review is not a useful thing unless it's up to date. That's what Gillian Leng was saying yesterday - in NICE's case they take over a decade to update guidelines - and she realises that's not helpful. It most certainly isn't. It's like doing a review of a drama production, and then when someone else does a new production, using the review you wrote for the old production to help people judge whether to go see the new production.
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Very interesting and definitely thank you for doing this.

I wonder whether also the conflict of interest issue and some of the strange ways it has been manage for political 'surface looks' (sorry anomia for right word) purposes also is creating issues for career paths, spread of talent and throughput, new areas being able to break through etc as well as 'collection of power'. If you can claim a controversy and '2 sides to a debate' (are there really 2 sides or area there all the science ideas and 1 idea from BPS so lots of 'sides') it seems to buy you half the places on whatever. A good reason for people to feel they can't set up a new area but instead tread the same furrows.

But also if really it is just a niche of a few people collecting positions then it is like bed-blocking the pipeline for new talent (who vice versa learn and keep the institutions dynamic/from becoming stale) with new perspectives or open and fresh minds. You only have to look at how many positions certain individuals have manage to get themselves involvedwith, including conflicts, to think it's obviously a power and conflict issue but those are also jobs that could be going to someone younger and perhaps less thinly spread and more specifically involved and able to devote time to the task and wanting to.

No wonder the medical profession isn't doing great on the recruitment and retention front - they are getting hogged by a few,and indeed the way things look and conditions they work under are being influenced by a small number who are because of these numbers of extras further and further removed from the opportunity and competition combined with day to day experience of those without all those positions. Plus there become the uncritiquables because they will always be a walk-in for some position that is above you and will in some way have power over your destiny.

Why does someone have to have a view and a conflict in order to be part of a panel - sorry if that is a dumb question but it seems to almost be the norm. I wonder whether for something like CFS the 'working in the area' bit was ever massively essential. There might have been better more precise designations that fit something more specific on what was needed there (like knowing enough about it, experience in it) alongside having a mind that can genuinely be objective and not bring bias or prejudice etc.

I'd hope that as scientific research would hopefully start to be looked at more seriously as something to be developed and have a strategy for there will be designated positions for scientists from the likely systemic areas like rheumatology, immunology, heamotology and so on for reviews. Who you put on a panel can innately link a guideline to only really considering behavioural-type options -even if they are 'pacing' instead of GET it's telling people to reduce their life - to what is a really extreme point when it is anything more than mild and even then it doesn't seem fair when you feel there might well be a few things that wouldn't take much for them to work out might help.

How can Cochrane manage to deal with that change? or does an illness get siloed forevermore?
 
Adrian said:
Should we assume that Cochrane have just given up with this review? They were promoting it at the last CMRC conference which is almost 2 years ago yet there seems to be no measureable progress. It doesn't look good for Cochrane in how they don't take patient harm or evidence seriously.
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Please can you give us an update @Hilda Bastian? I had great hopes at the start of this project but I have become increasingly disillusioned with it and I now feel very badly let down. I don’t know what has been going on behind the scenes or who is to blame but it is hard to imagine any other group of patients being treated this way.
 
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I went to Curry's yesterday to see if me daughter's inkjet printer (under guarantee) was mended and ready for pick-up. Curry's apologised and said that Canon had not even come to collect it. So they offered me a free replacement.

Maybe we should get a free replacement on this review?
 
In hindsight, maybe the whole "we'll keep the old review until there's a new review" kind of left a gigantic loophole for never getting a new review that satisfied everyone but us. Especially with a new review from the BPS gang that will likely be mostly identical to the old one.

The new Cochrane, exact same as the old Cochrane.
 
Jonathan Edwards said:
I went to Curry's yesterday to see if me daughter's inkjet printer (under guarantee) was mended and ready for pick-up. Curry's apologised and said that Canon had not even come to collect it. So they offered me a free replacement.

Maybe we should get a free replacement on this review?
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Have Cochrane ever guaranteed that their products would actually work though?
 
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