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

dave30th said:
This was the strategy BMJ used to hide for over a year the fact that the Lightning Process study was being examined for serious ethical and methodological violations. They put an editorial note on the paper, but it was on a completely different page that no one would have thought to look at. So no one reading the paper knew there were problems. I complained about this directly to Dr Godlee and she wrote back and said the BMJ's IT systems made it challenging to move the notice to the same page as the article itself. Yeah, right.
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If you look at the wider issue of IT systems in UK ( Brexit, PPE procurement, Test & Trace app..), then we do seem to have an intrinsic problem with IT - it continues to servve some well though
 
dave30th said:
This was the strategy BMJ used to hide for over a year the fact that the Lightning Process study was being examined for serious ethical and methodological violations. They put an editorial note on the paper, but it was on a completely different page that no one would have thought to look at. So no one reading the paper knew there were problems. I complained about this directly to Dr Godlee and she wrote back and said the BMJ's IT systems made it challenging to move the notice to the same page as the article itself. Yeah, right.
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And as someone who has programmed many similar content publishing systems: complete BS. Their core business is mostly digital publishing, it is one of their core competencies. It's implausible deniability. The very nature of information makes it infinitely pliable to any demand and this is a very basic one.
 
rvallee said:
And as someone who has programmed many similar content publishing systems: complete BS. Their core business is mostly digital publishing, it is one of their core competencies. It's implausible deniability. The very nature of information makes it infinitely pliable to any demand and this is a very basic one.
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I wasn’t on the technical side but I was involved in writing content and making it understandable for general public. If there is not a technical solution the backstop is always a simple option of doing a message on the same page above the text. We had experience of doing changes that had to be delivered at latest same day, in practice literally as soon as they could be written and pushed live.

i would write a sentence with a link to the page where the full message is. NOT rocket science by any stretch of the imagination
 
dave30th said:
This was the strategy BMJ used to hide for over a year the fact that the Lightning Process study was being examined for serious ethical and methodological violations. They put an editorial note on the paper, but it was on a completely different page that no one would have thought to look at. So no one reading the paper knew there were problems. I complained about this directly to Dr Godlee and she wrote back and said the BMJ's IT systems made it challenging to move the notice to the same page as the article itself. Yeah, right.
Click to expand...
rvallee said:
And as someone who has programmed many similar content publishing systems: complete BS. Their core business is mostly digital publishing, it is one of their core competencies. It's implausible deniability. The very nature of information makes it infinitely pliable to any demand and this is a very basic one.
Click to expand...
NelliePledge said:
I wasn’t on the technical side but I was involved in writing content and making it understandable for general public. If there is not a technical solution the backstop is always a simple option of doing a message on the same page above the text. We had experience of doing changes that had to be delivered at latest same day, in practice literally as soon as they could be written and pushed live.

i would write a sentence right at the top of the main review with a link to the page where the full message is. NOT rocket science by any stretch of the imagination
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Absolutely. They don't realise - or maybe just don't care - how transparent their BS feeble excuses are. Who do they think they are kidding!
 
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As far as I understand from Hilda’s tweets all we’re getting is a progress report. (On 16/01/21 she tweeted “Very belated progress report will be ready soon.”) I hope that will include an explanation of why we haven’t had any news on progress for over a year. As far as I’m aware we still don’t even know who is in the IAG or how they were selected – or indeed if they have been selected yet.

I hope I’m wrong but I’m wondering if process has been stalled to see if NICE capitulates to the BPS enthusiasts in the new guideline.


 
I would feel a lot more accepting of the delay in the production of a new 'exercise for ME/CFS review' if Cochrane didn't still have a badly flawed exercise review up on its site, right at the very time when the global population of people with ME/CFS appears to be increasing massively, and therefore, right at the time when all these hundreds of thousands of people and the medical professionals who care for them most need good guidance.
 
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A summary...

The authors refused to allow the withdrawal of the Exercise review, despite David Tovey's (previous Editor in Chief) request that they do so. In October 2019 Cochrane published the amended version which still says there is moderate evidence that Exercise is effective for people with ME/CFS. At the same time they announced they were going to update the review because the methods were outdated, the population included people without ME/CFS. https://cochrane.org/news/cfs.

"I can confirm that work will begin on this new review at the beginning of 2020 and that we will keep patient groups regularly informed of progress during the subsequent months.”

In Feb 2020 they announced Hilda Bastian would lead an independent advisory group to help with the new review https://cochrane.org/news/appointment-lead-independent-advisory-group

The advisory group idea is a "pilot" for involving patients and the public in "high profile" reviews. https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot.

"The complete updating process for the review is expected to take about two years from early 2020"

The FAQs page has not been updated for over a year, although I know that many questions have been asked frequently on Twitter and by email, mainly along the lines of "what's happening?"

In the meantime, although there was some delay, progress was made on the NICE guidelines which. Unless NICE decide between now and 21 April to promote the grading of the evidence from "low" and "very low" to "moderate", the guidelines will contradict the findings of both Cochrane reviews.

If newly diagnosed ME patient does some research and then goes to their doctor waving the 2019 Cochrane review, they could demand to be prescribed graded exercise, which could harm them. Same with the CBT review which is even more enthusiastic about CBT as an evidence-based way to recover from ME/CFS. Is the doctor really going to argue with a patient with a Cochrane review in their hand, unless they are aware of all the kerfuffle, and know the NICE guidelines have changed?

People are encouraged to read plain language summaries of Cochrane reviews where caveats about outdated methods, or omission of more recent studies are not displayed. Many people in the world only have access to the summary of Cochrane reviews, and nothing else. It is usually only the summary that will be translated into other languages. Many countries use Cochrane reviews wholesale to inform their national clinical guidelines. Many people live in countries where there are no national clinical guidelines.
 
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