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

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

 

Ah, Zen and the art of the deliberate IT snafu.

 

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.

 

'computer says no'

 

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!

 

Regulatory capture is a wonderful thing... for the captors.

 

But when the tables start to turn they know no other strategy, so still persevere with strategies that used to work, but start to expose them for what they really are, as awareness spreads.

 

https://twitter.com/user/status/1374081121139429380

 

Her reply:

Hesitate to give a date now. What date is the new NICE guideline release?

ETA: People have answered it's on 21. April, upon which she replied:

Thanks! Updating some things is taking longer than I expected, but we're getting there: shouldn't take anything like that long.

 

Can someone please explain, is this just going to be a progress report on where things are with the new review of GET? I had been thinking we were going to get the actual final review. Confused.....

 

Good question. I have lost the plot entirely. It is not as if there was anything for intelligent people to discuss.

 

Reassuring it's not just me!

 

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.

https://twitter.com/user/status/1374088533124730894

https://twitter.com/user/status/1374096611652042759

 

I know this might seem like a non-sequitur but I think I might go back and watch 'Yes Minister'

Maybe Sir Humphreys might have a clue.

 

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.