NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, 2024, Barry et al.

I bet Susie Dent could come up with some corkers.

If I had an account, I might even ask her! She's on Twix as @susie_dent, for anyone who doesn't know her.

 

The lexicographer on British gameshow Countdown and on the comedy version of that same show. Also the reason I have a vague understanding of what a lexicographer is, someone that knows a lot about words.

 

Paywall now installed again.

PDF still accessible via web.archive:

https://web.archive.org/web/2024052...np/early/2024/02/28/jnnp-2023-332731.full.pdf


(@SNT Gatchaman -- perhaps add the link to the opening post?)

 

Sad face.
That’s a big shame

 

The post is too old to edit I think. A moderator might be able to add in for us. (done)

 

-edit- ignore my post, it's pre coffee. - end edit-

Wait a second... It's also saying there are no rapid responses now .
Sigh, time to write another letter - they sure do like erasing our voice.

 

Where there rapid responses to the rebuttal too?

Or do you mean the two RR to the anomalies paper?

The latter are still there: https://jnnp.bmj.com/content/94/12/1056.responses

 

Thank you for pointing that out! I misread the title. Still sneaky of them but a different issue from what I thought.

 

Garner and co have written a rapid response to this paper:

https://jnnp.bmj.com/content/95/7/671.responses#the-revised-nice-me-cfs-guideline-neither-robust-nor-thorough”

"We conclude by calling for these guidelines to be withdrawn, the analyses of data to be redone, and the guideline recommendations to be re-formulated."

I suspect there's a lot going on behind the scenes to get this guideline withdrawn.

 

"Choosing the wrong trial end-points
-----------------------------------------------
A major concern is selective reporting. For example, data from trial primary end-points at 12 months follow-up was left out. This led to the incorrect conclusion that neither CBT nor GET are effective treatments. We re-analysed the data, using Cochrane methods. We compared GET with usual medical care at 12 months, and found there were double the number of people feeling “much better” or “very much better” after GET (RR 2.29, 95%CI 1.69 to 3.10; 3 trials, 464 participants); (paper submitted for publication.)"

Oh good!

 

So is this also an indicator of who is holding up any action in relation to the Cochrane exercise review?

 

I find it rather humorous that it was Garner himself who has full of apraise for pacing during his "Long-Covid journey". So it is pacing, scuba-diving, CBT or does it all not really matter when the majority recover from post-viral fatigue?

 

Jon Stone and Alan Carson have also signed that statement. I know they are FND experts but as far as I'm aware they have never researched or published about ME/CFS.

 

They've created a nice little cabal, with Garner providing a link to Cochrane and acting as an authority on evidence synthesis.

 

Don't forget they did a lot of challenging of the evidence review before NICE made and published its new guidelines. Its head of evidence review got involved and endorsed the findings. None of the objetions raised above seem to address the core issue of using subjective outcomes in unblinded studies (where long-term outcomes are null and objective outcomes likewise, both supporting the likelihood of self-report bias).

BPS advocates have had over a decade to address these issues yet continue to duck them.

 

Ridiculous that the rapid response is free to read but the Barry et al article is behind a paywall.

Notable that SW is a signatory.

From COIs:

“SW reports honoraria from two talks on psychological impacts of COVID to Swiss Re during the pandemic, but neither covered CFS nor Long Covid.”​

But no mention of Sharpe’s talk(s?) to Swiss Re on Long Covid: https://www.swissre.com/dam/jcr:788...vid19-impacts-presentation-michael-sharpe.pdf

 

Chalder et al write:

“Yet, a systematic review of trials of CBT showed that the presence or absence of PEM made no difference to the positive results of this treatment. (6)”
​

Apart from the word “positive” that statement is almost right. What PACE showed us is that GET and CBT don’t work however loosely or badly ME/CFS is defined.

[edit: typos]

 

I know but it's a bit weird to call for a NICE guideline to be withdraw on a topic that you have never published on, or have done any research on.