Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

[Jonathan Edwards]

It has been accepted for review.

Is this a full paper rather than a letter then, @adambeyoncelowe ?
Presumably accepted for review just means received into the review process? Ort at least deemed suitable to be in a suitable format for a reviewed paper.

My guess is that it would be quite hard for reviewers to turn it down.

 

[adambeyoncelowe]

Is this a full paper rather than a letter then, @adambeyoncelowe ?
Presumably accepted for review just means received into the review process? Ort at least deemed suitable to be in a suitable format for a reviewed paper.

My guess is that it would be quite hard for reviewers to turn it down.

I think it's a full paper, and that's why it's taken so long. Peter referred to it as a "rebuttal paper".

As you note, it's just been successfully submitted into the review process. I can see that Peter's email actually says it's been "submitted for review", and not "accepted for review". I'll correct that wording upthread so I don't get anyone's hopes up too much!

I agree it would be very difficult to refuse to publish it at all. They would be expected to give NICE their right of reply.

 

[Jonathan Edwards]

I think it's a full paper, and that's why it's taken so long. Peter referred to it as a "rebuttal paper".

That sounds promising.
The main hurdle would then be the journal considering the format acceptable for review as a peer reviewed paper - which it has passed.

It now looks as if all that White has done is give Peter Barry an open invitation to justify the committee decision publicly in as much detail as he wishes. The responses at the Round Table will now be in print.

And every single one of White's coauthors will have egg on their faces.

 

[adambeyoncelowe]

That sounds promising.
The main hurdle would then be the journal considering the format acceptable for review as a peer reviewed paper - which it has passed.

It now looks as if all that White has done is give Peter Barry an open invitation to justify the committee decision publicly in as much detail as he wishes. The responses at the Round Table will now be in print.

And every singleton of White's coauthors will have egg on their faces.

Exactly. This could work out very well for us.

 

[obeat]

And this time it's doctors vs doctors ,not doctors versus militant activists

 

[Jonathan Edwards]

It is perhaps interesting that the one person who is missing from the author list who might have been expected, although I credit her with more intelligence than the rest, is Lynne Turner-Stokes, who was of course present at the Round Table.

 

[MSEsperanza]

it's just been successfully submitted into the review process.

I expect JNNP people have already shared it with all the authors/ signatories of the anomalies piece and want to give them the opportunity to publish their reply together with the rebuttal paper by NICE?

I wish I could share others' optimism.

While it's true that I can't think of a reply by White, Chalder and their co-NICE-bashers that makes sense, it also seems more and more people in power say a lot of nonsense and that doesn't stop too many other people, including other powerful and even otherwise intelligent people, following and supporting them.

So even if I expect that the rebuttal by NICE will be sound, I still am afraid that those attacking NICE will continue to behave silly but also continue to be influential.

Wondering if it could make sense for ME Action UK and other patient organizations to consult with the JPPN patient editorial board?


Edit: To clarify, replaced "NICE's rebuttal" with "the rebuttal by NICE",

 

[SNT Gatchaman]

A comprehensive rebuttal paper could represent a "be careful what you wish for" scenario for the "Anomalies" authors.

It is difficult to understand the disconnect between the initial 2007 guideline that recommended CBT and GET, for which the research evidence has strengthened over the following decade, and the recent guideline that removes GET, qualifies CBT and replaces them with ‘energy management’, for which there is little evidence.

They now risk themselves having that "difficulty to understand" publicly rectified in excruciating detail — hopefully with a side serving of schooling in scientific and ethical principles, even if only between the lines.

Having been prepared I expect it to be published, preferably by JNNP so that the initial audience is reached. But if not, well NICE is itself a publishing authority with stature at least on par with JNNP and BMJ.

 

[FMMM1]

I know a lot less than those wo have posted above, but yes --- if your case is weak then why protest and, in effect, ask others to re-consider your (weak) case ---. Doesn't seem to be the most strategic move --- but as per Jonathan's comment here* --- it may be more about hurt pride.
I wonder it Peter Barry will bother to respond e.g. more than a comment "nothing new in this [White et al] publication --- this was all considered by the NICE Review---". If Peter decides that a more substantive rebuttal is in order, e.g. to defend NICE, then it could all get a bit messy for White et al.

*"The simple and terrible truth for these poor people can be found in the bible:

Mene, mene, tekel upharsin."
https://www.s4me.info/threads/chron...c-fatigue-consortium.35388/page-3#post-495402

 

[Dolphin]

White et al. will presumably get the final word. This can be very frustrating as I have experienced with published letters of mine where the authors write a frustrating response. Though then I have been in the reverse scenario where you get the final word in print which is more enjoyable.

 

[FMMM1]

White et al. will presumably get the final word. This can be very frustrating as I have experienced with published letters of mine where the authors write a frustrating response. Though then I have been in the reverse scenario where you get the final word in print which is more enjoyable.

Yea but "hurt pride --- we know we're right ---", in response to Peter Barry/NICE, may be read (by an intelligent impartial observer) as "hurt pride --- we know we're right ---". All a bit of a pain since all they'd have to do, to demonstrate they're right, is to objectively measure the outcome over a reasonable period (post intervention) --- but oh NICE applied that test and as per Jonathan* -- the writing is on the wall.
All a bit tedious, but if they insist on crashing ---


*"The simple and terrible truth for these poor people can be found in the bible:

Mene, mene, tekel upharsin."
https://www.s4me.info/threads/chron...c-fatigue-consortium.35388/page-3#post-495402

 

[Dolphin]

Peter White is a tricky foe. I think he may be able to write some sort of response which might at least partly convince some readers. Time will tell.

 

[Jonathan Edwards]

I expect JNNP people have already shared it with all the authors/ signatories of the anomalies piece and want to give them the opportunity to publish their reply together with the rebuttal paper by NICE

I don't really see a case for a rebuttal of a rebuttal.

The sequence is often: 1. Paper, 2. critique, 3. reply in defence.
Here, paper 1 is replaced by the NICE guidelines. The critique 2 is the White paper. NICE have a right of reply 3, but it is very rare for a critic to get a second turn.

White et al are not the targets entitled a defence here. NICE is.

Moreover, any suggestion that White and his friends ARE the original targets simply emphasises their conflict of interest.

My information is that Peter Barry and co are likely to have taken this seriously and probably produced a slightly lengthier and watertight version of what we had at Round Table. It is all done and dusted as far as I can see.

 

[Solstice]

I don't really see a case for a rebuttal of a rebuttal.

The sequence is often: 1. Paper, 2. critique, 3. reply in defence.
Here, paper 1 is replaced by the NICE guidelines. The critique 2 is the White paper. NICE have a right of reply 3, but it is very rare for a critic to get a second turn.

White et al are not the targets entitled a defence here. NICE is.

Moreover, any suggestion that White and his friends ARE the original targets simply emphasises their conflict of interest.

My information is that Peter Barry and co are likely to have taken this seriously and probably produced a slightly lengthier and watertight version of what we had at Round Table. It is all done and dusted as far as I can see.

If he's as annoyed as we are I fully expect NICE to tear them a new one. Which might give us a good piece to work with in advocacy when something like the Oslo thingy pops up again with the same people involved.

 

[Jonathan Edwards]

The thought of Oslo thingies popping up threatens to give rise to nightmares reportable on the dreaming thread I guess.

Hard to contemplate.
What colour would they be? Greenish-pink?

 

[Kitty]

Hopefully the thingies will become like the northern lights in Oslo—don't pop up very often, and faint when they do. But they might look greenish-pink on a photo.

 

[Kitty]

But anyway, back to the topic—unusually, I have got my hopes up on this one. It's unlikely to shut White et al up, but if it's done as well as I hope, it's another line in the sand.

 

[rvallee]

It is perhaps interesting that the one person who is missing from the author list who might have been expected, although I credit her with more intelligence than the rest, is Lynne Turner-Stokes, who was of course present at the Round Table.

And Crawley, unless I'm mistaken. Even though she is still doing the same things.

But given her work with Ladhani on CloCK, who was an author of a recent analysis trying to downplay Long Covid as non-existent, it's not really any different. But her absence here is still notable.

 

[rvallee]

A comprehensive rebuttal paper could represent a "be careful what you wish for" scenario for the "Anomalies" authors.



They now risk themselves having that "difficulty to understand" publicly rectified in excruciating detail — hopefully with a side serving of schooling in scientific and ethical principles, even if only between the lines.

Having been prepared I expect it to be published, preferably by JNNP so that the initial audience is reached. But if not, well NICE is itself a publishing authority with stature at least on par with JNNP and BMJ.

That expects a lot out of NICE. They may have done right thing once, but it's likely more because there were people present who did not allow the whole thing to be biased. I'm not entirely sure this is a mistake they will allow to happen again. There's a good chance for a good response from NICE because the ideologues attacked their integrity. That's never a smart thing to do, few will make that mistake, and they'll be a bit smarter about it next time.

The presence of patients in research and guideline evaluation is still largely perceived as a silly thing by most MDs, an attitude that may turn into hostility if it overturns old belief systems. As we all know, knowledge in science is immutable and cannot change. As the present opinion paper basically argues.

NICE has a model that allows it, but recent overtures to work with Cochrane instead, who don't bother with such things and are far more secretive, doesn't suggest too many good things. It's also not the norm to be this open, usually this happens in such secrecy that we only ever find out anything once it's published and face a blank wall to any questions asked.

 

[Hutan]

NICE has a model that allows it, but recent overtures to work with Cochrane instead, who don't bother with such things and are far more secretive, doesn't suggest too many good things.

The presence of Gillian Leng, who was in charge of NICE when the ME/CFS Guideline was produced, on the governing board of Cochrane, is such an interesting twist to it all. I'm not sure how much certainty we have that she was the one receiving encouragement to overturn the findings of the NICE evidence review, but my impression was that it was probably her. And she seemed to resist that encouragement.

So, particularly once this NICE rebuttal is out, I think we can ask the governing board of Cochrane how they can leave the 2019 Larun review in place.