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

I was surprised and very pleased the Rapid Response was published by the journal. Surprised because it is very critical not only of the article, but of the group of researchers. All absolutely true - they are indeed clinging on to their pet theories against all the evidence, not collectiong data on harms, causing immeasurable harm, and denigrating sick people.

Such speaking truth to power is essential, but not normally seen in a scientific journal, even when the criticlsm is wholly justified, and it is indeed speaking truth to people with far too much power.

I am disgusted, but not surprised the rapid response has been removed.
 
Lidia Thompson said:
ME/CFS News has just pointed out that Alan Carson and Jon Stone are editors of the JNNP.

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Is this conflict of interest declared in the very long list of conflicts of interest? Because approving your own letter, about your own work, is just so many layers of bias and conflict of interest. As ridiculous as a judge declaring themselves innocent for a case they judged themselves, about close colleagues with whom they share a huge amount of bias and conflicts of interest.
 
They went with a BS excuse of inflammatory language. These people are not polite to us. They make actual inflammatory claims about us seeking secondary benefits and cause us actual egregious harm.

Even their own letter is inflammatory to NICE and the people who were involved in the guidelines. They keep defaming people like David Tuller who point out numerous errors in their work. What a load of corrupt hypocritical crap.


Please note that a previously posted Rapid Response was taken down because of inappropriate inflammatory language. While we encourage scientific discourse, it should be polite and non-defamatory.

Per BMJ policy: "All rapid responses are reviewed by a journal editor and may be edited before posting. In some circumstances rapid responses will not be posted. The editor’s and publisher’s decision is final in all cases. Due to the high volume of responses we receive, you may not receive a notification if we choose not to publish your response."

The terms for Rapid Responses include "We aim to provide a forum for those with differing opinions to debate in good faith the often controversial topics we cover but we do not accept hostile or hateful speech of any kind directed at any individual or group. Please remember that the language used in your response should reflect the fact that BMJ's journals are part of the evidence base of medicine, used globally."
 
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MEAction's rapid response is strongly worded and good on them for calling it like it is. BPS doctors are absolutely ableist and are harming us. But if the BMJ isn't allowing MEAction to use this tone, I hope the BMJ will tell them what to change and they get to publish an edited version.
 
Arvo said:
I'd give it a day or two before drawing conclusions, indeed:



I'm assuming it would have been an easy edit to remove the double text, but it's still possible someone removed it yesterday afternoon for editing and has it on their schedule for reposting this morning.

That being said, glad there's an eye on it. The bps movement is hell bent on disarming the "problem" that is the NICE guideline, because if they don't have GET for ME, everything falls apart (including CBT). And from what we know about @InitialConditions 's FOI request, they are willing to go extremely far to make it go away.

This is speculation, but I would not be surprised if NICE is currently also the recipient of a pressure campaign to not write or water down their firm response. I hope it will only strengthen their resolve to stand up for their own work and for the patients.
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Sensible predictions - can these be FOI'd too in order to see if that is the case?

I guess the journal doesn't have anything along the lines of FOI to find out any behind the scenes stuff as it isn't public funded?

... Would probably then narrow down the list very convincingly (for any doubters who aren't into the linguistic connections pointing to certain possibilities) to one of the writers/signatories (depending on whether your definition of being a writer/contributer to the articles is consistent with what was claimed) of this article?
 
Lidia Thompson said:
ME/CFS News has just pointed out that Alan Carson and Jon Stone are editors of the JNNP.

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I often have that sense of not wanting to publicise little known journals or articles that people wouldn't read if it weren't for the replies (ie the whole 'getting publiciy by causing ourage thing) vs the level of stupidity that can come from leavin unchallenged silly manifestos for too long and people getting brainwashed who might read it anyway simply because it is their area.

Can we do something like start calling the journal 'Carson and Stone's JNNP [editors]'?

EDIT: so that it reads accurate something like 'Carson and Stone's [as Editors of it] JNNP have decided to reject the comment/response of MEAction to the article for which Carson and Stone are joint writers (or whatever the term used was in saying it was jointly done)'?

...in order to make the 'conflict' of interest (is it even just 'conflict' if it is your own article you've sent in to yourself to decide 'shall we publish this?', surely that is a new level you can't just declare out of), at this point it is the conflict of the journal/editors accepting/publishing it without having some sort of extreme Chinese wall in place (who would want to upset the editors if you want a career in that Journal so it would need to be someone v independent and v high up to not feel their career was affected) rather than the other way around isn't it?

How does this all work?
 
Ah yes, if you can't refute unwelcome criticism, play the old tone policing card. You get to throw shade on the criticisers while rerouting the discussion to wheter the criticiser was rude or not.

So...the editor at first approved "inappropriate inflammatory language" that was not polite and non-defamatory eh? Must have been quite....subtle, that language. Difficult to see with the naked eye one might say.

It might be a cultural thing, but I can't find ""inappropriate inflammatory language" or defamatory language, or hostile or hateful speech in the reply. I'd really like to see the specifics pointed out by the journal, they need to go beyond vague blanket statements.

In fact, ironically, I personally think by saying and implying the ME Action reponse was these things, I think the JNNP is using inappropriate inflammatory and defamatory language themselves.

As for not being polite, I didn't think the response was impolite. It was open and direct, yes, but that's not the same as impolite. Saying something that is unwelcome to hear by the receiving party doesn't make it by definition impolite. Also, insisting on "politeness" from people who point out they have been treated unjustly is the basic tone policing manoeuver used to deflect unwelcome but difficult to refute criticism on the status quo.

Looking at ME Action's response, maybe if you squint your eyes, the term "pet therapies" and the remark that the use of the term cfs/me throughout appears to be calculated to insult the patient community might be construed as non-polite. However, the journal editor did not pick it up when they reviewed the response for posting.
If they found it really necessary to change it post hoc, they could have contacted the response authors to ask to change "pet therapies" to "preferred therapies", and the sentence on cfs/me to "We consider the use of the term cfs/me throughout the article an insult to a community that has long suffered neglect and stigmatisation by the medical hierarchy."

Done, easy peasy. Ironing out a couple of wrinkles in a good and strong reply.

The fact that they did not do this, but instead chose to remove the whole reply and then post a statement that gives the impression that ME Action was using inappropriate, inflammatory, defamatory, hateful and -gasp- impolite language speaks volumes IMO.
 
adambeyoncelowe said:
Technically, "common abuse" isn't defamation. So you can't get sued for calling someone a wanker, no matter how much they may dislike it. It could be hate speech if motivated by other things, but it's not defamation.
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I recall the right wing pundit Darren Grimes threatening action over a widely circulated story that he had been nicknamed “crafty wank” at school after being caught indulging in onanism under his desk. So I should still make it clear that the editors involved are only figuratively wankers.
 
Arvo said:
The fact that they did not do this, but instead chose to remove the whole reply and then post a statement that gives the impression that ME Action was using inappropriate, inflammatory, defamatory, hateful and -gasp- impolite language speaks volumes IMO.
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And it is saying that the editor and publishers are cowards.

Did they get threatened with a defamation writ?
 
dave30th said:
This might already have been responded to--I haven't read the whole thread. They are completely in bed with the PACE team and the rest--the leading FND experts, Jon Stone and Alan Carson, studied under Prof Sharpe in Edinburgh, as I understand it, and are now close colleagues. The FND people have a huge stake in this debate. This is why I have been trying to point out their constant misinterpretation of prevalence rates and other stunts they have tried to pull with their data. The fields are intimately connected.
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Jon Stone and Alan Carson are editors on the BMJ? who they were trained by and the foundation of their knowledge is important and well after finding this I need a bucket of coffee.

How long has the name of FND been coming and why? What research are they able to influence medicine on? It would appear that no mater the evidence they have it covered? Functional lesions were expected but show hysteria? One lady was telling me gleefully that she did not have enough lesion's to have MS so she has FND. I was blown away by her statement. so I dug a little and well then I understood.

Simon Wessley on both papers

https://www.rcpe.ac.uk/college/jour...-after-vaccination-balanced-approach-informed
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2759333/

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NICE have also said they will submit a response. I hope it's a detailed point by point demolition of all 8 arguments made by White et al, and that it gets published.

I wonder whether a resubmission of a shortened version by MEAction would be considered for publication, and whether it could include a link to the original version.
 
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