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

Discussion in '2020 UK NICE ME/CFS Guideline' started by Three Chord Monty, Jul 11, 2023.

  1. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

    Messages:
    1,052
    Location:
    London, UK
    In all politeness and with no defamation implied, what wankers.
     
    EzzieD, Missense, Fainbrog and 8 others like this.
  2. Charles B.

    Charles B. Senior Member (Voting Rights)

    Messages:
    247
    Did they identify the problematic language? Rhetorical question of course
     
    EzzieD, MSEsperanza, Fainbrog and 4 others like this.
  3. Trish

    Trish Moderator Staff Member

    Messages:
    53,396
    Location:
    UK
    inox, Barry, EzzieD and 16 others like this.
  4. Trish

    Trish Moderator Staff Member

    Messages:
    53,396
    Location:
    UK
    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.
     
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,919
    Location:
    Canada
    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.
     
  6. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,919
    Location:
    Canada
    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."
     
    Last edited: Jul 26, 2023
    hinterland, EzzieD, Lou B Lou and 6 others like this.
  7. Sean

    Sean Moderator Staff Member

    Messages:
    7,490
    Location:
    Australia
    The rank hypocrisy and double standards are undeniable and disgraceful.

    But entirely unsurprising.
     
    EzzieD, rvallee, Missense and 7 others like this.
  8. RedFox

    RedFox Senior Member (Voting Rights)

    Messages:
    1,265
    Location:
    Pennsylvania
    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.
     
  9. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,909
    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?
     
    adambeyoncelowe and Sean like this.
  10. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,909
    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?
     
    EzzieD, Missense, Lou B Lou and 3 others like this.
  11. Arvo

    Arvo Senior Member (Voting Rights)

    Messages:
    839
    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.
     
  12. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,736
    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.
     
    Michelle, Hutan, EzzieD and 10 others like this.
  13. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

    Messages:
    1,052
    Location:
    London, UK
    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.
     
    EzzieD, Missense, Charles B. and 6 others like this.
  14. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,736
    At least we aren't calling them crafty!
     
    EzzieD, Binkie4, ukxmrv and 5 others like this.
  15. Sean

    Sean Moderator Staff Member

    Messages:
    7,490
    Location:
    Australia
    And it is saying that the editor and publishers are cowards.

    Did they get threatened with a defamation writ?
     
  16. Tilly

    Tilly Senior Member (Voting Rights)

    Messages:
    351
    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/

    upload_2023-7-27_9-16-59.png
     
    bobbler and livinglighter like this.
  17. Fainbrog

    Fainbrog Senior Member (Voting Rights)

    Messages:
    226
    Location:
    London, UK
    Presumably whatever response The World ME Alliance submitted has/will fall(en) foul of this same policy too - I therefore hope they will publish their response on their member sites as ME Action did.
     
    Hutan, EzzieD, rvallee and 8 others like this.
  18. Trish

    Trish Moderator Staff Member

    Messages:
    53,396
    Location:
    UK
    Carson and Stone are just 2 of a very long list on the editorial board of the journal that published the article, the Journal of Neurology, Neurosurgery and Psychiatry. The editors are listed here:
    https://jnnp.bmj.com/pages/editorial-board/

    This is not the main BMJ itself, but one of over 60 journals published by BMJ, listed here: https://journals.bmj.com/home
     
    Hutan, EzzieD, bobbler and 6 others like this.
  19. Trish

    Trish Moderator Staff Member

    Messages:
    53,396
    Location:
    UK
    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.
     
    inox, Michelle, Barry and 11 others like this.
  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,626
    Location:
    UK
    has anyone contacted any of the press who 'publicised' the paper, about this latest attempt to suppress any attempt to expose the truth?
     
    Barry, Hutan, JellyBabyKid and 8 others like this.

Share This Page