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David Tuller: Trial By Error: The Contentless “Editor’s Note” About the Lightning Process Trial

Discussion in 'General ME/CFS News' started by Eagles, Jul 16, 2018.

  1. Eagles

    Eagles Senior Member (Voting Rights)

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    Trial By Error: The Contentless “Editor’s Note” About the Lightning Process Trial

    http://www.virology.ws/2018/07/16/t...itors-note-about-the-lightning-process-trial/

    16 July 2018

    By David Tuller, DrPH

    Last week, I noticed that Nick Brown, the editor-in-chief of Archives of Disease in Childhood, had appended an “editor’s note” to the Lightning Process study on June 19th. The note is stunningly inadequate…
     
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I recognize that people, including editors, can make mistakes—as I myself do. That’s why correcting them is an indispensable editorial function; failing to do so is a betrayal of readers and the public trust.

    It's that simple, frankly.
     
  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    I can feel nervous that regularly sending open letters like this might seem like 'harassment' to the privileged Establishment figures whose prejudices matter, and who have little to lose from ignoring problems that only harms patients... but then reading that bit from the Parker biography makes me think that everyone should easily realise that this is embarrassing nonsense that needs to be cleaned up quickly.

    I hate UK culture. It's ridiculous that it seems to be so important to pussy foot around those who are abusing their positions of authority.
     
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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  5. dave30th

    dave30th Senior Member (Voting Rights)

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    I go back and forth on this. But not sending open letters and being deferential and polite hasn't worked...so it seems worth a try.
     
  6. Alvin

    Alvin Senior Member (Voting Rights)

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    The culture is meant to keep the populace in line so following the rules by design means we lose
    So perhaps we need to replace the "authority" in psychiatry in the UK with someone who doesn't deny reality...

    Its one way lobbyists convince politicians.
     
    Last edited: Jul 16, 2018
  7. large donner

    large donner Guest

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    Keep doing what you are doing because this will eventually break even if it takes many more years. The main thing you are doing is keeping a public record of how ludicrous the whole ONGOING situation is. It IS ongoing by virtue of the fact that you are giving people chance after chance but they are unwilling to own up to the ludicrousness of the situation.

    Remember these are the same people who are pushing the MUS nonsense and its crucial that they cant just jump from "CFS" to "a newly described phenomenon of MUS".

    If anything I think you should preempt them with, "its seems clear some peole are trying to push and grow the spurious MUS brand", as your next move.

    Maybe best to cut them of at source because when they really try to go full steam ahead ahead with the MUS nonsense we can say "we told you so" to all the bodies like NICE, DOH etc.

    Infact in my opinion its not too early to do that now.
     
    Last edited: Jul 17, 2018
  8. Hutan

    Hutan Moderator Staff Member

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    This is a great letter. After describing the woo-woo magic of the Lightning Process, there is this:

    Very powerful. If Dr Brown can read that letter and still do nothing, that says a great deal about his morals and commitment to science.
     
  9. dreampop

    dreampop Senior Member (Voting Rights)

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    There are a lot of reasons to not consider this too much - they are spaced over a long period of time and they are to a lot of various parties, rather than one person. It's not like knocking on the same person's door everday. And most importantly, the content is accurate and the arguments are sound.

    The recipients are recieving the letters in a professional capacity about a matter related to their office. They are obligated to address issues where they arise. This is particularly important when we are talking about those in office to protect the healthcare of children - from a government position or editorial.

    The "note" to the LP Paper is offensive to anyone with a brain. To my mind, it actually reads as support of the trial. I.e. we reviewed it and chose not retract and the authors have arguments as well. It's not apparent from the abstract that there is even a note. Brown conflates chronic fatigue with ME/CFS in the god damn editorial note and he can't even get right the definition used in the study (ME/CFS). I also don't understand this "(used widely but never formally tested)" which is such a weird thing to write because it implies LP is common practice and they were just doing due diligence. And he acknowledges the study was small, but nothing else, which I read as his only concession as to a problem with the paper.

    So, it actually seems reasonable to keep writing letters about the LP paper, because Brown's note reads as "I can't be bothered" and that's not an acceptable response from his editorial office.
     
    Last edited: Jul 17, 2018
  10. Sean

    Sean Senior Member (Voting Rights)

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    Worth repeating. Getting it on the public record, especially the formal record, is very important groundwork.
     
  11. FreeSarah

    FreeSarah Senior Member (Voting Rights)

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    The last 3 paragraphs of that letter should be required reading — for NICE, for Bristol University, for GPs, and for everyone who's ever said "I have a friend who was cured by the Lightning Process".

    Good grief. This is insane. Whenever the NHS flirts with something like homeopathy there's outrage and the letters pages of The Times etc are filled with furious letters from doctors. But the medical establishment is actively embracing the magic beans of this guy:

     
  12. Trish

    Trish Moderator Staff Member

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    That point struck me particularly too. Used widely suggests to me something like pacing, which is used widely by pwme, or GET which is used widely within the NHS.

    In the case of LP it is a commercial product sold by a hard sell using a pyramid selling scheme and aimed at brainwashing its victims into pretending they are recovered and encouraging them to become practitioners and make money out of it too.

    In a health context, the normal practice for a harmful practice that is used widely is to ban it, or at least issue warnings about it, not give it credibility by conducting a clinical trial.
     
  13. Alvin

    Alvin Senior Member (Voting Rights)

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    I think of this as making a deal with the devil, Ester and the PACErs needed a process to abuse for more fraudulent papers hence the shotgun wedding.
     
  14. FreeSarah

    FreeSarah Senior Member (Voting Rights)

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    you left out a couple of words, Trish:

    not give it credibility by conducting a [dodgy and unethical] clinical trial
     
  15. Mithriel

    Mithriel Senior Member (Voting Rights)

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    It is important to have these letters. In another thread we are discussing the epidemics and enteroviruses. All we have now are the written records; there is no one to ask. These are for the future as well as the good they do today. (And let's face it, they are improving my mental health much better than antidepressants. Single handedly lifting depression for ME patients across the globe:thumbup: )
     
  16. NelliePledge

    NelliePledge Moderator Staff Member

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    parts of my body would start speaking to Parker but it wouldnt be repeatable in polite society
     
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  17. dreampop

    dreampop Senior Member (Voting Rights)

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    That and also, is it widely used? I'd be surprised if 1% of ME/CFS patients in U.S. had done the LP so I know it's not widely used here. Either way, do we really think the editor who couldn't even correctly identify the condition in his note on the paper (he, again, refers to chronic fatigue, the paper is on ME/CFS) knows how many ME/CFS patients in U.K. have done it with enough certainty to say it's widely used.

    Also, he uses the term neuro-linguistic program which even wikipedia says has been 'discredited scientifically'. So, his first paragraph is actually a remarkable thing - his journal published a paper in support of something discredited scientifically. That's big news.

    The more I read it, the note is as bad as the original paper. It's comical. I always laugh at the LP stuff because this is so absurd. It's diplomas are bundled with hypnotherapy and no one blinks an eyelid because it's ME/CFS but rather a BMJ pediatric journal editor goes to bat for it.
     
    Last edited: Jul 17, 2018
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  18. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I added the following as comments to the Virology Blog post, but because of the restrictions of DISQUS I had to divide it into small sections. A couple of my points have already been raised above. My feeling is that the note reflects major concerns about Dr Brown's understanding and attitude to the issues. I would be interested if others feel I am just being over pickey because of my antipathy to the actual paper or if these are relevant points.

    Thank you David for continuing to pursue this serious issue. I may be pedantic but I have further concerns about the wording of Dr Brown's editorial 'note'

    - "used widely but never formally tested" Given that this note fails to outline any of the many criticism of this study, this out of context may suggest to some as a partial endorsement of the 'Lightening Process' suggesting that many people are using it
    - "children and young people with chronic fatigue" Despite any reservations one might have about Prof Crawley's understanding of the distinction between the symptom 'chronic fatigue' and the condition 'chronic fatigue syndrome', the study claims to be investigating CFS/ME so to describe participants in relation to just the one symptom, means either Dr Briwn has failed to read the study properly or is whether intentionally or not belittling a profoundly disabling condition
    - "analysis suggested benefit in terms of physical functioning" This is not strictly true in that the suggestion was of an improvement in self reported physical function, which is not the same. The mention of a scale may to those in the know alert them to this, but to the lay and much of the general clinical audience the implication is that this is an objectively quantifiable improvement which is not the case. Further given the intervention evaluated, effectively instructs the children to lie about their symptoms, any subjective measure in this context is doubly inappropriate. Further given the methodological problems in this study it is impossible to meaningly interpret any change as benefit.
    - "the study has been criticised for failing to meet ... ... ..." The policy and guidance are referenced but not the reasons the study fails to meet then. Why were the eliding of a feasibility study into a full trial, the consequent preregistration recruitment of subjects, the outcome switching midtrial, the confusions relating to ethical approval resulting from these and the obfuscation of all these issues in the paper itself not stated, as this leaves the reader with no insight into the seriousness of these points, nor does it inform them of the many other significant criticisms of the methodology and the intervention as tantamount to child abuse, that render the study unacceptable over and above the major failings of the journal to spot the issues very obliquely alluded to here and their failure to act for many months after they were first pointed out.
    - "We have acknowledged these comments and reviewed our process" To my knowledge they acknowledge the correspondence, but that is not the same as acknowledging the actual comments. This reads that they have indicated they read and understood the comments and informed the commenters of this, but so far there is no clear indication that they have understood them or reported them to any one other than the Journal's editorial team and the paper's authors. Also so far their review of their processes so far is hardly open or transparent. Dr Brown is effectively implying the issues have been adequately dealt with without giving any actual evidence that this the case.
    - "In addition, we have received clarifications from the authors which are under editorial consideration" This has the problems that David has already pointed out, but also what is the need for any consideration when either there was or was not preregistration recruitment of subjects which unambiguously would preclude this study from publication in this journal. Why then this delay.

    Further on the website itself Dr Brown has placed a note declaring he has no conflict of interest. It is very strange that a journal's editor should feel it necessary to indicate that he has no conflict of interest when he has a prima facie conflict of interest by virtue of being the journal's editor.

    I may seem to be being pedantic, but this is a very important issue, and one would expect a BMJ journal to exercise more than ordinary care in relation to a very questionable intervention involving the Lightening Process that has been the subject to controversy and official investigation over many years. Even at this stage the editor is falling short of linguistic precision and the openness we should be entitled to.
     
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  19. dreampop

    dreampop Senior Member (Voting Rights)

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    @Peter Trewhitt I like it, you touch on a lot of salient points in a professional way. I do think the conflict on interest thing for the editor is actually overally critical.

    One last thing on the topic is that I like that Tuller has drove home absolute absurdity in the letter. He can't get called on calling a hypnotherapist a 'woo-woo'. I'm hoping those aspect will get through to the editors eventually, and hopefully the public can one day see the absurdity for what it is.
     

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