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NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

Discussion in 'General ME/CFS News' started by Andy, Oct 16, 2018.

  1. large donner

    large donner Senior Member (Voting Rights)

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    Having made this strategic decision it is imperative that others on the committee must be held to the same "conflicts of interests" voting rights as Dr Shepherd has had to factor into his decision.

    I think we can submit our letter to NICE now stating such issues.
     
  2. large donner

    large donner Senior Member (Voting Rights)

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    Does this now also apply to Gabrielle Murphy et al and does it stretch as far as being involved in studies etc?
     
  3. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Do we have confirmation that this interpretation of voting rights is correct?
     
  4. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Quite and and all members whose jobs involve prescribing/promoting the BPS view of ME and MUS.

    Really the whole things is a fiasco.

    How can they maintain this notion of two points of view which have to be represented on the committee when the scientific evidence shows the BPS view is untenable? (see IOM report)
     
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  5. JemPD

    JemPD Senior Member (Voting Rights)

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    Oh dear :(

    I hold Dr S in very high regard and can see he has been put in a very difficult position with this, but i think it's a terrible mistake.

    I dont think anyone else who has a 'strong opinion' will remove themselves from discussions, oh no.

    And really, who cares if he wouldnt be able to say anything in public... I dont believe that would much of a loss, since despite very good efforts by him, nobody (important) ever seemed to take a blind bit of notice anyway,

    So good sense & scientific reason will be outvoted at every turn by those with a 'strong opinion' & a vested interest.... but never mind because Dr S will be able to publicly condemn the shitty guideline we end up with? As if that will make any more difference than it did the first time.

    This guideline is the single most important thing that will impact the lives (& safety) of patients on the ground for the next 10yrs at least, if it is the same or worse than before it will be catastrophic & cost lives. Compare that to the impact of comments that Dr S makes in the media & elsewhere & I'm sorry but there is just no contest.

    I really do respect Dr Shepherd & i respect that he needed to do what he felt was best. And I very much wish him well & hope that i am wrong, but him being invited to be a voting member & turning it down, for any reason, is a staggering loss of opportunity & imho a devastating mistake.

    :( I just feel gutted, & terrified for the future tbh.
     
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  6. JemPD

    JemPD Senior Member (Voting Rights)

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    Hutan, Joel, andypants and 9 others like this.
  7. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Tbh , I’m not sure it was fair of NICE to say that re. Limiting freedom of speech on GET/ LP etc as a charity representative, Is Gabrielle whoeverhername limited in advocating GET outside the committee? If Dr S would be too conflicted on GET matters one way, arguably the global evidence and patients evidencesupported way, surely 1/3 the panel are conflicted the other, way with more obvious self serving benefits.

    There’s also the impact of MEA essentially being part of the NICE G, which will constrict their freedom of expression regarding it, which is an effect in itself starting right now from no comment on committee choice.


    Basically Dr Shepherd has made his decision. We as a community, perhaps as part of #MEAction, now or soon, have to decide whether to lobby for a better committee or go with it as presented. Someone elsewhere said how can a neurological classified condition not have a neurologist.
     
    Last edited: Nov 9, 2018
  8. TiredSam

    TiredSam Moderator Staff Member

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    Just out of interest, if all committee members were held to the same standard, how many of them would still be allowed to vote?
     
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  9. rvallee

    rvallee Senior Member (Voting Rights)

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    There are still unqualified appointments who have strong opinions that are detached not only from reality but from the actual descriptions of this disease that NICE acknowledges. They have a history of baseless claims about this disease that show confusion and misunderstanding. It amounts to appointing HIV deniers to an AIDS panel, completely unprofessional choices.

    It's still worth making that point loud and clear. What they choose to do is up to NICE, they control the process, but the appointment of unqualified professionals is definitely something that needs to be strongly objected to.

    What matters is making a clear and transparent public record of the problems. Our tiny voices are the only asset we personally have. We can make it count.
     
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  10. rvallee

    rvallee Senior Member (Voting Rights)

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    Based on holding strong opinions that align with reality and patient experience. The opposite circumstances are not being honored, though. The question is whether having a strong opinion is the issue, or having a particular opinion, which is obviously the case.

    The opinions of the psychosocial ideologues is obvious and has a long public record. This is an obvious double standard that depends on one side acting in good faith and the other not caring as long as they get to achieve their predetermined outcome.

    When they low we go high sounds nice in principle but it often accomplishes the opposite.
     
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    That does seem to exclude anyone with an interest in ME, as they would obviously have an opinion one way or the other. And since that is the actual selection criterion for some of those appointments, that is too much internal inconsistency and an ambiguous way to exclude opinions that do not conform to a planned outcome.
     
  12. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Because Neurology are the ones who have tossed us over the fence to the psychs. Neurology would probably be rediagnosing us as FND.
     
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  13. large donner

    large donner Senior Member (Voting Rights)

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    I have no idea if Dr Shepherd has made the right decision but I was wondering whether he could have accepted the full committee position after requesting from NICE a written position on all other members, their activities and whether they would be made to abstain from votes on GET and CBT?

    Lets be honest the way the BPS crowd are going to play it is to get their mates onto the committee and if they are not allowed to publicly comment on certain matters for the duration of the review they will just issue statements and their usual rhetoric via other people.

    It's just astonishing that something like this was supposed to be in place during the ongoing CMRC yet Crawley, whilst vice chair, just sounded off nonsense for five years and even published the LP study.
     
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  14. Gday!

    Gday! Established Member

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    The biggest risk factor is to children and there is a clear lack of proper representation at Paediatric level , Dr Speight needs to be on this panel. There is horrific abuse of children in schools,clinics and hospitals throughout the U.K. Most adults with ME would be horrified if they knew what was going on. This is a grossly unbalanced committee and many have never lived with a child with ME the battles are horrific. I also think Dr Shepherd should have taken the vote it is so badly needed. We need to have some of the psycho brigade removed.
     
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  15. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I think there is a big risk factor to anyone who is severely ill with ME who is at risk of forced treatment children and adults. I believe that there are now people who have knowledge of severe adults but agree the paediatric side needs balance as well as an absolute minimum Dr Speight should be involved as an expert presenter
     
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  16. chrisb

    chrisb Senior Member (Voting Rights)

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    I meant "undue influence" rather than duress. You know how it is with ME, "le mot juste" never arrives until far too late, or is that just due to old age? It can be very difficult to guard against and requires constant alertness to the possibilities.

    And what would be "due" influence in this setting.
     
  17. Sean

    Sean Senior Member (Voting Rights)

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    Two can play that game.

    And another vote for Speight being on the committee.
     
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  18. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    I saw the following post in a discussion on the ME Association Facebook page. Charles Shepherd wrote:

    "A significant part of the problem here as far as NICE is concerned occurs when a person who is being considered for appointment to the committee has strong opinions on issues being discussed and wants to be able to continue to express these views on social media and in the public domain - as I do. So one of the conditions for joining the committee is that all members have to curtail or stop social media and media activity that involves contentious issues. Clearly, this was not something that I was able to accept."​

    So it is possible that I have misinterpreted his previous comments. The problem, so it seems, is not so much that he previously expressed strong opinions on issues such as GET/CBT, but that as a full member he could no longer do so, as long as the new NICE guidelines are in development. In that case I'm not sure he made the right decision.
     
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  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    This is a pretty strange requirement. As far as I am aware as an expert witness I am not bound by any such restrictions.
     
  20. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Well, the fact that Dr. Shepherd chose to be a co-opted member suggests this is not a requirement for that position. So it seems possible that "to curtail or stop social media and media activity that involves contentious issues." is only a requirement for full members and not for other positions such as expert witnesses. Not sure though.
     

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