The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Trial by Error: The NICE guidelines, and more on the CDC

Discussion in 'General ME/CFS News' started by AndyPR, Jul 17, 2017.

  1. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    Hampshire, UK
    More at http://www.virology.ws/2017/07/17/trial-by-error-the-nice-guidelines-and-more-on-the-cdc/
     
  2. trishrhymes

    trishrhymes trishrhymes.wordpress.com

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    Excellent as ever from David Tuller. He spells out clearly why NICE are not fit for purpose. Very worrying.
     
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  3. SilverbladeTE

    SilverbladeTE Senior Member

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    By refusing to accept factual reality but instead supporting ideology and trying to cover up past wrong doings, the British Medical Establishment has CHOSEN to commit serious crimes.

    Denying patients proper medical treatment because of ego, profit, personal advancement, or protecting fellow doctors reputations kills, maims and abuses.
    All who authorize this should be jailed for 15 years or full life. Those at the top must pay, must not evade punishment and responsibility.
    There is no excuse for such evil, NO EXCUSE AT ALL.
     
    Last edited by a moderator: Jul 17, 2017
  4. lilpink

    lilpink Senior Member

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    As observed at the link, I do wonder at what point NICE decide, on purely self-interested / self preservation grounds, to refuse to use the BPS model on the basis it causes harms? They are opening themselves up to being responsible for considerable harm. Anyone with any UK legal knowledge able to make an observation about the type of legal redress patients who are harmed by this guideline might want to pursue?
     
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  5. slysaint

    slysaint Senior Member

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    The contaminated blood scandal from the 70's and 80's is only now being 'seriously investigated':
    http://www.independent.co.uk/news/u...sa-may-inquiry-jeremy-hunt-2017-a7835166.html
    "While victims in England have received discretionary payments from the Government, no body or organisation has ever admitted liability or paid compensation over the affair."

    But ,as often happens with these enquiries, it will take years and the finger might eventually be pointed at some scapegoat but the bodies concerned will just say that they have changed their protocols to prevent the same thing happening again.

    Like David Tuller has said about the CDC ' it was all a big misunderstanding'. (where have we heard that before?).:rolleyes:
     
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  6. sarah darwins

    sarah darwins I told you I was ill

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    Unfortunate to see that the 3 FOI requests seeking the names of the 'experts' informing the surveillance team don't have to be responded to until after the stakeholder consultation period is up.

    Another devastating summary of the situation by David Tuller, with no recourse to rhetoric, just plain unambiguous facts. Be nice to think that someone at NICE might actually read it. You think?
     
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  7. Barry53

    Barry53 Senior Member

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    Very nicely put. Not simply that the NICE guidelines are not fit for purpose, but that NICE itself isn't.
     
  8. RogerBlack

    RogerBlack Senior Member

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    Unless they come out and say 'I intentionally wrote the guidelines to hurt ME patients', and then cackle evilly, direct redress is basically impossible. (criminal action or compensation either from NICE or the insurers of those involved).

    Those involved in drawing up the guidance will argue 'we believe on the evidence we looked at'...
    Those involved in specifying who looked at the guidance will argue 'followed best practices that have worked well'.
    Perhaps with a topping of 'non-evidence based criticisms', and sidelining PACE for other studies that are less overtly criticised, but just as bad.

    NICE (as a corporate body) is further isolated, because the recommendations will include 'patients right to refuse treatment' in there, and that they do not directly mandate treatments, only issue guidelines that individual doctors can ignore.

    Judicial Review in principle can get them to look at the guidance again, if anyone is harmed. This is not redress for the individual though.

    http://www.meassociation.org.uk/200...rt-rules-that-a-judicial-review-can-go-ahead/ (ultimately failed).


    I note that Wakefield - who published a now wholly discredited paper on Autism and Vaccines, and from a settled medical view of history has indirectly caused several thousand deaths due to vaccine preventable diseases, suffered only the loss of his medical licence, and no other sanction.
     
  9. Stewart

    Stewart Senior Member

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    The Countess of Marr should (fingers crossed) get a reply to her question asking for this info in the next day or so. Written questions are usually (but not always) replied to in around a week - and she tabled it last Monday...
     
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  10. Large Donner

    Large Donner Senior Member

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    My personal feeling is that the section of NICE dealing with ME has been infiltrated by the BPS crowd. The game they are playing now is:

    No review necessary = BPS win with pre PACE recommendations.

    Review necessary = BPS win using Pace Fitnet and GETset as "updated evidence".

    The "topic experts" who have already decided that no review is necessary don't have to be the main protagonists from the BPS crowd like White or Crawley etc they just have to be influenced coerced or in the favour of them or at least be in a position to further benefit their own careers or standing and not have their own contribution to faleshoods tumble down around them.

    It will be interesting to follow the money if the names of these topic experts is ever revealed and see what positions they move into in the next period and or what grants etc they receive.
     
  11. Stewart

    Stewart Senior Member

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    The section of NICE dealing with ME *is* the expert group. And the Expert Group - which has been created and convened solely for the pupose of reviewing the guideline - consists of members of the committee that drew up the original guidance (which included Crawley, and which obviously recommended CBT and GET) and people working in/with the NHS with a specialism in ME/CFS (who will almost certainly be practitioners/prescribers of CBT/GET as that's what the NICE guidelines have recommended for the past decade).

    The biases are already baked into the system now - NICE's own mechanisms ensure that they will get reinforced at every review if the system continues to operate as intended. The BPS crowd have no need to infiltrate NICE these days - they did it over a decade ago and NICE has been blithely carrying on down the same path ever since.
     
  12. Stewart

    Stewart Senior Member

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    The problem is that NICE will be able to say - with some justification - "Our job was to make recommendations based on the available evidence, and there was no evidence that CBT and GET caused harm". Which of course is perfectly true - because the BPS gang have made damn sure not to collect any evidence that would prove that their crackpot remedies are damaging patients' health.

    I wonder if there's some way *we* could start collecting evidence of harms? Assuming that the guideline is left unchanged this time (sorry to be pessimistic, but it's best to be prepared for the worst) it looks at the moment as though it'll be up for review again in 2020. Is there some way we could encourage affected patients to make official complaints to the NHS - and then keep a log of all those complaints?

    That could be an extremely useful resource for one of the stakeholder groups to use at the next review. "You say there's no evidence of harm - well here's an incomplete list of the complaints made by NHS patients who've endured the adverse effects of these treatments since you last recommended them. Now - are you going to start taking patients' experiences seriously, or do more people have to suffer as a consequence of NICE's refusal to listen?"
     
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  13. SamanthaJ

    SamanthaJ Senior Member

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    I mis-read that as 'toxic experts'. Still works.
     
  14. Large Donner

    Large Donner Senior Member

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    I agree with all of this except we still don't know who the current "topic experts" are who have currently claimed no update is necessary. This information is currently being requested via a number of FOIs. Its crucial to have this info as the 2007 review is done now and we are dealing with this current situation post PACE which proved zero efficacy using CBT and GET.
     
  15. lilpink

    lilpink Senior Member

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    Maybe this new post, in which the problems with the NICE operation as it relates to 'CFS/ME' are clearly exposed & at this moment in time & before they decide how to proceed, should overcome some of those concerns? From my reading it's essentially already making a case for when we need to look back at contemporaneous evidence that that none of their practices bear scrutiny. I think it's rather neat:

    http://counsellingme.com/VIRAS/VIRAS_NICE_comment.html
     
  16. lilpink

    lilpink Senior Member

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    See my answer to RogerBlack ^^^
     
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  17. Binkie4

    Binkie4 Senior Member

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  18. RogerBlack

    RogerBlack Senior Member

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    And all mostly irrelevant to the consultation as it will happen, never mind any prospects of legal action.

    The points made around PACE are of course legitimate - however note that the consultation document already prepares for backing off PACE and arguing that it is not central to the argument, as well as the continued defences of it, the 'FAQ'.

    If the selection of 'topic experts' is as suspected, then they will proceed as expected, along the lines I implied, finding FITNET and perhaps other data favourable, and maybe noting one or two criticisms of PACE, to prove they are impartial.

    I am not arguing that a fair minded review would not look closely at the CBT/GET house and find it is of anything but feathers, nevermind straw, and blows away in the least wind of scrutiny.
     
  19. Deepwater

    Deepwater Senior Member

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    So did I.
     
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  20. lilpink

    lilpink Senior Member

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    Irrelevant in that they have already made up their collective mind which must surely be heavily swayed by members of the BPS school etc etc. But I disagree. One day this body of evidence will be scrutinised and the link I provided is an excellent example of the sort of evidence which can make 'our' case. I also think we are not helping our cause by being so negative about potential action in all sorts of forms, including legal challenges.... I think we need to be rather brazen about the notion that if NICE delivers as we expect they will do then their advice will cause harm and people might want redress. That needs repeating not quashing .... we sell ourselves too short. By presuming (publicly on a forum such as this) that we will never have 'a case' we allow them to feel unassailable. And it's not true. We could in time have a case. And every detail of where every practice has fallen short of being equal and unfettered by prejudice can be used in that case.
     
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