Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Bad news to the MEA from NICE: no review considered necessary

Discussion in 'General ME/CFS News' started by Countrygirl, Jul 5, 2017.

  1. Countrygirl

    Countrygirl I'm with Cheesus

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    http://www.meassociation.org.uk/201...ne-review-and-its-not-good-news-05-july-2017/

    The ME Association has heard back from NICE about the guideline review… and the news is not good.


    Buried in the letter to stakeholders that was sent out in December 2016 was a rather worrying statement:

    “There will be a 2-week consultation with registered stakeholders if information summarised indicates that a ‘no update’ decision should be considered.”

    “There is no consultation if the decision is to update the guideline because it has been based on the availability of new evidence, and is usually supported by stakeholders.”

    We wrote to NICE to ask them for clarification as to whether the triggering of a stakeholder consultation, that will commence on 10th July, basically means that the group who have been reviewing the evidence have decided that a formal and full review of the NICE guideline on ME/CFS is not now required.

    This position has been confirmed by NICE this morning.

    The exchange of correspondence between the ME Association and NICE is set out below.

    This is obviously going to come as very disappointing news to the ME/CFS patient community and we will now be doing all we can to try and persuade NICE to overrule the ‘no update’ necessary advice they are being given.

    This means that NICE needs to take serious note of:

    1. the extensive and consistent patient evidence on the ineffectiveness of CBT and the harmful effects of GET

    2. the criticism of the PACE trial that has come from both the ME patient community and from clinicians and researchers

    3. the re-analysis of the PACE trial data on recovery

    4. the evidence that the MEA has already submitted when NICE was placing the ME/CFS guideline onto their ‘static list’. This evidence covers a number other important areas of the NICE guideline where we believe that the guideline is not fit for purpose and needs to be properly revised

    We will also be meeting with other ME/CFS charities and the Countess of Mar for a Forward ME Group meeting at the House of Lords next week where the NICE guideline review will be on the agenda

    Dr Charles Shepherd
    Hon Medical Adviser, ME Association
     
  2. charles shepherd

    charles shepherd Senior Member

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    NICE Guideline Review: The 'experts' are recommending a 'no update' (July 5th 2017)

    Exchange of correspondence between The MEA and NICE indicates that the expert group reviewing all the evidence have concluded that there is no need to review the NICE guideline on ME/CFS

    Exchange of correspondence here:

    http://www.meassociation.org.uk/201...ne-review-and-its-not-good-news-05-july-2017/

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
    Manganus, justy, Skycloud and 18 others like this.
  3. Countrygirl

    Countrygirl I'm with Cheesus

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    Meanwhile, back in the House, Lady Mar is fighting our corner:
    https://www.theyworkforyou.com/lord....2&s=(chronic fatigue) 2017-06-21..2017-07-05

     
    MeSci, Skycloud, Susanna D and 16 others like this.
  4. NelliePledge

    NelliePledge plodder

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    disappointing - if we cant get commitment to review now it needs to be up for consideration again in 12 months time
     
  5. Esther12

    Esther12 Senior Member

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    Sounds like we're going to have to re-explain to them the problems of making treatment recommendations based on nonblinded trials and self-report outcomes. This can mislad doctors and patients as well as promoting patient, and it's time for NICE to recognise this.
     
  6. A.B.

    A.B. Senior Member

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    They clearly don't understand the situation. As far as I know, all of the evidence on CBT/GET, except one study, is based on unblinded trials with primary subjective outcomes that cannot tell you whether positive results are genuine or merely due to bias. The results are generally consistent with the null hypothesis: modest temporary improvements on some or most subjective outcomes, no clinically significant change in steps per day, employment, etc. That's the kind of results you would expect if the treatment was ineffective.

    So what we have here is a mass of papers that are completely unsuitable to serve as basis for public health guidelines. Quantity cannot compensate for the aforementioned design flaw. There is no basis to conclude that CBT/GET are useful treatments for CFS.

    There is one double blinded placebo controlled study that included CBT and it concluded:
    https://www.ncbi.nlm.nih.gov/pubmed/8430715
     
    Last edited: Jul 5, 2017
    Solstice, Woolie, Somer and 12 others like this.
  7. AndyPR

    AndyPR RIP PR :'(

    @charles shepherd , if the consultation period doesn't change the "expert" groups mind, do you have any idea how long we might have to wait until they could be convinced to look at it again?
     
  8. dangermouse

    dangermouse Senior Member

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    I am concerned that we'll be stuck with inappropriate NICE guidelines for ME till the actual cause and proper (real) treatment is discovered.

    Till then our GP's and other health care professionals will be offering CBT and GET.

    Unbelievable, but at the same time it's not a surprise is it.
     
    Manganus, halcyon, Solstice and 4 others like this.
  9. SamanthaJ

    SamanthaJ Senior Member

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    I can guess part of the answer, but who is on the 'expert' panel? Is there no one from the biomedical side?
     
  10. dangermouse

    dangermouse Senior Member

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    Good question.
     
    Luther Blissett, Binkie4 and MEMum like this.
  11. charles shepherd

    charles shepherd Senior Member

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    How long is a piece of string?

    I think they will only go through the process again when there is some really solid published evidence from a clinical trial on something other than CBT and GET to seriously consider

    Eg: Two independent phase 3 clinical trials confirming that rituximab is a safe and effective form of treatment for at least a sub-group of people with ME/CFS

    CS
     
  12. charles shepherd

    charles shepherd Senior Member

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    Details of who is on the panel that has been reviewing all the published evidence are not available
     
  13. Keela Too

    Keela Too Sally Burch

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    Would a FOI help? How can patients be confident that the panel is free from psychiatric/PACEsupporter bias?

    This is outrageous frankly.
     
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  14. Keela Too

    Keela Too Sally Burch

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    And surely a review is not just about adding new treatment options, but also about removing out-dated options.

    NO treatment is better than the wrong treatment!!
     
    MeSci, Sea, moosie and 32 others like this.
  15. SamanthaJ

    SamanthaJ Senior Member

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    Thank you. Got to admit I'm surprised (and yet sort of not surprised), as there's no way of knowing if there's conflicts of interest. We're supposed to just put our trust in NICE...
     
  16. Large Donner

    Large Donner Senior Member

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    It all seems rather confusing, has it already been decided that no review of the NICE guidelines will happen or not and what is due to happen on the 10th July?

    Are they saying that they are only having the consultation due to in already being decided that if there was a review necessary the stakeholders would all have agreed such and therefore the consultation is an appeal process of sorts to overturn the decision not to review ?
     
    Last edited: Jul 5, 2017
  17. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Unfortunately this looks like the predictable whitewash.
     
  18. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Spiritual guidance .....sigh
     
  19. Large Donner

    Large Donner Senior Member

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    Yes not only that but its also doled out by the state as a claimed treatment. It reminds me of when head teachers assure parents in schools that the state rolled out mindfulness they are making children practice from the age of five is non a denominational secular practice.

    They really need to look up the definition of religion and faith based unsupported beliefs, its got nothing to do with who you are choosing to pray to or not using your own choice.

    Once the state takes on CBT or mindfulness or "spiritual guidance" onto the statute to push onto its citizens as proclaimed treatments or prevention from future "mental illness" or wrong ways of thinking, things have gone seriously wrong. Its just religion without a God.

    I'm trying to work out if that's fascism or communism, who knows nowadays.
     
    Last edited: Jul 5, 2017
  20. SamanthaJ

    SamanthaJ Senior Member

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    Yes, even NICE ought to recognise the case for removing or down-grading the recommendation of GET. NICE must take patient-reported harms into account with drugs for example, why not GET?
     
    moosie, Jo Best, suseq and 14 others like this.

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