Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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UK NICE guideline consultation open 10 July 2017 until Friday, 21 July 2017.

Discussion in 'Action Alerts and Advocacy' started by Jo Best, Jun 22, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    And this is the negative response from NICE to the MEA request for details of membership of the expert group that concluded that there is no need to update the NICE guideline on ME/CFS

    I suspect that the same line will now be taken with the FoI request for details of the membership of this group….

    CS



    Dear Dr Shepherd,

    Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (CG53).


    In reaching our provisional decision the surveillance review team undertook extensive searches to identify any new primary and secondary studies, including any economic studies. The focus is on the scope of the published guideline, but any additional areas or changes in practice that are identified during the process are also considered, if they fall within the referral of the published guideline. A literature search is conducted across a range of sources, selected according to their relevance to the topic and are based on those used in the published guideline.



    We can’t provide the names of the surveillance team but it is made up of a Technical Analyst, Technical Adviser, Clinical Adviser and the Associate Director – Surveillance.



    Topic experts, including members of the original guideline committee, are asked for their opinion, in their personal capacity, on the relevance of the published guideline, recent developments in the topic area and their knowledge of any new important evidence since publication of the guideline. Guideline committees are responsible for the development of guidelines and we publish the membership of them. We do not routinely publish the identities of topic experts because, while they may express an opinion, they are not part of the decision making body.


    The review proposal is made by the review team and the decision on whether to update the guideline is made by our Guidance Executive. The Guidance Executive considers and signs off guidance and implementation for publication. It meets every week and is made up of NICE executive directors, guidance centre directors and the communications director. Its current membership can be found on the NICE website.


    I hope this information has answered your question.



    Kind regards,



    Alex



    Alexander Smith

    Communications Executive (Corporate Communications)

    National Institute for Health and Care Excellence
    Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
     
    dangermouse likes this.
  2. charles shepherd

    charles shepherd Senior Member

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  3. Chrisb

    Chrisb Senior Member

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    Is it known, or would it be reasonable to enquire who holds the post of Associate Director-Surveillance?
     
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  4. dangermouse

    dangermouse Senior Member

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    The way these people ignore, omit and fob off is unbelievable.
     
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  5. dangermouse

    dangermouse Senior Member

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    Why not? What is there to hide? Just be honest, let's see who is making decisions that affect a huge patient population.
     
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  6. Valentijn

    Valentijn Senior Member

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    It's also very relevant to know who the consulted "experts" are. Given NICE's irrational conclusions regarding ME/CFS, it suggests they are consulting with a bunch of quacks who will say what NICE wants to hear.

    NICE needs to be accountable for who they choose to consult. And that requires a lot of transparency - regarding the experts, and those who choose the experts.
     
  7. TiredSam

    TiredSam The wise nematode hibernates

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    Hopefully they'll review more than just the front cover.
     
  8. slysaint

    slysaint Senior Member

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  9. JohnM

    JohnM Senior Member

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    West Yorkshire
    From the current 'Code of Practice for declaring and managing conflicts of interest' ..
    and
    Now who could I thinking of on the CDG with 'hard-coded' conflicts of interest? :rolleyes:
     
  10. JohnM

    JohnM Senior Member

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    As I'd noted in post #130 above, the scope of evidence is limited from the outset, and places a heavy bias towards UK-based psychosocial research.

    Also in the same post, this will likely refer to employees of the National Clinical Guideline Centre (NCGC). In addition you can find an outline of the Guideline Development process as presented on the NGCC web site.

    Asked for an opinion in a 'personal capacity' .. seriously?

    Perhaps we now know why supposed topic experts bury their heads in the sand, and 'actively' pursue a policy not to attend biomedical conferences; heaven forbid, they might actually come across 'new important evidence' that does not agree with their psychosocial theories.

    I can only conclude that the organisations, systems and processes, currently in place for the development of NICE guidelines, are used to obfuscate responsibility and accountability for their actions. They seem unable to comprehend how, in the their blind trust of the said systems and processes, they can get it so wrong.

    Wishing everyone improved health and every happiness. John

    EDIT: to add 'organisations' prior to 'systems, processes ..' for clarification.
     
    Last edited: Jul 26, 2017
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  11. Jo Best

    Jo Best Senior Member

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  12. slysaint

    slysaint Senior Member

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  13. Stewart

    Stewart Senior Member

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    @charles shepherd

    I wanted to make sure you were aware a suggestion I made on another thread (so apologies if you've already seen it) that another approach could be for the Countess of Mar - or another friendly Parliamentarian - to ask how many members of the expert group declared conflicts of interest, as required by NICE's Code of Practice, and how many of them declared personal non-financial interests relating to the effectiveness of CBT or GET as interventions (as set out on page 6 of the document).

    That obviously wouldn't get us the names of the group - but it could bring to light some useful information about the group's composition should the FoI request be unsuccessful.
     
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  14. Esther12

    Esther12 Senior Member

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    That NICE response is pretty annoying. They don't provide any reason why they should not let us know who was responsible for the surveilance review. They say that they "can't" (who is stopping them?) and that they do not routinely publish the identities of topic experts... so?

    "I hope this information has answered your question." If that was meant to be a joke, it was funny.
     
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  15. charles shepherd

    charles shepherd Senior Member

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    Thanks

    It's a good idea but as parliament is now on their long summer hols (and the Countess of Mar is having a break as well) this is not something that can be done right now

    I suggest we wait and see what happens with the FoI request

    I am also going to have another go today at extracting this information!

    CS
     
  16. dangermouse

    dangermouse Senior Member

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    :thumbsup:
     
  17. NelliePledge

    NelliePledge plodder

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    Im very happy to share my personal opinions as well can we all be on this "topic expert"panel
     
  18. slysaint

    slysaint Senior Member

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    ukxmrv likes this.
  19. charles shepherd

    charles shepherd Senior Member

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    RE: NICE refuse to release the names of their expert group following a request from the MEA

    I have replied to Alex at NICE as follows


    27 July 2017

    Dear Alex

    Thank you for your detailed reply to my request for details of membership of the expert group that has reviewed the evidence for NICE.

    You say that:

    "We do not routinely publish the identities of topic experts because, while they may express an opinion, they are not part of the decision making body."

    The word "routinely" indicates that while publication of names of topic experts is not done as a matter of course, this is something that NICE could do if it wanted to.

    And there is nothing in your reply to indicate that membership details of the group have to remain confidential.

    Our request to NICE is not "routine".

    Earlier this week The MEA sent a letter to Sir Andrew Dillon with a petition signed by over 15,000 people calling for a review of the NICE guideline on ME/CFS. This appears to be the largest ever public vote of no confidence in a NICE guideline by the people it is designed to help.

    The fact that these experts are "not part of the decision body" has nothing to do with publishing or refusing to publish the names. They are playing a key role in the decision making process.

    So please could you clarify if NICE is actually refusing to disclose this information.

    And if so on what grounds.

    This is a perfectly reasonable request. The ME/CFS patient community expects transparency from NICE in the decision making process on an issue of great importance to their health and this is not happening here.

    Regards

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    MEA letter (pdf) to Sir Andrew Dillon, Chief Executive at NICE, containing the 15,000 signature petition:

    http://www.meassociation.org.uk/wp-...tion-Letter-to-Sir-Andrew-Dillon-24.07.17.pdf
     
    Jan, Invisible Woman, suseq and 15 others like this.
  20. Cheshire

    Cheshire Senior Member

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    Is current guidance for the management of CFS/ME in England fit for purpose?


    https://questioning-answers.blogspot.fr/2017/08/cfsme-is-long-term-condition-and-other-research-gems.html
     
    Jo Best, Esther12, MeSci and 3 others like this.

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