International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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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. Deepwater

    Deepwater Senior Member

    Thanks for this feedback. But what you are saying is that when they write 'voluminous' they really mean something else - i.e. repetitive or waffly. Misuse of the English language, then. They state that they reserve the right to edit down submissions that are too voluminous, and that simply means 'too long'. So how long? Seems a reasonable question.

    It is rather reminiscent of the mangling of the English language you find in PACE, where recovered means actually pretty sick and possibly sicker than when you entered the trial.

    I'm afraid this is the old editor in me, trying to work up the energy to tear out my hair at the abysmally low standards of editing these days, from which consideration of content and meaning seem generally to be entirely absent. Surface appearance is all that matters. PACE should never have got through an editor doing his or her job, let alone peer review.

    Do we know whether this is a standard NICE statement or whether it is getting its first outing?

    By the way, I think these responses from patient groups have been excellent.
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  2. Valentijn

    Valentijn Senior Member

    Not every interest is a conflict. I think it was @Jonathan Edwards who described the patient interest as being a convergence of interest, not a conflict of interest. And having expressed an opinion does not mean a conflict is present either.

    It's concerning that the proposed NICE COI changes seem set up to label patient advocates as being conflicted by default.
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  3. JohnM

    JohnM Senior Member

    West Yorkshire
    The current NICE 'Policy on Conflicts of Interest' only apply to the following:

    Board members and employees of NICE.
    Employees of NICE national collaborating centres.
    Committee chairs and members (including co-opted members) and remunerated expert advisers.
    Appeal panel members.
    Agency workers and contractors on temporary contracts or employed through an agency to work for NICE.
    Secondees (those who are seconded to NICE from other organisations.
    Employees of 'evidence contractors' working directly or indirectly to supply evidence that is used by guidance-producing advisory bodies.

    So unless I'm missing anything, which is more than possible .. :D

    Edit: Reading through the new draft guidelines
    Last edited: Jul 25, 2017
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  4. slysaint

    slysaint Senior Member

    so the voluntary ones are not included ie 'topic experts' ?

    eta: so does the new draft include them?
    Last edited: Jul 25, 2017
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  5. JohnM

    JohnM Senior Member

    West Yorkshire
    Having read through the new draft guidelines, my thoughts as follows:

    given page numbers refer to *.pdf document, not the original document.

    You are neither a member, or work with the advisory committee.

    My reading is that you need to be present in those meetings, i.e. in person or via video-link, etc.

    Absolute gobbledydook, and can be interpreted in so many ways as to be meaningless. My stab is that this again refers to "committee members and advisers (who) bring a range of experiences and perspectives to NICE’s work." (p4 - Defining and categorising interests)?

    Requires clarification for sure .. hope the above helps some. :)
    Jo Best likes this.
  6. JohnM

    JohnM Senior Member

    West Yorkshire
    In the existing guidelines (p3)
    "For the avoidance of doubt, the fact that an individual is living with a disease or condition, or has a family member who is in that position, is not regarded as a conflict of interest. (See Definitions for an explanation of ‘family member’.)

    In the new draft guidelines (p6-7)
    "For the avoidance of doubt, the fact that an individual is living with a disease or condition relevant to the matter under discussion, or has a family member who is in that position, is not regarded as an interest and does not need to be declared"
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  7. JohnM

    JohnM Senior Member

    West Yorkshire
    My thoughts exactly .. :rolleyes:
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  8. Barry53

    Barry53 Senior Member

    I think it is worth noting that it is potential conflicts of interest that are being declared, not hard-coded ones. It is just to flag up to a reader that someone might be biased and excessively subjective, not that they definitely are.
  9. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    I agree. This is a critical problem with "evidence" based medicine. Every evidence based study with huge numbers of papers triages those of interest. That triage eliminates a lot of the evidence. The solutions used to limit evidence to papers deemed high interest are problematic. All large evidence based reviews run into this problem. Only in a small area is this problem potentially tractable, yet incredibly its usually the case that most of the evidence is still triaged, based on what I have read.

    This ignoring of evidence is a big part of the effort to contain both monetary and personnel costs (even if unpaid) in developing a review or metastudy. Its similar to the closed world hypothesis in computer science, in which things are ignored to make a problem computationally tractable.
  10. JohnM

    JohnM Senior Member

    West Yorkshire
    So true .. and here in the UK, it would appear that the 'triage' of which you speak, is further compounded by the limited scope of evidence searches for any given condition - see Developing NICE guidelines: the manual, Process and methods [PMG20], Appendix F and Appendix G.

    Through doing some research of my own the last couple of days, I've discovered that NICE commission the National Clinical Guideline Centre (NCGC) to produce evidence for CFS/ME, and other illnesses, who are in turn "..overseen by a governance partnership between the Royal Colleges of General Practitioners, Nursing, Physicians and Surgeons.". To date, I can find nothing on the NICE website which acknowledges this relationship; the murky world that is medical politics. NICE wanting to present an open and transparent image for the benefit of patients and carers, I think not!

    Wishing all improved health and every happiness. John
  11. AndyPR

    AndyPR Senior Member

  12. Binkie4

    Binkie4 Senior Member

  13. AndyPR

    AndyPR Senior Member

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  14. charles shepherd

    charles shepherd Senior Member

    This is the letter to accompany the MEA petition that has been sent to Sir Andrew Dilllon, Chief Executive at NICE.

    It also contains some comments from Dr William Weir on the harmful effects of GET.

    The ME Association

    7 Apollo Office Court

    Radclive Road



    MK18 4DF

    25 July 2017

    Dear Sir Andrew

    The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision

    I assume you are aware that NICE has been undertaking a stakeholder consultation process in relation to the 2007 NICE guideline (CG53) on ME/CFS.

    This follows on from a decision by an expert group that was appointed by NICE to review all the new and relevant research evidence on ME/CFS.

    The ME Association (MEA) is disappointed and somewhat surprised to learn that the expert group has concluded that there is no need to review or update the guideline on ME/CFS.

    We have consistently taken the position that key parts of the 2007 NICE guideline are unfit for purpose. For example, the use of cognitive behaviour therapy (CBT) and graded exercise therapy (GET) for everyone with mild or moderate ME/CFS is not acceptable to the patient community and the undue emphasis placed on these two approaches in the guideline implies to many doctors that there is very little else that can be done to help.

    We believed that a significant number of people with ME/CFS would support the MEA in calling for a proper review of the guideline, so we decided to create an online petition to allow people to demonstrate their support and to leave comments relating to their experience of clinical care under the guideline, or their own ideas about how the guideline should be revised.

    The petition opened on the same day as the stakeholder consultation process began, Monday 10 July, and it closed on Monday 24 July at 9am. In the same period as that allowed for stakeholders to submit their comments to NICE, the petition was signed by 15,180 people. I attach the petition to this email – although you may also view it online. At the same time as the petition, we asked people who visit our website to complete a straw poll which asked, ‘Do you think the NICE guideline for CFS/ME is working for you?’. We began it on Tuesday 11 July and the public response can be seen on the homepage of our website but I have also taken a snapshot:

    Current MEA website poll voting figures instead here:

    • Do you think the NICE guideline for CFS/ME is working for you?
      • Yes - I think it is (0%, 3 Votes)
      • Yes - but it could be better (0%, 3 Votes)
      • No - I think it needs a minor review (1%, 8 Votes)
      • No - I think it needs a major review(94%, 648 Votes)
      • I am not sure (1%, 5 Votes)
      • What's the NICE guideline? (3%, 19 Votes)

        Total Voters: 686

    My understanding is that with over 15,000 signatures – the total after only two weeks – the MEA petition represents the biggest expression of no confidence in a NICE guideline ever recorded.

    The ME/CFS patient community have made their views very clear. NICE must acknowledge that they have produced a guideline that is not meeting the needs of the people it is designed to help.

    We also have a major cause for concern about the way in which NICE gathers and reviews what it regards as evidence in relation to acceptability, efficacy and safety of interventions used in ME/CFS.

    This relates to the way in which evidence from clinicians, and especially from patients, is not being actively sought by NICE and appears to be almost completely ignored when it is submitted by patient representative organisations such as our own.

    In 2002, the Independent Working Group on ME/CFS in their report to the Chief Medical Officer gave equal weight to research, clinical and patient evidence – and we believe this practice should be applied to the creation and review of the NICE guideline.

    When evidence from clinical trials is either weak or inconsistent and there are significant differences between patient reports and clinical trial evidence – it is even more important to listen to what patients who use specialist clinics, for example, are telling you about the effectiveness and safety of the NICE endorsed recommendations.

    There are many clinicians involved with the care of people with ME/CFS who are not asked to be involved in the guideline review process. However, they do have important evidence to contribute.

    My colleague Dr William Weir – a well-respected specialist in infectious diseases with a longstanding interest in ME/CFS – has made the following comments:

    “I think that the single most damaging misconception perpetrated on ME patients is the idea that deconditioning is the problem and that exercise is the antidote.

    “I have seen many people now, well-motivated, who have made themselves much worse with exercise, often on the advice of their GPs who have been gullible enough to swallow the deconditioning hypothesis.

    “I think this needs to be properly emphasised with NICE, otherwise their advice concerning graded exercise will always be assumed to be "exercise to fitness" which is always destructive.

    “Sadly, the people who get worse with exercise, because they exceed their anaerobic threshold on multiple occasions with further reduction of the latter, are then assumed to be imagining their disability and treated accordingly. It would be farcical if it wasn't so serious.”

    Dr Weir has asked if his comments might be added to the evidence that has already been submitted by the ME Association for the consultation.

    Finally, could I draw your attention to the submission from the Countess of Mar and members of the Forward ME Group of charities: year surveillance (2017).pdf

    This response focusses on the important issues of ethics and informed consent.

    The NICE guideline was published in 2007 and it has not been changed in 10 years despite advances in our knowledge-base and its testing on many thousands of people with ME/CFS.

    In our opinion, it is fundamentally failing to serve the need of patients and we call on you to help us work with NICE to achieve something demonstrably better.

    I would welcome the opportunity to come and discuss the situation outlined by the petition and in our submission to NICE with you at your earliest opportunity.

    In the meantime, I look forward to hearing your response to the petition so that I might pass your words on to our supporters.

    Yours sincerely,

    Dr Charles Shepherd

    Hon Medical Adviser, ME Association. 4

    Attachments in accompanying email to your PA:

    1. 1. The ME Association petition: The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision - in two parts: a. All those who signed the petition
    2. b. All the comments that were made

    2. The ME Association stakeholder submission to the NICE guideline consultation process

    Copies of this letter and attachments are being sent to:

    Countess of Mar - House of Lords and Chair of the Forward-ME Group

    Professor Mark Baker – Centre for Guidelines Director, NICE

    Dame Sally Davies - Chief Medical Officer for England at the Department of Health

    Dr Martin McShane - Director of Long Term Conditions at NHS England
  15. slysaint

    slysaint Senior Member

    This is what NICE and the NHS fail to acknowledge and 'hide' from patients, medical professionals and the general public. They need to come clean and openly admit that this is the 'theory' that they support and what their 'treatments' are based on.

    eta: then maybe a few papers to disprove the theory with objective research findings might put an end to it(?)
    Last edited: Jul 26, 2017
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  16. AndyPR

    AndyPR Senior Member

  17. MEMum

    MEMum Senior Member

    This is excellent, succinct and current.

    (Due to being spaced out on painkillers for the last couple of days I haven't really had much of a look at the others.)
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  18. AndyPR

    AndyPR Senior Member

    I wonder how he knows, and I doubt that it'll change anything if it does happen, but I've been wrong before (and if you ask my wife I'm often wrong...;)).
  19. charles shepherd

    charles shepherd Senior Member

    There are a number of initiatives re NICE going on 'behind the scenes' at the moment

    A copy of the special issue of the JHP covering the PACE trial is being sent to Sir Andrew Dillon

    He has responded in a positive manner

    The MEA has also just received a constructive response from Sir Andrew to the MEA letter containing the petition

    I sense that there are some high level communications going on at NICE at the moment in relation to the stakeholder responses

    So a small glimmer of hope……..

  20. dangermouse

    dangermouse Senior Member

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