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The Scottish Good Practice Statement on ME-CFS is online now.

Discussion in 'General ME/CFS News' started by bananaman, Sep 1, 2010.

  1. bananaman


    Bognor UK
  2. hoverfly


    Sod M.E. Patients - we're going ahead anyway.

    On 20th July 2010 a concerned parent, wrote to Ms Nicola Sturgeon, Cabinet
    Secretary for Health in Scotland, to highlight serious concerns of the Cross
    Party Group, regarding the final draft of the `GOOD PRACTICE STATEMENT FOR

    The parent, Mrs xxxx, took a great deal of care and consideration to produce the
    16 page critique, which made it clear that ME patients on the CPG, thought the
    guidelines were totally unacceptable, and not fit for purpose.

    In less than two weeks Mrs xxxx was able to collect 204 signatures, in support
    of her letter.

    Yesterday (Aug 31st) Mrs xxxx, and all XPG members received the response
    published below.

    To summarize - we have all spent no less than FIVE WHOLE YEARS of time,
    effort, stress and anguish, over this document, only to be BACKSTABED by a bunch

    They will publish the document, no matter what the xxxx we think of it.

    LETTER From:Will Scott

    Dear Andy (chairman of XPG),


    I attach a copy of the letter which Shona Robison MSP, the Minister for Public
    Health & Sport, has today sent to Mrs xxxxx xxxx giving a substantive reply to
    the concerns about the Scottish Good Practice Statement on ME-CFS raised by
    members of the Cross Party Group on ME and others.

    As you'll see, the Minister has decided that the Statement, along with the quick
    reference clinical guide and the guide for lay people, should be published in
    the form in which they were submitted by the working group chaired by Professor
    Ritchie. Because of the degree of interest there is in seeing the final version
    of the documents, we are arranging for them to appear on the SHOW (Scottish
    Health on the Web) site tomorrow, Wednesday 1 September. The address at which
    they will be found is:
    but for ease of reference, I'm attaching a pdf version of each document.

    I should also mention that we're seeking endorsement of the documents from the
    Scottish Neurosciences Council and the Council of the Royal College of General
    Practitioners Scotland.

    No doubt you'll wish to arrange for this letter and its attachments to be
    circulated to the members of the CPG. I hope that will give them sufficient
    time to read the documents before the Group's next meeting, on Wednesday 22

    Professor Ritchie has asked me to say that he would be willing to attend the
    meeting to discuss the published version of the documents, should that be
    considered helpful. I'd be grateful if you could let me know whether the Group
    would wish to take up his offer.

    I'd like to draw attention in particular to the Minister's comment in the final
    paragraph of her letter about real progress in the recognition and management of
    ME-CFS depending on patients and health professionals working together in
    future. We very much hope that work on the Statement and the accompanying
    document has paved the way for this in Scotland. The CPG has of course a
    central role to play in promoting that joint working.

    I'll be attending the meeting on 22 September as usual.

    :Retro mad:

  3. Tom

    Tom windows exterminator

    Hi ,
    I posted this link on another thread a tad earlier , could they be merged admins please , so those that know the situation in Scotland can hopefully educate and inform us numpties that got lost at page 4.

  4. Sunshine

    Sunshine Senior Member

    Did someone say something about the Scottish and ME/CFS??! How about this for an explanation on total failure to care for patients.

  5. hoverfly


    Here is the reply to the concerned parent, from the health minister.

    31 August 2010

    Dear Mrs xxxx

    The Scottish Government Thank you for the letter of 20 July 2010 which you and
    xxxxx xxxxxx sent, on behalf of yourselves and, at that stage, 157 others, to
    Nicola Sturgeon MSP, the Deputy First Minister and Cabinet Secretary for Health
    & Wellbeing about the Scottish Good Practice Statement on CFS-ME.

    I am replying, as long term conditions such as this form part of my portfolio of
    Ministerial responsibilities. I'm aware from your further letter of 19 August
    that the number of signatories has increased by a further 47.

    As you're aware, the process of producing the Scottish Good Practice Statement
    has been a painstaking one that has lasted more than 5 years. We embarked on the
    process because we wanted to ensure better and more consistent standards of
    care, including quicker and more reliable diagnosis.
    I won't go through the whole of the history of its gestation, but would like to
    pick it up from the point at which a draft was considered at a special meeting
    of the Cross Party Group on ME in May 2009. My understanding is that while quite
    a lot of the
    text was acceptable, the Group was not prepared to endorse the Statement as it
    then stood.

    The draft also attracted concerns from the Scottish Neurosciences Council, some
    of them relating to substantive clinical issues, and other critical comments
    were submitted through the Royal College of General Practitioners (RCGP)

    These mixed reactions re-inforced the Health Directorates' long-held intention
    of submitting the Statement to a process of peer review. A working group was
    established to take that forward, under the chairmanship of Professor Lewis
    Ritchie, himself a GP in Peterhead who, in addition to being Mackenzie Professor
    of General Practice at the University of Aberdeen, has extensive experience in
    developing Scottish Clinical Guidelines Network (SIGN) Guidelines.

    The outputs from that working group are a revised version of the Good Practice
    Statement, a clinical Quick Reference Guide and an equivalent document of equal
    brevity for use by lay people. I'm aware that these were circulated to the CPG
    in April and discussed meetings of the Group on 5 and 26 May, both of which were
    attended by Professor Ritchie and other members of his working group. In
    addition to these discussions, I understand that more than 100 written comments
    on the documents were received.

    Your letter of 20 July urges the Health Directorates to consider the comments
    from the CPG very carefully before deciding on the final form of the Statement
    for publication and dissemination to GPs. I can assure you that the officials
    responsible have done exactly that.
    I hope it will help if I provide a response to the main concerns set out in your
    letter, as follows:

    • The latest draft of the guidance retains little of the Canadian Consensus
    Document (CCD): in the version of the documents submitted by the working group,
    the CCD definition is now discussed in section 2 and in greater detail in
    section 6. The CCD's clinical working case definition of ME-CFS is included as
    Appendix 2. In addition, the
    severity rating scale in Appendix 3 and the sleep and pain profile in Appendix 4
    are drawn from the CCD. While other diagnostic criteria are referred to, and
    there is a recognition of the lack of universal agreement on the diagnostic
    criteria to be used, the CCD is the only one included in the version of the
    Statement as submitted by the
    working group. It is also flagged in the clinical Quick Reference Guide;

    • the way the guidance has been re-written seriously undermines the objective of
    achieving safe, appropriate healthcare and excludes neurological symptoms that
    are characteristic of ME: patient safety is one of the Government's paramount
    concerns, as indicated in our Quality Strategy. The Scottish Neurosciences
    Council's comments
    on the May 2009 draft included specific concerns that the definition of the
    condition in the Canadian Consensus Document (CCD) was potentially unsafe in
    relation to some specific neurological signs and symptoms.
    The Statement aims first and foremost to assist GPs in the safe, effective
    differential diagnosis of ME-CFS and in its best
    management. The documents as they now stand provide specific additional advice
    for clinicians when using the CCD for patients presenting with ataxia, muscle
    weakness or fasciculations. It makes clear that should these particular symptoms
    arise in any individual patient, he or she should be referred for specialist

    • issues relating to the World Health Organisation classification of ME and CFS:
    the introductory section of the version of the Statement as submitted by the
    working group discusses in detail the terminology of the illness. The composite
    term 'ME-CFS' was used in the May 2009 version of the Statement and has been
    carried forward into the current versions.
    The same term is also used by the Scottish Public Health Network in developing
    its needs assessment, and the Canadian Consensus Document uses the composite
    term 'ME/CFS'. The issue of clinical diagnostic criteria is clearly discussed in
    the version of the Statement submitted by the working group. The Statement
    clearly recognises that ME-CFS is a neurological disorder, as defined by WHO.
    The guidance also recognises that in the differential diagnosis of fatigue
    presenting to GPs, reactive depression is a much more common cause of fatigue
    than ME-CFS, and it would not be safe clinical practice to overlook this
    eminently treatable

    • the approach taken to the evidence base is too narrow. the revised Statement,
    as submitted, has been expanded considerably, and now cites 78 individual
    The limitations of the existing evidence base are acknowledged, as is only
    proper, but so too is the importance of professional clinical judgement in the
    context of limited scientific evidence, and the need to take patients'
    experience into account when agreeing on specific treatments;

    • concerns about the peer review process: the process is described in detail in
    Appendix 5 to the version of the Statement submitted by the working group. I am
    assured that the process has been undertaken in an open and transparent way, and
    in keeping with the internationally recognised methodology used by SIGN, which
    is designed to make sure that the views of no one individual can predominate.
    The full range of peer reviews is given in Appendix 5. The process has been
    extensive and rigorous. As I've mentioned earlier, the extensive contributions
    from members of the CPG have also been taken into account as a valuable part of
    the process.

    Our overall assessment is that the documents as they now stand epitomise the
    type of approach set out in our Quality Strategy, and the Delivering Quality in
    Primary Care National action Plan.

    They represent a blending of the clinical effectiveness evidence with the
    evidence drawn from the experience of those living with the condition. The
    documents also exemplify the principles of empathy and working in partnership
    with patients that are at the heart of our approach to long term conditions
    management. I would like to record my
    gratitude to Professor Ritchie, the members of his working group and all the
    members of the CPG who have contributed to the Statement and the accompanying

    In the light of this assessment, I have decided that the Statement, the clinical
    Quick Reference Guide and the guide for lay people should be published as
    NHSScotland documents. This will take place on 1 September, when the documents
    will appear on the Scottish Health on the Web (SHOW) website.

    My decision is based not just on the quality of the documents, but on the
    clamant need for GPs to have sound guidance in terms of the diagnosis and
    management of the condition. I know this is an aim you fully share.
    Publication now is also timely in the context of the work which NHS Quality
    Improvement Scotland is taking forwarding encouraging local implementation of
    its neurological standards.

    For your convenience, I'm attaching a copy of the documents to this letter.
    The Health Directorates is seeking endorsement of the documents from the Council
    of the Royal College of General Practitioners Scotland and the Scottish
    Neurosciences Council.
    The Scottish Government Health Directorates are writing to Andy Kerr MSP, as
    convener of the CPG on ME, sending him a copy of the documents for circulation
    to the members of the Group. That letter will contain an offer from Professor
    Ritchie to attend the next meeting of the CPG, on 22 September, to discuss the
    published version of the documents.

    As the Statement points out, real progress in the recognition and management of
    ME-CFS can only be made if patients and health professionals work together in
    future. I very much hope that the experience of working on the Statement and its
    accompanying documents
    means that Scotland will be able to set a lead internationally in taking forward
    that mutual

    Posted by Iain
  6. TomStones


    I'm surprised by this as the Scottish parliament has appeared to be on our side on many issues. I imagine that they have been poorly informed by expert advisors.
  7. biophile

    biophile Places I'd rather be.

    IMHO, dismissing the potential relevance of XMRV/MLV in cases of ME/CFS is going to look foolish from now on.

    I'm not going to investigate the documents further, but after a quick scan they look better than the NICE guidelines.

    Slightly off-topic ...

    Over the years we have heard ad nauseam that the symptoms of ME/CFS are "nonspecific" and "nondescript" because they occur in a wide range of conditions.

    The "Quick Reference Patient Guide" ( states:

    "The most typical feature of the illness is exhaustion and malaise or feeling unwell following minimal physical or mental activity. This might not become fully apparent until 24-48 hours after the activity. This feature distinguishes the illness from other forms of chronic fatigue."
  8. nasim marie jafry

    nasim marie jafry Senior Member

  9. bananaman


    Bognor UK
  10. Esther12

    Esther12 Senior Member

    I think CFS patients can be too negative about the NICE guidelines, and this has allowed the mind-mob to act as if NICE fully supports their position, and anyone opposed to their approach is opposed to the evidence surrounding CFS. NICE was pretty clear about rejecting the claim that CBT/GET was a curative treatment - yet this is how it is commonly sold to patients. That Esther Crawley group only allows in members who accept the NICE guidelines - does that mean that all members have swear off selling CBT/GET as curative to patients? I expect not.

    It would have been better for us to think about how we want to present/spin things to others rather than just venting our anger at things not being exactly how we want.

    (Sorry - went a bit OT there).
  11. Tom

    Tom windows exterminator

    As the Alter/Lo paper nor the blood donation ban has made not a whiff of an appearance in the national media , where exactly could things be spun.

    After finally reading all the reports I can fully understand hoverfly's anger because it looks like we have been left to spin upon the middle digit of someones hand.

  12. hoverfly


    Whether or not the guidelines are worse or better than NICE, is really missing the point IMO.


    1) The guidelines are based largely on full blatent lies, ie. 'based on best available evidence' - NOT.
    No metion of XMRV or a retrovirus - shhhh, they got away with it.

    2) They refer to CFS/ME as 'the illness'. But CFS/ME is NOT 'an illness', as it includes many various biomedical and psychological illnesses, including the one that is supposed to be up for discussion, ie. ME.
    The guideline are therefore completely and provably unscientific.

    3) Ten years ago, the main stated aim of the CPG was to work towards a centre of excellence.
    The five years wasted, discussing and endlessly debating these guidelines, has been a massive diversion from this stated priority.

    From thier point of view, thier cunning plan has worked a treat, ie. five whole years talking shop, with no positive outcome, no progress, and the small matter of very ill patients having thier time wasted, and believing that members of parliament are actually paid by taxpayers to represent them, not the medical/insurance/pharma industry.

    Once again corruption has been accepted as normal.

  13. Esther12

    Esther12 Senior Member

    I didn't mean to sound as if I was criticising anyone in particular, or had any great plan ready to swing in to action.

    It was a bit of an irrelevent ramble related to me thinking about the way the Esther Crawley organisation is able to present itself.
  14. nasim marie jafry

    nasim marie jafry Senior Member

    Hoverfly, If you read my blog post which I linked to earlier - and comments - you will see how angry I am too, I am not going to replicate it all here.

    I lost sleep the night the SGPS was published, believe me.

    But considering the state of earlier drafts it *is* a blessing that they are better than NICE, that was my point.

    XMRV is referred to fleetingly under AETIOLOGY as are other biomedical findings.

    Since XMRV is not conclusive they can hardly use it as a basis for guidelines.

    And I have been arguing against the name CFS for as long as I can remember (I was diagnosed in 1984).

    Yes, they are corrupt & evil, the Wessley-ites but I am trying *very* hard to think of the positive aspects of this new guideline.

    As MEA points out, the SGPS missed glaring opportunities, but it could have been worse.

    I too wondered about the blood donation not being mentioned, but perhaps it was too late to include it.
  15. hoverfly


    I read your blog. Your comments re Wessely and Carson are spot on, although they are all taking the usual party line.
    These decisions are being made outwith parliament, by very senior high-ups - near the top of the pyramid.

    Once, at the parliament we were having a fire drill, and while we stood outside, I made the comment that crucial decisions were being made outwith parliament instead of by the Cross party group.
    This was overheard by the chairman (a prominent member of parliament), who uttered the following poetic phrase - "oh f_ _ _ off, your really getting on my tits".

    Real class. Thats politicians for you. Guess I got too near the truth.

    I'm guessing you are too ill too make your presense felt in Edinburgh ?

    Well done for your part in 'What about ME', - I think it will be a stunning film, and I'm very happy with the result so far.
    I've also noticed we were on the same number of posts, - co-incidence I guess ?
    We can't seem to avoid each other this past year, can we ? ? ?

    I bet you have no idea what I'm taking about ?
    I'm going to keep you guessing.
  16. Tom

    Tom windows exterminator

    I wouldn't say it's irrelevant , "they" have professional P.R. and have taken over the spin , "We" have volunteers who are Ill,fragmented support organisations and little by the way of funds.
    It's a no contest really.

  17. Tom

    Tom windows exterminator

  18. nasim marie jafry

    nasim marie jafry Senior Member


    I spent more than 8 years writing and getting my novel about ME published, I am as vocal as much as I can be - I simply can't fight the battle on every front. I sent a copy of my book to Scottish Parliament when it came out in 2008 but never got a reply.

    I certainly make my presence known!

    Yes, you are right I have no idea what you are talking about. I don't go to What About Me site that often and hardly recall where I even posted.

    The chairman's comments are alarming.
  19. nasim marie jafry

    nasim marie jafry Senior Member


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