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Cross Party Group on ME

Discussion in 'General ME/CFS News' started by Yogi, Oct 9, 2012.

  1. Ember

    Ember Senior Member

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    Subsequent to the Scottish NHS Good Practice Statement ME-CFS (2010):
    http://niceguidelines.blogspot.ca/2011/11/nhs-scotland-recommends-to-diagnose-me.html
  2. currer

    currer Senior Member

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    This was last year. So there has been an attempt to reverse this progressive move.
    Ember likes this.
  3. Firestormm

    Firestormm Guest

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    Yeah. Read this: http://www.scotphn.net/pdf/ME-CFS_short_report_-_2011_09_09_Final.pdf

    I read it before. Couldn't understand how it would work and couldn't see if it was ever taken up as a recommendation. I mean first off, the CCC is for ME/CFS and not ME, and nobody to my knowledge has ever researched or compared NICE with CCC to try and understand what difference their application would have on patient cohorts - not to mention treatment outcomes.

    And I still couldn't see how any of this makes the wording of that vote in any way 'better' or 'fairer' or, indeed, a reflection of the real world and the variety of patients wandering around with variously applied LABELS.

    Am away for a long weekend (lucky me). Catch y'all next week. :)

    Edit: Have edited.
  4. Ember

    Ember Senior Member

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    Health care needs assessment of services for people living with ME–CFS – short version for patients

    Scottish Public Health Network (ScotPHN)

    Phil Mackie
    Rona Dougall
    Ann Conacher
    September 2011
    http://www.scotphn.net/pdf/ME-CFS_short_report_-_2011_09_09_Final.pdf
  5. Firestormm

    Firestormm Guest

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    Gods know what that refers to. Maybe y'all can figure it out whilst I am away to middle England. TTFN :thumbsup:
  6. Bob

    Bob

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    After reading more, & thinking further, about the CPG vote.
    It seems that the vote was fundamentally a choice between neurological ICD10 G93.3 and 'all undefined fatiguing illnesses'.
    I personally think the 'ME' vs 'CFS' discussion is a bit of a distraction, as the terms don't mean much unless both 'ME' and 'CFS' are defined.
    But they are defined in the ScotPHN report, so maybe that's what the members/voters had in mind.
  7. Bob

    Bob

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    Scottish Good Practice Statement on ME-CFS 2010
    http://www.show.scot.nhs.uk/App_Shared/docs/MainDoc.pdf
    "The Scottish Parliament Cross Party Group on M.E. is also strongly supportive of the Canadian Consensus Document definition."

    Reference:
    Cross Party Group on ME. Legacy Report. Scottish Parliament, Edinburgh, 2007


    Scottish Cross-Party Group: legacy paper (2007)
    MEA website. April 11, 2007
    "...the Group proposes the adoption of the diagnostic and treatment protocol produced by Carruthers et al (often referred to as the ‘Canadian’ definitions)..."
    http://www.meassociation.org.uk/?p=121
  8. Bob

    Bob

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    Action for M.E. comment on CPG demise
    24 October 2012

    The Scottish Parliament’s Cross Party Group on M.E.’s secretary has announced that the group no longer exists.
    Her announcement follows the resignation of a number of MSPs including convenor Mary Fee and her deputy Siobhan McMahon.
    The MSPs resignations came after a heated and at times acrimonious debate and vote at the most recent meeting of the group over use of the term CFS.
    Action for M.E. Chief Executive Sonya Chowdhury said, “The demise of the CPG is a major setback. The cause of people with M.E. in Scotland can only be furthered through a constructive dialogue with key decision makers such as MSPs.
    “Action for M.E. remains committed to Scotland and a collaborative approach to achieving better services and support for M.E. patients and driving research into the biological nature of this terrible condition. We will continue to endeavour to work with all key stakeholders.”

    http://www.actionforme.org.uk/get-i...-hub-news/action-for-me-comment-on-cpg-demise
  9. alex3619

    alex3619 Senior Member

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    From my understanding the ME/CFS CCC definition was based on ME, not CFS. Its CFS in name only. If I recall correctly those who developed the CCC said as much several times. The definition is ME, but the name includes CFS. This was political. The ICC, developed in part by the same people, deliberately got rid of the CFS label.

    CFS/ME is however CFS with a label of ME, as far as I see it practiced in the UK. CFS/ME and ME/CFS are not necessarily the same.

    So adoption of CCC is really ME with a nod to CFS - its the same principle as calling CFS CFS/ME, but with an ME definition at the core. If anyone has evidence this is not the case I would be interested in seeing it.

    Bye, Alex
  10. Bob

    Bob

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    Yes, that's my understanding as well, Alex. The authors have since said that they included 'CFS' in the CCC only for political reasons.
  11. Yogi

    Yogi

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    There is 15 pages of comment but we are none the wiser about what has happened with the CPG vote debacle. To focus the debate:


    Mary Fee MSP seems to have been one of the best Parliamentarians to stand up for ME and she was clear about the neurological basis for it. The evidence for this is:


    http://www.actionforme.org.uk/Resources/Action for ME/Documents/MSP invite.pdf

    The World Health Organisation recognises M.E. as a neurological condition.



    http://www.meassociation.org.uk/?p=11194

    M.E. is recognised by the World Health Organisation as a neurological condition and can result in muscle pain with intense physical or mental exhaustion, relapses and specific cognitive disabilities.



    1. Therefore who specifically are the ME activists and what specifically have they done to force her to resign?
    2. The vote mentioned above does not make sense as the CPG and Mary Fee believes ME (and CFS) are neurological (ICD-10 G93.3)?
    3. Have the activists made a public statement in response to this debacle?
    Firestormm likes this.
  12. Firestormm

    Firestormm Guest

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    Discovered a letter from the Scottish Neurosciences Council 23 June 2010 in reference to their concerns over the CCC from this website: http://www.cathcartmesupportgroup.org.uk/2.html

    So it would appear from this limited search result of mine, that a draft of the Statement was circulated to include the Neurosciences council, who expressed their concern, resulting perhaps in a somewhat, how shall I say it, 'more realistic' or 'diluted', final Statement to be produced.

    Since then, 'lobbying' has occurred in an unsuccessful attempt to separate 'ME' (as defined variously), from 'CFS' (which is now being associated with just about anything else involving 'fatigue' as a symptom in some people's minds).

    And in the meantime (and even before) science has failed to prove buggar all through pathology, which is the only means by which this whole kerfuffle will ever be resolved.

    Clinical definition of 'ME' might be argued as distinctive from 'CFS' but not in the research arena. What would happen, for example, to all the studies relating to 'CFS' using 'Fukuda'? I mean if you take all of them out of the equation....!

    Worth noting perhaps references anyway to psychological interventions. I think some are convinced that a separation and unique definition of 'ME' will result in some improved treatment options that do not involve perceived psychological interventions. Rather naive I think even and especially for any neurological disorder but even those for whom a 'cause' has been identified.

    Of course we will never, here, get to the bottom of what happened to disband this CPG. Even the minutes do not reveal all that happened; and as Yogi says above, unless we hear from Mary Fee and the others exactly why they felt the need to resign, and what/who prompted their decision - we are in darkness.

    Still, I shall be intrigued to read of your deliberations when I return.

    Edit: Have edited further.... :)
  13. Esther12

    Esther12 Senior Member

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    Thanks for that Fire.

    I've still not got any idea what went down or why.

    I wonder what interpretation of PACE the Scottish Neurosciences Council wanted?

    If the document they were criticising was promoting purely experimental treatments, then I think that this is a mistake - I'd generally prefer a much more cautious and sceptical approach to the promotion of treatments.

    Is this view right?

    Just looking in to what ataxia is, and how it's diagnosed, it seems like a rather bold claim from The Council.

    The fact that they write in such a confident manner means that I feel emotionally more drawn towards trusting what they say... despite the fact that it should make me more suspicious.

    I was reminded of this section from White's book on BPS:


    Maybe my desire for a more cautious and sceptical approach is poor politics (or psychology).
  14. Valentijn

    Valentijn Activity Level: 3

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    So a bunch of neurologists objected to ME being diagnosed and treated as a physiological disease ... surprise! They probably just rewrote a letter regarding MS from 30 years ago and changed it slightly to reflect the different names and diagnosing criteria :p

    I'm not sure why neurologists are afforded such prestige - historically they seem to be one of the specialties with the most members that are incapable of intelligent and independent thought.
  15. alex3619

    alex3619 Senior Member

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    They don't take the claim of ataxia seriously, nor that of other neurological issues. Most people with CFS (Fukuda I think) have gait ataxia. We have other neurological signs and symptoms too. In fact under strict ME neurological signs are important. So if they consider neurological signs mean a person cannot have CFS, why are they not in favour of ME and CFS being separate diagnoses?
  16. Esther12

    Esther12 Senior Member

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    Do you know of any evidence on this? I couldn't find much either way.

    Also, the Mayo Clinic guide on diagnosing ataxia seemed to have significant differences to the NHS one - could this explain the different views?

    This is the sort of research area I'd normally avoid, but I'm a bit curious now.

    These two (old) references are mentioned as supporting an association between CFS and ataxia:


    • Komaroff A in Hyde D (ed.) The clinical and scientific basis of myalgic encephalomyelitis/chronic fatigue syndrome. The Nightingale Research Foundation, Ottawa, Ont. Canada. 1992: 228-34.
    • Buchwald D et al. Ann Int Med 1992; 116:103-113.
    in this piece which seems to be saying there is not really an association (kind of) :

    http://www.cfids.org/archives/2000rr/2000-rr4-article03.asp

    It also says things like "MS patients rarely report cognitive problems, but cognitive problems are common in CFS patients", which doesn't fit with what I've read about MS, or been told by someone with MS.

    If different people are diagnosing CFS in different ways, and diagnosing ataxia in different ways, then working out whether there is 'really' any association would seem rather difficult.
  17. alex3619

    alex3619 Senior Member

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    The evidence on gait ataxia is OLD. I read it like a decade ago. I will look for it.

    The CCC mentions ataxia in the diagnostic definitions:
    5. Neurological/Cognitive Manifestations: Two or more of the following
    difficulties should be present: confusion, impairment of
    concentration and short-term memory consolidation, disorientation,
    difficulty with information processing, categorizing and word
    retrieval, and perceptual and sensory disturbances…e.g., spatial instability
    and disorientation and inability to focus vision. Ataxia,
    muscle weakness and fasciculations are common. There may be
    overload1 phenomena: cognitive, sensory…e.g., photophobia and
    hypersensitivity to noise…and/or emotional overload, which may
    lead to crashŽ2 periods and/or anxiety.

    Motor Disturbances: Ataxia, muscle weakness and fasciculations,
    loss of balance and clumsiness commonly occur. There may be an inability
    to automatically attune to the environment, as in accommodating
    footfall to irregular ground while walking and temporary loss of
    basic habituated motor programs such as walking, brushing ones teeth,
    making the bed and/or dialing a telephone.

    Or this: http://www.meactionuk.org.uk/what_is_me_what_is_cfs.pdf which discuses it briefly.

    There was a paper that did gait analysis, I am still looking for it.
  18. Ember

    Ember Senior Member

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    .
    Health care needs assessment of services for people living with ME–CFS – short version for patients

    Scottish Public Health Network (ScotPHN)

    Phil Mackie
    Rona Dougall
    Ann Conacher
    September 2011

    Recommendations​

    1. It is recommended that the clinical, symptomatic definition of ME​
    outlined in the Canadian guideline be adopted in Scotland.​

    2. It is further recommended that a symptomatic definition of CFS, based​
    on that proposed in the NICE guideline, be adopted in Scotland.​

    3. a) There is an urgent need for a sound epidemiological study of ME​
    and CFS in Scotland; in which regard consideration should be given to​
    including ME and CFS within the Scottish Health Survey.​
    b) Routine reporting of ME and CFS should be considered within the​
    context of developing information systems for long-term conditions​
    monitoring under the Quality and Outcomes Framework (QOF).​

    4. The existing research strategy in Scotland in relation to ME and CFS​
    research should be reviewed by the Chief Scientist’s Office and a new​
    strategy developed, aimed at broadening the evidence base for​
    ME–CFS. To ensure effective communication of the existing, diverse​
    evidence base, consideration could be given to developing a centre for​
    research excellence and dissemination.​

    http://www.scotphn.net/pdf/ME-CFS_short_report_-_2011_09_09_Final.pdf
  19. Esther12

    Esther12 Senior Member

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    Don't worry if it's a trouble. It's easy to spend a lot of time hunting for some half-remembered study! Thanks for the offer though.

    I could always look up the Canadian Criteria, and see what their reference for the claim is. (PS: they didn't seem to have one).
  20. Firestormm

    Firestormm Guest

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    That is the 'needs assessment' not the Statement and as I said I have not been able to understand what impact or power this assessment has (or has had) on any health authority. It does not appear to have changed the Statement for example, although I dare say it gave 'hope' to some patients and caused confusion among others including perhaps doctors.

    It was the draft Statement of Good Practice ME-CFS from NHS Scotland - that was sent to the Neurosciences Council and to which they replied in their letter above (there were probably further exchanges I don't know). The published Statement does reference the CCC, but as per my previous extract from page 3 - it does not separate CFS from ME based on this clinical definition.

    Statement published 2010: http://www.show.scot.nhs.uk/App_Shared/docs/MainDoc.pdf and I took the Statement as being equivalent to the NICE Guideline in being a best practice document.

    Page 5:

    Section 6 from page 32:

    The Needs Assessment from 2011 may well have some greater impact if indeed it is recommended a 'split' in the outcome of diagnosis based on CCC for 'ME' and NICE for 'CFS'. I do not know to what extent that later publication will impact upon the above or, indeed, how 'any old' 'fatiguing illness' became attached to 'CFS' in the vote.

    If the Statement was published in 2010 it may be that it's due for review. However, I have to ask how many of those pushing for change and 'better recognition' for 'ME' will want to ditch CCC in favour now of ICC. And who's to say that next year we won't have another volte face?

    Alex - I would be interested to learn what 'neurological SIGNS' you seem to think people with ME display, please. This has been a bone of contention for many years now. Remember 'SIGNS' are not 'SYMPTOMS'. Not that you need me to underline that point.

    Page 6 of the Scottish Statement:

    Page 7 and 8:

    Page 9:


    Well that's me done for now. Thanks all. Best pack me case :)

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