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Cross Party Group on ME

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

  1. Yogi

    Yogi

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    Is scotland separating ME and CFS?

    I read the following from MEA website. Does anyone have further info on this?

    http://www.meassociation.org.uk/?p=13117

    Over the summer recess, a dispute had grown within one of the subgroups, which was escalated into a demand being placed before the MSPs that the full CPG vote on whether it restrict its remit to ME or expand it to ME/CFS.
    The CPG on ME was set up recognising the benefit of emphasising ME over CFS or any hybrid terms of ME+CFS, while also recognising the need to include individual patients with a range of diagnostic labels between ME and CFS when developing service provision, and recognising the danger in sharing terms such as CFS/ME used by those opposed to proper recognition of ME.
    The MSPs made it clear that they would not countenance exclusion of patients with a CFS diagnosis from the group’s remit, but acceded to the demand for the vote being placed to the CPG attendees without amendment. The faction who demanded the vote insisted that any inclusion of CFS would hand the remit of the group over to those opposed to proper recognition of ME.
    At the CPG meeting on 19 September, it became clear that the basis for the vote was being misunderstood by some people who were not fully aware of the original reasoning in the group’ remit, and who believed in the danger claimed by those who authored the vote. But the MSPs also made clear their position regarding the options in the vote.
    At the meeting, and by postal vote, a majority voted for the ‘ME only’ option while a smaller number (including Ewan Dale) abstained (on the basis that the existing remit better represented patients’ interest than either option), and a few voted for ‘ME/CFS’. So the group effectively voted to abandon its activities in the Scottish Parliament – in doing so leaving it open for those it is opposed to having unchallenged influence over development of health policy nominally covering ME.
    CGP convenor, Mary Fee MSP, recognised that the vote was not necessarily properly explained or fully understood, and undertook to try to get that vote set aside and a second, properly-stated vote put to the membership, but she will need to persuade her fellow MSPs to accept that, and any future for the group is now hanging on this last decision.
  2. ukxmrv

    ukxmrv Senior Member

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    I hadn't read that particular report. The 25 % group were in favour of the vote and in favour of the results. Also the TYMES trust and these has been the only accounts of the vote I'd read so far (I think on their facebook pages at the time of the vote).

    I'd not been aware of who voted "no" or their thinking on why.
  3. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The MSPs made it clear that they would not countenance exclusion of patients with a CFS diagnosis from the group’s remit, but acceded to the demand for the vote being placed to the CPG attendees without amendment. The faction who demanded the vote insisted that any inclusion of CFS would hand the remit of the group over to those opposed to proper recognition of ME. ( SCOTTISH MATTERS, MEA)

    IVI
  4. Ember

    Ember Senior Member

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    Our clinic in Vancouver is doing the same:
    • :)
  5. Mark

    Mark Acting CEO

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    I'd like to hear more detail about this and it will be most interesting to see how this develops. On the face of it, from the MEA report, it does sound like a classic case of shooting oneself (or one's fellow patients) in the foot because of an over-emphasis on dogma and nomenclature rather than real-world pragmatism. And IVI's term "political grandstanding" does sound apt for that kind of stance: when being seen to be holier-than-thou and politically perfectly correct is more important than meeting practical, real-world needs. I hope I'm proved wrong in that impression (which is based only on the MEA quote above), because the progress in Scotland has been very encouraging. But it does remind me of the political quote that has stuck in my mind more than any other I've heard in my lifetime:


  6. Holmsey

    Holmsey Senior Member

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    Well that's another great own goal. A word, any word, is no more than a symbolic reference to convey an emotion, concept or objective classification, language develops as we hone that shared understanding, gain clarity over exactly what that word is supposed to represent.

    How in any of that can someone pick up the word like it's their football and sulk off home beleiving they've somehow overrulled that natural process.

    When we're seen to operate under the politics of 'my way or the highway' is it any surprise we're branded as extreme, irrational and bullying. I hope whichever group these people were there to represent will take the appropriate action.

    One to go with Mark's great quote, 'A man convinced against his will will hold the same opinion still'. We win the case by reasoned debate, we debate by engaging, I hope these people recognise the very real damage they have done with this absolutely pointless stunt.
  7. Bob

    Bob

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    The current set up for the CPG on ME is that the emphasis is on 'ME', but incorporates the needs of those with 'CFS'.

    So why did they allow a vote to go ahead which did not include that option, and then complain that they don't have a remit to carry on their work? It doesn't make sense to me.

    The voting options seem to have been for the remit to be: for 'ME' patients only (excluding 'CFS' patients); or to 'expand' the remit and name to 'ME/CFS'.

    It even says that a few members abstained because there was no provision for the status quo.

    It seems like an administrative blunder to me.

    But it might also demonstrate that the CPG on ME don't really understand all of the issues, or the strength of feeling, about mixing 'ME' with undefined fatiguing illnesses. So it suggests a bit of a failure to understand the issues on their part. (Not that I know anything about the situation in Scotland, so I'm just speculating.)

    Considering all the politics and science, it's not much of a surprise that many voters wanted the CPG to specifically be about promoting the needs of ME patients, and not patients with other undefined fatiguing illnesses. (I'm not expressing my opinion on what the CPG on ME should do.)

    If we are to get anywhere with the science of ME, then at some point we've got to start understanding that 'ME' patients have immunological and neurological abnormalities, and that research needs to be done in this area. And we've also got to start promoting more exclusive diagnostic criteria for research purposes.

    I think it's a really big disappointment that our patient organisations don't make more of a noise about sub-sets, and about using more exclusive diagnostic criteria for research. I think they would be supporting all of their members much better if they were more aware of the potential differences in the conditions that their members suffer from.

    Maybe if the CPG on ME had been more forthright about promoting the differences between ME and chronic fatigue etc., then the situation wouldn't have got to the point where some activists felt a sense of frustration, such that they wanted to force this vote.

    Without a fuller picture of what actually has been going on in the CPG for ME, I don't think we can really comment on people's wisdom etc.

    I absolutely don't agree with the comments in this thread about 'grandstanding' or 'stupid'. I think such comments display a lack of insight into very complex issues.
    taniaaust1 and Adamskitutu like this.
  8. Holmsey

    Holmsey Senior Member

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    While there's no difinitive objective test associated with either ME or CFS, how do 'we' even know who falls into what group, everything I've ever read on naming suggests that even non psyc's can't agree on what should or shouldn't be included. That's where CPG's can actually be useful, in coming to some common accord.

    Let's say this group had their way and only those with ME were to be considered, who would get to decide how you decided who they were, by the sounds of it that would have been a good objective goal for the CPG.

    Someone point out to me where leaving was rational.
  9. Bob

    Bob

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    The ICC is an exclusive criteria that diagnoses for 'ME'.
    peggy-sue and taniaaust1 like this.
  10. SOC

    SOC Moderator and Senior Member

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    Do we know if they are using ICC to diagnose ME? I suppose a possible division could be: ME is defined by the ICC, CFS would then be defined as meeting the CCC but not the ICC.

    And before anybody gets their panties in a twist, I'm simply supposing a way they could be distinguishing ME from CFS, not that it is (or is not) the best way.
  11. Bob

    Bob

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    I've not heard of anyone, anywhere, using the ICC, for any purposes, yet.

    The CCC says it diagnoses for 'ME/CFS'. So that doesn't really help to answer your question.

    The CCC only just seem to be catching on. For example, CFSAC are now recommending that the CCC is used. So it seems that it might be a few years before the ICC start to become well known.

    I think that ICC authors say that the ICC is designed to replace the CCC.
  12. SOC

    SOC Moderator and Senior Member

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    Ah, for some accepted biomarkers! :)

    I thought the ICC was intended to replace the CCC, too. But isn't it more stringent in its requirements? It's been too long since I compared them side-by-side. :confused:
  13. Bob

    Bob

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    I'm not certain if the ICC is more stringent than the CCC.

    I can't remember if I've ever made a side-by-side comparison.

    The ICC incorporates an 'atypical ME' diagnosis, which is probably less stringent (more inclusive) than the CCC.
  14. ukxmrv

    ukxmrv Senior Member

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    In the UK and that includes Scotland there are many patients diagnosed with ME from before CFS. This group has been fighting for decades to try and maintain groups, charities and other resorces for the use of ME only.

    Historically, UK ME patients have been doing this for a long time but limited sucess. These are patients diagnosed with ME by the original ME doctors here (who have died out or retired now). We are talking ME as described by Ramsay and include the original Royal Free patients, other UK epidemic patients and endemic patients.

    Original ME patients are split over the new criteria. That's another story.
    Bob likes this.
  15. Holmsey

    Holmsey Senior Member

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    Hi Bob, 'we' constantly point out that the WHO list our illness (group) as a neurological condition, this is dictated by the agreed ICDn code. Last I heard, ICD10 I think, with ICD11 being discussed but including no plan I've heard of to seperate ME and CFS.
    This means that any attempt by the Scottish Government to acknowledge that there perhaps should be a seperation has been won by reason, reason 'we' as a patient group no doubt helped suppy. The ICC may make a distinction between a notional 'ME' which alludes back to its post Royal Free beginings and a notional 'new' definition for 'CFS' and 'PVS' but until that is in the first instance, widely accepted as the new defintion, and secondly re-applied to anyone who was diagnosed by any other means, then my entire argument stands.
    Those politicians who have agreed to participate in this CPG, in my opinion, are entirely correct in refusing at this point to accept anything other than an intention, at some future point, to propose a seperation of ME and CFS, until then it is entirely likely that anyone in Scotland who has a diagnosis of 'CFS' is as likely to have 'ME', in which case it would be counter productive to force a minority 'opinion' on the group.

    I hold the opinion, based on all that I have read, that I have ME, I however live in Scotland with a diagnosis of ME/CFS.

    In short, until we have full agreement as to what 'ME' is and how it differs from what 'CFS' is then patients are as likely to belong to one sub-category as the other. One group trying to impose a difference won't make any difference to that debate, you have to win that arguemnt through reason not imposition, and as I said, arriving at that point involves co-operation not self imposed isolation.

    Regards,
    Adamskitutu and SilverbladeTE like this.
  16. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Holmsey
    Agreed as it's damn stupid ot push this and destroy a positive group trying ot help us
    work on the big problem FIRST
    then we can deal with smaller issues later
  17. Purple

    Purple Bundle of purpliness

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    I think the main thing is to separate what I know as ME - a chronic complex multisystemic and currently incurable disease - from the short term self-limiting (post-infectious?) state from which people recover completely and spontaneously and never relapse. Calling both these ME (or CFS or PVFS) is not helpful - those who are not lucky enough to have the short term self-limiting illness only suffer as a result.
    SOC and Bob like this.
  18. ukxmrv

    ukxmrv Senior Member

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    The ME patients who supported this may feel differently. One thing that I've heard mentioned before is that AFME has been using this group to try to get into Scotland the same "fatigue" clinics that they support in England.

    The ME groups and patients voted to have the group for ME (what they called G93.3) in the ballot may have been voting to keep the group against the action by AFME.

    The other groups and patients who voted for ME in the ballot may not agree with the report above. I'd like to caution not making a decision based on one report. I'm told that the MEA is being aproached to write something more balanced. Some patients are saying that the report above isn't accurate.
    peggy-sue, taniaaust1 and Bob like this.
  19. In Vitro Infidelium

    In Vitro Infidelium Guest

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    What has a complex issue got to do with an APG ? It's a political forum where patients and patient organisations have a chance to impress upon politicians the need for resources, political initiatives and policy changes - there's no room for 'complex'. Politicians need 'simple', and navel gazing debates about medical classifications which have no expert agreement ( politicians need 'expert' for justification) are merely embarrassing distractions which pursuade politicians to stay well away from potentially poisoned chalices.

    IVI
  20. Holmsey

    Holmsey Senior Member

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    Amen to that, I spent most of last year and a good part of this petitioning ministers directly while also attending surgeries in an attempt to get accross a wider view of this illness. MP's beleive what so called 'experts' tell them, that's a very hard nut to crack. Look at it from their point of view, they can go with the flow or stick their neck out, politics isn't an area where you see to many heads poking through the fence but rather a line of turkeys sitting on it so 'experts' as IVI suggests provide a safe haven.

    So, here we had a direct line to get that wider view accross to MP's, to chisel away at the 'expert' view with reason, evidence and good will, what do we do instead, demand a distinction based entirely on opinion be made then walk away, as we say in Scotland, in the huff.

    Go us, go progress, go boil yer heed...did these people not understand what a privelage it was to have an allocation of not one but ALL party time, if this can't be salvaged we've blown a great opportunity.
    peggy-sue and Firestormm like this.

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