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Cross Party Group on ME

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

  1. Firestormm

    Firestormm Senior Member

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    Ok. Well. Done a bit of digging - trying to gain some better perspective. Found this on the 25% Facebook page:

    Posted on 20 September 2012 followed by:

    91 comments followed including:

    Well it degenerates even more after that. I didn't know other UK charities even had a vote. Thought it would be a Scottish issue.... Sure there's far more to it than meets the eye. Seems that way to me.

    You know if I look back on my medical notes over the past 15 years I am pretty certain that those dreaded initials C.F.S. appear on my notes more than the 'preferred' M.E. What has been interesting is that even on the 25% Group's website they include CFS, same goes for Tyme's trust in the research they cite on the main page for immune abnormalities.

    Either we ARE talking about a preferred label, OR we are talking about a preferred criteria, OR we are talking about preferred research (that will include the dastardly 'CFS' criteria or at least will not be solely relating to 'ME' cohorts).

    Personally, I think different people are wanting different things based on different levels of understanding and that not everyone is aware of the issues or even of the research - let alone the history - or what it would take to overcome the (often) valid medical objections to changing (back) to Myalgic Encephalomyelitis.

    Finally, and then I'm done, if 'ME' is a subgroup based on something or other, then how can the same prevalence figures be cited by those purporting to support this notion? Even the ICCME does this.
  2. Firestormm

    Firestormm Senior Member

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    I can't find anything else on either of the websites about this specifically, but if the above is true - i.e. that the 'vote' was to (presumably) have separate 'ME Clinics' from 'Fatigue Clinics' then that adds a different twist to the debate I suppose - or maybe not.

    Of course what the above doesn't say, is what precisely the vote taken was about. What was the question posed? Anyway, I'm done. Cream-crackered - but if you read through the thread that carries the announcement (though many of the posts have apparently been deleted) it is very much an issue about nomenclature on there at least.
  3. Holmsey

    Holmsey Senior Member

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    Hi Firestorm -
    Scottish good practice statement on ME-CFS
    Formally endorsed by the Royal College of General Practitioners (Scotland)
    and the Scottish Neurosciences Council

    http://www.show.scot.nhs.uk/App_Shared/docs/MainDoc.pdf

    Some text for those as tired as I am,
    The purpose of this Scottish Good Practice Statement is to provide general practitioners
    with guidance that can be used to assist with the differential diagnosis and clinical
    management of patients with MECFS.

    At present, the diagnosis of MECFS remains clinical, based on recognising specific
    symptom patterns. Currently there are no specific tests available to confirm the
    presence of the illness. There are many conditions that can present with some symptoms
    that are common to MECFS, but differential diagnosis must be carefully applied and
    should enable MECFS to be accurately identified. Patients should be encouraged about
    establishing the correct diagnosis and may need to be reassured that listing those other
    conditions for the purposes of differentiation does not imply any judgment about the
    nature of MECFS.
    The World Health Organisation (WHO) has classified Benign Myalgic Encephalomyelitis
    (ME) including post viral fatigue syndrome, under disorders of the nervous system
    (neurological diseases) ICD 10 G93.3.
    This particular WHO classification underpins this present guidance. (Note: the equivalent
    Read code to ICD 10 G93.3 is F286.) A number of other attempts have been made to
    define the illness, none of which are universally accepted


    and...
    Health Care Needs Assessment of Services for people
    living with ME-CFS

    http://www.scotphn.net/pdf/Final_report_web_version_271110.pdf

    Final version published 29/11/2010.

    again, for those to tired to read it all..
    Perhaps the only incontrovertible aspect of defining ME and CFS is that agreement is
    elusive. Whilst this is largely a consequence of historical debate, the continued failure to
    recognise the importance of the wider research base and the many, differing clinical
    opinions regarding aetiology all continue to exert a divisive influence on the subject.

    However, whilst such an approach can help identify the clinical features of ME, it can also
    have the effect of excluding other forms of CFS which do not display the wider neurological
    features. The consequence of this may be to exclude those who still require investigation
    and sign-posting towards appropriate assessment and – where appropriate – intervention.

    Recommendation 1:
    It is recommended that the clinical, symptomatic definition of ME outlined in the
    Canadian Guideline be adopted in Scotland (See Box 5.1).
    Recommendation 2:
    It is further recommended that a symptomatic definition of CFS based on that
    proposed in the NICE guideline be adopted in Scotland (See Box 5.2).


    To my knowledge neither of these recommendations have as yet been adopted and so the first document is that used by clinicians. In either case, no re-assessment of existing patients diagnosed with the former accepted WHO - ME/CFS catch all has been undertaken.








    Best regards from Scottishland,
    Firestormm likes this.
  4. Firestormm

    Firestormm Senior Member

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    Thanks Holmsey,

    Kind regards,

    From Pasty-land :)
  5. Holmsey

    Holmsey Senior Member

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    Pasties like where the pixies are, if so, my favourites.
    Firestormm likes this.
  6. Firestormm

    Firestormm Senior Member

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    We got pixies in Cornishland? Where? Buggar no-one tells me anything! And I have ME so surely I'd be seeing them? :D

    Footnote: I do find that one survival mechanism intrinsically valuable, and finessed over the years, has been the ability to self-defecate. No. No. That's the wrong word isn't it? I mean isn't it? Deprecate. That's it. Yes. To actively engage in self-deprecation is a great source of humour at times and preservation. There. And who said I see pixies?! :)
  7. ukxmrv

    ukxmrv Senior Member

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    Thanks for trawlling through the Facebook entries and finding that Firestormm.

    Hopefully the MEA will continue to update their report to something that is more understandable and factual (if it isn't).
    Firestormm likes this.
  8. In Vitro Infidelium

    In Vitro Infidelium Guest

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    As far as the UK is concerned, there's a great divergence in the perspectives of what constitutes effective engagement between (very crudely) on one side, AfME and MEA, and the smaller organisations (which tend to only be locally strong) on the other. Again - very crudely - AfME and MEA have pursued policies that could be characterised as 'quiet engagement' with politicians and health administrators - while other organisations have (to varying degrees) pursued more oppositional responses. There is no way to achieve a satisfactory a consensus between these two approaches and effectively the organisations arrive at (with varied success) seperate positions on a case by case basis. For the most part I belive the interactions are cordial but the divergence amonst organisations is not conducive to inspiring confidence amongst politicians and health administrators - that the Westminster APPG on M.E now meets only in private is in part testimony to that lack of confidence.

    From my own perspective, although I think both have at time erred too far on the side of caution I consider that AfME and MEA have followed a line that accurately recognises political realities and while frustration at slow progress is inevitable, I don't have any confidence that oppositional tactics will do anything other than ossify entrenched positions - political and professional. I come back to the same point - it's about understanding the audience you are talking to.

    IVI
  9. In Vitro Infidelium

    In Vitro Infidelium Guest

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    There is no known aetiology – therefore no criteria set can be shown to differentiate between one illness state and another – that’s the whole point. Diagnosis is by gross symptoms whether you use the terms CFS or M.E, there is currently no aetiology that allows one to be separated from the other, even if they are two names for two separate conditions.

    I’ve never suggested I do prefer one to the other. In the terms that they are applied to the currently identified global patient population, both are scientifically without rigour. My argument is that arguing about the name in the context of political engagement is profoundly crass. No where have I argued that one is better than the other – pragmatically I’d say M.E/CFS is the best available advocacy usage and CFS/M.E s not worth arguing about in research contexts. At no point have I insulted any individual or group – I have been (in my view entirely appropriately) very disparaging about the behaviour and tactics used in particular advocacy contexts and about the underlying inadequacy of M.E/CFS advocacy in general. Being prevented from insulting an idea is something usually only seen in contexts of inhibition of religious heresy.

    I have no idea what any of that means, I imagine that the average MSP would find it even less meaningful. It’s always worthwhile checking one’s references before claiming they support an argument - Postexertional malaise in women with chronic fatigue syndrome. http://www.ncbi.nlm.nih.gov/pubmed/20095909

    That is not precisely what I have said – to do have done so would have meant accepting the absolute basis of two definitive disease states, I have no idea what patient captures will be demonstrated once definitive aetiologies are established. In the context you quote me – the point is if your argument is that M.E/ and CFS are different, then you can’t claim the 1:240 people affected. In which case in the Scottish context it’s not 20,000 people but a lesser number – so what is that number ? 10,000 ? 5,000 ? just 1,000 ? Maybe so small it’s not worth the MSPs putting in any effort ? Maybe the MSPs should concentrate on the bigger number – the CFS incidence ? Remember this is not my argument – in advocacy terms I don’t want to be here – 1:240 is something to work with, cutting that down seems utterly daft to me.

    I have read your posts which is why I asked the questions. Of course research, treatment and patient well-being are inextricably intertwined, but how are a group of MSPs expected to impact that ? Asking something of politicians that they can’t deliver, in terms that make them disaffected from the supposed co-operative process, and on the basis of a philosophical argument that has no expert reference is no way to achieve progress.

    IVI
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  10. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The WHO classification has become more a source of confusion than it has of any help: I wrote this on another thread a couple of days ago –
  11. Esther12

    Esther12 Senior Member

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    I've been pretty unimpressed by almost everything I've seen from AfME.

    This has rather reminded me of some of the things I dislike about MEA too. The trouble is, the more hostile groups seem to end up being hostile in ways I disagree with. I want a really militant and aggressive group committed to the unrealistic notion that patients should be spoken to honestly by their doctors, and that it's unacceptable to promote positive cognitions by spinning and misrepresenting the evidence.
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  12. Bob

    Bob

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    The Oxford CFS criteria does not require 'post exertional malaise', so it seems to me that asking for the term 'ME' to be used, at least would protect against weak diagnostic criteria like the Oxford criteria being used. It might also provide some more dignity to patients at the same time, simply because it's a more respectable name.

    According to you, 'ME' and 'CFS' are no different, or there's no evidence for any difference.
    So, in your opinion, the difference all comes down to politics.
    Politics is complex and subtle, and comes down to a matter of personal judgement.

    At one point you argue that there's no evidence that there is a difference between 'ME' and 'CFS', and then you use the argument that using the term 'ME' would result in exclusion. So your position seems confused. If it's just a name change, and it doesn't affect diagnosis, then what's the problem? From your point of view, there's no more evidence to support the use of 'CFS', than there is to support the use of 'ME'. So 'ME' is just as valid, using your arguments.

    Personally, I think the nomenclature is a bit of a distraction, but not unimportant. Simply changing the name on its own, is just symbolic, but it could help push the focus towards different cohorts and biomedical research.

    I'm not advocating for the use of 'ME' in clinical settings. But I'm just attempting to explain some of the issues.

    I understand many of the arguments for and against changing the diagnostic criteria used in a clinical setting. I understand that there are strong points of view held for good reasons, and sometimes I agree with some of them, but I'm not always certain that I agree with them. So I tend to sit on the fence about that specific issue.

    Of course, subjecting neuro-immune ME patients to failed therapies, designed to treat 'maladaptive' cognition and behaviour, in a clinical setting, is a major problem, for various reasons. And this is all part of the mix re nomenclature and diagnostic criteria.


    A question for you, IVI. I'd be interested to hear your views about why some ME patients hold such strong opinions about this subject (e.g. that the name 'ME' should be used, and that 'post exertional malaise' should be a requirement for the diagnosis of 'ME')?
  13. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Sounds like we're back in the garage, with the band having agreed a name - but left with problem of whether anyone is ever going to want to listen to their angry politico thrash metal, or at least anyone who'd actually be impressed with the 'message' ......... OK I'm not being serious, er ... if you weren't !?

    I do think there is though something serious at the back of a wish for militancy and that's the narrowness of what appears to be the range of acceptable imagery that works in communicating M.E/CFS advocacy. Fey young women propped up on pillows, wan looking children, haggard but serious faced middle aged blokes, and the latter's female counter part ensconced in a 'granny' upright chair, all fit with the 'expectations of 'mysterious but serious disease', while Pussy Riot, RAM or Rockbitch somehow don't work. I really don't know how to square that circle, but given the general attitude to the 'undeserving ill' that pervades our body politic, working outside the expected imagery (both graphic and textual) ought to command considerable thought before embarking on any radical directions.

    IVI
    Holmsey likes this.
  14. Holmsey

    Holmsey Senior Member

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    I know, I was down looking for them earlier this year, didn't see one yet, I'm beginning to think they're just made up. It was actually our last chance to take my father in law on holiday, passed away a month or so back, abroad was out for him given the C. but he never stopped talking about his holiday right up until the end, nice part of the world full of real people.

    I agree, and everyone else is fair game once you've got running yourself down out of the way.
    Firestormm likes this.
  15. Holmsey

    Holmsey Senior Member

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    Liked the whole post but that stood out.

    I've been trying to understand why I got so worked up over this and it came to me at about 3.15 this morning.
    The first person to suggest 'this illness' was a gastroenterologist two months in, I didn't even know what IBS was let alone PVS. Next up was the ENT guy less than a month on, 1 month high dose antibiotic "if my stomach would take it" and six months on an inhaler, all he said was "he'd seen this before and hoped we could halt it if we hit it hard enough now". My GP was the first to say 'ME', by then I'd gone from half marathon to half dead. Still, I kept finding reasons why that couldn't be it and I was sent through my GP but paid for by my employer to what my GP termed a 'specialist in the field'. This guy said I ticked every box on the grid, but he didn't like the term ME and preferred CFS for reasons he never gave and I never asked, back then I didn't care what anyone called it, just that I had it.
    Anytime it's written down now it's ME/CFS, I suffer PEM, I never hear it mentioned but I suffer post exertional myalgia as well, that for me is even worse than the fatigue, my muscles and joints hurt so much I'm constantly doped up on pain killers and just want to lie still, not that still covers it because you shake imperceptibly but relentlessly. My sleep patterns are destroyed, I suffer by light and sound, often just asking people not to speak, especially in the mornings.
    I've no idea what anybody in this thread means by CFS or ME, I know there are people worse than myself, but I'm also sure that given what I've been through, what I'm going through, I'm not ever going to accept someone else's word for it that they need, no deserve, 'special treatment' and I don't just because the professionals can't decide what to call me. Neither will I 'announce' I'm something other than 'either' PVS, ME, CFS, ME/CFS or CFS/ME. Until we have a test to say they're different then none of them are accurate and we all could be any one or all of them together, we just don't know.

    Sorry, said I wouldn't comment further.
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  16. Firestormm

    Firestormm Senior Member

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    Indeed. I was being rather rhetorical in my comment viz. I would suggest that some people see the WHO classification, see the nomen, and think 'So, what's the problem?' and ergo anyone who suggests something other than ME = neurological condition; is bonkers and wrong.

    And let's not go into 'neuroimmune' either. That's a whole different (though related) kettle of mackerel (Cornish of course but try telling the fish that!). Anyway, if someone somewhere demonstrates immune abnormalities for 'real', creates an aetiology that holds water (meaning it isn't simply another 'hypothesis' but is accepted by NICE et al.), then ME may not even be the most relevant categorisation within the WHO for 'our disease'; particularly if the only 'biomarker' that is produced relates to the immune system itself. Same applies in my view if the biomarker relates to muscle performance and abnormality, who knows? Of course it is very disappointing that we are seemingly no further forward these days but I am no longer beating myself (or my doctors) up about it.

    The only reason the nomen was ever arrived at is an historic one. There remains I suppose a chance that the name might prove appropriate - but I doubt it.
    Holmsey likes this.
  17. Bob

    Bob

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    I'm sorry you've been through all of that, Holmsey.

    I do totally sympathise with what you've said here.
    I just want us all to understand each other's points of views better.
    I honestly don't think you'd be so angry (if that's the right word) about this issue, if you fully understood why people have different opinions about these issues.
    Please don't stop posting, unless you really want to.
    In my opinion, it's better to discuss issues, even especially if we disagree about certain things.
  18. Lynne B

    Lynne B Senior Member

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    Holmsey, I'm really sorry to hear you've got the dread disease that bad and I wish I could confidently suggest some things to help a little. Like you, I don't want to close off definition avenues when we still have no definitive way of nailing each condition or subcondition. I haven't read all of this thread but I think the strategy for using the term ME is definitely just that—a strategy that will hopefully help our push to have our illness taken seriously. Personally, I prefer the term myalgic encephalopathy to myalgic encephalomyelitis because it allows for the possibility of a hit and run situation, where the guilty party has left the scene but the malady lingers on.

    regards, Lynne B
  19. Bob

    Bob

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    Hi Lynne,

    An added complication is that different people want to use the name 'ME' for different reasons:

    Some people simply want 'CFS' renamed to 'ME'.

    But others are adamantly opposed to this, and want 'ME' separated from 'CFS', using specific diagnostic criteria for 'ME'. This group consider 'ME' to be a discrete disease, defined by specific criteria.

    Other people are somewhere in between, and would be happy to use 'ME' to describe any biomedical illnesses currently defined by CFS. So this scenario would exclude 'chronic fatigue' that could be related to psychiatric illnesses, such as depression or post traumatic shock disorder.

    And of course, as demonstrated on this thread, some people are strongly opposed to any change until we have further evidence, for various reasons.
  20. Esther12

    Esther12 Senior Member

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    I was just listening to a Kurt Cobain interview last night. I think that I want to be an alternative activist, who keeps it real for the true fans. (Another thing from the interview: apparently large amounts of heroin helps with IBS pain.)

    There is something about the imagery of 'conflict' and 'fighting' which is appealing to people who feel quite powerless, especially if they have been treated unjustly; certainly more so than joining hands with Chalder and professing 'we all want the same thing' or some such.

    When so many of the more angry ME groups seem to have been fighting for things which are difficult to reasonably argue for, even from a position of equality, it's hard to say to what extent their problems stem from the aggressive nature of their approach, or the weakness of some of their arguments.

    Even with the most deftly handled campaigning, I'm not really sure what 'realistic' aims we can hope to achieve anyway - other than things like Shepherd's attempts to improve ESA, and other DWP matters. When so many of those with power over how CFS is treated are the problem, it's difficult to see a way forward that doesn't involve some unlikely and unpredictable break from the past (a medical breakthrough, interest from a powerful outside source, success of a somewhat radical campaign). Maybe just trying to improve our own understanding of the issues that surround CFS, and the quality of debate amongst patients, will lead on to more effective and unified campaigning in the future? Probably not.
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