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Cross Party Group on ME

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

  1. Holmsey

    Holmsey Senior Member

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    Watch my posts carefully, I guarantee I'll never do that, the reason I can say that with confidence is that I believe I have ME, I also believe I have ME/CFS, CFS and PVS. I believe I have all of these illnesses because I believe that those clinicians which give out these diagnoses are recognizing the exact same illness. I even believe that some people given a diagnosis of unexplained fatigue will prove to have that same illness while some given the diagnoses of ME or CFS will prove to have been misdiagnosed and have an alternative recognized and treatable illness.
    I don't dispute that there are subgroups who will ultimately need different treatment protocols, but I do believe that there is a linking causation.

    How good would it be to have centers of excellence able to separate the two.
  2. Bob

    Bob

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    Yes, CCC is quite recent. It was created just a few years ago.
    I think the 'Ramsay' definition was used a lot in the UK before 'CFS'.

    Yes, I tend to agree with you there, myself.
    My experience talking with other patients is that most of us suffer from remarkably similar symptoms.
    And the historic diagnostic criteria for 'ME' were not static, so there was never a single description of 'ME' anyway.

    My problem with the vote is that they muddled up the name change with the WHO ICD categorisation.
    They should have had a vote for WHO ICD10 G93.3 'ME/CFS'.
    And then had a separate vote for 'ME' or 'CFS/ME'.
    Why vote for both at the same time?
    The vote itself seems to have been set up to fail.

    I'm very sympathetic to what you've said here, but I question whether it's worth supporting the status quo?
    It's got us nowhere for thirty years.
    Mary Fee wanted the remit to include psychological fatigue, and I imagine that this must have been a factor in deciding the vote, as there are very strong feelings about it.
  3. Holmsey

    Holmsey Senior Member

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    Hi Mark, it's always going to be a difficult one, my GP's practice is ran of its feet, to see my own GP I now have to take appointments into the third week beyond my phone call, I used to have very unrealistic expectations of my GP's but now I realise that my illness was driving that expectation.
    We're dealing with human beings, now for me it comes down to whether I believe they're trying to help or dismissing me. I'd be P.O'd if I was being dismissed and I guess I'm lucky I'm not.
    That said, as I indicated in my earlier mail I simply chose to ignore what my GP's beliefs regarding my illness were, turns out his are like mine, that this is a physical illness, but that's just luck.
    There is a stereotypical view of GP's being arrogant, considering themselves infallible, I guess that has to have some foundation and so it's to be expected that there are dismissive doctors out there.
    I guess we're never going to know beyond opinions expressed within these forums and I'm certainly not suggesting that because I've had relatively good support that everyone else must have the same, clearly that's never going to be true.
    The real problem though IMO is the general understanding around the illness, if it's proved next year say that this illness is an auto immune disease and that becomes the official line then all of those bad doctors will be good doctors. In the end we can criticize them for not being free thinkers, for not keeping up with all the studies, in short for being lazy, but in that respect are they really so different to any other occupation?

    Wish things were better, best regards, Zee.
  4. Bob

    Bob

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    Well, I don't know what we've been arguing about then, because we have exactly the same opinions!!! :eek:

    (You see... I said it's always a matter of misunderstanding and miscommunication!)
  5. Bob

    Bob

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    I think we might get particularly bad treatment down in the South East.
    The psychiatrists seem to have quite a lot of influence here.
    I know that they definitely oversee my local specialist clinic.
    And maybe the training for doctors is given quite locally, so maybe our local doctors all get the same training re 'CFS'.
    So you might have a very different experience.

    I agree that things will swiftly change once a treatment is found.

    But, I'm happy with my current doctor. She says she can't help the ME, and I appreciate the honesty, because she's friendly and thoughtful. But I think she still believes it's a psychological thing. (I don't dare ask her.)
  6. Holmsey

    Holmsey Senior Member

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    I used to fight, competition, street, pub, I didn't care, as long as I was fighting I was happy. The Marines say 'there's always one more thing you can do', the Hagakuru that you should set your mind on your goal ignoring even death. It's not how many times we're knocked down that defines us, it's how many times we get up, that this has gone on for so long is crap but there's a momentum that wasn't there five years ago, a feeling of a dam about to break and the cynical side of me says that's why MP's are prepared to get on board, they sense the big win.

    It's a crap way to look at life I know, and I've a nice side which sees a very different aspect of human nature, but the me which has to wade through this mire knows that we're all selfish, we're all looking at what's in it for me, and the fact there are MSP's giving us time tells me something significant is near.

    Keep the faith, I've got your back if you've got mine.

    I'm done in, but for me it's good to think we're finishing the day on the same side.
    Bob likes this.
  7. Firestormm

    Firestormm Guest

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    Thanks Ski. I appreciate that. There were draft minutes circulated amongst members for the meeting that took place on 19 September although it seems doubtful now perhaps that these will be signed off or made available publicly.

    Fortunately, I know a couple of members and will see what I can find though I doubt if it would be fair to post them in draft form or at all without permission. It may be that these minutes reveal more, or not, than has been conveyed to me, and on this thread, and on the ME Association's Facebook page, and now, elsewhere as well.

    I find it very strange that nobody has clearly stated what the events were that led to this vote being taken, or what it was really all about. I am hearing now that there was a proposal for an 'ME Centre of Excellence' and the debate was over who should and shouldn't be permitted to attend.

    Thanks again.
  8. In Vitro Infidelium

    In Vitro Infidelium Guest

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    What I wrote was: At some point, if the needs of a particular patient group are being consistently presented as being uniquely neglected while others are being delivered effective care.
    Of course something the size of the NHS will contain numerous inequalities in which entire patient groups are handled well below the mean of delivered care. The question is not whether one should meekly accept such inequalities but how to address those inequalities. To present M.E/CFS patients as uniquely suffering is not only inaccurate, it is presentationally insupportable, because no one outside these narrow forums will take it seriously.

    Well yes, that’s the whole disadvantage of having an illness that is readily ‘psychologised’ – in which case it would be smart to not engage on territory that allows confirmation of that prejudice. We are not, and never will be a group that attracts ready public or political sympathy – advocacy that is seen to be mere wailing about how our lives are so awful and how the health service is unfair to us only serves to confirm the bias that we are the ‘undeserving ill’. Without demonstrably high mortality rates, fear inducing surgical and radiographic interventions or very poorly babies – we can never garner a sympathy vote – we therefore need alternative strategies.

    Anti pragmatism is fine for a philosophical or religious position, even politically the ‘¡No pasarán!' ideal can seem very appealing – but there are huge costs to such a position – it’s essentially ‘all or nothing’, with nothing being the most likely outcome. I agree that ‘bending one’s arguments’ is unsound because that demonstrates insincerity but structuring arguments in terms that the other party can understand and accept is a pretty basic requirement if one wants to attain some agreement. And negotiation requires a preparedness to make concessions. Advocating for M.E/CFS a though it were some philosophical truth is not going to achieve anything in the realm of politics, health care or research – these are all arenas of pragmatism and can only be effectively engaged with on a pragmatic basis.

    IVI
  9. currer

    currer Senior Member

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    Hi. I have read through this thread quickly, and the fact that stood out for me was -

    this objection to neurological ME we were told was because government would only accept ME-CFS

    Why will the Department of Health only accept ME/CFS ? - when this definition means that no adequate research can be carried out on our illness?

    They appoint the psychiatrists to the Medical Research Council who vote down all research proposals that apply to the ME element of ME/CFS. These psychiatrists will only allow research on CFS.

    Why is the DOH unconcerned that the ME element cannot be researched under the current arrangements?
    Why is the DOH unconcerned that research had been blocked in this way for thirty years?
  10. currer

    currer Senior Member

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    The DOH clearly has a vested interest in perpetuating the current unsatisfactory situation.

    Yet this is clearly against the wishes of the majority of patient organisations. (Apart from AfME, of course)

    If the DOH is intransigent, the situation can never improve. Because any future research can always be scuppered on the basis that it does not fulfill the CFS element of this definition.

    I think the DOH is afraid of what unbiased research into ME could reveal and has no intention of allowing the causes of this illness to be investigated.

    We should not fall into the trap of believing the narrative that it is unruly patient organisations that are the problem.
    Is is reasonable to want neurological ME to be sub-defined and investigated.
    The unreasonableness is coming from the DOH.
    alex3619 and Jarod like this.
  11. In Vitro Infidelium

    In Vitro Infidelium Guest

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    But I can't 'spare' the "life isn't fair" lecture, because it goes to the heart of how all health advocacy gets to be judged. There are certain groups - children, the frail elderly etc, where public and political concern is motivated to take definitive steps to void unfairness resulting from illness, but as a patient group M.E/CFS sufferers don't make that cut, therefore we have to structure any engagement with politicians or other public representation in terms that recognises "life isn't fair". To not not do so invites rejection of any advocacy that is advanced in the name of M.E/CFS.

    I don't think that the WHO is in some way culpable, M.E has never been a key WHO concern, and is unlikely ever to be so - AIDS, cancer and malnutrition will rmain its major interests. That M.E got a particular international classification is just a matter of history, the WHO happened to include the illness in the classification process at a particular time and what is there now is what was agreed then. But the classification never had diagnostic power and the WHO is under no obligation to defend a classification - its just an agreed means of recording incidence and prevalence of disease on a common international basis. Ironically using the WHO classification as a backstop in M.E/CFS advocacy has raised the stakes in reclassification and expanded the psychiatric versus somatic argument to the wider context of ICD 11 - see the most excellent http://dxrevisionwatch.com/ There is no option of course not to pursue that argument, but defending the current position may be neither possible nor, even if successful, might it have the benefits most people believe. I'm not keen on characterising the position in terms of conflict, but if we were to be a 'war situation' then its probably ill advised to set up a fixed position that has a very strong likelihood of being overrun.

    IVI
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I. The contention is that the Government of the Scottish Parliament, would not accept the CPG becoming involved a discriminatory process. Whether that was actually being proposed is unclear but it iswhat the MSPs were very rightly concerned about. Theissue would come down to the rules of the Scottish Parliament and specificaly the governance of CPGs.
    2. This has nothing to do with the UK DoH, other than very tangentially.
    3. Appointments to the MRC govering Council are indeed made by the relevant Minister. The Council does not take grant decisions, which are considered in great detail by multi-disciplinary boards: http://www.mrc.ac.uk/About/Structure/Advisorybodies/index.htm#P13_427 . Membership is achieved via open application and does not involve the Government in any way http://www.mrc.ac.uk/Ourresearch/Boardpanelsgroups/Vacancies/index.htm
    4. This thread has nothing to do with research, other than the potential for some funding via the Scottish Parliament of NHS Scotland service delivery.
    5. What research has been blocked ?

    IVI
  13. In Vitro Infidelium

    In Vitro Infidelium Guest

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    You are asking for Parliament to be 'different'. That may be a reasonable thing to want - but it is not going to happen in the context of a single APPG, arguing about whether attendees did or did not behave 'badly' misses the point - they behaved in ways the MPs found inappropriate, and therefore the MPs stopped listening, they picked up their ball and left. One can complain about the unfairness, but so what. The point is to have influence, to do that you need an audience, and if the audience is difficult, arrogant, pernickety - that's tough because they are the people you have to deal with.In the case of Westminster, those APPG members have a a near infinite number of causes and demands that they can legitimately give their attention to, M.E/CFS need never be of the slightest concern to any of them - to not recognise that is to fail to grasp the basic principles of advocacy.

    IVI
    Holmsey likes this.
  14. Esther12

    Esther12 Senior Member

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    It was the 'uniquely neglected' part which made me think it was a rather unfair strawman. CFS patients and organisations are not consistently arguing that CFS patients are uniquely neglected! There are unusual challenges to CFS which pose fairly unique challenges, but there are other conditions with similar problems, and even conditions which are generally treated well still face many similar problems to that faced by CFS patients. I
    I think it's a more mixed picture, and that lots of people are sympathetic to the uncertainty which surrounds CFS, and the willingness of some doctors and researchers to mislead and manipulate patients. As you've noted, the problems faced by CFS patients are not unique, lots of people have suffered from false reassurances from their doctors, recognise the innate uncertainty which still surrounds our understanding of many medical problems, and see how suffering from a poorly understood medical problem could lead to sustained manipulation and 'management'. I'm certainly not claiming that CFS patients are a popular group, but I think a lot of that is due to the name, the way in which the condition has been psychologised, and it has been claimed that there are effective treatments which patients reject because they refuse to accept the stigma of mental health problems (all these things coming from a small group of researchers with an interest in the importance of media presentations of illness). We actually have good arguments and compelling evidence to counter many of these claims - we just struggle to do so. I think that people with CFS are deserving of sympathy, and that if we are able to explain ourselves thatt he general public would agree.

    I don't think that my approach is 'all of nothing' - there are all manner of compromises that I would recognise as being preferable to the current situation. But I do think that anything I see as being important progress would be seen as a step in the wrong direction by people like Chalder. I do not think that I could present my views on these matter in a way which would appeal to her, because we're starting from such fundamentally opposed moral positions. When so many of the assumptions about CFS being made by those with power and authority are so flawed and have led to such problems, I do think that we need to challenge those assumptions, rather than try to work within them. I also think that it's the pragmatic approach taken to CFS which has served to cause so many problems - when we do not have a clear understanding of the problem we a re trying to solve, or how to measure our successes, pragmatism becomes virtually useless, and can be used as an excuse for doing whatever it is one wants to do.

    We do not know what approach to CFS advocacy will lead to the best results. I think that we can all agree that we should all try to be as intelligent and well informed as is possible (and this is a difficult and complicated topic to be well informed about), but beyond that, I do not think we can say whether cautious sucking up to quacks with authority, or militant raging against the oppression of the NHS, or anything in-between, would lead to a preferable outcome. Often when people have been badly treated and have a legitimate grievance, a degree of militancy is helpful - but the weakness (physical and political) of CFS patients does mean that this approach is less likely to be helpful for us.

    I think that 'we' (all patients and groups) should be pushing for an official acknowledgement of the problems caused by those exaggerating the efficacy of cognitive and behavioural treatments for CFS, and for a commitment to preventing such problems occurring in the future. I think that this is an easily defensible position, given the evidence we have available to us, but politically, it is an extreme position, and one which would turn many of those with power and authority against us. I've got no idea if my position is politically feasible... but I'm not sure that anyone else does either. If it is not, and we need to go on accepting that those with power over us should be allowed to mislead us, then I do not see what meangingful advances we can achieve other than trying to get a bit more funding for research and crossing our figures for a medical breakthrough.
    Bob likes this.
  15. Firestormm

    Firestormm Guest

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    Just to say that I am withdrawing from this conversation now. I do have the minutes and it would be unfair to continue contributing until such time as you all (assuming you haven't read them yourselves) have also partaken of them.

    Feels rather awkward being in such a position actually, still it looks like y'all have moved on from the topic at hand anyway.

    Perhaps we can return to it when all in is the public domain (assuming of course they ever are published).

    Fire :)
  16. Jarod

    Jarod Senior Member

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    Esther,

    You said:
    Allow me to inject the extreme reality here.

    1) Those with power and authority are already against the patients.

    2) People with CFS, and many other diseases are being systematically slaughtered in slow motion.

    When a person doesn't look sick, can't provide for himself, and can't prove he/she is sick. It's insanity to stake out a position arguing about the efficacy of CBT.

    People are trying to figure out how to keep a roof over their head or get food.

    The debate should always be about diagnostics and bio-medical treatments whenever possible, however I know some of these Babylonian inspired psychobabble studies need responding to.

    Everybody should immediately change the subject when CBT, or "internet surveys for forum use" comes up. That is bullshit to let them control the debate like that when people are dying

    The psychiatrists know what they are doing it's a good idea to remind them constantly. We need to help the rest snap out of their(media assisted) brainwashed state of denial. :thumbsup:
    currer likes this.
  17. Esther12

    Esther12 Senior Member

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    We're not being slaughtered... we're being 'managed'.

    We don't have good treatments or diagnostics, so there's not much to debate here. Maybe we will do at some point in the future, but until then it would be nice if we were still treated fairly and honestly.
  18. Jarod

    Jarod Senior Member

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    My point exactly.

    And yes we are being slaughtered. When you prevent treatments and diagonostics for decades and put the psychiatrists in charge, your actions have spoken louder than words.
    currer likes this.
  19. ukxmrv

    ukxmrv Senior Member

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    The problem with discussing the draft minutes is that we don't know how partisan they are to the different sides.

    It may be like reading the original MEA account (which they had to take down).

    In the end it will depend on believing the accounts of the different people there or none if it looks that way.
  20. Firestormm

    Firestormm Guest

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