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Cross Party Group on ME

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

  1. PhoenixDown

    PhoenixDown Senior Member

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    Offtopic

    I disagree with the definition, I debate to learn not to "beat" an opponent. A debate is a debate is a debate. I see what you're getting at though. I think the word manipulation or the phrase Intellectual Dishonesty is sufficient, and more frequently understood than the term dialectic.
  2. Jarod

    Jarod Senior Member

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    HI Esther.

    Aah Balony. Doxycycline can put people in remission, that is old news.

    Here's my point. If people enabling this dysfunctional parasitic system really understand what they are supporting, maybe some of them can help stop the maddness from within?

    I think a certain amount of truth/love may acutally help wake some people up, and those people can ultimately help fix the mess. Truth is part of the cure for this disease. :)

    But we can't say we weren't warned years ago.... "The earth is given into the hand of the wicked." Job 9:24

    Jarod.
  3. In Vitro Infidelium

    In Vitro Infidelium Guest

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    That is to claim that ‘the system’ has defined, or at least definable, purpose, rather than it being merely a motiveless emergent phenomenon of the myriad inputs and competing interests of its participants. The ascribing of motivation to the ‘inorganic’ seems to me to be uncomfortably close to vitalism. The alternative is that there must be 'guiding masters of the machine', which I find equally unappealing as a basis for any reasoned apprach to advocacy - great for works of fiction but hopeless in terms of communication with those whose work within 'the system' involves them being largely oblivious to it.

    IVI
  4. In Vitro Infidelium

    In Vitro Infidelium Guest

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    There are only two circumstances where acknowledging an opposition need form part of advocacy:
    1. Where (in terms acceptable to the target audience) the opposition can be shown to be wrong, corrupt and/or inept.
    2. Where acknowledgement is unavoidable.
    In any other case why raise the validity of the other side. Coke doesn’t cite Pepsi as a basis for making the ‘right choice’ of soda, or Nike take on Reebok when presenting the next leap forward in trainer design. Why does M.E/CFS advocacy need to confuse its message by dragging in arguments and players which/who don’t further the interests of M.E/CFS advocacy ?

    I think it is a fundamental error to cast the whole debate in terms of the protagonist. That means they have set the language, they have set the agenda, and in many case they will inevitably be setting the audience. It’s simply the wrong way to go because it can never succeed. Further I think that it is a strategic mistake, not merely tactical, because it ties M.E/CFS advocacy to being oppositional to psychiatry (one can try to ‘sophisticate’ that but the broad brush will always be the defining element) – and it’s a strategic direction that has been lost years ago.

    I’m sure there are those who will argue that the ‘opposition’ can be shown to be wrong, corrupt and/or inept. However the issue comes down, not to whether those advancing the BPS model and consequent justifications for treatment of M.E/CFS are wrong, corrupt and/or inept, but whether any audience that it is advantageous for M.E/CFS advocacy to address, would accept any demonstration of wrongness, corruption and/or ineptness as valid I don’t see any likelihood that an oppositional argument made from an M.E/CFS advocacy perspective that seeks to demonstrate wrongness, corruption and/or ineptness on the part of eminent academics or clinicians as having any chance of success with any audience that can effect beneficial change for M.E/CFS patients. Indeed the only audiences that are likely to be attracted to such a pitch are audiences that would offer less than favourable associations with M.E/CFS advocacy.

    IVI
  5. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Fully unpickiing was unnecessary, it was obvious within 24 hours that the sum benefit being claimed amounted to no more than a few additional metres being walked in the space of a few minutes. That was quite enough to have engaged politicians given the degree of claim and cost of the research. To have any chance of making an effective advocacy response it has to happen within the meda dictated attention span - mabe a week - two at best - two years and its ancient history. One can do as much unpicking as one likes, but it will have little impact upon advocacy because ironically the greater the elapse of time, the lessening of the amount of detail that an audience will regard as important. The only exception is an authority led exposure of a 'burried past', and as much as Osler's Webb is referred to on the forums, I don't see that as having had a sustained audience outside the patient market, and that story at least involved misappropriation of Federal money.

    IVI
    Holmsey likes this.
  6. alex3619

    alex3619 Senior Member

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    [my bolding]

    Hi IVI, I think this is a mischaracterization of the issues. The players are unlikely to publicly accept criticism, agreed. They are however aware of criticism. Without such criticism it would be taken than we, and the public, are fully in agreement with their plans. Any chance of their agenda not advancing would be gone aside from a serendipitous discovery that completely changes the prevailing scientific viewpoint in the UK. The Rituximab trials, which may be funded from late November (we are waiting on word on that) could do it ... but thats years away. Winning the debate requires a serious success from the biomedical model camp. That is not the point to the advocacy. Again, your argument is a zero sum argument, and inappropriate. This is a holding action, a brake on their advance so they do less harm in the long run.

    As far as systems not having goals, again thats a mischaracterization. A system is an inanimate thing, it just is, but the players in that system have goals, and stated goals, which can be interpreted. The avowed goal is to manage the patients, and I think (at least currently) that most of the players believe this. By manage, its implied that this means successully treat patients within a psychosocial framework (the biological is largely ignored). However the outcome is contrary to the claimed goal. In other words, yes, the system is not performing in the way claimed by the players. This is a mismatch between claimed goals and actual outcomes, which was my point.

    This argument can be extended to all of BPS. There is a mismatch between the claim to a bio-psycho-social approach, and the actual bio-psycho-social methods and focus.

    I agree they have set the language an agenda, for at least much of the UK and some of Europe. Thats not universal. Its also not the point. In terms of pursuasive rhetoric, this means we have to shift the focus, alter the language. I am fully aware of that. In terms of science, its irrelevant, and in fact I hope to show it potentially plays to our advantage, something I am working on. So your arguments on these lines merely show the need for better analysis ... they do not argue against the need to oppose the misuse of the BPS model.

    Bye, Alex
    PhoenixDown likes this.
  7. Bob

    Bob

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    There's a number of problems with what you've said here, IVI.

    1. You seem very good at criticising patient advocacy efforts, without actually knowing what goes on, in terms of advocacy. So your criticisms have no factual basis.

    2. Patient advocates did make fairly immediate responses to the PACE Trial. Both scientific responses, and political responses.

    3. The full implications of the 6MWDT results were not immediately obvious for a number of reasons (e.g. The relationship and differences between the 6MWDT and the primary outcome results were not immediately obvious; The distances achieved by the 6MWDT needed to be put into context to make sense of them. i.e. the median distance that normal people walk, & percentiles for the normal population etc., were useful information to get hold of; Was the improvement seen in the GET group a clinically useful outcome?; and would the average improvement make much difference to individual patients' lives in practice?) Even if the answers look obvious to us, knowing what we know about the nature of ME, the information still needs to be presented in a factual, referenced, evidence-based format.

    4. You say that only a few additional metres were added in the space of a few minutes (35m for GET), but to any one unknowledgeable about the 6MWDT, this could suggest a theoretical additional 350 metres per hour. Anyone not familiar with the 6MWDT, any of the science, or ME, might think that an extra third of a kilometre an hour might be quite significant. (Note that an extra 35m in the 6MWDT does not equate to an extra 350m per hour, for either ME patients or healthy people.) So your simplistic criticism doesn't stack up. It's actually not quite so simple to demonstrate that the 35m improvement was meaningless, even if it looks like it at first glance. Would it translate to 350m in an hour? If not, then why not? And how much difference would it make to an individual patient's average day? In the event, the improvement was not a 'clinically useful' improvement, as per the PACE Trial's criteria, and the final walking speeds indicate severe disability, and are comparable to the speeds for other severely debilitating diseases. We're still short of some 6MWDT normative data though, such as the percentiles for the whole adult population. (Can you provide them?)

    5. The claims of the PACE Trial authors needed to be rebutted. If they claimed that 30% 'got back to normal' or 'recovered', then those claims needed to be understood before the 6MWDT could be used as conclusive evidence.

    6. Apart from anything else, you are expecting patients to have prior knowledge to expertly decipher and understand the implications of all the published & unpublished data. If even the Lancet can't do it, and the medical profession can't do it, and journalists can't do it, then you are asking too much.

    7. You say you know exactly what should have been highlighted about the PACE Trial, and the best way that it should have been presented. And you appear to be saying that it was straightforward to achieve an effective challenge to the paper. So then why didn't you do it?

    Your approach to this doesn't seem at all constructive.
    Purple and Valentijn like this.
  8. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I’m just going to respond to this one part of your post, I acknowledge the other points you’ve made and some I’ve sort of answered in reply to other posters.

    If we look at the way this thread has developed, it’s ultimate direction has been ‘we need to keep doing what we’re doing, just more so’ – is that really taking the stark issues of the Scottish situation and transforming them into a point of departure ? I don’t think so.
    You make an assumption about who I consider my target audience in this context. To the extent that I even think about an audience when I write here, I recognise that 90% of people who also write on M.E/CFS focussed forums will disagree with 90% of what I write, therefore at best I can only connect with a small minority. I’ve had enough responses over the last couple of years, mostly via private contact, that say – “that was interesting, glad someone’s prepared to write it”, so I suppose I have a sort of notional audience that I’m writing for – but I’m not here as a practicing advocate. If I was actually acting as an advocate, I would not use a pseudonym, I would specify precisely what my representative status was, what the source of my legitimacy and qualification was and who exactly I was answerable to. These are all crucial requirements for effective advocacy – as it is I’m just some pseudonymous bloke writing as an individual (although there are mythmakers who consider my writings so powerful that I must be a psycho/pharma instant rebuttalist placeperson) on an internet forum where what I write has close to zero impact.

    Where advocacy is concerned, there are simply audiences who are important and audiences that are not. Somehow I don’t think that the Science Media Centre is overly concerned with some dead philosopher’s distaste for pragmatism or Pragmatism – they do what works. If M.E/CFS affected people want to operate in a world of sophisticated and developed advocacy, then learning from the professionals is a good place to start. But actually I think the abiding arguments that have been made through this thread, are that effective advocacy is not to be the ambition but rather it is the enactment of advocacy in a Second Life type simulation where the consequences of actual engagement can be avoided in preference for confirmation present certainties.

    IVI
    Holmsey likes this.
  9. natasa778

    natasa778 Senior Member

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    This thread is going in circles and its main outcome now seems to be the sucking away of people's (limited) energy and valuable time (time that should be spent doing actual advocacy work ;) )
    currer, alex3619, Bob and 1 other person like this.
  10. Esther12

    Esther12 Senior Member

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    I think that it would be really helpful if, instead of just arguing against imagined opponents, you quoted what people had actually written, and then responded to that. It does seem as if you keep criticising some position which you view as the consensus amongst patients, or posters here, but that I just don't recognise, or see as only a minority position.

    I would say that the consensus here is almost always 'we need to fundamentally change the approach taken to CFS advocacy, and start doing more of 'this' instead', with everyone having different views as to what 'this' is. You seem to share this view, although I still do not have a clear idea as to what your 'this' is, other than just being more effective somehow. Also, from this thread it seems that people are quite unconcerned about maintaining present certainties, and are happy to explore the uncertainties which surround CFS, and the ways in which advocacy could be more effective.

    I don't know what the 'best' approach to CFS advocacy would be. Indeed, I think that a lot of people and patients have quite different aims, as well as disagreements over tactics. We seem to be in a really difficult position,and it's hard to know how to progress. I don't think that you've so far shown your understanding of these problems, or how we can be more effective, to be so much better that it justifies your somewhat haughty tone. Personally, one of the things I have a real problem with, is when people lump together CFS patients, and then make claims about them as a group which don't seem supported by good quality evidence - some of your claims about people in this thread seem to do this.
    Valentijn and Bob like this.
  11. Esther12

    Esther12 Senior Member

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    I think you're right to say that debate can involve an honest pursuit of truth by both parties too, but I kind of get what wikipedia means too. I also think that a lot of people with an interest in rhetoric do not see themselves as being intellectually dishonest when they try to sway people to their cause. There can be quite subtle differences in how people engage in discussions, and I expect that all of us are instinctively aware of how different phrasings or perspectives on an argument will affect how people respond to them.
  12. Esther12

    Esther12 Senior Member

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    One more thing, which is really just more of the same...

    If what you write is well supported by the evidence, and you take the time to explain yourself and respond to people's criticisms and concerns, then I do not think this is true. What reasonable claims are you making which you really think that people here would be so unable to accept?

    I've certainly put forward views and arguments which were not initially popular here. Over the course of discussing them with others I have changed some people's minds, and also I have come to change my mind, and realised that I was mistaken.

    There is a lot of nonsense around CFS, and inevitably this will serve to confuse and mislead some patients. But when people are engaged with as equals, I've found that those on CFS forums are just as willing to look at the evidence and try to work out what is true as people elsewhere (probably a 60-40 split).
  13. alex3619

    alex3619 Senior Member

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    Hi IVI, the implication of your statement is at conflict with your stated position that you have made plain over time. Your argument, and feel free to disagree with my summation, is that we are not a united community with a unified goal using adequately developed plans for advocacy. Yet here you are complaining that we are debating advocacy, creating a basis for consensus, and learning about options. You can't have it both ways.

    This forum, and by that I mean PR, is a platform for learning about advocacy and the issues. Its not the advocacy itself. You have no idea what goes on behind the scenes. Are you aware that advocates who act in the real world, and who also post on PR, spend a lot of time planning and doing that is never seen on PR?

    We need to discuss advocacy. Discussion is not enough, in that I agree with you. However we can't have anything like consensus, focus, goals, without such discussion. Its mandatory.

    "learning from the professionals" ... which professionals do you have in mind? How many of them have experience in advocating for something like ME, given that there isn't anything like ME? Our circumstances differ from any other advocacy situation. We are not the MS community, nor the HIV community.

    Are you aware that many of our advocates have sent hundreds to thousands of emails, letters and so on? Some are targeting professional bodies like medical associations. Others are involved in coordinating with government. Alliances are now forming between ME and CFS associations. We are lobbying government via such an alliance, at least in the USA. At least five of us I am aware of are writing a book on these issues or have done so. Others write articles and publish papers. Some make videos. Others organize and run large advocacy organizations. Many sign up to be medical research subjects (I have several times).

    Standard approaches to advocacy used in other disorders and vaguely similar issues will fail, in my opinion, because the differences in circumstances with ME and CFS are just too large. We need our own path, whatever that may turn out to be. We have to figure that out. How can we do that without discussion?

    Its bioscience that will get us a cure. Advocacy can support that, can support patients, can teach and educate, can oppose negative influences, and can assist with the rolling out of solutions when a cure or effective treatment is known. Advocates are only part of the solution.

    As to identity, I chose long ago to be public. Many know my real name, its appeared in numerous threads here and elsewhere, I sign my real name to newspaper comments too, just as I will to this post. I made the choice of that risk some years ago: to effectively advocate you can't hide behind pseudonyms, however that doesn't mean you can't use pseudonyms in order to engage in debate on patient forums. My educational background is also public and includes a B.Sc. and a B.Inf.

    So why do I use alex3619? To those who know more about me than I am willing to discuss here it is obvious. Its a technical reason.

    To be clear, I do understand why many want to use pseudonyms. There are good reasons given how many ME and CFS patients have been treated.

    As an aside, Amazon has finally decided to send a copy of Angela Kennedy's new book, or at least says its now pending. I will review it on PR.

    Alex Young
    aka alex3619
    Roy S, Valentijn and Bob like this.
  14. Firestormm

    Firestormm Senior Member

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    You guys could have split this thread like aeons ago - not sure it bears much resemblance now to the opening post :confused:
  15. Esther12

    Esther12 Senior Member

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    Hi Jarod. I'm not entirely sure that I'm following you, but I think that I disagree with you (certainly any implication that I was talking baloney!).

    I definitely think that honestly pursuing the truth is an important part of life though.

    Any suggestions for a new title that would encapsulate all of this stuff? Anyway, we've got to amuse ourselves somehow, as we don't all have fun secret minutes of the Cross Party Group on ME meeting to amuse ourselves with!
    Firestormm likes this.
  16. ukxmrv

    ukxmrv Senior Member

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    Here's a previous MEA post on the XPG group

    (quote)

    Following the Scottish General Election last month which thrust the Scottish National Party into power, MSPs agreed yesterday on the reformation of Cross Party Group on ME – with newly elected Labour member Mary Fee (West Scotland) as convenor for the life of this parliament and Jim Eadie (SNP, Edinburgh South) taking on the role of vice-convenor.

    Mary Fee proposed that the committee meet early in September after the summer recess with full group meeting to follow soon after.

    It was hoped that Siobhan McMahon (Lab, Central Scotland) would agree to be a vice-convenor. Action for ME staff member Susan Webster was confirmed as group secretary. Other MSPs who attended or sent representatives included Marco Biagi (SNP, Edinburgh Central) and Elaine Murray (Labour, Dumfries). It is hoped that a Liberal Democrat member can also be recruited to ensure that the CPG is fully representative.


    http://www.meassociation.org.uk/?p=6630

    (quote ends)

    Mary Fee was a new MP and a member of the Labour party (which is not in power in Scotland). Interesting that the Group Secretary is described as a AFME membber.

    So something brought a new person and a new MP into the XPG for the first time and also a willingness to act as the convenor.

    It sounds like the english APPG in that the group reconvenes after every election. Before the election the group draws to a close.

    I understand that the previous XPG put together a legacy document at the end of their group and that in this document the XPG is said to be on "ME as classified by the WHO". I'm not able to find this document on line to confirm. There should also be legacy documents from previous XPg's and I'm told that one other has the same wording.

    When Mary Fee and the new MP's joined the XPG she would I hope have read this document I hope.

    What could possibly have happened is that someone or some group has tried to change this remit. The loss of Mary Fee (and the question put to a vote) may represent the failure to do so.

    I see on this MEA report that Mary Fee quotes Action for ME

    (quote)
    Ms Fee said: “Unfortunately, there are still plenty of misconceptions surrounding ME in Britain today and we are hopeful that this event, and the awareness week in general, will help to counter these.

    “Those who suffer from ME aren’t getting the support and care they need and are under constant threat of losing their benefits due to ignorance surrounding the illness.

    “Action for ME believes that more than half of those who suffer from the condition will end up losing their jobs due to the illness.”
    (end)
  17. Firestormm

    Firestormm Senior Member

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    barbc56 likes this.
  18. Bob

    Bob

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    The original remit for the CPG on ME, was to focus on 'ME' (ICD10 G93.3). All the CPG literature indicates a focus on 'ME' only. But it seems that the convener wanted to completely change the remit of the group, away from ME ICD10 G93.3, and also away from ME/CFS/PVFS ICD10 G93.3. Those who voted for 'ME' ICD10 G93.3 voted to keep the remit exactly the same as it was originally.

    So it seems to me that the convener agreed to join the group, then attempted to change the remit, and then made a good attempt to close the group down when she didn't get her way.
    So why did she join the group in the first place, only to then destroy it because she didn't like its remit?
    Obviously, I've still only got partial information, so my interpretation might be way out.

    Firestormm, your quote confirms that the majority voted to follow the Scottish NHS Good Practice Statement, which relates to ICD10 G93.3, whilst the convener was trying to move it away from the ICD10 G93.3 categorisation, and to include all fatiguing illnesses.
    The Scottish NHS Good Practice Statement does not seem to have much relevance to the name issue, because the Statement includes both names 'ME' and 'CFS'. Voters at the CPG on ME chose to focus on one of those terms, so the Scottish NHS Good Practice Statement includes what the CPG on ME were voting for (ME).
    The group is entitled to focus on 'ME' if it wishes to, especially as the Scottish NHS Good Practice Statement asserts that CFS/ME might be a spectrum of illnesses.

    Whether you agree with the outcome of the vote, or not, is a different matter.

    In any case, like I've said before, I don't believe that there was any attempt at division or exclusion.
    But I acknowledge that I could be wrong.
    Valentijn likes this.
  19. Bob

    Bob

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    From the MEA website:

    24th Oct
    CPG NOW “NO LONGER EXISTS”
    http://www.meassociation.org.uk/?p=13250#comment-2828

    This email exchange has been circulated to CPG members today (24 October 2012):

    ---

    Dear Member,

    Further to my email of this morning – forwarding Jim Eadie’s resignation from the CPG on ME – I am now forwarding Sam Currie’s response to my question about how best to proceed (see below.)

    I have just now spoken to Sam and have come to the decision that since it is not within my capacity to get another MSP to join the group I regretfully have to inform you that the group no longer exists.

    This would, I imagine, not preclude members approaching MSPs to discuss this matter further.

    Best regards, Carol

    Carol Flack
    Secretary
    Cross Party Group on M.E.
    Scottish Parliament

    ---

    Dear Carol

    Many thanks for your email.

    The process now would be for you to try and procure one more MSP to become a member of the CPG and hold elections for office bearers. Your remaining MSP members, Marco Biagi MSP, Neil Bibby MSP, Alex Fergusson MSP and John Lamont MSP, retain the required party balance so you do not need to procure a member from a specific party.

    If you feel that it is unlikely that you will be able to get another MSP member to join the Group then you should contact the existing MSP and Non-MSP members of the Group and the Standards, Procedures and Public Appointments Committee to say that the Group no longer exists.

    Should you require any further information please don’t hesitate to contact me.

    Best regards
    Sam

    Sam Currie
    Support Manager
    Standards, Procedures and Public Appointments Committee

    ---
  20. Bob

    Bob

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    So there is the possibility of getting one more MSP to join the CPG, in which case it can start up again.

    Four MSP's did not step down, and remained on the CPG:
    Marco Biagi MSP, Neil Bibby MSP, Alex Fergusson MSP and John Lamont MSP

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