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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Cross Party Group on ME

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

  1. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Commisserations ! I can only encourage you to keep at it, so long as it doesn't make your own life intolerable. In my experience the majority of people that go into politics do actually care, and most recognise that the 'public' are falable and need polticians to give them some slack when actually engaging with the political process.
    IVI
     
  2. Bob

    Bob

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    There's lots of condemnatory comments and speculation in this thread, but no one seems to know what the actual situation was that led to the vote.

    Also, on one hand, people are saying that Scottish MP's can only be expected to follow 'expert' advise, and not to stick their necks on the line, and then they are berating patients for pushing for political change in any way other than carefully measured reasonable arguments.

    I think there's space for both carefully measured reasonable arguments, and also a bit of friction in politics. Sometimes making a political 'statement', or making a point, can make change where measured argument fails.


    You are acknowledging that there has been a positive input from patients here, which has led the CPG on ME to acknowledge that there might be a spectrum of fatiguing illnesses.

    This acknowledgement, by the CPG on ME, is helpful, in my opinion, and as you acknowledge, it has probably come about because of patient input and pressure.

    Politics is a continuous process, and it is up to those involved to continue to push for further advances.

    The rate and degree that this is done is a matter for personal judgement. Sometimes carefully measured reason gets us nowhere, and a slightly more aggressive push for change is sometimes needed.

    I can't comment on this particular situation because I don't have any insight into the proceedings. But it seems that no one on this thread has any insight into what's gone on either.


    If the vote went through, then it seems that it is the 'majority' opinion, and not a 'minority' opinion.

    Like I said earlier, I think it is difficult for us to judge the situation without a fuller understanding of what went on.
     
  3. Bob

    Bob

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    I personally agree that all patients with all types of fatiguing illnesses need to be looked after, medically and socially.
    But I believe that it is vital that we move towards acknowledging that there may be subsets involved in CFS/ME.
    And for me, it is vital that future research investigates sub-sets, using more selective criteria, whatever they may be.
    The ICC is one such potentially selective criteria.
    The CCC is now starting to be used for research in the USA. This is a positive development, in my opinion.

    There is the issue of post-exertional malaise, which is often considered to be a cardinal symptom of ME.
    In my opinion, patients with this specific biomarker need to be investigated as an exclusive and distinct group.
    I think that they also need to have therapies and treatment specifically tailored for them.
    And patients with other fatiguing illnesses need to have research, therapies and treatments tailored for them.

    And then there is the issue mis-diagnoses which needs to have more focus and resources placed on it.

    In my opinion, it is essential to investigate sub-groups in research.
    Maybe if patient charities, politicians, the medical profession and researchers start acknowledging the differences, and catering for the different sub-sets of patients, then we might start to make progress in understanding the nature of the various sub-sets.


    It's not surprising that many ME patients in the UK want to be separated from any suggestion that they suffer from either a psychological illness, or a 'fatiguing' illness without other symptoms. It seems to me that the vote at the CPG on ME was probably an attempt to do just that. It seems quite reasonable to me. Asking for 'ME' to be recognised as a discrete biomedical illness is part of the same process of having ME properly recognised as a biomedical illness.

    It seems to me that there might be more evidence to suggest that patients with post-exertional malaise might have a distinct illness, than there is to suggest that all fatiguing illnesses are identical. So, if we are following the evidence, then those who call for 'ME' (if it is defined by 'post-exertional malaise') to be considered separately from other fatiguing illnesses might have the balance of the evidence on their side. It seems like a reasonable position to me, depending on the fine details.

    It's not the patients who got us into the current mess. It was the establishment. And it is the establishment who continues to propagate the mess. I don't blame any patients for wanting a better situation, or for pushing for a better situation.

    Maybe the CPG on ME aren't aware of the strength of feeling about the issue, and why it is such an important issue for many patients. Maybe their awareness will increase now that the majority have voted for the motion.
     
    currer likes this.
  4. Bob

    Bob

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    Pertinent to this discussion is a 2009 article, by Ellen Goudsmit, co-authored by Charles Shepherd of the ME Association.
    The article has a new footnote, added in October 2012, with a short discussion about a study by Leonard Jason in which Jason compares various diagnostic criteria.

    (The article was recently highlighted in a tweet by Tom Kindlon, and a retweet by the ME Association.)


    ME: Chronic Fatigue Syndrome or a distinct clinical entity
    Ellen Goudsmit, Charles Shepherd, Christine Dancey, Sandra Howes.
    Originally published in Health Psychology Update, 2009, 18, 1, 26-33.
    Footnote was added October 2012 by EM Goudsmit.
    http://www.foodsmatter.com/me_and_cfs/cfs_me_causes_general/articles/goudsmit-me-clinical entity-10-12.html

    .
     
  5. Holmsey

    Holmsey Senior Member

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    Hi Bob, one of us seems to be missing the point of this thread, unless the initial point is simply untrue.

    And you believe that the way to achieve that is to give up a direct channel of communication with government?

    If you're involved in a CPG and not an elected MP or civil servant then you are there by invite, no MP is required to give you his time by law, we can hope they do so however from genuine interest in our perspective.

    This presumes that you operate from some base of power, given 'our' current position I fail to see how being aggressive with the few MP's who are prepared to listen to us is advantageous, as stated above none of them 'have' to listen to our views.
    Surely those with whom you'd want to forgo reason are the MP's who don't listen, the policy makers with remit for health who by their actions perpetuate the status quo. How about this for a strategy based upon your stated view and our current position of power. We all write to the health minister and say we won't be writing to them again until they acknowledge our viewpoint which is based entirely upon discriminations of our own choosing and then stand back to see how long it takes for our position to fail.

    Again, we seem to differ in our understanding of the outcome, the minority lost and the minority then left, removing themselves from the debate, removing a voice and a route to change.

    I'd love one, perhaps someone following this thread knows one of those on the CPG, perhaps one of those who apparently left that group and could invite them to comment.
     
  6. Bob

    Bob

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    Hi Holmsey, I agree that we seem to be responding to different information, as I didn't understand your last post.

    I wonder if it's just a matter of how we interpreted the ME Association article.

    This is my interpretation...

    A dispute arose in one of the subgroups in the Cross Party Group on ME, in the Scottish parliament.
    The subgroups probably include MSPs (Members of the Scottish Parliament) and seem to be an integral part of the CPG on ME.
    At the main 'CPG on ME' meeting, it was proposed that a vote was put to all members, and the vote was agreed to by the CPG.
    The vote failed to include an option for the status quo, so some members abstained.
    The majority of voters voted for the 'ME' only option.
    Not knowing the composition of the voters, we don't know how many MSPs were in favour of the 'ME' only option: It might have been a majority, a minority, or none.
    Now the CPG convener, Mary Fee, MSP, is trying to get the vote overturned on the basis that members did not understand what they were voting for, or the implications of the vote.

    That's it, as far as I understood it.

    Where the article says:
    "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."

    Without further info, this appears to be a rather sensationalist opinion of the writer, who seems to have strong opinions about the matter, hence the apparently biased reporting.
    There's nothing to suggest that the CPG on ME has been closed down.
    All that's happened is that their remit has been changed, and not everyone is happy about it.
    Many clearly are happy about it, because they voted for it.
     
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  7. Holmsey

    Holmsey Senior Member

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    Bob, this is part of the original posting, it is taken directly from the MEA's website and appears to be quite clear if rather scant on detail -

    "While there are ongoing disputes about what was said by whom and when, the fact is that the MSPs made it clear they would not countenance exclusion of patients with a CFS diagnosis from the group’s remit, so a vote for the ‘ME only’ option would effectively close the group."

    The important point in my opinion is that the MP's would not accept exclusion of patients with a diagnosis of CFS. In Scotland, as elsewhere, diagnosis is based upon the WHO ICD coding system and the WHO do not differentiate ME and CFS under their ICD codings, both are listed as G93.3, CFS is clasified in the following manner - under ICD-10: Syndrome - fatigue F48.0, chronic G93.3, postviral G93.3" ME is also listed under G93.3

    The MP's in question were not stating that they did not believe that ME and CFS were not potentially different illnesses but rather that those with a diagnosis of CFS were not excluded from any recommendations. Last year or the year before the Scottish Government published their proposal of differentiating the two, their proposal...

    I am Scottish, and let me tell you this is an admirable stance for my MSP's to have taken, because right now, there is only a suggestion of how we would define the difference, and while it's not accepted and not re-applied to those already diagnosed using other criteria then any diagnosis is unsafe, not that I believe anyone claiming a diagnosis of ME in Scotland has a cat in hells chance of the same diagnosis from an alternate GP who prefers the term CFS or ME/CFS, or PVS. Believe me, because that's what it's down to, a GP holding a similar reasoned but personal preference to one or other term.

    Why would anyone support patient discrimination on the basis of historical heterogenicy, until you direct doctors toward accepted official differential diagnosis definitions then they cannot and will not make differential diagnoses, and that's where we are in the real world, we do not have accepted different diagnosis criteria, only opinion on what they should be.

    So a minority of us, those who think they know how ME and CFS differ, who beleive they have ME and that ME is somehow more important than CFS, deserving of it's own CPG have walked away, well done them, what a victory. We loose access to listening, probably caring MP's, we reinforce the 'hard to help' label, we ensure the CPG won't or rather can't influence government, policy or treatment becase it no longer exists.

    Forgive me if I don't join in on the back slapping for having made our political point.
     
  8. Bob

    Bob

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    Oh, here's a slightly different version. Maybe other people were responding to this:

    Over the summer recess, a dispute had grown within one of the subgroups, which escalated until a vote was put to the full CPG on whether to 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.
    While there are ongoing disputes about what was said by whom and when, the fact is that the MSPs made it clear they would not countenance exclusion of patients with a CFS diagnosis from the group’s remit, so a vote for the ‘ME only’ option would effectively close the group.
    A vote took place at the meeting and by post, and a majority voted for the ‘ME only’ option. It is now highly unlikely that there will be a CPG on ME in the Scottish Parliament for the rest of this parliament or for subsequent parliaments.
    http://www.meassociation.org.uk/?p=13117
     
  9. Bob

    Bob

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    The ME Association seem to have changed the text (see my previous post), because that's not the exact text that was included in the opening post, which is as follows:

    "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."

    My interpretation of that was that they would not countenance exclusion of patients with a CFS diagnosis, unless it was voted for by a majority of members. I thought that was why the put forward the vote. The latest version of the article has more clarity, and confirms what you have said.

    I don't understand why they put forward the vote if they were not prepared to accept its verdict, and if they didn't include an option for the status quo. It suggests both incompetence and a democratic deficit. But I'm just speculating again, as I don't know exactly what's gone on.

    In any case, it seems to be a severe breakdown in communication if the voters did not know that the MSPs would close the group if the 'ME' only option was voted for. At least, I assume that this was the case, otherwise it seems that a majority of voters are deeply unhappy with the way the group is run.

    It seems more like a severe breakdown in communication than anything else.

    But you again refer to a 'minority', whereas this was a 'majority' decision.

    I'm not sure if all the voters consider ME to be more important than CFS, but they clearly want a group that distinguishes between ME and chronic fatigue, and which takes the differences seriously.
     
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  10. ukxmrv

    ukxmrv Senior Member

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    I don't think that the TYMES Trust and the 25% Group would be interested in destroying the parliamentary group or acting in a trivial way but both voted for the "ME" option and are not happy at the way this is being portrayed by the MEA.

    Both of these group felt it was important for them to vote the way that they did.

    There are two sides of the story here.

    The Scots parliamentary group has not been closed and there has been no hint from other than the MEA that this could be a consequence.
     
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  11. Bob

    Bob

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    Thanks for the info, ukxmrv. The MEA info did seem to be rather one-sided (or biased) in the way it was written. I'm very interested in what's going on in Scotland, because the CPG on ME seem to be taking it quite seriously up there. And the CPGs seem to be serious parliamentary procedings, with teeth and funding, unlike the APPG in the UK parliament.
     
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I’ll start here: > “There are different opinions about how best to push for political change, so obviously these are your opinions, rather than statements of fact...”
    This is an appeal to a fallacy of relativism – “all opinions are created equal because all holders of opinions are equal” . This is simply nonsense – there are things that work and, there are things that don’t work, no matter how strongly held the opinion is that they do. If (and it is a very big “if” given the evidence for how M.E/CFS advocacy is so frequently self absorbedly and self indulgently disported) M.E/CFS affected people are serious about achieving an effective presentation of a message that actually impacts in a beneficial way the attitudes of politicians, the media, scientists and medics, then the point of reference has to be established PR practice, not religious debates about ‘true names’ or 1970s notions of radicalist advance (or some other such b******s).

    In the present case the evidence of ‘epic fail’ comes from the very fact that a) The MSPs had to make clear “they would not countenance exclusion of patients with a CFS diagnosis from the group’s remit”, and b) that there was a vote on this issue which took place without comprehension of what the MSPs had said. There is no need to get into the details of the drama involved – the fact of the drama is evidence of fail. Those responsible have taken it upon themselves to act in a public capacity and have caused embarrassment to all M.E/CFS advocacy efforts – at the very least a sincere mea culpa is required. I’m sure that will not be forthcoming and instead self justification will be following in spades.

    I think its emblematic of a ‘reverse patricianism’ that is pervasive in discussions on M.E/CFS advocacy, to cast the MSPs as somehow responsible because they “allowed a vote which did not have an option for the status quo”. Participation in a political process like the CPG, isn’t a matter of the elected representatives acting in some supervisory capacity – it’s about citizens acting responsibly and engaging with the political process as though they were grown ups, not school kids who need guiding through the big bad adult world.

    Let’s be absolutely clear - No politician is going to willingly be put into a position where they will be seen as preferentially empowering one disadvantaged group over another. To attempt to do this to a politician or even just to appear to be attempting this, is a gross failure of advocacy effort – to do this within a CPG structure where politicians from a number of parties have specifically ‘declared’ neutral ground with the co-operative intent of offering exceptional support to an identified disadvantaged section of the population, is incompetent to the nth degree.

    IVI
     
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  13. Firestormm

    Firestormm Guest

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    Yep. With the state of knowledge still stuck like a needle on an old LP it is ridiculous even attempting to separate (and isolate) any patient based on nomenclature alone (which is all such attempts amount to at this point).

    Well that and 'expert' opinion based on anecdote in the main, and dodgy testing, lack of disease process, etc. etc. etc.

    "Barmy" springs to mind. And I wouldn't slag off the MEA for reporting in the manner that they did either. No doubt those involved will scapegoat them for that leading to the inevitable 'discussion' about what lies behind the belief of each organisation.

    "Oh the MEA you mean Encephalopathy. Yes they don't believe in Encephalomyelitis don't you know and can't possibly represent people with ME!"
     
  14. Holmsey

    Holmsey Senior Member

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    Hi Bob, yes, I can see that there's been a change,

    Yes I'd agree entrirely with that, but they should have known it would close the group, no MP's and all you have is an interest group.


    Two different references, my origianl minority were the MSP's who made their position clear should the vote being pursued go ahead, they lost and they did as they had said, left. That action effectively disolves the CPG, because a CPG is a political entity, I'm up for being corrected but I think the cross party refers to cross political parties not the inlcusion of non political bodies.

    In one sentence my point is that 'we' by way of those responsible for forcing the vote along the lines they have, effectively placed more importace on the use of a name than they did on having direct access and the potential to influence interested MSP's.


    And nothing I've read in any Scottish Parliament literature suggests that it wasn't being taken seriously, if the MSP quote is correct then what was being said was that they would not contenance patients with a diagnosis of ME/CFS or CFS being excluded. So, you have a situation where you refer to ME, and promote both the use of and further seperating definition of 'ME' while acknowledging that many who are termed differently potentially have 'ME'.

    Seems simple to me.
     
  15. ukxmrv

    ukxmrv Senior Member

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    So where do we get the idea that patients would be excluded based on their diagnosis and not on the most appropriate diagnosis fot the patient?

    (i.e. would the cente of excellence being discussed be able to dx patients based on a ME criteria (which ever one they decided to use))

    Seems like people here are making a lot of assumptions and not talking to the people who attended this meeting
     
  16. ukxmrv

    ukxmrv Senior Member

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    Holmsley.

    May I ask if you are doing your lobbying as part of a charity, group or as an individual CFS patient?

    We you actually at the meeting or do you normally attend.

    Sorry to ask the q's just want to get your experience and position clear.

    The TYMES trust and the 25% Group who attend these meetings and voted aren't of the impression that the meetings are in any danger of closing down.

    The people who seem to be saying this would be the 1 MEA person who attended and wrote the report and yourself. Both against the result of the vote.

    I'm finding it hard to locate evidence that the group was ever set up to cover anything other than "ME". There seems to be no mention that the group was ever set up to cover CFS or "any other fatiguing conditions".
     
  17. Firestormm

    Firestormm Guest

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    Any chance you could link to what these two groups are saying then, ukxmrv? Be good to hear from all that are involved I think
     
  18. ukxmrv

    ukxmrv Senior Member

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    Sorry Firestormm. They both posted about it at the time on their Facebook pages.
    it's been a while now so the old postings have got buried. I remembered at the time because there was a another report somewhere else on the 19th September and a discussion on Facebook.

    This interest in the topic has resurfaced because the MEA minutes have just been released and this thread started so some of the earlier discussions on other forums about the vote are harder to find now weeks later.
     
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  19. Firestormm

    Firestormm Guest

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    Ok. Thanks.
     
  20. In Vitro Infidelium

    In Vitro Infidelium Guest

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    It's so much easier to classify who we want to be and describe how we wish to be seen, than it is to acknowledge how little resource you actually have and face the fact that it's the audience that defines how you are seen. Ironically a prolonged self regarding wrangle about M.E not M.E/CFS (or whatever combination is deemed offensive) will likely have far more descriptive power for how M.E > ME/CFS > CFS/M.E > CFS affected people are perceived by the wider society, than any planned advocacy could ever have.

    IVI
     
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