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Cross Party Group on ME

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

  1. Bob

    Bob

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    Just a point of information. The '25% group' support the most severely affected ME/CFS patients. "25%" refers to the proportion of patients who are thought to be housebound or bedbound.
  2. user9876

    user9876 Senior Member

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    Yes I think I have just read that and that is what prompted my comment on diagnosis.



    It can be much more than a name it. What is important is who is running them and what type of services they provide. For example, how much diagnosis do they do. I know the NICE guidelines list a basic set of blood tests and I think Drs have a tendancy to limit themselve to this rather than following the other comment about investigating other appropriate diagnosis. Hence having links to a range of specialists can be very important. Then if the clinics are just offering CBT/GET this is quite limited. I would have thought pain medication and dietary advice were both critical elements.

    My guess is that people are using the name of the clinics as a proxy for the type of service they deliver.
  3. Bob

    Bob

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    People on this thread have been referring to a 'minority', but it was actually a 'majority' who voted for the changes at the 'CPG on ME', whatever those changes were. We don't even know exactly what they were voting for, or why.

    All we have is a short article to go by, which seems biased in favour of a particular position, and has now been withdrawn from the MEA website.

    I'd be quite surprised if a 'majority' of the voters would have voted for an option that they knew would close down the 'CPG on ME'. So I wonder if it was a communication breakdown, or the article is misleading. But there again, maybe they purposely voted against the wishes of the majority of the parliamentarians. (But were all the parliamentarians of the same opinion?) I just don't know the facts, and nor do you.

    If the majority of the 'CPG on ME' did vote against the wishes of the majority of the parliamentarians, then it does raise questions about whether the parliamentarians are properly representing the needs and wishes of the 'CPG on ME', and patients. If there is a fundamental disagreement about what the group is for, then it raises all sorts of issues. This needs to be sorted out in a grown-up way. (i.e. through discussion and negotiation.)

    Also, someone has said that the MEA article is misleading, in a number of ways, including the fact that the 'CPG on ME' has not actually closed, and continues to function. According to official information, the next meeting is on 7th Nov at 1pm in Committee Room 5.

    So, there are many questions, and there's not much information.
    I think we should wait for more info before judging anyone.
  4. ukxmrv

    ukxmrv Senior Member

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    Regardless of what is released about this meeting I can't see the problem with a group convened to look at ME working for a centre to treat patients with ME. There are probably thousands of pre-CFS people left who are still needing treatment.

    If another group was convened to work for a centre of excellence for CFS or fatiguing illnesses then that is perfectly fair and reasonable.

    If the new ME Centre of Excellence really was "excellent" and able to dx patients using an agreed criteria and then able to reprocess all those currently dx'ed with CFS, then all the better. It's a win-win situation.

    It's up to the CFS group to fight for what they want rather then try and destroy something that ME patients want to achieve.

    What would be the worst possible outcome for existing people with ME would be the roll-out of the English "CFS" clinics which AFME has been encouraging for Scotland with mainly NICE CBT/GET on offer.
  5. Firestormm

    Firestormm Guest

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    I don't think we even know who comprised the 'voting community' so any thoughts of a 'majority' being representative needs to also be placed on hold.

    It was the entry on the 25% Facebook page (above) that mentioned 'CFS/ME Fatigue Centres' and my assumption that perhaps they had something to do with the vote. Again, without further information (and I can't for the life of me think why further and specific information is not being made available by e.g. Thyme's Trust and the other groups involved), we were merely speculating.

    The 'new ME centre of excellence' is an IiME initiate I believe. They were not part of the committee were they? And I don't know what relevance a proposed 'clinic' in East Anglia (?) can possibly have to do with Scotland. Bit of a long way to travel for someone with (even) with 'ME' I would have thought.

    UKXMRV - you are again pushing for something that don't exist. I prefer to use the initials ME too; but would attend a 'CFS Fatigue Clinic' like the one now set-up independently in Leeds for example - if I lived there - and I felt it necessary to see a specialist because one wasn't available on the NHS (unless they take NHS patients of course - I can't remember).

    Our service (now somewhat reduced) in Cornwall is deemed the 'CFS/ME Service'. It makes not a scrap of difference. This is the ONLY place to be referred to by your GP for diagnosis, second opinion, and management advice as well as specialist prescription advice.

    I think people are expecting to be 'treated' differently if they attend a clinic with the name 'ME' and if it's on the NHS they won't. The only possibly difference is the expertise of the specialists in attendance. Hell, my former consultant specialist was known to prescribe anti-virals! Does that make our service 'better'? Does it make it an 'ME' service for people with 'ME' and not 'CFS? That's rhetorical too.

    I still maintain that objections are in large part down to what I perceive to be a myth that something for 'ME' will be unique and will offer those who 'think' they have 'ME' and not 'CFS' a better treatment option i.e. not CBT or GET but something more.

    What's in a name? Plenty when it comes to my diagnosis it seems!
  6. Holmsey

    Holmsey Senior Member

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    This only adds to my confusion, if their ranks includes those diagnosed with CFS, and their 'interest' is severity, then why are they risking / delaying work on opening centres of excellence by concerntrating on only part of their members.

    Are you really suggestiong that a group formed to give a voice to 25% of ME/CFS sufferers is now working to give a voice to only those in that 25% who have a dignosis of ME? Or is it the case that anyone who can qualify for the 25% in the first instance will be assumed to have a missdignosis if they've been told they have CFS.

    More exclusive by the post, do you know who gets to decide if you're in the worst affected 25% and how that's decided?
  7. Holmsey

    Holmsey Senior Member

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    I'm begining to feel like a broken record, again you're speculating, it was noted early on in this thread that MSP Mary Fee was trying to salvage the situation, and as to Novembers meeting, we're yet to see if it happens and if so who turns up or for what business.

    Do you have any other input than that which started this thread regarding the meeting?

    The role of an MSP is to represent the people, then their consitutents in that order. If as I have stated earlier a CPG is a cross party group referring to cross political parties then they and only they constitute that CPG, everyone else is their by invite.
  8. Bob

    Bob

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    Hi Firestormm,

    I really think that if CFS/ME was treated as a biomedical illness, then the name would not be such an issue.
    The name has become symbolic of the neglect and insulting behaviour that most of us have to deal with at the hands of the medical profession.

    At my local NHS CFS/ME service, the only thing they offered me was group CBT/GET.
    Totally useless and inappropriate.
    Although the staff were lovely and caring, the service was an insult.
    The diagnosing 'expert' consultant didn't even understand the nature of CFS/ME.
    He thought I should experience malaise only after exercise.

    So, I think that people are simply pushing for a service that appropriately deals with a biomedical illness.
    I don't think it's any more complicated than that.

    CBT might be helpful for some people (although, not according to the PACE or FINE trials), but it needs to be offered as a tool to help people cope with a chronic illness, and not as a treatment or cure. It's been proven ineffective as a treatment or cure.

    By propagating the clinics that offer CBT/GET, they are treating CFS/ME as a psychological illness. This harms us in the long term, because it perpetuates the myth that CFS/ME is a maladaptive cognitive behavioural disorder.
    currer, Valentijn and Jarod like this.
  9. Bob

    Bob

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    Like I said before, I'm pretty sure that the main issue, for most patients, is just to get CFS/ME treated as a biomedical illness.

    I don't know what's happened at the 'CPG on ME', so I can't comment on the specifics there.

    But I believe that, on the most part, any desire to use the name 'ME' is mainly symbolic of the desire for their illness to be treated as a serious biomedical illness.

    People are not trying to exclude people. It's just a case of getting CFS/ME treated as a biomedical illness. So all patients would be treated as if they have a biomedical illness rather than a psychological illness. CFS patients included. Re-diagnosis isn't necessary. Just proper treatment based on current criteria is necessary.

    So the diagnostic criteria don't even need to be changed. An immediate difference would be to get rid of psychological treatments. Then treatment would gradually improve as the illness was taken seriously. This would also mean the research would become better focused.

    As everyone in the 25% group knows that they have a biomedical illness, then they have 'ME', as far as they are concerned.

    I think the name issue inevitably becomes a distraction, but I strongly support the need to have CFS/ME treated as a biomedical illness.


    (In my experience, only a small minority of patients want 'ME' to only signify an illness described by specific lesser-known criteria.)
  10. Bob

    Bob

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    Erm, I think that's the main point that I've been making throughout this thread... That we're speculating.

    Firestormm posted some information, but that's all, other than the CPG on ME website.

    The reason I'm not using the opening post as a reliable source of information is because it only includes partial information, it's contradictory, it's clearly biased, and it doesn't make sense.

    Sure, but if everyone you invite to join the CPG votes against you, then there's clearly been a breakdown in understanding. Probably nothing that a bit of intensive communication and discussion can't fix. If the MSPs can't understand why the patients have such strong feelings, then maybe they aren't doing a very good job. They need to work through it, and I hope they will.
  11. Bob

    Bob

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  12. Holmsey

    Holmsey Senior Member

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    Are you suggesting that all those diagnosed with ME pre-CFS, and by pre-CFS I mean that name/phrase acronym being coined, would today get an ME diagnosis, I contend you would be wrong, they would not, they'd get the 'preferred' term used by the GP or clinician making the assessment.

    This is the politics of my disease is better than your disease without either having any idea what their disease really is, that science is yet to be published.
  13. Holmsey

    Holmsey Senior Member

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    You say you don't know what's happened on this CPG but then you state that People are not trying to exclude people, where are you getting that from because the original post indicated otherwise and you've just said you don't know any more than that?
  14. Bob

    Bob

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    I'm making an educated guess, based on my experiences talking to CFS/ME patients over the years.

    I have also come across the organisations that have been mentioned (the TYMES trust, and the 25% group), and I know that they just want to help patients. Their motivation is that patients should get proper recognition and treatment, and that the psychiatric lobby should not continue to have a hold over the illness.
  15. Firestormm

    Firestormm Guest

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    From what I can see elsewhere, this study on 'CFS' from Montoya, has been generally welcomed by those of the 'ME' camp (adding further confusion to any attempt to 'separate the two'). Now whilst I might be accused of splitting hairs, I take it that rather than this all being about 'ME' it is actually being welcomed because it involved a drug and not a therapy: http://www.meassociation.org.uk/?p=13221

    It does make the whole issue rather lame in my opinion. If for example this drug were to survive a blinded study of significance - it would presumably be offered to anyone with a diagnosis of CFS (and ME). Offered in any and all 'specialist centres' or GP surgeries. Where then would it leave those who push 'ME' ahead of 'CFS'? Rhetorical question but you see what I mean? When it comes to drugs I think people are more accepting of "it must be good" and thoughts of which "sub-category" i.e. ME or CFS go out of the window. "Just give me that drug, man!"

    Of course the efficacy of the Montoya study it will be argued, was dependent in large part on the criteria used, and the assessments made by the lead clinicians. But when it comes to this study I understand it also had as much to do with the existence of viral titres. Now how does that stack up in the 'ME/CFS' debate? Doesn't it cut right across any and every argument? Rather like Lipkin's study?

    There are way, way more studies on CFS using so-called CFS i.e. non-ME criteria - even including studies from yesteryear. Because there are deemed to have been 'no answers' yet I think people conclude that they are looking at the wrong people, that there must be more to it, because I am still sick.

    Nought wrong with throwing the ineffectiveness of the PACE trial back at them and demanding better treatments generally, but demanding that a separate group be represented, isolating another, based on who knows what (severity? the latest criteria of the moment?) just seems rather short-sighted and in the context of parliamentary representation, potentially very damaging (the suggestion I mean - as it was never taken up of course).
  16. Bob

    Bob

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    As I've been saying, for most people, it's not about separating CFS and ME, or about excluding people. It's just about getting CFS/ME treated seriously, as a biomedical illness, and not as an illness-belief. The name issue has become symbolic, but there are also personal, political and some scientific reasons to push for the use of 'ME'.

    So, you're right, Firestormm, any biomedical research is nearly always welcome, as far as my experience tells me, even using a 'CFS' criteria. The Montoya study probably used a selective cohort of patients with raised antibody titres, so it wasn't just a plain CFS diagnosis. (I think that's the case, but I'd have to read the full paper to confirm.) So this indicates a biomedical process in the patients.

    Lipkin also used a selective recruitment criteria for the XMRV study, a requirement of which was signs/symptoms of a biomedical process (flu-like symptoms at onset.)
    I don't know if he is using the same recruitment criteria for his pathogen study, but he is focusing heavily on trying to sub-group patients in that study, because he believes that CFS is a syndrome with multiple causes or precipitating factors.

    I'm very sympathetic to the concerns raised on this thread about excluding patients, but I think the motivation for the changes at the CPG on ME are being misunderstood. (Yes, I am speculating, but it is an informed speculation.) The organisations involved are not interested in the subtle differences in symptoms between patients, in terms of excluding people. They just want to get the psychological lobby out of the picture.
    Valentijn and Firestormm like this.
  17. ukxmrv

    ukxmrv Senior Member

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    Holmsley, you seem to be arguing that the people with pre-CFS ME diagnoses by people who wrote the book on the subject (like Ramsay) don't have ME. Obviously they have ME per Ramsay or whatever they were diagnosed with. It's still on their medical records and some don't meet a criteria for CFS.

    If a centre of excellence was set up in Scotland to treat people with ME then a criteria will need to be decided and agreed on.

    It's you who are claiming people think one disease is better than the other. My opinion is that all of these diseases are equal. They may not be the same (we don't have the science comparing ME-pre CFS to CFS patients for example).

    It's up to the body that controls any clinic to determine what criteria will be used (unless Scotland adopts NICE) and what input the ME patients have on this.

    Once again it's perfectly reasonable for all the thousands of patients with a pre-CFS ME diagnosis to get treatment centres for themselves and perfectly reasonable for other patients who may meet the criteria agreed on to be treated there.

    If people with CFS or fatiguing conditions want there own or seperate clinics then they should lobby for them.

    It's the same with the X party group. If it is set up to lobby for ME and ME patients want to keep it that way then it's reasonable. CFS and CF patients could have their own XPG and one of the areas they need to work on is diagnosis.

    I'm sure that the MEA and all the other bodies are looking at all of this due to the publicity over their minutes.
    Valentijn likes this.
  18. barbc56

    barbc56 Senior Member

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    Until we have clear diagnostic criteria to distinguish ME from CFS, this almost seems like a "nonissue" as well as confusing,. I'm not saying the division should never be addressed but frankly, until our knowledge about me/cfs is more sophisticated, it seems like we are debating along the lines of how many angles can dance on a head of a pin.

    Barb C.:>)
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  19. Esther12

    Esther12 Senior Member

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    It's really obtuse.
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  20. Bob

    Bob

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    Or, looked at the other way, you might say that our knowledge will never become more sophisticated, if the issue of subsets is not addressed in research and treatment.

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