A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

Cross Party Group on ME

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

  1. Bob

    Bob

    Messages:
    10,254
    Likes:
    18,303
    South of England
    Well, if anyone has heard of the phrase "divide and conquer", it's certainly been achieved in this thread.
    I see a lack of tolerance, compassion and understanding on both sides of the argument.
    Many people are expressing views based solely on their own self-interests.
    In those terms, both sides of the argument are identical.

    If our community always approached this subject with the aim of mutual support and trying to further each others' needs and aims, then discussions wouldn't degenerate and become divisive.
    We could be promoting each others' interests with enthusiasm.
    In my opinion, promoting each other's needs, would also promote our own at the same time.
    I'd like to see people with 'ME' treated as they would like to be treated, and I'd like to see people with 'CFS' treated as they'd like to be treated.

    Patients have a lot of combined experience and insight, and they are the real 'experts' in this subject.
    So, I think they should be listened to, and treatments designed for their needs, as they express them.

    I understand both sides of the debate, and I agree with what Mark has said, that the subject needs to be addressed creatively, constructively, positively and inclusively.

    It seems that some of the entrenched opinions, expressed in this thread, are probably irreconcilable, which I think is a shame. It seems futile discussing the subject, if people are not prepared to understand the subject from other people's points of view.

    We should be asking questions of each other, and seeing what we can do for each other, not attacking each other for holding strong opinions based on years of illness.

    My own opinion is that we need research, research and more research, based on subsets and exclusive cohorts (any cohorts, as long as they are as selective as possibly). Luckily, this seems to be happening in the USA.

    And we need to get rid of the psychiatric lobby. I think we can all agree on that. Can't we?

    And I think that clinics should be part of the research efforts, and should also focus heavily on misdiagnoses. The clinics should offer counselling for coping with long-term illnesses, and other emotional support. And they should organise home-support. (And they should offer physiotherapy, occupational therapy, and massage, if they are helpful for patients.) They should treat the illness as the severe biomedical illness that it is, including looking after in-patients. I'm not sure what they'd be able to offer, in terms of biomedical treatments, but they could be part of the effort to develop treatments, for subsets of CFS/ME. They should also diagnose patients by all the various diagnostic criteria, and keep records, to be part of the research effort. (I've never quite understood exactly what a clinical 'center of excellence' would involve, but I hope it would be along these lines.)

    Also, patients should be offered social care and home assistance when needed, without having to jump through millions of hoops, only then to be denied it.

    When I first became ill, I was bewildered, and desperately ill. (As we all were.)
    Nothing was offered to me, and the doctor was clueless.
    This has got to change, and patients have got to be offered real support and information.
    This can only come about by treating the illness as a serious biomedical condition.

    Four years later, I found out that there was a local NHS CFS/ME service.
    What did they offer me? CBT/GET.
    What an insult.
    The consultant didn't even understand the nature of CFS/ME. He was ignorant.

    I had improved a bit by the time I was offered a place at the clinic, so I was just about self-sufficient again (in terms of looking after my daily needs), and so I could make it to the clinics and participate in the group.
    But the illness that I'd experienced was not represented at that clinic.
    I'd been totally physically knocked out, with severe malaise and weakness, not even able to stand up, but the group therapy just involved talking about irrelevant nonsense, cutting out pictures from magazines to make a collage, and planning daily activities etc. (As if my illness was a result of me having an infant-like mental capacity.)
    What a load of patronising, neglectful and insulting nonsense.

    So, I think we should focus on supporting each other.
    And on positive and creative advocacy.
     
    Xandoff likes this.
  2. Esther12

    Esther12 Senior Member

    Messages:
    5,793
    Likes:
    7,646
    To some extent that's true, but I also think that there has been some forthright and meaningful discussion about a complicated topic that a lot of people feel very emotionally entangled with. As internet discussions go, this has been a relatively good one imo. (I've not been following it fully though, so may have missed bits).

    I've had bad experiences with a CFS centre too, and having read the research of many of those making money from CFS in the UK, I'm not at all surprised that so many patients have had bad experiences. I think that 'fatigue management centres' will entrench many of the problems which we have already seen with CFS in the UK, but I also think that trying to promote ME as an alternative diagnosis is a poor tactical move. (I have to admit, I'm not full of brilliant alternative plans though, but I'm not that aware of the politics, and tend to only read psychological CFS stuff, so probably end up believing that things are worse than they are).
     
  3. user9876

    user9876 Senior Member

    Messages:
    1,053
    Likes:
    2,973
    I think you have made a very important point here which is what do we want clinics to do. What do we expect.Good diagnosis is clearly an issue. How about treatment, or help in managing. What would be good services that should be offered, what have people found useful elsewhere? I would like to make some suggestions but find myself unsure.


    Given the set up in the UK that would be hard. But the nice guidelines are comming up for review and maybe this is where criteria and the diagnosis discussion should be had.
     
  4. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    What community ? Perhaps there is some entitity of identifiable common interest that is definable in terms of its members being affected by one or more classifications of illness or diagnostic sets - although if there is no agreement on who does and who does not belong, then a single community seems improbable. I'm afraid I doubt that the mere fact of common diagnosis is enough to to produce something that has the cohesion of an identifiable 'community'. In the present case, the perspective of the Tymes Trust and the 25% group are axiomatically exclusive of others who by definition of the Tymes Trust and the 25% group, are non belongers. Those organisations are of course free to argue for whatever position they choose but they have made it clear that they have notion of exclusive entitlement. It is difficult to argue for a common community of interest and belonging in such circumstances. And although for much of the nearly 30 years I've been ill, I'd fit with the 25% qualification - I utterly reject such spurious grounds for selecting a quarter of M.E (even just M.E !) patients as being worthy of especial consideration. Thus I am a non belonger of the 25% group 'community', not because I lack the illness qualification, but because I don't share their perspective.

    What stands out about this thread is how consistently focus has moved away from the fact of the PR disaster that has been so energetically drawn out of the jaws of success. Politicians who were unequivocally on the side of M.E/CFS affected people - have been alienated - that is what should be of concern in any discussion about advocacy and 'patient community'. Instead the usual -self referential, self absorbed discussions about the minutiae of case definitions and diagnostic criteria have run over 8 pages of comment. Perhaps that's the true distinction of the M.E, or is M.E/CFS, or CFS, or PVFS, or CFIDS or...or....or...or.......................... comunity, it is a community that is solely defined by a discussion about which not one single human being outside of that community could give a rodent's anus about.

    In my view the whole notion of 'community' will remain irrelevant until, not that there is some agreed qualification or approved diagnostic status or the salutation of some mythical M.E flag, but until there is an expressed willingness beyond the limits of established campaign organisations, to actively engage with the exterior world in the terms of the exterior world, instead of engaging in mere collective navel gazing, group fantasy and hobbyhorse obsssions that characterise most of current M.E/CFS (etc etc etc) internet dialogue.

    IVI
     
    Holmsey and Firestormm like this.
  5. Firestormm

    Firestormm Guest

    Messages:
    5,823
    Likes:
    5,989
    Cornwall England
     
  6. Firestormm

    Firestormm Guest

    Messages:
    5,823
    Likes:
    5,989
    Cornwall England
    Well then....

    Disaster.
     
  7. Bob

    Bob

    Messages:
    10,254
    Likes:
    18,303
    South of England
    "According to reports, Mrs Fee’s resignation follows a vote by members of the group which was overwhelmingly in favour for the use of “WHO ICD10 G93.3 neurological disease ME”. There were 30 votes in favour, five against and 12 abstentions."
    http://www.meassociation.org.uk/?p=13250

    I still don't understand what exactly the vote was about, and why some MSPs objected to it.
    Voting in favour of WHO ICD10 G93.3, doesn't seem very controversial, or radical. Does it?
    In fact, that's inclusive of 'CFS' patients.

    I'd like to know how many of the MSPs voted against. Only a maximum of 5 out of the 9 MSPs could have voted against.
     
  8. barbc56

    barbc56 Senior Member

    Messages:
    2,010
    Likes:
    1,674
    Actually, I have found this thread to be quite informative as well as generating ideas. I think compared to some other threads this one has been much less hostile and possibly productive.

    Barb C.:>)
     
  9. Firestormm

    Firestormm Guest

    Messages:
    5,823
    Likes:
    5,989
    Cornwall England
    Oh I think if the above is correct (no reason why it shouldn't be) then I'd be pissed off to. Not only do they not accept the MSP's position they then complain to the Parliament about it.
     
    Holmsey likes this.
  10. Bob

    Bob

    Messages:
    10,254
    Likes:
    18,303
    South of England
    You can replace "our community" with "our communities". It would have the same meaning to me.
     
  11. Bob

    Bob

    Messages:
    10,254
    Likes:
    18,303
    South of England
    The 25% Group is just a support group for people who are severely affected. It's perfectly OK for an organisation to focus their activities on a group with particular needs. That doesn't make them divisive.
     
  12. barbc56

    barbc56 Senior Member

    Messages:
    2,010
    Likes:
    1,674
    Nope, that's your interpretation. It's all relative.

    Barb C.:>)
     
  13. Firestormm

    Firestormm Guest

    Messages:
    5,823
    Likes:
    5,989
    Cornwall England
    I rest my case. For this evening.
     
  14. Bob

    Bob

    Messages:
    10,254
    Likes:
    18,303
    South of England
    But how does that rest your case, Firestormm?

    "According to reports, Mrs Fee’s resignation follows a vote by members of the group which was overwhelmingly in favour for the use of “WHO ICD10 G93.3 neurological disease ME”. There were 30 votes in favour, five against and 12 abstentions."
    http://www.meassociation.org.uk/?p=13250

    The WHO ICD10 G93.3 covers CFS and ME and PVFS.
    It only excludes the wide range of other fatiguing illnesses, not related to CFS.

    I thought you had been arguing in favour of using WHO ICD10 G93.3.
     
  15. Firestormm

    Firestormm Guest

    Messages:
    5,823
    Likes:
    5,989
    Cornwall England
    From MEA Facebook page after I asked if anyone knew the actual question behind the 'vote':

    The person who posted the answer, commented further:

    I put it to you members of the jury that the question was lacking rather a lot. It made out that ICD10 was about the nomenclature and limited thereby to 'ME'.

    And that 'ME-CFS' ergo those who don't make some sort of undefined 'grade' should be treated in some undefined way, yet to be defined, differently.
     
    Bob likes this.
  16. Bob

    Bob

    Messages:
    10,254
    Likes:
    18,303
    South of England
    OK, I think I'm beginning to understand it now.

    The vote seems to have been an attempt to get the 'CPG on ME' to focus on the WHO ICD10 G93.3 categorisation of CFS/ME/PVFS. And to exclude all fatiguing illnesses that are not related to G93.3 CFS/ME/PVFS.

    In other words it seems to be about getting the CPG on ME to focus on CFS/ME/PVFS.

    I think the name issue might be a red-herring here.
    The vote seems to have involved focusing on the name 'ME', to highlight the desire to focus on G93.3.
    But the name issue doesn't seem to be the main thrust of the vote, and it doesn't seem to be about separating ME from CFS.

    I might have misinterpreted it though.


    Edit: Just seen your last post, Firestormm. Thanks for that info. I think it confirms what I've said in this post. That's my interpretation, anyway.
     
    Valentijn likes this.
  17. Valentijn

    Valentijn Activity Level: 3

    Messages:
    8,426
    Likes:
    14,897
    Amersfoort, Netherlands
    I think fatigue centers end up focusing on the cheapest end of the spectrum. And you end up with therapists that are treating depression legitimately for some patients, and really do not comprehend the difference between burnout and ME/CFS, which results in horrible treatment for ME/CFS patients. I really don't think it is practical to have the same specialists treating people with such vastly different issues.

    I suppose one alternative is to be referred to clinics or specialists based on medical issues and symptoms, rather than the name or category of the disease. I for one don't give a damn about my fatigue issues, so a fatigue clinic makes very little sense. And sending people with psychological symptoms to a clinic for fatigue also seems to be missing the point.

    I agree with Mark to some extent, that "CFS" isn't really the problem. The bigger problem is that certain groups have deliberately equated CFS with CF (and even simple fatigue) in various ways. I think that approach needs to be directly attacked.
     
    Bob likes this.
  18. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,729
    Likes:
    2,541
    London
    The vote seems to have come about in response to AFME's work to get the English fatigue clinics rolled out in Scotland. Action for ME as you probably know tried to change it's own name to include fatiguing conditions earlier.

    I think Bob's interpretation was right.

    The patients with ME were told that they had to vote on this.

    AFME want any new clinics in Scotland to include fatiguing conditions. They have been lobbying hard with the Scots MSP's. I sounds like this was an attempt by AFME to change the remit of the XPG.

    I'm relieved that someone has made the question public now. Been in touch with some of the people at the vote but I don't like to post things here which are hearsay or I don't have permission.

    I've just seen a discussion on the ME Action UK Yahoo group by some people at the meeting if anyone is interested.
     
  19. barbc56

    barbc56 Senior Member

    Messages:
    2,010
    Likes:
    1,674
    I have found that if I focus on symptoms my doctor(s) seem more understanding. It's sometimes easier to get disability by also focusing on the symptoms but of course you do also have to have a diagnosis. However, my doctor will put things such as Fibromyalgia with chronic pain and fatigue which goes a bit further than just saying Fibromyalgia. The same thing with CFS/ME with the added PEM, pain, POTS etc. etc etc. as these conditions are not necessarily thought of in terms of the magnitude of the impact these conditions have on everyday life. Now there are obviously conditions such as heart failure which are self explanatory. I was told that I wouldn't be able to get disability for FM/CFS/ME but the way my doctor worded my condition did get me on disability.

    I am not necessarily saying that this is the way clinics in the UK and elsewhere as I don't know that much about how they work but this is certainly food for thought.

    If one gets a diagnosis of me/cfs in the UK, do you have to go to a fatigue clinic? Can you stay with your primary physician and get treament for the symptoms? I do see a specialist, a neurologist but have never had GET nor CBT suggested. I did have warm water therapy with a physical therapist who specializes in FM, she gave me tips on getting some sort of activity in my life but nothing like going beyond the envelope of what I am capable of doing. It's not cheap even with insurance as the copay is ridicuously high.

    Are the clinics involved in any research?

    There are several fatigue centers in the states. I have heard mostly negative things about the clinics such as patients weren't heped and spent a lot of money as most centers are not covered by insurance. They also tend to use alternative medicine and making a profit with things such as supplements. I know, n=1 here, but I'm wondering if other's have had experiences with these clinics in the US.

    I think Montoya's fatigue clinic is the only one that I have heard about that has a good reputation Is Klimas's practice considered a fatigue clinic?

    Barb C.:>)
     
  20. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,729
    Likes:
    2,541
    London
    Hi Barb,

    I've also found that focussing on my symptoms is a good way of engaging a doctor. It's hard to put the full horror of what I experience with the UK NHS system into a few words or paragraphs. Each patient will experience something different so I'd like to get across these points in response.

    1. Our care is under a local doctor called a GP in England. We can chose to see a private doctor or a NHS doctor. The private doctor can be expensive. Not many people have insurance that covers this. Most of us see an NHS doctor.

    2. We have little choice over which NHS doctor we see. In my area of London they run a system with boundaries and I can only join a clinic that will take me on their books and is in my designated area.

    The doctors at that clinic are generalists. They are my first call people. They also control to an extent my access to secondary services both NHS and sometimes private.

    These doctors may not believe that ME, CFS or FM are "real medical conditions". The beliefs of the doctors within a clinic may vary.

    3. None of the GP clinics in my area offer an appointment to meet a doctor or to examine their ideas. It's either join up or not

    4. Clinics that are known to have "good doctors" can refuse to take on any more patients or any one patient if their books are full

    5. The NHS set up a series of CFS/ME clinics over England. They vary in quality. Some clinics do not have a doctor and patients are seen by a nurse. Some clinics are under the control of a physican who is a psychiatrist. Most clinics follow the recomendations set down by NICE to some extent. Patients can have lomg waiting lists to be seen at these clinics. At some clinics they can see a physician to treat symptoms. At others they are offered CBT or GET and then discharged if they refuse to do them.

    6.Consider the term "post code lottery" which means if you live in some area (i.e London) your treatment options are confined to that area of the country. This is open to debate as some patients who are well enough to travel long distances can and do travel to what they think is a better doctor and a better clinic. There are controls in place to restrict that/make that happen depending on where you live. The patient can breeze through or fall at any fence along the way.

    7.These are part of the NICE guidelines on treating CFS/ME. This may be the whole extent for treatment for any patient at some clinics.

    <quote>
    Offer cognitive behavioural therapy (CBT) and/or graded exercise therapy (GET) to people with
    mild or moderate CFS/ME, and provide them for those who choose them, because these are the
    interventions for which there is the clearest research evidence of benefit.

    l If a full CBT or GET programme is inappropriate or not available, offer components of CBT or GET,
    either individually or (more effectively) together with:
    – activity management strategies (see page 20)
    – sleep management and relaxation techniques (see page 11).

    and

    People with severe CFS/ME
    l Offer people with severe CFS/ME an individually tailored activity management programme as the
    core therapeutic strategy. This may:
    – be delivered at home, or using telephone or email if appropriate
    – incorporate the elements listed on page 20, and draw on the principles of CBT and GET.
    l Review the programme regularly and frequently.

    8. In the UK there is no equivilent of Klimas or Montoya. NHS patients are not given immune system tests as per Klimas. They are not given anti-virals as per Montoya. Chronic viral infections are not accepted by NICE as being associated with CFS/ME.

    9. If you want a symptom treated like POTs you may find that your GP doesn't understand the term or accept that it exists. You may also find that there is no doctor in your area of the country that understands POTS, will do a tilt table test or will treat it. It's not well accepted in the UK. You may find that your GP believes that blood pressure changes/heart rate changes are panic attacks. The same could be same for many other symptoms that you bring up.

    10. Yes clinics are sadly involved in research. The PACE trial was carried out in this way.
     
    Valentijn likes this.

See more popular forum discussions.

Share This Page