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UK: House of Lords to debate PACE study, Weds 6 Feb 2013

Discussion in 'General ME/CFS News' started by Sasha, Jan 31, 2013.

  1. Dolphin

    Dolphin Senior Member

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    Very interesting.
    Was this for ME/CFS or GWI or something similar, or for another condition entirely?
  2. Dolphin

    Dolphin Senior Member

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    Firestormm, I have heard something similar, from somebody who has been in touch with some therapists as well as some patients, regarding your point before that on the ground in many of the English clinics, a much more relaxed form of grading and a bigger emphasis on pacing, is often used. But as has been pointed out, it isn't necessarily the same treatment then.
    Valentijn likes this.
  3. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    And Wessely works for the MOD and DWP and others
    like I keep saying, the UK is a stitch up, a web of inbred f*ckwits who went to the "right" universities etc, an incestous kleptocratic web of ratbags, who all collude to back each other for "favours"
    look at their "Bedroom Tax" for the insanity and removal from the understanding of real life of these assholes.

    it's like I'm living a bloody episode of "Blackadder"! :eek:

    "I have a cunning plan!....let us make this Malgic Enkaphyitis-thingy, DISAPPEAR! We'll call it...Lazy Bastard Syndrome, so our Insewerance Company doesn't have to pay out and we'll pay Lord FondleYerBalls to do the dirty work for us, so if it goes "Bristols Up", he gets the blame, not us!"

    "Yeeeeees, my plan, yes MY plan is super! Now run along and get us some disabled gimpy types to beat up for some fun, Baldric!"

    :p
    Roseblossom and Shell like this.
  4. peggy-sue

    peggy-sue

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    My brother-in-law has ME Dolphin - same tiny "outbreak cluster" as I'm in.
    Him and me. Our respective partners got PVFS and IBS from the same "trigger infection" we were all exposed to.

    And his work (MoD) at the time was insisting on CBT, GET and antidepressants. He really disliked his CBTherapist.
    English was not her first language and she went absolutely gung-ho, trying to "eradicate his false illness beliefs and stop him malingering and pretending". She wouldn't listen to a word he said about difficulties he has and dismissed his concerns about the vile side effects he was getting from the antidepressants he was made to take.
    Roseblossom, Shell, Valentijn and 2 others like this.
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Peggy Sue
    ugh!!! :(

    one I love is that those scum still won't release the details on some of the vaccines they gave the GulF War Syndrome vets
    because you know, "national security" and "industrial proprietary information" and all that rubbish
  6. Esther12

    Esther12 Senior Member

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    Surely if they're applying different treatments to the ones tested, then they cannot claim to be carrying out evidence based treatments.

    edit: I don't have time to say anything about the debate. There were some interesting comments.
    Wildcat, Valentijn and Dolphin like this.
  7. Firestormm

    Firestormm Senior Member

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    Thanks guys. Am now in recovery. A 2 year old and 6 year old constitute far too much 'graded exercise' for little old me!! :) :)
  8. In Vitro Infidelium

    In Vitro Infidelium Guest

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    But that has always been the case, although obviously the increase in sanction scope makes the problem more acute. There's been ample evidence of sanctions being applied to people with mental illhealth and learning difficulties, and there have been some moves to addess this: see Items 81 to 96 - http://www.dwp.gov.uk/docs/m-37-12.pdf .The published 'protections' do not apply to those who failed in a claim for ESA but who nevertheless have physical health limitations and JSA calimaints will need the ongoing support of a GP (providing medical confirmation) if they have regular 'defaults' because of health problems.

    IVI
  9. peggy-sue

    peggy-sue

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    I'm afraid I feel quite strongly that despite Lady Mar's sterling efforts, everything she said was ignored in favour of the superficial but published hyped-up claims by the study's authors.

    I've always detested Winston. Condescending popularist. But then I disagree very strongly with any form of assisted fertilisation. There are too many kids already born who are desperate for adoption into loving homes. If somebody thinks that they can only love their own child, I'm not sure they're good enough to be allowed the honour of parenthood.
    Roseblossom, SilverbladeTE and Shell like this.
  10. In Vitro Infidelium

    In Vitro Infidelium Guest

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    There are pre PACE sensibilities still in place with some therapy services, which I suspect originate with this study http://www.hta.ac.uk/fullmono/mon1037.pdf see sections on Background on the use of exercise and Use of Structured Exercise - pages 5 and 6. which seem to set exercise into a pacing model more familiar to M.E/CFS patients.

    IVI
  11. Esther12

    Esther12 Senior Member

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    I didn't see it was a time of celebration... congratulations on being born! A fine piece of work.


    Ta. I don't think that I know anything about that study. Is there any reason why you think that it was particularly influential?
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I'm only guessing - but the design and active delivery was done by three workers - a psychologist, an occupational therapist and a physiotherapist, it seems to have been a team approach set within a construct of 'pain management' style delivery. I therefore think it is possible that the research had appeal to other OTs and Physios who carried on irrespective of what was coming elsewhere from the heights of Psychiatry. It should be said the Frenchay team were part of PACE and its a shame that their earlier work shows no sign of have made an influence. I'm not suggesting the Frenchay study was somehow perfect, but I think it does show that 'rehabilitive' approaches can be built more in line with M.E/CFS patient needs.

    IVI
  13. Valentijn

    Valentijn Activity Level: 3

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    Yeah, interesting how improvements in the walking test were only significant if "outliers" (including very poor scores from 2 CBT patients) were removed - must be sure to remove any hint of PEM! A lot less BS in that study than in PACE, etc, but still a lot of crap in it. I'm not quite sure how to reconcile their assertion of a chronic illness "coping" style of CBT being used while GET recommendations were included with it.
  14. Min

    Min Senior Member

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    How can you 'rehabilitate' someone with this neurological illness with exercise, given that exercise intolerance is a diagnostic symptom of myalgic encephalomyelitis?


    Many members of the 25% M.E. Group for severely affected sufferers report being made permanently severely disabled by being coerced to exercise by these so-called 'specialists'. Of course, the severely affected, a quarter of all sufferers, are simply ignored in research done by the Wessely school of psychiatry who only 'research' people with mild vaguely defined chronic fatigue.

    Chronic fatigue is a symptom of many illnesses.
  15. Esther12

    Esther12 Senior Member

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    I see. ta.

    re: rehabilitation, 25%, etc - I think that a lot depends upon specifics. Rehabilitation techniques are often used post-stroke, brain injury, etc. Some of them can be helpful, some sound dodgy to me. Given the problems that there have been around CFS, I'd prefer to have some accountability for past failings before trying to come up with new ways of 'caring' for patients.

    I'm really doubtful that the current NHS is going to be able to do anything which will do more good than harm for patients (unless we stumble upon some medical breakthrough in the future).
    Valentijn likes this.
  16. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Is exercise intolerance is a diagnostic symptom ? What does 'exercise intollerance' mean ? Is M.E/CFS a neurological illness ? Is there just one single aetiology in play ? Is everyone with M.E/CFS fixed at a single level of capacity ?

    I didn't write 'rehabilitate' - the term I used was 'rehabilitive' - that is pursing a course that may restore/improve function. At present we have no definitive aetiolgy (in spite of the WHO classification) and we clearly have massive range of capacities across the patient population, and as things stand the condition termed M.E or M.E/CFS or CFS or CFS/M.E appears heterogenous and therefore different treatment interventions are likely to be beneficial for some patients and not others.
    The 'many people/members/patients' proposition is meaningless - who, where, when ? Equally meaningless is the 25% proposition - who fits and who doesn't ? Why is 25% significant but not 19% or 31% ? Who says a quarter (even if that actually meant something) are ignored ? If it is the case that someone is too disabled to participate in a particular therapy it makes no sense to include those people in trials of that therapy - this doesn't mean the therapy is not of benefit to some of those people who are capable of participating - and the capacity to particiate doesn't negate a diagnosis of M.E or M.E/CFS or CFS or CFS/M.E. Whether the benefit of a therapay is significant enough to warrant standard service level provision is another issue, but starting out from a position that says "some of us are very ill, therefore no treatment must be considered unless it benefits the most ill" in a sort of 'one size fits all' approach makes no sense.

    IVI
  17. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Define 'harm' ! Many interventions involve negative effects, if a certain number of people are helped, then health service providers are going to be attracted to that intervention. A 'they shall not pass' approach is unlikely to be persuassive, and something rather more tactical is needed if M.E/CFS patients are to impact upon what is offered by the NHS. On the face of it the Frenchay model looks somewhat more patient friendly than anything that came out of PACE, it may therefore be a useful negotiating reference.

    IVI
  18. Valentijn

    Valentijn Activity Level: 3

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    PEM (exercise intolerance) is a diagnostic symptom for ME under non-Oxford criteria. As long as researchers are going to put ME patients and chronic fatigue patients into the same boat, they can damned well prove that that boat is suitable for all of us. And if they're ignoring PEM, they aren't doing that.

    I have no problem with CFS being an umbrella term, but as long as they're equating it to ME then they need to do it properly. And ME certainly has neurological symptoms, except to the BPS school and whoever they dupe into believing them.
    peggy-sue, Roy S, Min and 1 other person like this.
  19. Firestormm

    Firestormm Senior Member

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    Indeed. I was just skipping through the document on this thread. It could all be pants for all I know but this was relevant to your point, so figured I'd post:

    barbc56 and Dolphin like this.
  20. Min

    Min Senior Member

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    The severely affected have NO specialist at all treatment in this country - is there another illness this is true of?

    They are conveniently ignored by the Wessely school of psychiatry whose pet theories only fit those with the mildest vaguely defined fatigue.
    asleep, golden, pollycbr125 and 2 others like this.

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