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UK: Department Work & Pensions Assessors Training Guide to ME/CFS Published - 28 May 2014

Discussion in 'General ME/CFS News' started by Firestormm, Jun 4, 2014.

  1. Firestormm

    Firestormm Guest

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    Not very pleasant reading - at least in parts...
     
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  2. Esther12

    Esther12 Senior Member

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    Any bits you want to pull out for us?... Go on, don't make me read more of this stuff!
     
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  3. TigerLilea

    TigerLilea Senior Member

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    What a load of sh*t!!
     
    Bob likes this.
  4. Valentijn

    Valentijn Activity Level: 3

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  5. Firestormm

    Firestormm Guest

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  6. A.B.

    A.B. Senior Member

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    Funny how the only ones saying this are the same people who a) ignore research showing that it's a physical illness, and b) propose "mental" treatments.

    I read a good part of this guide and it comes across as somewhat incoherent, as if somebody had written a reasonable text that was then "sanitized" by a BPS model proponent.
     
    Last edited: Jun 4, 2014
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  7. Bob

    Bob

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    For anyone not familiar with UK politics, this is a training manual for the government's welfare benefit assessors issued by the Office of the Chief Medical Adviser within the Department of Work and Pensions (DWP). So everyone in the UK claiming sickness benefits will be affected by this.

    This document contains the most depressing and extreme load of nonsense that I've read about ME/CFS for quite a while. And that's saying something!

    Proponents of the (discredited) psychiatric model of ME/CFS have clearly written (or had a disproportionate influence on) this document, and the Office of the Chief Medical Adviser has clearly allowed itself to be hijacked by the psychiatric lobby. We know that this isn't a new scenario, but this is the opposite of progress. It's a throwback to the darkest days of ME/CFS when the psychiatric lobby wrote the DWP's literature.

    I'm really feeling annoyed about this. How the heck was this allowed to happen? I thought that some of our charities were working closely with the Chief Medical Adviser and had a good working relationship.


    I'm going to quote some choice extracts, but I'm probably repeating much of what Val quoted above...
    All of the following assertions are based on really weak, inconsistent, pathetic and/or discredited research:
    Note that 'avoidance strategies' would include universally employed adaptive symptom management techniques such as resting and pacing, and the management strategies that NICE recommends for ME/CFS, and the latest types of Graded Exercise Therapy which recommend reducing activity levels when symptoms increase.
    Note the UK's Department of Health officially considers ME/CFS to be neurological (G93.3), so this document isn't consistent with government policy:
     
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  8. Bob

    Bob

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    "...avoidance strategies have been associated with [...] psychosocial disturbance in CFS/ME 10,11."

    Really? That's news to me. Where do they get this stuff from?!? (Rhetorical question.)

    Their References:

    10 Ray C, Jeffries S, Weir WR: Coping and other predictors of outcome in chronic fatigue syndrome. J
    Psychosom Med 1997; 43:405-415;
    http://www.ncbi.nlm.nih.gov/pubmed/?term=Coping and other predictors of outcome in chronic fatigue syndrome.

    11 Antoni MH, Brickman A, Lutgendorf S, Klimas A, Imia-Fins A, Ironson G, Quillian R, Miguez MJ, van Riel
    F, Morgan R, Patarca R, Fletcher MA: Psychosocial correlates of illness burden in chronic fatigue syndrome,
    Clin Infect Dis 1994; 18:S73-S78
    http://www.ncbi.nlm.nih.gov/pubmed/?term=Psychosocial correlates of illness burden in chronic fatigue syndrome&report=abstract
     
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  9. Bob

    Bob

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    And yet NICE recommends an avoidance strategy:
     
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  10. Firestormm

    Firestormm Guest

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    APPG takes place tomorrow and this document is on the agenda. Statement from MEA tomorrow. The document was reviewed and published without charity approval... more to follow tomorrow and thereafter...
     
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  11. snowathlete

    snowathlete

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    [​IMG]

    Hope that didn't break any rules. Just the most energy efficient way of saying everything I had to say about this.
     
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  12. alex3619

    alex3619 Senior Member

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    Ummm ... that pile isn't big enough.
     
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  13. alex3619

    alex3619 Senior Member

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    This is from a questionnaire to be answered before completing the course. There is no right answer, its a bad question. UK patient groups, I think, prefer pacing. Pacing is NOT Adaptive Pacing. UK patient groups also typically do not support either GET or CBT.

    The closest answer would be false, but this would only serve to further confuse the situation.

    Other questions have similar flaws.
     
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  14. Valentijn

    Valentijn Activity Level: 3

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    I got the impression that they had no understanding of the material or studies that they were referring to. Basically just parroting summaries of info from a variety of sources, and coming to confused and contradictory conclusions.
     
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  15. Sean

    Sean Senior Member

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    That psychobabble propaganda sure has infiltrated to the very core of public debate & governance.

    How convenient.

    For some.

    :grumpy:
     
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  16. Firestormm

    Firestormm Guest

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  17. N.A.Wright

    N.A.Wright Guest

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    No one should expect balance from this document, the Patient Orgs have done their best to have a patient perspective included, but the role of the Orwellian named ‘decision maker’ is not one of impartial judge. The decision maker – it’s a generic term in the sense that the implied decision may take place within a number of benefit processes – is always going to be following Government defined policy and will therefore always side with the Government over the claimant where there is obvious divergence from the defined policy. Short of an overwhelming burden in favour of the claimant, presumption of refusal of benefit is implicit. The guidance for decision makers is about providing the decision maker with a background which supports their role – it’s not about giving a balanced view of the medical knowledge of an illness.

    Most decision makers (whatever their pay grade, job title etc) are never going to read this Guidance document – it’ll be used when a decision maker is faced with a claim where ME/CFS is the primary illness and the medical evidence (ATOS report) doesn’t allow outright refusal and the decision maker is forced to actually think through making a basis for refusal or allocation to different levels of benefit.

    As far as patients are concerned, the guidance will probably be most significant in the appeals process and anyone who doesn’t have the resources to fight their own corner needs to alert their welfare rights advisor to the existence of the document. I think we can expect to see it surfacing in Tribunals fairly quickly.
     
  18. surethom

    surethom

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    It's disgusting really NICE & the benefits you are too I'll to work but not I'll enough to pass stupid questing to get benefits.

    Everyone can see your ill your symptoms say you are ill BUT because all blood tests come back normal, obviously you are not ill.

    Will we ever get a blood test to show yes you have a problem! Personally I still think we have active viruses that cause up to be ill & still active viruses keeping us ill it's just No one has a test that can detect the viruses.
     
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  19. justy

    justy Senior Member

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    Actually nearly made me cry...

    I shouldn't read stuff like this - after reading about all the amazing things going on in research in Norway, The UK and The States on PR, after watching countless videos and presentations showing how M.E IS a biological process but with aetiology unknown, after visiting a well respected M.E clinician who KNOWS I am REALLY ill, it is shocking to read that this is what my country thinks of me.

    I feel like an alien who has just landed on a foreign planet.
     
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  20. Firestormm

    Firestormm Guest

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    Only to add that this document is intended for the assessors i.e. Atos Health Professionals at the medical assessment and presumably delivered as part of their 'resource-pack' and via training, although undoubtedly it will used by the actual DWP decision-maker when an actual decision as to entitlement is made or when problems arise with a claimant asking for a reconsideration or moving to appeal.

    I am also wondering as to the impact of this document on DLA/Personal Independent Payment, but that's another kettle of sardines...
     
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