Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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The UK Government’s three-pronged strategy for “CFS/ME”

Discussion in 'General ME/CFS News' started by Daisymay, Feb 22, 2015.

  1. Daisymay

    Daisymay Senior Member

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    The UK Government’s three-pronged strategy for “CFS/ME”

    Margaret Williams

    http://www.meactionuk.org.uk/The-UK-Governments-three-pronged-strategy-for-CFSME.htm


    Quote from the article:

    "The PACE trial is but one arm of a three-pronged strategy and thus needs to be viewed in context. The results appeared to be a foregone conclusion in favour of CBT/GET because of the “integrated plan” of the New Labour Government to roll out CBT and GET across the nation for those with ME/CFS (Department of Health, 2004, Statement of Information released via the Welsh Assembly Disclosure Log 2296).

    The other two prongs of the three-armed strategy are the NICE Clinical Guideline 53 published in August 2007 and the national “Fatigue” Clinics that cost taxpayers £8.5 million to deliver interventions shown to be ineffective in ME/CFS (CBT) and to have made at least 50% of those who have undertaken it significantly worse (GET).

    The “integrated plan” was designed to ensure compliance, so it was never in doubt that the PACE Trial results would conform to it (as indeed is the case, albeit after numerous departures from clinical research probity including multiple breaches of national and international codes of ethics).

    Without knowledge of what actually occurred in the production of (i) the MRC Research Advisory Group’s Report on “CFS/ME Research Strategy”, (ii) the NICE Clinical Guideline on “CFS/ME” (CG53) and (iii) what occurred in the Judicial Review that sought to challenge that Guideline, it is not possible to get a proper grasp of the enormity of the PACE trial travesty."
     
    Last edited: Feb 23, 2015
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Is there someone pursuing this from a freedom of Information strategy as was done in the US (with regard to the MRC RAG report)?

    The way you have clearly laid out the 'plan' it sounds like a situation where a class action suit could be launched against some part of the government.

    The problem always being one of the energy needed to vigorously pursue that.
     
    PennyIA likes this.
  3. worldbackwards

    worldbackwards Senior Member

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    I read the judgement from the judicial review at the time and, as I recall, the people bringing the action forward left themselves wide open by taking on NICE on ideological grounds, which are always tricky to pin the BPS types down on ('Oh, but it is a physical illness, in so many ways' etc), rather than the rather more sensible course of action , which would have been to nail them on precisely the issue Williams talks about, the foregone conclusion over CBT/GET being included in the guidelines.

    Given that, aside from the two patient reps, the entire group was composed of CBT/GET enthusiasts and in no way represented the array of opinions across the research community on the efficacy of the "treatments", they were pretty much let off of the hook - this was a much more clear cut example of bias than getting into ideological muddy waters. Had they made the treatments the issue, we might have actually managed to put a stop to some of this.

    The review of the research was undoubtably biased, giving undue weight to UK research, but some pertinent questions that should have put NICE under pressure weren't really asked because a less than pragmatic line was taken.

    That's my twopennoth anyway.
     
    Last edited: Feb 22, 2015
    GracieJ and Aurator like this.
  4. *GG*

    *GG* senior member

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    Concord, NH
    What is a RAG report?

    GG
     
  5. Daisymay

    Daisymay Senior Member

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    RAG was the Medical Research Council's Research Advisory Group which published a report on “CFS/ME Research Strategy” in December 2002.

    The CFS/ME NICE clinical guidelines were published in 2007.

    NICE, the National Institute for Health and Care Excellence is a UK government body, which produces "evidence based guidance and advice for health, public health and social care practitioners".

    And the Judicial Review to challenge the NICE CFS/ME guidelines was in 2009.
     
    Wildcat likes this.
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Like I keep trying to get into folk's heads:
    the UK's system is stitched up top to bottom, it will railroad, deny, and screw folk over like you wouldn't believe, all while pretending to be "nice" about it.

    That's what you get after centuries of inbred elitism and the "old school tie" mob still pulling the strings.
    Look what's happened with the Chilcot Inquiry and child abuse crap if you don't believe me, same thing.
    You CANNOT beat them using their rigged system!
     
  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hey, I got the message!
     
    SilverbladeTE likes this.
  8. Roy S

    Roy S former DC ME/CFS lobbyist

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    Illinois, USA
    ... it is not so much evidence-based policy-making as policy-based evidence-making



    context:
    22nd June 2005, Laurie Taylor presented a programme called "Thinking Allowed" on the UK’s Radio 4. He ended with an explosion: "….the last word on methodology, and the importance of valid and reliable empirical work, must go to the anonymous political insider who recently characterised the present Government’s (ie. New Labour’s) approach to research in the following manner: it is not, he said, so much evidence-based policy-making as policy-based evidence-making". Never was there a truer word, as the ME community knew to its considerable cost: it had been saying so for many years but had been systematically denigrated and ignored.
     
    Last edited: Feb 23, 2015
    Indigophoton, Wildcat, SOC and 5 others like this.
  9. lastgasp

    lastgasp Guest

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    Given the representation obstructed the case by not submitting most of the evidence, how you know this, and even if you do, how is it in effect any different from showing evidence of abnormalities with exercise physiology which would very much call into question the appropriateness of CBT/GET as well as the entire psychosocial paradigm? It sounds like they provided (or attempted to) a wide range of evidence relevent to the bias of the NICE crowd, yet these biases were dismissed.

    Surely the real issue is that MOST OF THE EVIDENCE WAS NOT PRESENTED by their representation (what the NICE lawyers saught because they feared its power), thus drastically weakening the plaintiffs' case.

    Is this part of the victim blaming prevalent among some pwMEs - the fact they failed must have been their fault, despite the actual facts of what happened?! Bizarre. I think we can do without attacking the JR people -- they had an almost insurmountable task and were unlucky at the last hurdle. The real blame lies with the crazy English legal system and their legal team - there was going to be some attempt at legal recourse for their failure to follow the correct process but I haven't heard anything more.

    It is utterly bizarre and wrong to attack the plaintiffs for actually putting in the hard work, getting all the evidence and having the guts to do something that none of the charities did. By all means have a try yourself if you can do better -- I think we'd all welcome that.
     
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  10. worldbackwards

    worldbackwards Senior Member

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    @lastgasp , If I refer to 'the people bringing forward the action', I include their representation in that. Indeed, anyone going into a court is at the mercy of them. Given that I haven't mounted a personal attack on the PWME, it seems a tad excessive to talk of 'victim blaming'.

    Do I know the ins and outs of the whole thing? No, like I said, I read the judgement. And it was embarrassing, largely because the elephant in the room, how 20 odd people with exactly the same views on treatment, which was not a negotiable concept, rather than ideology, that was, ended up sat round the table without any challenge from other medical professionals, was never really broached.

    Does it surprise me that God was on the side of the big battalions? Not really. NICE we're always going to have tricks up their sleeve. I just thought that, with the truth on their side, our people should have put a better case. I make no comment on who's fault that was, but it was someone's.

    As for starting my own case, I was barely able to read the judgement, or do much else, at the time. I remain largely housebound. I struggle to fill in a benefits form. So, no, legal action isn't much on my mind at this time.
     
    Last edited: Feb 25, 2015
  11. msf

    msf Senior Member

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    The UK government's three-pronged approach to ME.

    1 Obfuscate
    2. Delay
    3. Ignore
     
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  12. Dolphin

    Dolphin Senior Member

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    This is a useful record of the shenanigans that have gone on in the past in the UK and how the establishment had dealt with "CFS/ME".
     
    Sean and Wildcat like this.

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