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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. Firestormm

    Firestormm Guest

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    Totally agree Stu. I think our problem in the UK is the way in which it has been sold. The way in which ME has been 'marketed' if you like to patients as well as the general public.

    The comments I posted above from Lord Alerdice would have lent a far better comprehension to the NICE Guideline. Indeed I hope that following the recovery paper, NICE will consider tempering their use of CBT and GET although they may well choose not to.

    I think from memory they say something like 'the best available treatments' or the best treatments backed by research or something like that.

    But if this were tempered and made more realistic in terms such as little is understood, these therapies may help patients learn to better manage etc. as per your comment it would be an improvement.

    Of course therapists and psychiatrists and indeed medical doctors don't like to reveal the limitations of any prescribed treatment :)

    I do commend NICE though for at least referring to these therapies as 'management strategies'. I think that is realistic.
  2. Firestormm

    Firestormm Guest

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    Yes. Although when 'in therapy' as it were I have never personally been told of any 'evidence base'. I 'suck it and see' and take from it what I can. I think - have said repeatedly - that with PACE they bit of more than they could chew. Peggy-sue had it right when she said that these things are more about the relationship between patient and therapist than anything else and the establishment of mutual respect.

    I would only add that it is important to take into account the extent to which a patient takes on board what is being said and applies it (or is capable of applying it - and this may indeed be a personal judgement and experience - nothing wrong with that).

    We do have some responsibility as patients for our health but I don't think a comparison can be made to taking drugs and sticking to a therapy regimen. Do you? Maybe it can. I mean if you are prescribed a drug, take it as prescribed, find it doesn't work or indeed produces some side effect or other - you return to the doctor to discuss, right? Same thing with a therapist. If we struggle to keep to the mutually agreed programme then the therapist should (reasonably) be expected to work with the patient to better tailor the e.g. goal-setting.This is as per NICE and well within the responsibilities of any decent therapist.

    I think I'll stop there. Probably not making sense now :(
  3. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    this is the UK's "system" in action, what did folk expect?
    it's like flypaper: covered in nasty poisonous bugs and shit, bogs down and prevents any movement! :p
    Wildcat likes this.
  4. Valentijn

    Valentijn Activity Level: 3

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    Sorry, but I disagree completely. GET is widely reported by patients to be harmful, sometimes extremely so. CBT is based on convincing us we aren't sick. These are not management strategies, and they are highly inappropriate for ME/CFS patients.

    It's not a matter of "GET and CBT are okay if they're not seen as the cure" and/or are added to other (real) symptoms management. They are never appropriate for ME/CFS. And if someone is at the point where they have recovered via other means, they would no longer be treating ME/CFS but rather some theoretical psychosomatic illness no one has ever shown evidence of.

    This thread is about PACE. In PACE, CBT was about false illness beliefs. If you are referring to some other from of CBT as potentially being useful in ME/CFS you need to clarify that.
    Bob, taniaaust1, peggy-sue and 3 others like this.
  5. WillowJ

    WillowJ Senior Member

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    the point of the debate is that the ostensible evidence base for CBT and GET is hopelessly, fundamentally, fatally flawed. It is a house of cards. There are a lot of publications, and they are chock full of "correlation = causation", nonsequiters, perversions of the English language where 'normal' and 'recovered' are used to refer to people who remain seriously ill and debilitated, and other such perversions of logic, statistics, and science. Not to mention ethics.

    You can say SF-36 physical function subscale score of 60 = 'back to normal' and somewhere between 60 and 75 (depending on other factors) means 'full recovery' all day, every day, as much as you like, and you can even publish it in the Lancet and other peer-review journals and cite it in other publications and promote it in the media...

    but this doesn't make it true.

    It is still false.

    Every day, all the day. Even at night, when no one can see. ;)
    Bob, taniaaust1, peggy-sue and 5 others like this.
  6. WillowJ

    WillowJ Senior Member

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    this isn't to say that supportive psychiatric care/ help with coping skills/ etc. for such patients as want it isn't helpful, just the same as in other chronic, lifechanging diseases. However that wasn't the point of the PACE trial (this isn't what was offered those patients, and this isn't what the authors are promoting).

    Also regarding psychiatric-classified disease; clearly that is important disease. However this is neither here nor there. What the PACE trial is promoting is not treating ME/CFS like other psychiatric-classified disease (Alzheimer's, for instance, to use one the trial authors like to cite in this category), but like a non-disease behavioural problem (may have started with an actual [incidental] disease but is not now considered one, by those authors) ETA which gives rise to real somatic (bodily) symptoms. /edit

    Bringing up our imaginary objection to the former issue (because that is not the issue; it is treating it as a behavioural problem that is the issue...., and we don't have an issue with psychiatric-classified disease; rather I, and many others I know in the community, support patients with psychiatric-classified disease because, among other important reasons, we know they got a short stick, too) is a RED HERRING and, when done by the trial authors and the House of Lords and the media, an AD HOMINEM attack.
    Bob, peggy-sue, Valentijn and 4 others like this.
  7. Firestormm

    Firestormm Guest

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    Was this the previous paper from White about Cytokines written with Pinching, Dolphin? http://www.cfids-cab.org/cfs-inform/Cytokines/white.etal05.txt Thanks.
  8. Firestormm

    Firestormm Guest

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    Was this expected? Thanks.

    I think, Val, that you had at one time posted a paper from Wessely or White perhaps that from memory suggested people should be 'encouraged' to undergo CBT and GET in relation to benefits. Although my memory is for crap so it could have been insurance.

    Whatever, I have certainly seen it said among patients that they have felt pressured into doing these therapies and that if they didn't then it would affect their benefits. This then is a good confirmation of the situation.

    Also it goes some way to reaffirm the position stated in NICE that patients do not have to undertake these therapies - period. If they do not wish to. If you don't 'like' the thought of these two things, and don't want to try them, or whatever the reason, you don't have to.

    £5 million and all this debate during and after - and I can't see the results having settled many concerns that have been expressed knowledgeably along the way. I also can't see patients 'flocking' to queue for treatment encouraged solely by the promise of this level of recovery. What amounts to 'talking therapy' and 'exercise' will still be seen - rightly in my view - as having no intrinsic value against something for which a drug is required or is incurable. So it's still pants in my view. I am talking about PACE here Val :)

    Will these results encourage more funding for 'treatment centres'? That's something worth considering. I am still reading through the transcript - I jumped to the end and need to go back - but Baroness Meacher said about PACE demonstrating a need for at least the 13 sessions and intense follow-up and support on the ground in order to try and maximise the chance patients outside of Trial could benefit.

    I honestly do not believe that if the PACE manuals were integrated verbatim into treatment centres they would achieve anything like even the 22% 'recovery' we have been discussing on the recovery thread. CBT and GET are implemented in clinic - in my experience - independently and adaptively and not in accord with any manual. So the results could be better or they could be worse. And delivery will depend on the qualities of the therapist, the number and quality of sessions and therefore the money available in each health authority and the priority afforded ME by CCGs.

    For the purposes of Trial I understand they needed a model against which to measure. A standard approach afforded to each patient enrolled. This is where I think a Trial differs markedly from clinical practice where on-the-ground professionals employ their own expertise and tailor any programme with a more flexible approach. At least they should be aiming to do so as per NICE. We also have no quantitative analysis of 'activity management' or support afforded to severe patients. I suspect - again from experience - that therapists delivering local provisions employ a mix of these and other approaches in their interaction with patients.

    NICE contains elements pertaining to research on the ground and I'd like to see how many patients are accepting of these treatments and are shown to benefit from them - in whatever way. I think to have more than six sessions of therapy is above average and many people are treated in groups and not individually. It would of great benefit to the community to see how effect clinical delivery actually is with a local study or two perhaps.

    I'd also like to know how many people decide not to accept any of these approaches and to see why they might do so in a similar local paper. And compare to how patients without any intervention - and with only drug management - manage. Let's get some data and assess this on the ground. Take patient surveys to the next phase.
    barbc56 likes this.
  9. Valentijn

    Valentijn Activity Level: 3

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    Here they are:
    Other researchers might have more extreme things to say on the matter, but generally in it's an area where the BPSers are very very careful. Partly because a lot of ME patients don't recover, and partly because denying benefits would contradict the severity of the disease and their own corresponding self-importance of curers of it. It also may reflect a change in the times, as withholding benefits until patients comply might now seen more barbaric than it would have 15-20 years ago.

    The bigger problem is in the hardcore opposition to physiological investigations and treatments, especially during CBT.
    taniaaust1 and Wildcat like this.
  10. user9876

    user9876 Senior Member

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    Here you raise an issue which relates to their safety result. I think there is a conceptual trick being played by just using the labels CBT and GET. What they tested was specific protocols lets call then CBTP and GETP they did not test CBT and GET. Now if in clinical practice each therapist implements their own version these are different treatments.

    If we think of it in terms of a drugs trial say some patients were given drug C and some drug G and got certain results however the intended dosing was only published in the trial protocol and no information was given as to the actual doses given. When we get tlo clinical practice then with little information and doctors having little time they will not check the protocol and just make up a dose that sounds reasonable. Some would then overdose patients causing harm. Ok so this scenario sounds silly but that is what is happening with GET and CBT.

    The safety information was given for one particular protocol GETP which had a particular schedule for increasing exercise. They published the intended schedule but they don't seem to have even monitored how much the therapists pushed patients to get the deteriation and safety results they got. Looking at the 6mwt it seems that patients won't have been pushed a great deal. So then it is hard to transfer the actual protocol that they labelled as safe into a clinical environment particularly if you were trying to scale up treatment moving it out of the centres involved in the study and away from those therapists who had involvement.
  11. user9876

    user9876 Senior Member

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    I thought I had seen recent proposals around forced treatment for benefits I think it was being sold as good for drug users.
    Valentijn likes this.
  12. Firestormm

    Firestormm Guest

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    Thanks Val. That was what I was thinking of.

    This is where I was heading, User. Therapists will apply - in my view - their own experience of 'the condition' based on their interaction with patients and/or education provided about 'the condition' and/or patient group. Or they will switch from CBT for another patient group and apply it similarly or exactly to our patient group.

    We are back to the 'quality' of the practitioner. And the 'ethos' of the particular ME Service. These ARE markedly different around the country - based on reported patient experiences alone and my generalisation of them.

    I'd like to explore this far more than perhaps we have done (or that I am aware of) on the forum. The way in which Services are structured and run and the staff employed, funding, 'ethos' etc. are all important.

    Therapy is not is this respect like a drug - as you say - especially when considering 'safety'. Patients in therapy are expected/encouraged to take what is learned and apply it when the therapist is not around.

    A therapist could promote something, some programme, that proves too much for an individual, but that individual, could attempt to 'push on through'. I've been there and done that as I'm sure we all have.

    To what extent an assessment of 'safety' can be made in general across a Service I don't know. But I'd like to perhaps come back to this later.

    Am engaged in wrapping 'pass the parcel' for the rugrats and party preparation. You'd think it wasn't my birthday!! :)
  13. peggy-sue

    peggy-sue

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    My brother-in-law works for the MoD.
    He was forced to take antidepressants when he wasn't depressed, and to undergo CBT and GET because his work demanded that he comply with "therapy". He only escaped therapy by finding and paying for a private consultant whose rank "outranked" the MoD's psychiatrist.

    He was very lucky they did choose to recognise the consultant.
    Sean and Dolphin like this.
  14. biophile

    biophile Places I'd rather be.

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    http://www.tandfonline.com/doi/full/10.1080/13642530903230459
  15. biophile

    biophile Places I'd rather be.

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    Even with the "inappropriate control groups (e.g. intention to treat waiting list groups" mentioned above ...

    http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD001027.pub2/full
  16. Sasha

    Sasha Fine, thank you

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    Happy birthday! :balloons::balloons::balloons:
  17. In Vitro Infidelium

    In Vitro Infidelium Guest

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    This was something initiated back in the Blair years. I didn't follow the process in detail but the Welfare Reform Act 2012 http://www.legislation.gov.uk/ukpga/2012/5/contents actually repealed all specific reference on the face of the Act. However, somewher in the provision for 'Regulations' (the stuff Government can do without going back to Parliament) there are new powers allowing the SoS to empower administrators to impose sanctions http://www.guardian.co.uk/society/2012/may/22/jobseekers-alcohol-drug-addiction-benefits-cut , this will not involve specific refrence to substance abuse but will rely on the Orwellian language of the Government's drug strategy: http://www.homeoffice.gov.uk/public.../drug-strategy/drug-strategy-2010?view=Binary

    Our aim is to increase the number of drug and alcohol dependent benefit claimants who successfully engage with treatment and rehabilitation services and ultimately find employment, which is a key contributor to a sustained recovery. Whilst it is not possible to create large numbers of jobs specifically for people in recovery, we must equip them with the skills to enable them to
    compete for the jobs that are available.
    The first step is to ensure that the benefit system supports engagement with recovery services. We will offer claimants who are dependent on drugs or alcohol a choice between rigorous enforcement of the normal conditions and sanctions where they are not engaged in structured recovery activity, or appropriately tailored conditionality for those that are. Over the longer term, we
    will explore building appropriate incentives into the universal credit system to encourage and reward treatment take-up.

    I suppose if one were moderately paranoid, the fact of the principle of 'compliance' in a psychiatric context of substance abuse could be thought a Trojan Horse for extension to other 'psychologically' mediated impairments to employment. I think however we are long way from that and the drug/alcohol/problem families/vile underclass target will need to be fully exercised before ill health is more generally targetted. For now ESA claimants, even in the WPG are unlikely to be subject to sanctions similar to those applying to JSA.

    IVI
  18. Dolphin

    Dolphin Senior Member

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    It wasn't published in 2010 so it wasn't that study. However, I believe it's a replication of it.

    Here's a letter from 2008 where mentions the research that is coming out this year (presumably) and says there were five studies on the topic but doesn't mention his own one (published many years before!):
  19. user9876

    user9876 Senior Member

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    The question becomes who gets the right to decide on sanctions. If it is up to the discression of a local office with no policy advice it could turn out very badly for people who anoy someone in the Jobcentre+
  20. Dolphin

    Dolphin Senior Member

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    It is a useful quote. But it doesn't mean people can't get pressurised by insurance companies.
    Here's a very good example of this involving a doctor many might recognise! http://forums.moneysavingexpert.com/showthread.php?t=2356683
    Dr. CS has pointed out this week about this practice among insurance claims.
    So it's not true to say that one is necessarily completely free not to have to do it.

    Similarly with children.

    I've also heard people say to maintain a relationship with a GP, they have undergone CBT or GET.
    Valentijn likes this.

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