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Peter White/Barts - comments on draft NICE guidelines - insight into their views

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Dec 15, 2009.

  1. Mark

    Mark Acting CEO

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    Thanks Orla, that was a fascinating read.

    The whole thing could do with a new edition though...

    Translation:

    With many, many patients, including more than half of people with gastroenterology and neurological problems, we haven't a clue what's going on. In fact we're of so little help to them that patients are turning away from us in droves, and getting angry with their doctors. Some of them even try treatments that haven't been proven by our wonderful modern scientific methods! We like to sneer at those treatments and suggest the patients are behaving strangely, even though by our own admission we have nothing to offer them ourselves apart from suggesting they might be imagining it and sending them to a shrink.


    Translation:

    Psychosomatic used to mean malingering and imaginary symptoms, and carried considerable social stigma. The Newspeak version is to say - if pressed - that psychosomatic now means that we don't know what's going on and there might be something physical going on as well, but since these people are a bit crazy anyway, we still send them to see a shrink. After all, every illness has an interaction with the patient's mental state, so we can do this any time we like. This does tend to put the whole thing into a confusing grey area, especially since we haven't got round to telling the general population that the word no longer means what it has meant for the last century or two, so the stigma remains. But this is a good thing, because this sort of behaviour can literally drive patients mad, and isolates them from their friends, family and society, so our theory works well as a self-fulfilling prophecy, keeping us in gravy for as long as we can get away with it.


    They could add a footnote as well:

    In 2009 this was all proven to be a load of hogwash when the physical explanation was found. At this point all the talk of unknown physical explanations and grey areas evaporated, and we tried hard to deny it, but the truth eventually came out, and when a huge army of previously-weakened nutters all got well again, people were so angry that many of us were scientifically discredited, publicly humiliated, and dragged through the courts. We tried to explain that we sincerely believed in what we were doing, that it had all just been an unfortunate mistake, and there were still people left with unexplained illnesses who were crying out for psychiatric treatments. But unfortunately, now that the boot was on the other foot, now they decided it was their turn not to listen to us.

    "Hmm," they said to us. "And how does that make you feel?"
    Cheshire likes this.
  2. Mark

    Mark Acting CEO

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    And parvofighter your response is superb, you brilliantly demonstrate how the way they've been forced back into a hybrid position, acknowledging some of the obvious evidence, has caused them to incriminate themselves! As you rightly say, let's get the party started!
  3. parvofighter

    parvofighter Senior Member

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    @Mark, your translations are chillingly accurate. Love'em! Wildly funny too - if it weren't about our lives. But then I'm finding black humor is a good coping skill - far better than CBT and GET, no?:D I especially liked this one:
    I was reminded of one of your earlier posts when you talked about self-doubt in the face of early, subtle symptoms. Something the psycholobby (another new word!) pounces on, and which feeds their gravy train. Here is what Dr Peterson had to say about this in a radio interview: http://www.youtube.com/user/luminescentfeeling#p/u/0/FFHf3kJByUs

    Interviewer: Patients (with ME/CFS) have often been ridiculed as to somehow they dont really have a disease. Why do people think that?

    Dr Peterson: The reason for that is the abnormalities of the immune system are initially very subtle and if a physician does just routine testing, CBCs, chemistry panels, urinalysis, things like that, youll find theyre normal. And it isnt until you look at the immune system that you realize theres substantial dysregulation of the immune system. So its very similar to asymptomatic carriers of HIV. They look just fine until time passes and their illness evolves and more symptoms are found. But I never felt this was predominantly a psychiatric disease or malingering. There was never any evidence to support that theory.
  4. Dolphin

    Dolphin Senior Member

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    I think you are being overly dramatic there, Mark.
  5. Dr. Yes

    Dr. Yes Shame on You

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    Hi guys

    Too fried right now to personally comment on this wonderful thread, but I thought you might find the following interesting, if you haven't read it already:

    "The Mental Health Movement: Persecution of Patients?
    A CONSIDERATION OF THE ROLE OF PROFESSOR SIMON WESSELY AND OTHER MEMBERS OF THE WESSELY SCHOOL IN THE PERCEPTION OF MYALGIC ENCEPHALOMYELITIS (ME) IN THE UK"

    This was presented to the House of Commons Select Health Committee by Malcolm Hooper, a professor of medicinal chemistry in the UK and a staunch advocate for ME and Gulf War Syndrome patients... it's quite a read, and sections of it could be what you were looking for, Mark..you can read it at:

    http://www.satori-5.co.uk/word_articles/me_cfs/prof_hooper_3.html

    I highly, highly recommend this paper to anyone with ME/CFS
    (though Hooper hates that term, and has been pushing along with others to eliminate the term CFS altogether; still, his main argument here is independent of his arguments over nomenclature)

    One quote that stood out to me is from a letter to the e-British Medical Journal from Angela Kennedy, Social Science Lecturer at the Open University:

    I suspect that psychiatry, if it is not careful, will eventually become most ridiculed over its adherence to one theme: that of somatization. Presently, sufferers of Myalgic Encephalitis (sic) (also called Chronic Fatigue Syndrome) are increasingly subject to medical negligence or even abuse because the huge body of international bio-medical evidence is ignored, especially in Britain, in favour of an unfortunately incomprehensible, incoherent and empirically inadequate theory.
    The categorization of an illness as being psychosomatic also means a further categorisation of an individual as deviant rather than ill, so that they are denied sympathy, support, and even benefits they are entitled to. Categorised as deviant, the ill then suffer increasing social exclusion and material inequalities.
    The main problem with somatization theories is that they cannot be either proven or disproven and therefore are not very scientific at all.
    In relation to ME/CFS at least, flawed, unsubstantiated theories have been uncritically adopted and treated as fact, even against the already substantial (and substantiated) body of bio-medical evidence which continues to grow."

    A collection of Hooper's articles are available at the Hummingbirds Foundation website here: http://www.hfme.org/whooper.htm

    Just scroll through the titles and I'm sure you'll find something you could use!

    There's a lecture by Hooper on YouTube discussing some of this, too.
  6. Mark

    Mark Acting CEO

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    It's possible I got a bit carried away Tom, but...do you live in the UK?

    I've re-read my own quote a couple of times, and my only real concern about what I said is that I may have been overly optimistic. That's just how I hope the book will be rewritten. Maybe it won't pan out; the forces ranged against us are very powerful of course.


    Dr Yes - Yes! I'll be reading that article in full tonight. Thanks ever so much everyone for the information on this thread and elsewhere in response to my questions, it is indeed just the sort of thing I've been looking for. I suspect my own views about how best to collate and present it all may mean I'm ultimately still going to have to put something together myself, to satisfy my ow requirements, but this article is definitely one of those that will be on my GP's and my MP's desks early in the new year...
  7. Dolphin

    Dolphin Senior Member

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    If that's what you hope will happen why are you saying things like:
    I could be reading you wrong but it seems to me you fear some people who could benefit from psychiatric treatments won't get them and so then it wouldn't be your hope that this happens. Otherwise I'm not sure why you said it.
  8. Mark

    Mark Acting CEO

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    That 'crying out for psychiatric treatments' was intended to be sarcastic - written from their point of view as they try to cling on, which is inevitably how it will pan out: assuming they lose a huge market of CFS people who test XMRV+ and hopefully get better, they'll be looking out for a new market. Lest there be any doubt: my experience and the UK experience in general has left me doubting the entire psychotherapeutic profession. Recent conversations with friends has confirmed that there's a lot of dislike of the likes of the Wessely school from within the psychology world as well, and some of them agree with me that Wessely et al are bringing them all into disrepute, so hopefully those people will soon stand up as well.
  9. Dolphin

    Dolphin Senior Member

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    We'll see - haven't seen much support in the past in the literature.

    Peter White OBE, Wessely and co could be described as the establishment. There are now hundreds of people around English whose job is based around the NICE guidelines for "CFS/ME". One can't even join the CNRCC/BACME unless one supports the NICE guidelines.
  10. Min

    Min Senior Member

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    Let's not forget that AfME and AYME are the only charities that support the NICE guidelines and the PACE and FINE trials.

    All other UK M.E. charities condemn them.
  11. Dolphin

    Dolphin Senior Member

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    I certainly hadn't forgotten that. Not sure if you were referring to my post but Mark was talking about the psychology world.
  12. Mark

    Mark Acting CEO

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    Or perhaps more hopefully "the current favourites of the establishment in this area"? A lot of those people you refer to could be usefully redirected into other areas for which a shortfall in resources has been identified (all those that don't advocate voodoo theories of retraining "inappropriate illness beliefs" etc. can potentially be usefully retained)

    CBT clearly continues to be in vogue for now, and perceived as highly effective; there was a recent announcement of a big rollout of CBT treatment for depression and mental illness - where I'm more open to evidence that it may be VERY effective for many people. It seems clear that certain CBT approaches currently have a stranglehold on CFS theory and practice, and the proponents of those approaches are influential, co-ordinated and politically well-connected, but such things can change...all it requires is the recognition that there has been a certain flawed belief which may have allegedly had extremely harmful consequences, and the whole thing now requires investigation should it be proved to have been false.

    I think one can say that whether or not this particular infectious agent proves to be the sole or primary retroviral root cause, the weight of existing evidence and the implications demonstrated by contemplating what it would mean if another unknown retroviral agent or agents proved to be the cause, are enough in themselves to call for a change of direction in both research and clinical practice.

    I'd be very interested in people's assessment of all the existing UK ME charities, orgs and sites, and which are most/least likely to take a robust stance and support such a "What If...?" campaign? Or would they all tend to say "Hold on, let's wait and see...". When I get round to it, I mean to investigate that in more depth, but if anyone has any impressions to share that'd be really helpful, I'd respect your recommendations. So far, from what I've seen, I respect the work of ME Agenda, and I think I'm looking for similar angles.

    I'm thinking of starting a thread about campaigning on this sort of thing in the UK based on thoughts prompted by this discussion and elsewhere, thanks for that guys.

    But to return to the subject title of this thread: how about collecting up links and resources re the subject title, gathering up all the links in this thread and editing the list to add more? Same thing could be done on multiple threads on this and similar themes. Masses of work but a quality library could be created!!! :). Lots of work though. :eek: Do we have a librarian in the house? (Sorry if I'm forgetting a brilliant recommended index, I have tons of answers to these questions to go through and organise and I haven't had time to check through all the great things people have recommended here and elsewhere - I will get to it all soon though, thanks everyone!)
  13. Mithriel

    Mithriel Senior Member

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    MEActionUK have lots of documents gathered over the years. They also have all the essays written by Margaret Williams which are fully referenced so they have links that can be followed to the actual papers.

    http://www.meactionuk.org.uk/index.html

    Mithriel
  14. Dolphin

    Dolphin Senior Member

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    I'm not exactly sure what you are saying but think you are suggesting that because I think White and Wessely are part of the Establishment or won't be easy to budge, that I don't think effort should be put into getting rid of their influence? And that I don't think we know enough to know whether they are wrong? That would be a complete misreading and misrepresentation of what I was saying and do.

    When I said "we'll see" what I was saying was I was not taking for granted the psychology world's support in the short and medium term.
    And similarly there are plenty of UK ME charities, orgs and sites that are not happy with the current situation and drawing attention to the problems and fighting it in their own ways.

    You were the person who seemed to bring up the issue that the psychiatrists could claim they were treated unfairly in the future if we got the upperhand. I'm not particularly interested in them. Peter White is telling the world that exercise programs are safe, never warning people that there are risks. If he gets into trouble with the General Medical Council (GMC) or whatever in the future, I won't be particularly sorry for him.
  15. Dolphin

    Dolphin Senior Member

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    Orla is summarising the psychiatric view of the illness with lots of references in: http://forums.aboutmecfs.org/showthread.php?t=1843
  16. Mark

    Mark Acting CEO

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    Yes I think you misunderstand me: I wasn't intending to imply that at all, I don't believe that, and had no intention of disagreeing you with my post. I think I just added some thoughts from my own perspective (which you it seems agree with) to your own statements, which I agree with, so there should be no problem there, and we can agree to agree? I didn'at all t intend to suggest that you didn't support those efforts yourself.

    I don't recall the context of your words "we'll see", and didn't have any intention of referring to you when I used them. I didn't have in mind which position you took, I was just stating my own, regarding a different point to the one you raised. I'm genuinely interested to find out the views of people on this thread, including yours tomk, I know a lot of members know a lot about the UK ME charities' views on this matter but perhaps it was an inappropriate question to ask, if so, apologies for straying from the main topic - a separate thread? As I've said I'm going to look into it myself so no worries.

    The 'dramatic' reference in the 'footnote' to psychiatrists claiming unfair treatment in an imagined future was intended as a creative imagining of one possible future, perhaps a little satirical, raising questions about how events might progress, I'm sorry you didn't like it. I agree with you about Peter White, as, it seems, about near enough everything, so I'm sorry if you've misunderstood my meaning. I don't think there's a big difference between what we're saying, if indeed there's any.
  17. Mark

    Mark Acting CEO

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  18. Dolphin

    Dolphin Senior Member

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    Thanks Mark -looks like there may have been misunderstandings perhaps; but when you said the last bit of this which uses the word "all" it does seem a bit insulting to all those who have been campaigning for years.

    But you are relatively new to the scene and maybe don't know how long people have been fighting on this issue, how many groups opposed the NICE guidelines, etc.

    (I added the bold/underlining)

  19. Mark

    Mark Acting CEO

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    I didn't intend anyone any offence Tom, sorry if my clumsy wording misled. Regarding your bolded sections of my text:

    It seems clear that certain CBT approaches currently have a stranglehold on CFS theory and practice,

    ...refers primarily to the psychotherapeutic approach in the UK as I understand it, especially as propounded by Wessely, White and others as described here and elsewhere.

    When talking about the second issue you highlighted, I had moved on to a separate and specific point by the end, regarding the preparation for and early campaigning on a 'regardless of outcome' basis around XMRV, representing XMRV- (CFS) people also. I genuinely want to know about all the good advocacy work that's being done, and I'm sure there are lots of different approaches and lots of good work being done. I wasn't questioning that, I was asking about it, I'm sorry if I gave you the wrong impression.

    The 'all' was perhaps misleading, but I was comparing two extreme positions, not asserting that either was held by everyone of course. Perhaps I have a tendency to get a bit carried away by my emotions in some of these matters, and my language is too easily misunderstood; you are right that my inexperience of the scene is frankly admitted, hence my honest questions.
  20. Dolphin

    Dolphin Senior Member

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    No problem, Mark.

    BTW, I have read some of your other messages on other threads over the last 24 hours and am a bit more at ease with where you are coming from, so I will try to ease off on some of the challenging. TC, Tom

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