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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. Dolphin

    Dolphin Senior Member

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    These posts give an idea where Peter White is coming from.

    I know I have posted them in other threads before but one thread got rather heated and it was suggested they should be discussed in their own thread.

    If you have sensitivies to chemicals, make sure to look at part (viii) including the references.

    It's a message I sent to Co-Cure around 2 years ago.
    --------
  2. CJB

    CJB Senior Member

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    Sounds like they're totally convinced they're dealing with lazy slackers.

    I wonder if they're so sure that they'd be willing to take blood transfused from a PWC.
  3. Mithriel

    Mithriel Senior Member

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    I was seen by an occupational therapist in 1990. She recommended all sorts of things for me which have been a great help.

    The one that made the most difference to my life was my wheelchair. I had never considered such a thing as, like most people, I thought you only got one if you were completely unable to walk whereas I could manage a few steps

    She said that if the choice was between staying indoors all the time or having a wheelchair and a life what was I waiting for?

    It has been a godsend. I can't believe the life people will be condemned to live if wheelchairs are disallowed.

    Everyone I know who is a wheelchair user - and I know many as I was able to go to a centre for the disabled once I had my chair - has found that the wheelchair is a simple tool. It enables you to go where your legs won't take you. People use cars for exactly the same reasons.

    I find it hypocritical that they demand a warning about purely hypothetical dangers (dependence and damage to expectation of recovery) neither of which have been tested, while refusing to give a warning about GET when surveys of patients consistently give a figure of about 35% being made worse.

    Wheelchairs are not the same as walking. The world is designed for people to walk through so the minute I can get out my chair I will :) It is not an easy option.

    Mithriel

    Dr Anne MacIntyre of the ME Association offered Simon Wessely a pint of her blood. Not taken up.....
  4. Mark

    Mark Acting CEO

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    Tom, yes I had spotted this before, in your previous post, but like the rest of this response from Bart's it's so extraordinary it seemed worth another look. I've been diagnosed with MCS, as has a friend of mine, both of us privately (and we both consider ourselves CFS also but I suppose we just preferred the term MCS as a different explanation for the same thing; CFS, in terms of who has defined it, seemed to be tied to a (spurious) psychological explanation). No GP I've spoken to has ever heard of MCS, and when asked to investigate, they don't believe in it. So it's quite amazing to me to see it pop up from nowhere in the Bart's response, and even more remarkable to see them psychologising that one away as well! I never heard that theory before, but I suppose...why should I be surprised? But if they claim to know how to remedy the condition through a 'graded exposure programme', then it's a shame they never mentioned this to any of my doctors who don't believe MCS even exists. No, hold on, now that I think of it...no it's not a shame! Perhaps all those sceptical docs were really just sheltering me from the psychologists! :D

    I'm looking forward to finding more solid information on this thread. Can people point me at the best places that collate all this sort of evidence? I've seen plenty of odds and ends before, but most of them seem to be too polemical, or too scattered and poorly presented, to be useful things to point my friends at. Unless I'm mistaken, and something already exists, I get the impression that there's a need to gather this sort of information together in a public-facing website, and to present the case well.

    Final point, slightly at a tangent, about the psychological explanations. As I've been digging away, trying to get to the bottom of what's wrong with the psychological approach, it seems to me that the fundamental difficulty is this: the theory of a "conditioned response" or of CFS as a psychological illness is not provable, nor falsifiable. According to Popper, a theory is not scientific unless it can be proved false. If somebody claims my illness is all in my mind, there's no way I can prove it isn't (other than by finding the physical cause). Now, fine, that physical cause (like XMRV) would be falsification of the psych theory, once it's discovered. But after the XMRV+ have been diagnosed, they will still take everybody who doesn't have XMRV and try to psychologise their illness. Anybody with an illness of unknown cause is subject to this theory. It basically says: anything we don't know about, is down to the patient's psychology. There will always be something left for the psychologists to play with, there's no way for anyone to disprove it.

    Is there any fruitful line of attack there? Informed people I've spoken to say that the psychology world really doesn't carry very much weight or power within the scientific community as a whole; CFS just happens to be a little backwater they've managed to get their teeth into. So I've been wondering whether a rigorous philosophical debunking of the underlying theory, which ought to be possible, might find receptive ears in the wider scientific world, where they have to do things like repeatable experiments, provide physical evidence, that sort of thing...

    And one more thing I'd like to see as part of that: what analysis have they done to investigate the effect of psychologising somebody with a real physical illness? Do they have papers examining what long-term effect it has on a sick person to suggest - to them and their family and friends and society - that they're just imagining it? XMRV will give them plenty of opportunity to study the damage they've caused...oh but hold on, don't encourage them, that'd keep them in work for decades! :eek:
    rosie26 and PhoenixDown like this.
  5. Dolphin

    Dolphin Senior Member

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    You and/or others might be interested in:
    "Is Psychology a Science?"
    http://www.arachnoid.com/psychology/index.html - it includes psychiatry/psychological medicine to some extent in what it covers.

    Might reply to some of your other points again.
  6. Dolphin

    Dolphin Senior Member

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    Thanks for that, Mithriel. I think you make some good points.

    One point to remember is that all that most if not the vast majority of the ME patients were ever going to be offered with the draft guidelines was a manual wheelchair. The rules for electric wheelchairs are quite strict.

    With a manual wheelchair with M.E., you are not that independent. You are unlikely to have a personal assistant/similar. Pushing yourself takes energy - depending on the situation, walking the distance might take less energy than pushing yourself in a manual wheelchair.

    Your house and life is unlikely to be set up as being designed for being in a wheelchair all the time e.g. inside your house.

    Also like you say, people can use cars as energy saving devices.

    Also with regard to wheelchairs, if people are doing an exercise programme or CBT based on graded exercise/activity, as Peter White/Barts would like people to do (and the NICE guidelines recommended), patients are supposed to avoid "boom and bust". A wheelchair can help people do this.

    For example, if somebody is in hospital, you can either walk to see them (most likely overdoing it for that day) or use a wheelchair to help you.

    Or on a more basic level, somebody might be able to go shopping without overdoing it if they have a wheelchair. Or do something with their kids or partner which, if they didn't do it using a wheelchair, would mean they overdid it.
  7. gracenote

    gracenote All shall be well . . .

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    thanks for asking the questions Mark

    Mark, thank you. You are articulating my questions very well. I hope you keep asking them.

    FYI: I have a BA in Psychology and am working on my MA in Humanistic and Transpersonal Psychology. And if I could, I would get a PhD in Somatic Psychology. But . . .

    I'm not a defender of what is being described. Not at all. I think it's a travesty of the highest order.

    Some, maybe increasingly more, psychologist and psychiatrists do, also. (And I hope we can provide these references.) They're the ones we want on our side. When it is finally clear (and Nanacy Klimas says that it's been clear for a very long time) that we are suffering from a "real" disease, we may want some psychological help from the best psychology has to offer — or not. I hope I haven't said too much! :D :D :D
  8. Dolphin

    Dolphin Senior Member

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    Not exactly sure what you are looking for:
    Personally, I think there is a lot of good information written by Dr. Ellen M. Goudsmit C.Psychol. FBPsS
    Health Psychologist (HPC Registered)

    http://freespace.virgin.net/david.axford/me/me.htm
    http://freespace.virgin.net/david.axford/melist.htm

    Perhaps you would find this of interest:
    http://www.mecfs.org.au/?q=node/33

    Guidelines for Psychiatrists
    "Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for
    Psychiatrists", Eleanor Stein (2005).
  9. Dolphin

    Dolphin Senior Member

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    Personally I have no problem with this. My main "issue" is with CBT based on GET, especially when it is being presented as all patients need to recover.
  10. Dolphin

    Dolphin Senior Member

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    It is awkward to read the submissions because one then has to go and search for what was being replied to.

    Back in August/Sept 2007, I spent a little while doing this so I'll save people any trouble and post some more comments in this thread. I don't claim they will all be as interesting as the 10 above:

    Some points from Barts/PDW on NICE document (there may appear to be repetition but the information is often repeated in the files twice - "NICE" and "Full" guidelines). I'll put this in a quote box to make it stand out more.

  11. Dolphin

    Dolphin Senior Member

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    Barts/Peter White: Recovery should only take months

  12. Dolphin

    Dolphin Senior Member

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    Barts/Peter White objecting to mention of relaxation techniques

    Barts/Peter White objecting to mention of relaxation techniques:

  13. Dolphin

    Dolphin Senior Member

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    Barts/Peter White: want GET suggested for severe; etc

    (not so exciting perhaps)

    Barts/Peter White: want GET suggested for severe; etc

  14. Dolphin

    Dolphin Senior Member

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    Barts/PDW don't want a separate section for the severely affected patients

    Barts/PDW don't want a separate section for the severely affected patients

  15. Dolphin

    Dolphin Senior Member

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    Barts/PDW seem desperate to say CBT/other behavioural treatments (i.e. GET) can be curative. This is one of the reasons I feel we can be sure that Peter White wrote the submission - notice his name amongst the names of Dutch researchers - nobody else from the Barts service was involved in the Dutch study (which had a very dubious definition for full recovery).

  16. Dolphin

    Dolphin Senior Member

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    PDW/Barts: desperately trying to get their way (=GET & CBT) with the severe PWMEs

    PDW/Barts: desperately trying to get their way (=GET & CBT) with the severe PWMEs

  17. Dolphin

    Dolphin Senior Member

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    (Junk?) Don't expect gentleness from Barts in physical examinations (?)

    This is in the severe ME section.

  18. Dolphin

    Dolphin Senior Member

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    Think that's it.

    As I say, I don't claim the ones after the first set of 10 are as interesting.

    But reading them together showed me the pattern of Peter White's thoughts.
  19. Dolphin

    Dolphin Senior Member

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    Yes, reading the points at the time, it made me think it was very like the advice one might give to very overweight people (who didn't have a biological reason for being overweight).
  20. Mark

    Mark Acting CEO

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    Thanks for all the links and info Tom. It's all relevant and on the topics I'm interested in, but I needed to be clearer about what I'm looking for. I realise it perhaps goes beyond the brief of this thread, but again I don't know where else to put it other than in response to our conversation. I don't have much ever so time to go into it all now, but I'll attempt a quick overview...

    I'm looking for a site I can point all my friends and contacts and family to, that takes a robust position on (in particular but not exclusively) the role of psychology in the history of CFS, and presents some simple top-line arguments (like 'CFS has been under-researched', 'CFS has been psychologised' etc) and lets people drill down to the evidence. A bunch of juicy quotes to inspire sympathy and outrage, some simple facts to back it all up. A mixture of verifiable and factual information, together with a really solid critique of what's wrong.

    Everything I've seen so far has been in-depth articles and publications, which only dedicated campaigners and people with an intellectual interest are ever going to read. I'm looking for something with integrity, passion, and a bit of class, that can present the case to the 'man in the street'.

    So in that context, the Barts info you presented would end up being cut down to one or two very short quotes, in the context of a wider case. The detail could be there to drill down to, but never overwhelming until people get down to that level - staying as simple as possible at the top level: just the headlines.

    Another thing that would be really powerful would be a big long series of loads and loads of CFSers speaking for 10-30s each, summing up their experience. One person saying "CFS destroyed my life" sounds like exaggeration to many. Hundreds of people all saying the same thing starts to look more like a believable pattern.

    Finally, I think there's a tough balance to be struck but I feel there's a difficulty presenting hard-hitting material without going over the top. The best example I can think of is the luminescent-feeling videos. I feel hesitant about critiquing them because I myself love them to bits, as I'm sure many here do. But I'd also love to see an edited version, in a more sober tone but with the same punch. To put it as simply as possible: there's a classic 2-parter which has some references along the lines of 'nazi psychologists' in it. I'd dearly love to send the rest of those youtubes to all my friends, but I know for sure that the references to nazis are going to turn off everyone I know so much that the whole thing will do more harm than good. I think I could convert the lot of them with these videos if only the nazi references weren't in there - and yes, I get the analogy, I don't think it's even terribly unreasonable when you lay it all out and know the history, but it's just not saleable. I'm worried people will think I want to neuter the whole thing, but I really think if some of the material I've seen could just have the more extreme bits removed, and be presented in a more matter-of-fact way, the facts would speak for themselves. Basically what I'm saying is: the case itself is strong enough as it is: there's no need to shout about it, it's more powerful if stated more quietly. Let people feel the outrage for themselves.

    Hope that's clear; I'm outta here now for a couple of days at least :mad: but I'll check back as soon as I can.
    Leopardtail and PhoenixDown like this.

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