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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Continuing Correspondence, Countess of Mar and Prof White and Prof Sir S Wessely

Discussion in 'General ME/CFS News' started by Daisymay, Jan 26, 2013.

  1. Dolphin

    Dolphin Senior Member

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    Further information on what a person's position is, is often very useful. What people can say in a few words or sentences can be interpreted in various ways.

    For example, you said:

    with regard to:
    I think, although am not sure, what you are saying is what White is saying is reasonable. If that is what you are saying, I have to disagree - I don't find his view reasonable. His view, which can be seen more clearly from other things, is that continuing symptoms and physical functioning problems are due to deconditioning and can be reversed with CBT and GET. So he accepts maladaptive beliefs and behaviours may not be why you got the infection at the start*, but I don't think we should get excited by this - I think this is just playing with words - it's a jesuitical response.
    The problems with his views can be seen in the comments on the draft NICE guidelines where he wants to deny supports when people are ill (and similarly reports from people who have had insurance claims turned down by him because they haven't done CBT or GET yet).

    In summary, if Simon Wessely and Peter White are giving jesuitical responses which could be misinterpreted, given their influence, it is useful to examine them and assess them against other things they have said/are saying.

    * and that's only to an extent - he has also talks about predisposing factors in other research
     
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  2. Stukindawski

    Stukindawski

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    I think the one thing maybe I struggle with, comes back to the diagnosis or there-lackof.

    CFS in several classifications stands for little more than prolonged, medically unexplained fatigue. PD White himself has signed a statement in opposition to the Canadian Concensus Criteria that critiqued its ability to define a 'different' condition. Which is a pretty strange thing to say. The semantics are subtle yet complicated between condition, illness and disease. The condition would seem to describe an exact state of all health, an illness is little more than to say, something about a person is 'ill' (which is why I'm starting to take less comfort from a doctor saying 'it's a real illness' for instance), disease would be a distinct, diagnosable entity, which CFS is not - it is a lack of diagnosis.

    Unless CFS is confirmed as a homogenous, psychiatric condition (and frankly, how could you confirm it anyway), the idea that Wessely, PD White, Sharpe, Crawley, Chalder and anyone else can suggest that GET is a useful treatment, given the massive reports of patient harm, is frankly disturbing.

    Take all the motive and conspiracy out of it, and just take the facts on the ground.

    They ostensibly (hi law folk) support a treatment of dubious efficacy, that patients are reporting harm from (with little data collection following), for a group of fatigued undiagnosed patients with 'some' overlapping symptoms. This, is all based on a startling paucity of objective evidence and exaggerated subjective evidence.

    The idea, that I'm supposed to believe that this isn't patently obvious to an academic of reasonable intelligence that spends a considered amount of time looking into ME/CFS, seems absurd.

    Of course, and in the interests of balance, this failure extends to non-psychiatric research to some degree. For instance how does one distinguish research on the mechanisms of fatigue from research on the aetiological mechanism(s) of a patient classified with CFS. When is it actually right to call research ME/CFS research, ME research, or CFS research and when should it simple by called fatigue or even 'illness' research.

    I find that on some level, the basket patients find themselves is as naturally occurring as it is intentional. We are inconvenient patients with an invisible illness. To that end, some in the medical profession shoo us away and some take us in with open arms (and yes, this applies to Team BPS - they have no problem working with us after all). To the desperate, even something inconvenient is an opportunity.

    What this tells me is that, the importance of actual patients being able to understand what exactly is in *their* interest is paramount, there are a lot of vultures. I hasten to point out, that Team BPS are just one.

    We need our Barbs, I know that much.
     
  3. Koan

    Koan Be the change.

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    There were many criticisms made in this thread about quotes that the poster admitted they had not checked. To me, this kind of musing by people who state plainly that they have not given the document under discussion a careful read is unsupportable as an intelligent and mindful exercise.

    I do not share your skepticism of Sir Simon. Having witnessed the consequences of his school of thought on my UK friends for decades, there is little to be skeptical about. I also don't share your embrace of the "poor us" "meme". I don't think I've ever written "poor us" before. I would not trade places with an ALS patient or a Huntington's patient or... or... or... There are specific challenges to having ME but I know I could have it a lot worse. However, I also know that I am not a bedridden UK patient at the mercy of a system run by SW. I might change my tune if I were. Maybe you are. If so, I bow to your greater understanding of that situation. As a Canadian, I am only tangentially affected by his influence.

    Lady Mar was not "attacking the opponent". Lady Mar was asking hard questions that need unambiguous answers and challenging the ambiguity she was given with events from history. If, out of that comprehensive challenge, one or two quotes were maybe a little less than entirely specific, or a study below someone's threshold of interest because it had only 100 participants... ok, make that the focus of your attention and your comments if you like but I don't get it.

    She did! Did you read what she wrote? She did focus on the fallacies of the PACE trial.

    I don't get not supporting such a sterling effort. I have read Lady Mar's contributions, in full, a couple of times, and judge them sterling. Yes, sterling is only .925 silver but I can't, for the life of me, understand focusing on .075 to the exclusion of .925.

    This is not an idle exercise. This exercise has real world consequences regarding treatment and disability and dignity especially for the most severely affected. If you think it could have been more perfect then please contact meactionuk, highlight your concerns, and offer them your services. That's what I would consider doing "something that will get us somewhere."
     
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  4. Dolphin

    Dolphin Senior Member

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    I think it should also be pointed out that there are different people working on this problem in different ways.
    In the research section of PR: http://forums.phoenixrising.me/index.php?forums/latest-me-cfs-research.15/ , you will find people going through the details of the PACE Trial (and other papers). Some have written critiques, written letters to the Lancet/comments on the second McCrone paper, made videos/animations, etc. There are different people doing different things. People interested in the minutiae of studies are welcome in the research section.
     
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  5. barbc56

    barbc56 Senior Member

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    It's not only on this thread. I did read the document under discussion thoroughly.

    .
    By skepticism I meant that I would apply the same critical techniques to White as I did to Mar.

    I guess that is a matter of perception. I did find her letter antagonistic.

    You can't ignore the fact that she was defending her position using quotes taken out of context as well as citing a study that may not be all that valid. I think if anyone who is perceived not on our side, the same criticisms would be lobbed at that person..

    In this specific letter(s) I do think he was being reasonable. I am not talking about other writings of White, Wessely, et. al. at other times. I am only speaking of this particular instance.

    Thank you.;)

    Barb




    .
     
  6. barbc56

    barbc56 Senior Member

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    Thank you, Dolphin. While I realize there is a forum for this, and it would probably be helpful to reread the critiques, the study is relevant to this discussion as this was one of the points Mar was making.
    Barb
     
  7. user9876

    user9876 Senior Member

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    As scientists they have a duty to be exact and avoid misinterpretation. What I cann't understand is why won't be clear and exact. Patients already have a very low opinion of them and their inexactness doesn't help with that relationship. So why? I think they believe what they are saying, but maybe deep down they know they are wrong and are trying to hedge their bets. That explanation doesn't seem reasonable to me either. My only other thought is that they get a lot of support from the scientific community who I think have never bothered to read or understand what they are saying - so maybe it is because they feel they will lose influance if people knew what they were saying. Although I find that quite unconvincing a well.

    I get the feeling particularly about Peter White that he believes science should only be done by a select group of academics and other people should not be allowed to question results or even have access to data which has not been interpreted and masked by an approved scientist. Hence perhaps they find speaking in this type of code ok since those in the know have the appropriate context to interpret it.

    I expect Barb will say we shouldn't be questioning their motives but looking at the science. But I think it is important to understand the motives behind the lack of exactness in their work. If you look at their papers as science you have to wonder how they get published.

    I think that the Countess of Mar made a tactical error in replying with a long letter saying you said this. Rather I think it would have been better to say I don't understand the point you are making. From what you say I can see these possible hypothesis which is the one you are backing. Sometimes playing the fool and asking for a better explanation pays off.
     
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  8. Dolphin

    Dolphin Senior Member

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    Yes, I agree the PACE Trial can be discussed here. My point was it isn't the case that no one is looking into the details of the study, if that was your point.

    Another point about this is that with lots of individuals, people are going to have their own ways of responding to points. Some people may disagree with them using numbers, while others may prefer to argue more with quotes. But I agree with you that quotes need to be accurate and not be used in a misleading way.
     
  9. Dolphin

    Dolphin Senior Member

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    Sorry, barbc56, don't know enough about your views to know how fair I'm being going on about it but I find it difficult to deal with people defending Peter White, or appearing to, so here goes:

    Well, perhaps I should have used different words and repeated the words you used to describe it:

    with regard to:
    This isn't what I want to hear. What I want to hear is that abnormal illness beliefs and behaviours can't fully explain the ongoing problems people have. What I want to hear is that ME/CFS is a complex condition where most people, who have been ill for more than a couple of years*, won't be able to gradually increase their activity or exercise up to normal levels and lead a full life with no ongoing symptoms and so it's not people's fault if they are having ongoing lower functioning and symptoms. My guess is this is true for most patients who have been ill.

    What he is doing is using words in an unusual way. I think it is a good reflection of his and SW's views to say they "..have promoted an hypothesis that ME/CFS is due to an abnormal illness beliefs" if one uses "due to" in terms of continuing symptoms and disability. This is clear from the PACE Trial manuals, for example.

    So, perhaps there is value in them explaining their views a bit more i.e. they accept there can be infections at the start, but it doesn't qualify as what I want to hear.

    Also, it's based on a weird theory: when do the symptoms of the infection suddenly stop being symptoms of the infection and start being symptoms due to abnormal illness behaviours? 2 weeks? 6 weeks? 12 weeks?

    ----
    I just skimmed back on your other posts. I agree that tactics can play a part i.e. thinking about the best approach to advocacy/activism/similar is useful. But to me, accepting the above quote as some sort of change in their position would be a tactical error.

    * some people seem to get over infections like EBV in the first few years.
     
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  10. biophile

    biophile Places I'd rather be.

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    Ambiguity and semantics seems to be playing a large role here. The phrase "ME/CFS is due to an abnormal illness beliefs" could be a simplistic implication of either causation or perpetuation. White (and/or Wessely) or W&W have chosen to interpret it as causation and then proceeded with criticizing Mar for (allegedly) conflating causation with perpetuation, and for (allegedly) claiming that W&W view CFS as initially *caused* by "abnormal illness beliefs" when they do not. W&W give a highly sanitized version of their views, which makes Mar out to be an idiot for not accepting something as plainly obvious as beliefs can affect coping when faced with illness.

    There is no universally accepted cause for CFS. It is diagnosed after 6 months of symptoms, and an ordinary infection (the type known to trigger CFS) should not usually last 6 months, and W&W do not believe CFS is an ongoing infection, and have never stated that CFS is always triggered by an infection either. Their model has multiple possible triggers, which also include lifestyle, stress, and personality.

    Once symptoms develop, then maintenance factors take over, although it is not clear at what point the trigger ends and maintenance begins. These perpetuating factors supposedly include over- or under-activity, fears about worsening symptoms after activity, belief in physical causes, symptom focusing, personality, depression, stress, sleep habits, conflicting information, etc. Wessely is also infamous for his use of "abnormal illness beliefs" in his earlier papers.

    From the PACE Trial CBT manual for therapists: "According to this model, the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviours (avoidance)."

    A model which W&W helped to develop. The controversy has always essentially been about the heavy emphasis placed on cognitive and behavioural factors. The exact degree of emphasis is unclear, but what is clear is that the emphasis is strong (even primary) and that these factors are presented as top-down or more important than others. The model describes what can be seen as a delayed or failed convalescence from temporary illness due to these factors.

    Obviously CBT and GET do not address the original (now supposedly non-existent) infection, but the "particular barriers to their recovery" which W&W claim CBT/GET address, does include what Wessely has previously labeled "abnormal illness beliefs". As WillowJ indicates, the cumulation of their work and that of their colleagues does paint a general picture. The illness itself is often described as "functional", "medically unexplained", "no disease found", etc. All the important factors presented are cognitive and behavioural. The "physiology" presented is framed as mainly the biological consequences of these factors, and also used to counter claims they believe CFS is "all in the mind".

    The cognitive behavioural model of CFS is not just about "beliefs about an illness determine the ways people cope with it". It goes beyond that, and is presented as having major explanatory power for patients' symptoms/disability, and potentially curative with recovery as a goal which should take mere months despite years of illness.

    I wish the Countess of Mar would have started with the questioning of W&W's positions as "CFS is predominately perpetuated by cognitive and behavioural factors", rather than the one about abnormal illness beliefs, as it would have given W&W less wiggle room and may have resulted in an actual answer. I see nothing new from W&W which rejects that statement. Wait, IIRC she did quote the PACE manual but W&W did not respond to that anyway. Perhaps they enjoy ambiguity because it allows room to move when under fire or when the wind changes direction?

    The "misinterpretation" and attribution of motives also seems to go both ways, W&W have implied that criticism of CBT/GET and the PACE Trial was all about attempts to unfairly discredit the results because of the stigma of mental illness and misguided mind-body dualism.
     
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  11. barbc56

    barbc56 Senior Member

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    The problem with attributing motives to others is that they're often based on opinion and bias. Nothing wrong with stating your opinion but it needs to be made clear that this is what you are doing.

    You are assuming I am saying we shouldn't be questioning motives and therein lies the problem. Guessing what motives are in play for someone may be true, false or somewhere in between. But we don't always know.
    IMHO!!

    Time for bed.


    And just a thought maybe White and company are also attributing motives to patients? Food for thought.
     
  12. alex3619

    alex3619 Senior Member

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    I agree with you Barb, pointing out where something is wrong is on solid ground, ascribing motives means you have to make stuff up ... it could easily be wrong.

    The letter declining further debate was expected. What surprised me is that this was not the first letter they sent.
     
  13. Koan

    Koan Be the change.

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    excellent post. Totally agree... even with the inability to decipher motives.

    I am not in agreement with you here. I think she did what she did and it was a good effort. I'm guessing she had very specific goals in mind and didn't really want to be coy about anything. Not that you are suggesting coyness... I am cognitively fatigued and can't think of a better way to put it.

    I think there is plenty of room for someone else to engage them the way you suggest. They seem to be feeling very communicative of late. I can't know this for sure, of course, but I would not be surprised if they each had quite sizable egos and may, indeed, like to hear/read themselves opine. Why not look for an opportunity to do so. Truly, I think they just love the attention.
     
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  14. alex3619

    alex3619 Senior Member

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    Keeping attention of the media, public, government and psychiatric community may have nothing to do with egos. Its about how psychogenic illness is promoted. Repeat it enough times, cross reference the repetition, and it looks like it might have substance to anyone not investigating closely. This has worked in the past, it may be why they continue doing it - the lessons have been learned, but they learned the wrong lessons.
     
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  15. ukxmrv

    ukxmrv Senior Member

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    I'm wondering Barb, what it is about the PACE trial that you think people should be spending their energy on.

    If it is your opinion that energy should not be spent on attacks or correspondence, what is it that you would like to spend your energy on (as one of the people commenting here) that you are not doing?
     
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  16. Dolphin

    Dolphin Senior Member

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    By the way, I don't think one needs to believe PDW or SW are motivated by money (say) to believe they are wrong and shouldn't be trusted. Me personally, I have not been that convinced by the attempts to say SW* is influenced by insurance company money. But whatever motivates him, he is very committed to the CBT model of the illness. I've been hearing people say for 10+ years he's changed, but CBT and GET and related modalities are still all he seems to want to have on the table.

    * PDW has stronger connections that I can see to insurance companies. Views can be reinforced by money, or similarly one can be less likely to change them. Who knows whether this plays a part in his case. Again, my distrust of him is due to a good knowledge of his consistent position over the years, rather than insurance company connections. Other people who may not have heard or read as much about what he has said may think some of us are being unfair.
     
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  17. barbc56

    barbc56 Senior Member

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    I simply do not have the energy to reply right now nor am I sure I need to. It should be evident from my prior posts. Perhaps we could discuss this in the advocacy forum?
    Barb
     
  18. ukxmrv

    ukxmrv Senior Member

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    Maybe you would like to discuss it there Barb with others and then get started. As far as I am aware you haven't done any actual advocacy on any of the issues raised here or on PACE?

    There are ME patients in the UK and abroad who have been working on the PACE trial since it was first announced years ago.

    In the same way if people here want to go on discussing the issues raised in the topic heading they are perfectly entitled to do so in the way that they wish. It's not clear why you feel the need to try and direct people's energy away from what they want to discuss.
     
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  19. Valentijn

    Valentijn Activity Level: 3

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    First, I disagree that they are scientists. They are doctors and researchers, but they generally fail to meet the standards of good science. The approach they use is a persuasive/argumentative one, where they start with a conclusion ("CBT is the cure") and work backward from there to create the support to "prove" their conclusion. This tactic generally seems to extend to the methods used in their studies.

    They won't be clear and exact because the primary audience of this correspondence was ME patients, and they believe that if we know what they think, we will not engage with them for CBT, hence not be cured. So they dodge questions and create false impressions for our own good:
    And for barb, here's some Wessely quotes regarding illness beliefs and abnormal/maladaptive behavior:
     
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  20. Roy S

    Roy S former DC ME/CFS lobbyist

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    Good point!
     
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