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ABC radio - Comparison of treatments for CFS - PACE trial

Discussion in 'General ME/CFS News' started by Daisymay, Apr 16, 2011.

  1. Angela Kennedy

    Angela Kennedy *****

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    biophile said:

    Yes. I think this is what we should be aiming for. My particular wish-list is also retractions and apologies regarding the misleading impressions they gave that CBT/GET is 'safe' for people with signs and symptoms of neurological, cardiovascular and other serious dysfunction as found in the ME population. I do believe there is a demonstrable case to be answered there.
  2. Dolphin

    Dolphin Senior Member

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    http://freespace.virgin.net/david.axford/lanbias1.htm
  3. debergerac

    debergerac

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    After listening to the radio show and reading the Lancet article, I have to say...I'm not that mad. The truth is, victims of most serious illnesses would benefit from CBT or GET if properly administered. One of the interesting things in the Lancet article covering the study, was the researchers call for more study into the mechanisms of change. That some patients showed some improvement is great. But why? And why so few?

    This seems like good news for our side. What makes me crazy are typists disguised as journalists who simply regurgitate the press release into their computers and send it off to be published. As I discovered when I followed a few of these links: http://curingfatigueandtiredness.com/arc/fatigue-|-chronic-fatigue-031611.php

    I left comments at a couple, but when I discovered there were 416 links...em, well, I been in migraine mode all week. So I'm calling for back-up.

    The ideas that people can benefit from CBT or GET, and that the illness is organic are not mutually exclusive. Most of us probably do engage in some forms CBT and GET just to get through the day. I think Pacing and believe CBT. In other words, I try not to overdo on a daily basis, but I believe that I will get better. GET is what happens automatically as I start to feel better; it's how I know I am feeling better. One day after having showered, washed dishes and done some stretching exercises; I'll look up and think 'hey! doin' better...yayyy.' And that's also about the time the wheels come off the bus. 'Cause then I push to hard rather than banking that extra energy to heal my body, so...crash.

    I'm not mad about the study. I think it's incomplete. I hope they continue to follow up with the improved and recovered. Because I do believe they'll discover what we already know; that the illness tends toward relapsing/remitting. I am angry with the UK's 'old boy' approach to treating this illness which defy the science. Neither of these approaches (the way conducted in the study, a kind of holistic approach) suggest a psychiatric diagnosis. And hundreds of thousands of patients suffer. I'm also angry with lazy journalism.

    And, prepare to throw stones. I don't think the Lancet guy (biased jackass though he is "[or whether CFS is] organic as patients believe". Um, what?)was all wrong about reactions from patient groups and individual patients. We tend to be militant, even overly so. But this is how change gets made, this is what makes the medical establishment sit up and take notice. Remember AIDS? Remember Breast Cancer? Your average GP doesn't care about the science. At least not until a patient group makes him scared not to care. Picketing? Hundreds of angry emails? Who needs that kind of grief? Better to listen up next time a patient comes in with a paper prattling on about some study.
  4. Angela Kennedy

    Angela Kennedy *****

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    Well- thanks for that. I take it you don't have any problems with the PACE trial then? Great. The reasons people ARE complaining about the PACE trial are substantive and quite complex, and maybe out of your league of knowledge about this issue. If you don't know what those issues are, you might want to read up on the information available here and elsewhere. If you need any help with accessing that information, let people know- they'll be very helpful.
  5. Esther12

    Esther12 Senior Member

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    I don't have any problem with CBT or GET in general - but the way these treatments are commonly applied to CFS is a problem.

    When people here complain about CBT, that's meant to be taken for short hand for 'the sort of CBT which presumes disability in CFS is primarily the results of avoidance, fear, misinterpreting bodily signals, etc' - it shouldn't be taken as criticism for all forms of CBT. Equally, there are a wide range of medical conditions which cause chronic fatigue for which a form of graded exercise can be helpful, and I don't think anyone here would insist that different approaches to regulating activity could would not be of any benefit to different patients - but it's usually important to know the cause of the problem first, in order to design an appropriate exercise programme and one which will not make things worse, for CFS very often, and explicitly in Pace, GET is provided on the presumption that disability in CFS is primarily caused by deconditioning - when the evidence we have indicates that this is not the case.

    And the big problem I have with Pace is the way they over-sold their results, and misled patients, doctors and the public about the impact these treatments can have for CFS patients. I think that this sort of dishonesty is a really bad thing, and that the anger of patients was presented as entirely unreasonable in this programme indicates a lazy prejudice and failure to look closely at the evidence. I think that Pace could be good for patients... but only if our concerns are given a fair hearing, and people come to realise just how dishonest researchers like Chalder and White have been.
  6. debergerac

    debergerac

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    You're welcome Angela. There's no need to interpret me, my meaning was clear and I wrote in English. Given the givens, the interview was as even-handed as one could expect. As to the complexity of the issues; having a divergent point of view doesn't necessarily denote a lack of understanding. Fifteen years with this illness has given me some idea of the issues involved. But you're right, I have yet to read all 700 pages of the trial, I expect I'll get to it around the same time I finish Les Miserables.

    You have an enormous fight in the UK. ME/CFS patients are forced to endure an incredible amount of pointless suffering; all because some big psych names have staked out this illness as a cottage industry for themselves. Do I get how dangerous the conclusions are? Yes. My experience with post-exertion malaise suggests that it is possible (for whatever reason) to function at a slightly higher level for an extended period of time if forced to; only to experience a corollary collapse at the end of it. I wonder how many patients; because of one on one support with their doctors, the strong desire to feel better, peer pressure, whatever; were able to perform at a higher level after treatment, and how many will collapse. All of them? None? Half?

    I'm in the US and have had some fairly good doctors. There's less a feeling in the air that I'm just crazy. Most of my docs have believed that ME/CFS is a physical illness. But I'm also a Northern Californian. The mind/body connection, alternative therapies, holistic medicine are things I believe in very strongly. I, like everyone else, want an answer. Do I believe the PACE trial to be the answer? No. But at this stage, I'll take part of an answer.

    The part of the PACE trial that sounds good to me, is the researchers calling for more study. As for the CBT/GET debate; doing what you can and keeping a positive attitude is healthy for everyone, sick or not. Do the therapies work as administered in this study? I'll believe it when I see it.
    And I ain't seen it yet.
  7. Bob

    Bob

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    A few comments about the transcript...

    I think that the good news is that we are obviously getting seriously under their skin.
    The bad news is that they seem to be dismissing everything we have to say about the subject, and labelling solid scientific rebuttals as a hysterical orchestrated campaign by a fringe group of patients.


    "Norman Swan: Good morning and welcome to the Health Report. This week, an enormous row over chronic fatigue syndrome, it's about a paper in The Lancet published last month has generated an almost unprecedented reaction from some people claiming to represent patients with the condition. Some see it as a clash between ideology and science over fundamental differences in how chronic fatigue syndrome is conceived in people's minds as an incurable hopeless condition to which one adapts as best one can, or as a condition from which at least some recovery is possible for some people."

    Interesting how the terms 'ideology' and 'science' can be totally reversed, depending on where you sit in the debate. He seems to be referring to 'ideology' as everything patients have to say, and referring to 'science' as everything the psychologists have to say. I believe that most, if not all, patients would say the complete opposite.

    We can't be absolutely certain if he is saying that the opinion that ME is an "incurable condition" is an 'ideology', and not 'science' (although it looks like he is). If he is saying that ME is curable, then where is his evidence for this?


    "Michael Sharpe:
    ...
    What this trial wasn't able to answer is how much better are these treatments, and really not having very much treatment at all?"


    The above section has been incorrectly transcribed. What he actually said is as follows...

    "Michael Sharpe:
    ...
    What this trial isn't able to answer is how much better are these treatments than really not having much treatment at all."


    This is correct. I'm glad that he is admitting a major flaw of both the methodology of the trial and the conclusions that the authors made. This does somewhat fly in the face of the accusations that these people are making against the patient community who have been pointing out the weaknesses of the trial.

    It is exactly this point that is one of the major problems with the PACE Trial. And yet the authors were still able to conclude that GET and CBT are "moderately effective" treatments, even though they say "what this trial isn't able to answer is how much better are these treatments than really not having much treatment at all."

    "Richard Horton: We were delighted to get this trial, it was eagerly awaited. It was a remarkable study because the investigators stepped back and were willing to do an experiment comparing conventional treatments for chronic fatigue, cognitive behavioural therapy for example against a treatment which was very much endorsed by parts of the patient community but very sceptically received by the more scientific community and that was the adaptive pacing therapy. So they were really stepping back and comparing two philosophies, not just two treatments, two philosophies of what chronic fatigue syndrome was."

    Horton doesn't seem to have grasped the fact that pacing is not the same as APT, which is an invented prescriptive 'therapy', created solely for the purposes of the trial, and which bares little resemblance to the intuitive form of pacing that patients use.


    "Richard Horton: Yeah, I mean adaptive pacing therapy essentially believes that chronic fatigue is an organic disease which is not reversible by changes in behaviour. Whereas cognitive behaviour therapy obviously believes that chronic fatigue is entirely reversible and these two philosophies are kind of facing off against one another in the patient community and what these scientists were trying to do is to say well, let's see, which one is right."

    How can an organic disease, as defined by WHO, possibly be expected to be 'reversible' by changes in behaviour?


    "Richard Horton: Well we have been deluged with dozens of letters raising serious objections to the conduct and interpretation of the study. Most recently a 43 page diatribe calling for the paper to be retracted based upon the fact that it is entirely invalid and unethical."

    So they were "Deluged with dozens of letter"?
    Out of interest, I wonder exactly how many dozens he means... 24 letters, 36 letters...? Or does he actually mean hundreds?


    "Richard Horton: Pretty much every aspect of the study you can think of has been impugned. First of all the population is biased, it's dealing with a predominately young, healthy population whereas the chronic fatigue syndrome, ME, in a population our critics claim contains a substantial number of people who are bed ridden. Given the fact that treatments are being offered which do regard chronic fatigue as reversible then that somehow undermines the view that ME is a neurological condition. There is this feeling that ME being an organic disease in the views of some patients that means that any view that contradicts that and offers a treatment against that particular perspective must therefore by definition be unethical. So this study is we are told breaching the Declaration of Helsinki."

    ME is defined as a neurological condition by WHO, not just by "some patients".
    You'd think he'd get the basics right in a public broadcast.


    "Norman Swan: Of course the researchers are not saying it's not organic, they are just saying that you can do something about it."

    Horton had just said the opposite of this!
    Horton had just said: "Given the fact that treatments are being offered which do regard chronic fatigue as reversible..."
    The treatments in the PACE trial that he refers to (GET & CBT) (which both treat ME as reversible in the trial), are purely psychological therapies which treat ME as a disease which is 'perpetuated' (i.e. caused) by behaviour and thought processes.
    As far as I'm aware, no organic diseases are reversible by using psychological therapies.
    So the authors are, in fact, declaring that ME/CFS is not an organic disease by saying that psychological therapies successfully 'reverse' ME/CFS.


    "Richard Horton: The issue here which I still fail to understand is that nobody is claiming that chronic fatigue syndrome is an invented illness.
    It's taken just as seriously as any other condition."


    The PACE literature pretty much defines ME/CFS as a reversible psychiatric disorder, based on maladaptive illness behaviour or maladaptive coping processes.

    In the PACE Trial published paper, the GET protocol defines ME/CFS as a reversible condition that is "perpetuated by reversible physiological changes of deconditioning and avoidance of activity" (i.e. it suggests that physiological changes are caused by deconditioning due to avoidance of activity) (i.e. it implies that ME is caused or perpetuated by maladaptive behaviour)... And the CBT protocol defines ME/CFS as a reversible condition based on a "fear of engaging in activity" and a behavioural response of "avoidance of activity" which are "assumed to be responsible for perpetuation of the participants symptoms and disability" (i.e. it implies that ME is caused or perpetuated by maladaptive thought processes and behaviour.)

    Didn't Horton read the PACE Trial that he published?

    No other physical illness would be labelled with such abusive definitions.
    What are these definitions if they are not accusing patients of being responsible for their own illnesses?


    "Richard Horton: Not this kind of orchestrated response trying to undermine the credibility of the study from patient groups but also the credibility of the investigators and that's what I think is one of the other alarming aspects of this. This isn't a purely scientific debate; this is going to the heart of the integrity of the scientists who conducted this study."

    Correct.


    "Richard Horton: Indeed, and I think this is where one sees a real fracture in the patient community. One is seeing a very substantial number of patients very willing to engage in this study, desperate to get good evidence on which to base their future treatment but one sees a fairly small, but highly organised, very vocal and very damaging group of individuals who have I would say actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients."

    Not so. I think that every national patient organisation (except AYME) has criticised the PACE Trial publication and conclusions, including Action for ME.
    So this isn't the case of a small number of individuals. It's our entire community.


    "Norman Swan: And did Action for ME stay with you for the whole time in support?

    Michael Sharpe: Action for ME stayed with us for the whole time right through to the end of the trial."


    But Action for ME do not now seem to support the conclusions of the authors of the PACE trial, although AFME's statements to date have been rather weak.
  8. Bob

    Bob

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    I have only just realised how significant the cleverly constructed methodology and results of the PACE Trial are for the health insurance industry.

    The Lancet editor (in the radio program) and the authors of the PACE trial have lined up pacing (APT), which they have defined, for the purposes of the trial, as a 'therapy' which treats ME/CFS as an irreversible and incurable organic disease, against GET and CBT which they have defined as therapies based on a model of illness that is reversible using psychological interventions that define ME/CFS as psychologically perpetuated illnesses.

    In the PACE Trial published paper, the GET protocol defines ME/CFS as a reversible condition that is "perpetuated by reversible physiological changes of deconditioning and avoidance of activity" (i.e. it suggests that physiological changes are caused by deconditioning due to avoidance of activity) (i.e. it implies that ME is caused or perpetuated by maladaptive behaviour)... And the CBT protocol defines ME/CFS as a reversible condition based on a "fear of engaging in activity" and a behavioural response of "avoidance of activity" which are "assumed to be responsible for perpetuation of the participants symptoms and disability" (i.e. it implies that ME is caused or perpetuated by maladaptive thought processes and behaviour.)

    By pitting the therapies against each other, and 'proving' that the psychological model wins, the authors' cleverly conclude that ME/CFS is a reversible psychiatric condition. The psychological theory of ME wins over the 'theory' that ME/CFS is an irreversible organic disease, no matter that the WHO defines ME as an organic disease.

    Apparently, the insurance industry does not pay as much out for (temporary) psychiatric illnesses as it does for (permanent) organic diseases without a cure.
  9. Esther12

    Esther12 Senior Member

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    That's not much to feel positive about imo.
  10. Snow Leopard

    Snow Leopard Senior Member

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    I agree totally.

    Just one more point though. One of the major flaws is the assumption of the reliability of the questionnaire results. The fact is that there are many biases that are not controlled for unless you also provide objective behavioural evidence of efficacy - actometer results.

    I think we need to step back from all the nitpicking and start questioning whether the questionnaire results are actually measuring improvements, or merely methodological biases.
    It was reasoned in the radio interview that confidence was low before the trial and somehow therefore the results must be true. Where have I heard that before? Oh, that's right people who claim they were previously skeptical of homeopathics, (or extreme examples, alien-UFO sightings).
    But merely stating that CBT inflates ones beliefs about self efficacy is not a criticism. Since that is the whole point of CBT and GET variants of CBT. The real question is is there actual objective improvements in functioning that you would expect if patients had significantly less severity of symptoms? Dr Jason found that there were such (mild) improvements in both activity and questionnaire results in about approximately 15% of patients. This was correlated with those who had low activity levels relative to their 'energy envelope'. The results also don't suggest that CBT 'reverses' the condition in any way.

    If the UK government wants to maximise effect vs spending, then they need to target CBT only to those 15% and we cannot assume that such treatment will reverse the course of the disease itself.
  11. debergerac

    debergerac

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    I agree that the results are being oversold. What interested me in the interview was how much talking the lancet guy (I refuse to use his name) did. Sharpe's language was very noncommittal. I get the sense that the researchers are under tremendous pressure to justify the expense of the trial and to maintain status quo.

    In my opinion, it's much ado about not much at all. For almost any disease you name, properly administered CBT/GET is beneficial. That doesn't mean your Multiple Sclerosis, Cancer, Heart Disease; isn't physiologically based. As Bob mentioned it's something we do intuitively. How else can we endure and thrive a sickness for which there is no cure, hardly any effective treatments and even less respect?

    Heck, I could have told you that at a discount. What did they pay 7m pounds? I'll take half 3.5 will do me fine.



    I agree. But what he wants the money for, researching the mechanism of improvement, could be very good for us down the road. That kind of research is bound to show the physiological root of the problem. And could possibly be the start of a sea change in how ME is viewed in the UK. It seemed to me most of the slanted dialogue came from the Lancet guy, not the scientist.
  12. Snow Leopard

    Snow Leopard Senior Member

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    What is interesting is that the results in trials for those diseases are often more impressive than the results for CFS.
  13. debergerac

    debergerac

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    And...dingdingding. You've just hit the nail (and yes, I know, i'm shamelessly mixing my metaphors) on the head. This is what's so crazy-making to me about the position the Psych Cabal has staked out. Of-freaking-course there's a psychological component. There's a psych component to all illnesses. Sickness is a trauma. It stands to reason there is an emotional/mental reaction to that trauma; which presents differently dependent on the person.

    That doesn't mean a girl don't need a doctor. And it doesn't mean it's all in her head.
  14. debergerac

    debergerac

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    I keep forgetting to bring up what I think to be a major reason why PACE has to be over-sold. The Psych Cabal have caught a body. Sophia Mirza. Imagine, after the shrinks practically torture her to death; facing the public with results from a big expensive trial which proves the methods they've been touting all these years don't work.
  15. Mark

    Mark Acting CEO

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    The position you've set out, debergerac, is the (apparently) quite obviously reasonable and balanced position that I think most people would take as read. Of course there are 'psychological' and 'emotional' (do those two words actually mean different things in this context?) consequences to any illness. Of course some cope better than others with those issues and some need some kind of support, counselling, whatever. Most people - certainly including my own family - are rather baffled as to why the ME community is so resistant to these obvious points. "Psychological support is useful in any illness," they say, "and since there are no other proven treatments available this is all that can be offered in the meantime - that's reasonable, what else can they do when there is no alternative treatment yet, why are you so opposed to it?" (They don't generally wonder why there is still no treatment other than psychology for a disease dating back to at the very least 1955 - a poor return indeed for 55 years of research into what everyone nominally agrees is a physical illness).

    Well first of all, all of that is quite obvious, and so I find it extremely insulting that when I/we try to say there is a lot more to it than that, with what is going on with ME/CFS, so many people seem to imagine that I/we don't understand these basic and obvious points. I wish they would ask themselves the question as to why we are still kicking up such a fuss, and rather than concluding that we must be a bit mad or stupid or resistant to psychology for some reason, instead they should try to listen and look deeper and realise that the fact we are making a fuss indicates that there is more to it than that.

    Part of that fuss is that when you look at the bigger picture, not only do you begin to discover that CBT/GET are the only therapies that have been explored in the UK, and that's the only reason why they are the only ones with a "strong evidence base", but you also find that there are loads of other practical tips and measures, and treatments, that many/most people find helpful and yet are completely absent from any information available from your NHS doctor. Most, in my experience at least, won't even begin to suggest experimenting with rotation/elimination diets to explore what effects different foods have on your symptoms. Vanishingly few will suggest exploring your chemical and environmental sensitivities: such concepts are a complete taboo. And never will they suggest trying Co-Q10, or B12, or other supplementation protocols, nor clearing methylation blocks, nor exploring viral loads and enteroviruses or other infections - or any of the other things that are available in other countries. They've never heard of any of that stuff in relation to ME/CFS. And crucially, the entirety of the paltry ME/CFS research budget continues to be poured almost exclusively into CBT/GET research instead of medical research into the disease.

    There's this total disconnect where they now say they accept that ME is a physical illness - but they still don't fund any research into it or investigate any of the other treatments - and if they do investigate any such things there are psych fingerprints on the studies and they almost invariably find that something that somebody else found in the US doesn't seem to be replicated in the UK - using a different definition of "CFS/ME" that was made up here, of course...

    But one of the most fundamental points, I think, is that "psychology" as most people imagine it in this context is a kind of counselling, a form of emotional and (to some extent) psychological support. Help with coping and structuring your life. Whereas what we are actually talking about here is not even just "CBT" - because one has to realise that "CBT" is a technique, effectively a rule-based way of exploring and restructuring how your thoughts and behaviour and experience are related. So in itself, "CBT" doesn't actually mean anything in practice: CBT also has to have, in each practical case, a model of the dysfunction of thoughts and behaviour: it has to have some idea of what thought/behaviour patterns are counter-productive, and what you want therefore to change them from and what you want to change them to. That model will vary. I had very effective group CBT for depression and it was nothing like the CBT that the PACE trial talks about: only the technical principles are the same.

    So studying the effectiveness of "CBT" may be as misleading and stupid a way of thinking as studying "ME/CFS" cohorts where one study uses a completely different cohort definition to the next, and then imagining that they are comparing the same illness. The type of CBT that Dr Klimas refers her patients to, I am sure, is completely different to the PACE study's approach to CBT. Dr Klimas, when she talks about CBT, talks about Pacing, about adapting to your envelope. The UK talk about CBT is about expanding your llimits - pushing yourself - the worst thing that somebody with severe ME can do - and it is based on concepts like the idea that we have "false illness beliefs".

    Similarly, studying "CBT" as if it were as consistent a treatment as a drug is also clearly ridiculous. Consider: would you rather have Trudy Chalder as your CBT practitioner (shudder!), or Fred Friedberg? It would be a completely different experience because the practitioner's radically different beliefs about ME/CFS will affect what they are saying. CBT is supposedly more 'scientific' and 'measurable' and practitioner-neutral than other techniques - but I'm not buying that hype: the human you're talking to, what they believe, and the detail of the model of your illness that they are working to must have an impact on the therapy.

    A lot of the arguments we get into are just about this, because just as with arguments about "ME" and "CFS", when we talk about "CBT" we do so as if it were just one simple, well-defined consistent thing. That's a cognitive shortcut. But CBT in the US is almost certainly very different from CBT in the UK. After a controversial comment by Cort about CBT, I got him to explain to me over the phone what he thought "CBT" was. He described pacing, just in the terms that Dr Klimas uses. He described the sort of approach that we are trying to argue for.

    Something about apples and oranges, innit? Or potatoes and potartoes?

    Anyway: for me, before the PACE trial came out, I subscribed to the reasonable position I set out at the top of this post: CBT can be useful for some people with ME/CFS (though probably not for people with severe CCC ME, and only for people who don't have other coping mechanisms like meditation, faith-based emotional support, other kinds of counselling, support from families, and other such resources).

    PACE has changed my view. The results were so spectacularly poor, even after the investigators' best efforts at setting up the trial in the most favourable conditions possible for them, and the methodology leaves so much room for perception bias and all kinds of other ways that even the modest results could be distorted by placebo-like effects, that it has caused me to call into question whether CBT actually does anything at all, beyond perhaps making some people feel like somebody is talking and listening to them and trying to help, which makes them feel a bit better even though they aren't - an effect which any kind of counselling or emotional support could have.

    So PACE has made me begin to wonder whether CBT even has any significant health benefit for even the small subset who appear to get a tiny improvement. The next step I am now wondering is: if a study so flawed and so capable of being illusory in its conclusions can sail through peer review in this fashion, what about all those other illnesses that are supposedly helped by CBT? How robust and reliable is all of that evidence, really? Do they use actual biomarkers or physical measurements of any kind in those other studies? And how believable are the results achieved there? Perhaps the extra pressure put on the PACE trial, by the campaigning attention it has got, to make it somewhat more rigorous than the average CBT study, explains why the results are just about the poorest from any CBT trial for ME/CFS yet conducted. Maybe the more rigorously you do these studies, the more the effect melts away.

    Frankly I would say that if your argument is that CBT can help with pretty much any illness, then I would agree only insofar as you are saying that counselling and emotional support can help you to live with - accept? - any illness. That is the reasonable position that most people think they are supporting when they support the psych lobby position on ME/CFS. Well: I would kind of agree with that: counselling support of some kind should be available to anybody with chronic illness. As a choice. If they want it and feel they need it. They would know best. And they should also have an informed choice over modality of therapy.

    This whole thing is supposedly driven by the need for evidence to support all medical treatments. That's total BS in reality here, but I would say this: if you want to compare, based on evidence, which psychological treatments work best, then give us league tables comparing patients' verdicts on specific individual practitioners, modalities of therapy, and treatment centres. Don't pretend these therapies are as homogeneous as drugs. Compare CBT with person-centred therapy, buddhist meditation, and Dr Myhill's treatments, and let's begin to see which treatments really do work best.

    And convince us that you really do believe that ME/CFS is a serious physical illness that affects at least a quarter of a million people in the UK by finally beginning to conduct some serious medical research into the condition.
  16. debergerac

    debergerac

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    Mark, I agree with every point you made, but this:

    makes me think that perhaps I didn't express myself clearly before. When I say Psych Cabal, I don't mean that as a compliment. I do not support them and am as mad as two wet hens at there voluntary blindness. They spent millions in order to prove something any idiot knows, rather than using that money to examine the physiological aspects of illness.

    As to whether or not it's a good idea to encourage people to try to do more...according to Dr. Montoya, they were careful to work within the person's capability so that they didn't crash. I don't know about you, but when I get to the end of my energy, it is a very sudden thing. I call it 'hitting the wall' because it is just as obvious as walking into a wall.

    Again, as to whether or not it's a good idea to encourage people to try to do more...it depends on the person. Most ME/CFS suffers I know tend toward over- not under-doing. In those cases encouraging them to push their limits could be pretty dangerous...or not, depending on the methodology.

    Just so you understand Mark I am in no way arguing for the Psych Cabal. I believe that (darn it, names have been disappearing from my brain all day) the scientist guy does think ME/CFS is organic. At least that's what Klimas and Montoya indicated. But he is under considerable political pressure from the Psych Cabal. What I heard from this guy is that CBT/GET weren't as helpful as he'd hoped. And that the mechanism of the illness needs to be studied. Basically saying what you and other patients have been saying all along, "It's organic, stupid."

    But science-guy doesn't control the purse strings. It's like what happens here when big companies buy research. If they don't like the results they can bury them. PACE was done with public money, so the results can't be buried. What they can do is spin them, and make sure the scientists speak as little as possible.

    When I said this:

    It was in no way supportive of the 'psych camp' in the UK. Quite the opposite.
  17. Mark

    Mark Acting CEO

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    That's OK debergerac, I probably wasn't clear enough in my post that it wasn't all directed at you personally, as such, I was just using your quote at the start. I get what you're saying.

    But I think when you saw that ABC interview as reasonable, you just didn't appreciate the full context. It had to appear reasonable, but for those who have followed PACE in detail for the last months and years, it's outrageous. That's always the way in the UK. People will say they accept that ME is "a real illness", or even "a physical illness", but if you follow everything else they say and do you have to wonder. Weasel words, half truths, spin and insinuations are the order of the day. In the end none of us can really work out what they actually believe. They have this habit of saying one thing and then following it up with something that betrays that really they still believe the opposite.

    One thing that got me was a press quote from one of the trial authors (may have been from White). They accepted (even in the study) that CBT isn't a cure and that ME/CFS is still a real physical illness and that (paraphrasing) "we also need to continue our investigation of the physical aspects of the illness". Like...just what investigation are you "continuing", eh? Did I miss something? But of course the casual reader would take the implication that there was such an investigation to continue...no lie was told, and the reality was succesfully hidden from most readers.

    Problem is, anybody who looks at just a few parts of what they say, it seems reasonable in itself. When you see more of the bigger picture, it just seems like a web of deceit.

    No probs with where you're coming from, I just think you're a bit further away from the details of PACE than many of us here and you just go to show how effective some of these people can be at misdirection and spin - it's a tangled web...

    Remember where this psych school started out, with Wessely at the beginning: "I will argue that ME is simply a belief, the belief that one has ME". Little by little the position has got more subtle, because nobody could still say that now that so many physical abnormalities have been found, but the origins of the school are betrayed by that quote and if they really are now working "within the person's capability so that they didn't crash" then that's only because they've been beaten back to that position over more than two decades - and by the way, that is a pacing approach anyway, the very thing they give the appearance of having disproved due to the way they have labelled the therapies they tested...it's no wonder people get confused...
  18. Snow Leopard

    Snow Leopard Senior Member

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  19. Angela Kennedy

    Angela Kennedy *****

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    One thing I would add:

    CBT is not universally accepted as being helpful to people per se. Its proponents make enormous claims for its efficacy across the range of human problems.

    BUT

    It has key critics who are concerned at the basic presumptions informing CBT- that the therapist is in a privileged position to arbitrarily judge other people's behaviour as rational or irrational, and for trying to impose 'positive thinking' ideology on people for who such a response is NOT rational, as well as trying to get people to accept the status quo of social systems as benign, when they are not.

    CBT has been critiqued, for example, by William Epstein and Robert Fancher. But other forms of similar psychotherapy have been critiqued by many people. these can be found by David Smail, Paul Moloney, and in the Colin Feltham anthology.

    We mustn't assume that CBT is good per se. That claim itself is contested, independently of ME/CFS.
  20. Esther12

    Esther12 Senior Member

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    I agree Angela - I think that I'm ideologically well predisposed towards the approach taken by CBT generally (when I see that people are being unreasonable, I think they benefit from me telling them so!), but my experiences of it with CFS have borne out the sorts of criticisms made by counsellors, etc.

    It's commonly claimed that the big advantage with CBT is that it has evidence that it works - and this sounds like a good thing to me. But a lot of the evidence in support of CBT does make slightly dubious assumptions about the ability of questionnaires to meaningfully measure mental ill health - although to me it does seem that, if the therapist knows which questions are going to be asked to assess the efficacy of a treatment, then that treatment can be designed in a way that alters questionnaire answers, without necessarily dealing with the core problem. I've been looking at mental health diagnosis recently, and there are just lots of problems here that are just difficult to resolve.

    Also though... I don't think CBT needs to privilege the therapist. It can, and I think should, involve a free and open discussion between therapist and client. The trouble is that many clients will be instinctively deferential, and CBT doesn't adequately deal with the problems this could cause given the likely cognitive distortions to be found with the therapist as well as the client.

    My intuition is that 'good CBT' is often helpful, but requires higher quality therapists than is generally assumed (some of the standards for intelligence and training are terrifyingly low) and is probably less effective than a lot of the research suggests.

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