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Paper by white reviewed by wessely

Discussion in 'Latest ME/CFS Research' started by pollycbr125, Feb 5, 2013.

  1. Tito

    Tito Senior Member

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    About the word 'authority', the definition is:

    au·thor·i·ty
    /əˈTHôritē/
    Noun
    The power or right to give orders, make decisions, and enforce obedience: "he had absolute authority over his subordinates".
    The right to act in a specified way, delegated from one person or organization to another.
    Synonyms
    power - control - warrant

    It summarises what the Weasle school is all about...
  2. user9876

    user9876 Senior Member

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    I really think it is not good to talk of a psychological component. Its a phrase that is not descriptive enough and hence doesn't lead to a clear hypothesis. So I would for example say acne can lead to psychological problems as it can make socialisation harder. Or chronic illness can lead to psychological issues as people try to deal with disabilities and a restriced lifestyle. Or whatever the actual theory is. I don't think people doubt that.

    The problem is allowing a vague statement which allows those that want to be vague about their hypothesis to hide. When White and Wessely say their is a psychological component and talk of perpetuating illness I think they are talking about something different. We should push them to form a clear hypothesis rather that letting them talk of every disease has bio, pycho and social effects - thats just a cop out of not stating a clear hypothesis,
    golden, overtrain, Wildcat and 2 others like this.
  3. Firestormm

    Firestormm Guest

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    I think that for this condition where we are faced with often competing opinions from 'experts' as to it's aetiology and possible route to treatment and testing; it is all too easy to see that any progress could be held up by our confusion (which could stem from a belief in any number of the opinions advanced).

    That is to say, that for those who say we might be 'hung up' on a physical cause and a persistent 'viral' infection for example; any treatment that does not feature a drug targeting a specific physical cause will not even be tried let alone considered by the patient - and this belief will curtail any hope of improvement.

    Personally, I do struggle when trying to believe that my facing and overcoming any fears I might have (and I do have them be in do doubt about that), that this will in some way lead to an overall improvement.

    What I believe to be true is that my quality of life can/does improve through - basically - being able to talk with someone about my struggles and concerns and learning how better to manage my overall state of health.

    I have no doubt that someone with let's say, MS, who was similarly able to do this might also benefit in terms of mental health from being able to e.g. engage in activities and take 'risks' that they had previously feared would be too much.

    What is different about our condition is that nobody with MS is likely to 'recover' solely from either of these interventions.

    Yes they might improve their quality of life. Feel better able to maintain a balanced existence. But until such time as our condition can be linked to a purely 'physical' origin - nobody can say that these therapies are not capable of returning a person to a better state of health.

    We cannot (generally) say that GET or CBT are unable to fix our deteriorating myelin sheath and nerve damage. Or that GET and CBT have failed to cure us of an autoimmune disease. As we legitimately might if we had MS.

    That is not to say that either therapy is not used in the treatment of people with MS. It is. And similarly, were ME to be found to be an autoimmune condition - both therapies would be deemed to have a place for those that wanted to try them.

    Because we are where we are and no answers have been forthcoming, these therapies remain the only recommended treatments outside of drugs prescribed for help with symptom management.
  4. barbc56

    barbc56 Senior Member

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    I think part of the problem is the definition of me/cfs. Depending on the definition used, mental health etiology could theoretically be a factor. However, I think this is rare. This is why subsets are so important.

    Barb
  5. biophile

    biophile Places I'd rather be.

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    A particular focus for debate should also be trust and reliability. No doubt White and Wessely want us to trust "medical authorities" over patient organizations or ourselves on the issue of CBT/GET and the PACE Trial. Patients commonly have bad experiences with the medical profession, and on the issue of CFS, much of the medical profession also have their head in the sand or up their own arse, forcing us to rely on our own research and experiences on the issues which affect us personally. Gee, how will my stupid uneducated "militant" brain ever manage to find the truth without them?

    What has also not helped adoption over time is weak results, poor quality research, transparent spin, and remaining questions about safety. Patient organizations are supposed to represent the interests of their constituents. Patients commonly report negative effects from real-world CBT/GET outside the confines of a trial. Even the 2008 BMJ Clinical Evidence paper on CBT and GET for CFS conceded that the research base was "low quality evidence" and that no data on adverse effects had even been reported by these studies.

    The history is so entrenched that there will need to be a massive demonstration of good faith from the medical profession in order to bridge the gap with patient organizations. The PACE Trial has only made patient organizations even more suspicious and skeptical, not less. Critics are objecting to what they see as dubious methodology or are disgruntled over previously misleading claims. It is not all about the stigma of mental illness, that is a cop out. The recent MRC funding of several studies is seen as too little too late for many patients.

    Another stepping stone is the cessation of dubious claims such as pushing 60/100 points in physical function (which is several standard deviations below the average for healthy people my age) as indicative of a complete recovery.
    Dolphin, golden, overtrain and 3 others like this.
  6. Valentijn

    Valentijn Activity Level: 3

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    I've yet to see convincing evidence that ME patients are likely to recover from CBT/GET either.

    Even without knowing the underlying mechanism of ME, we do know that it's biological. As such, we can say with confidence that these therapies are not capable of causing the disease state to improve. The problem is that numerous researchers turn a blind eye to those biological mechanisms and extensively spread psychological propaganda. We also don't need to know what's happening in ME to know that exertion is often harmful, sometimes with permanent consequences.

    Incorrect. We know that GET is often harmful, and the type of CBT used in ME is inappropriate. Neither treatment has a place in ME management, and never will. GET and CBT are designed to treat a theoretical and extremely unlikely disease which we do not have.
    Roy S, golden, Min and 1 other person like this.
  7. Valentijn

    Valentijn Activity Level: 3

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    I agree completely. I am not going to advocate that ME patients trust psychiatry or psychology, because I know that I'm not capable of doing it myself. I trusted a psychologist once, and she was able to push me into briefly feeling seriously suicidal. I've had appointments with neurologists who were influenced by the psychological propaganda, and their treatment of me was deplorable and upsetting.

    They don't upset me anymore because I expect the worst from them. And based on their past treatment of ME patients, that is all I think we can expect for a long time. I hope that will change some day, but the burden is on them to prove it. I am not going to spend several months opening up to therapists when there is any risk that they will abruptly or gradually start encouraging me to cast aside my mobility scooter, stop seeing myself as a patient, and cure myself.

    I know how badly that treatment can hurt me, and I'm not going through it again.
    overtrain, biophile and Wildcat like this.
  8. biophile

    biophile Places I'd rather be.

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    The natural recovery rate for CFS seems to be about 5%, with about 40% experiencing improvement, and the rest either remaining about the same or getting worse. 5% is also a common figure given for the misdiagnosis of classical disease entities? We still do not know the recovery rate after CBT/GET, because reliable long-term figures from large studies have never been published. The new recovery paper on the PACE results used questionable criteria for "recovery" and seems to flirt with the concept of "remission" as if the recovery could be temporary. I guess we will know more when the 2.5 year follow up data is published (which should have been all collected by the middle of 2011)?

    Some people may complain about the No True Scotsman fallacy, but the fact is, when considering the heterogeneous nature of the CFS criteria as a wastebasket left over after the diagnosis of exclusion, whether or not those diagnosed with CFS who then recover have exactly the same condition as those who do not recover, is an unsolved issue. Raising that issue should not be misconstrued as an attempt to minimize the suffering of the genuinely recovered. Patients have good reason for wondering whether the characteristics of their illness match those who recovered.
    Valentijn and Firestormm like this.
  9. Firestormm

    Firestormm Guest

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    Perhaps I wasn't succinct enough. My point was that people with a diagnosis of MS in my view will still be offered CBT and GET but they will enter into these therapies with both therapist and patient knowing they have a physical condition for which the therapies can only help alleviate in terms of improved quality of life.

    This approach is no different from ME. What is different is that the science has discovered a cause (whilst not completely understanding why it occurs or generating a specific treatment in the drug-sense). Until such time as a cause can be discovered and applied to patients with our own diagnosis - the 'psycho's' have the field.

    In my own humble experience with therapists they also treat me as they would someone with MS. I realise I may be in the minority on forums and such and that my experiences here in Cornwall with our ME Service therapists and doctors may run counter to those practices prescribed by White, Sharpe and Wessely or in terms of the common interpretation of them.

    You know I sat with my Occupational Therapist at home yesterday, and she was saying how things are changing from their point of view and how people with my condition are not considered likely to mount a full recovery based solely on their teachings. When I began this journey the talk was about 'get some rest you'll recover in no time'. There was little understanding - then - of how people can and do continue to experience this degree of debilitation over long periods of their lives.

    I don't know. Maybe Cornwall is unique. Funny really when our specialist lead (a consultant occupational therapist) helped write the NICE Guideline: Carol Wilson. I shall enquire when next I meet with her what she thinks of the PACE recovery paper. I already know she doesn't subscribe to the psycho-social theory. Pinching might have had a lot to do with that I suppose.
  10. Valentijn

    Valentijn Activity Level: 3

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    It's also possible that some therapists are lying and/or misleading their patients "for their own good". Mine did it for months before dropping the bomb.
    Roy S, Wildcat and Min like this.
  11. Min

    Min Senior Member

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    Is there any other illness in which the 'specialists' doctors simply ignore the quarter of all patients who are the worst affected because such patients are so ill and unlikely to recover that they disprove the propaganda the 'specialists' are spouting?

    What would happen if the worst affected cancer patients were simply ignored by the cancer specialists?
    Wildcat and Valentijn like this.
  12. user9876

    user9876 Senior Member

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    I suspect many therapists particularly non psychiatrists will see patients not getting better and be a lot more pragmatic. The problem comes with the drip feed of poor research that leads to that view being challenged in days when we are told evidence based medicine is the way to go people can stop believing their own observations and instead believe the poor quality research that they don't have time to read properly and digest.
  13. peggy-sue

    peggy-sue

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    I did try to get my gp to tell me what his personal thoughts were on the matter - whether he believed ME is a purely psychological thing or whether it is of physiological origin.
    I asked him to just lay his cards on the table, so we both knew where we were with it.
    I said not knowing left me in a position of not being able to trust him and that this was detrimental to our doctor/patient relationship and that I thought he should be concerned about this.

    I got treated to yet another tirade of philosophical garbage and word games (as learned from nurse chalder's nasty little videos on "how to flannel these difficult patients".)
    I did not bother trying to get my head around the philosophical points of dualism/mind/body-problem or countering each and every one. It's all a load of garbage, I've been through it all at great length at uni. arguing with lecturers (and winning :devil: ) and I have better things to do with my limited brain activity. The fact that he was spouting the garbage at all was quite enough.

    He continued to try to sit on the fence. He might not have answered my question directly, but he couldn't get out of the fact that he had answered it - by continuing to refuse me a direct and simple answer.
  14. In Vitro Infidelium

    In Vitro Infidelium Guest

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    In a sense yes Cornwall is unique in that it has a very particular demographic and health profile - http://www.apho.org.uk/default.aspx?RID=49802

    The local area profile will have a huge effect on the character of health service demand, it's easy to over simplify this into inner city versus rural/suburban and poor versus rich, however that broad sweep difference does exist. The overall effect is that some areas have little room to innovate - the health demands are dominated by serious mental illness, cancer, heart disease, diabetes and COPD, aganst which the MUPS dustbin gets sidelined as 'not serious'. Innovation does need 'local' champions and Pinching very likely has created a legacy in that direction in Cornwall. It would be wrong to suggest that Cornwall is in some way a land of milk and honey as far health resources are concerned - but it is the sort of area that we probably have to look to in terms of improvement in good practice in supporting M.E/CFS patients within the NHS, in that the health 'landscape' isn't so dominated by the 'big five' diseases as the main urban areas tend to be.

    IVI
  15. Firestormm

    Firestormm Guest

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    Your breadth of knowledge (all these resources) never ceases to amaze :)

    Another 'strange' thing that came out of the other day's meeting, was that all the staff at the ME Service had been undergoing Mindfulness training. There's been a bit of a buzz surrounding Mindfulness in Cornwall's Health Service of late. They sent me on an 8 week (8 session) course in 2011 I think it was - turns out it was run by the same people as the staff's course was.

    I have nothing against Mindfulness in the slightest. It was quite effective for those who also attended my course - and I was the only one there with ME. We had a good old mix - cancer, plane-crash injury, back pain, some disease (didn't like to ask), all chronic all long-term.

    Gets to a point when (for whatever reason) conventional medicine says 'can't do anything more for you mush - you are on yer own!' I think this is where Mindfulness comes in - at least in part of course.

    Still I was reassured that the staff had been financed to attend such training. And it wasn't just those dealing with ME who attended this training: anyway I thought it was rather reassuring. Perhaps we're all hippies down here :)

    Still, better than throwing the PACE manuals at them!
    Valentijn likes this.
  16. Valentijn

    Valentijn Activity Level: 3

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    I'm a big fan of mindfulness. It's something I learned the basics of many years ago pretty much randomly, and didn't do much with. But with ME it's been great in locating pain, so I can either find a way to deal with it or at least make it stop being a subconscious pain my butt.

    It's pretty much the opposite of what CBT and Lightning Process and such teach though. Instead of becoming full self-aware (and surroundings aware), those "treatments" rely on suppressing and denying self-awareness, on the assumption that we are paying too much attention to our self-induced or imaginary symptoms.
    SOC likes this.
  17. Esther12

    Esther12 Senior Member

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    We weren't given a list of all the groups, but there were four citations for examples of the views of patient groups, and three of the four came from 'One Click'. The paper is newly published.

    As I start to be familiar with the studies that they are citing, their use of them to prop up new papers seems increasingly tenuous. A lot of it is just self-supporting opinion pieces presented as science, and I'm sure that this paper (which is of no real value in itself) will now go on to be cited itself. I really think that this could be something that's looked back upon in the way that we now view phrenology.


    re mindfulness: There are things I like about mindfulness and meditation, but I don't think I'd want the NHS providing it. I just don't trust them to avoid fucking it up, especially not with CFS. eg:

    I think this is right, but that it would be better if the NHS restricted itself to conventional medicine with very good evidence for efficacy. When it goes beyond that there's too much room for politics, quackery, manipulation and abuse.

    If the state wants to help people with difficult health problems, give them money or vouchers to spend on things for themselves, rather than giving money to those who claim that they can provide 'care'. I think that would lead to a more healthy balance of power, and allow patients to more easily choose for themselves what they think would help them with their lives.
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  18. Valentijn

    Valentijn Activity Level: 3

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    According to the document at http://meshcornwall.org/18.May 2012 letter to GPs.pdf it sounds like as May 2012 they were planning to continue with business as usual:
    As of March 2012 she was giving presentations at BACME, which has a rather strong BPS bent: http://www.bacme.info/document_uploads/BACME_Events/BACME2012ConferenceProgrammeJan2012.pdf
  19. Firestormm

    Firestormm Guest

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    Not sure what your point is Val but I dare say you are pleased to not be living in the UK either way.
  20. golden

    golden Senior Member

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    Clear Light

    i am also
    a big fan of mindfulness. its a very important insight noticing the opposite treatment effects of suppression with c.b.t.
    thankyou for pointing this out to me. i knew this i was just hazy about the fundamental nature of c.b.t. etc.

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