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New study finds factor that dictates level of pain and fatigue in ME.........*******!!!!!!!

Discussion in 'Latest ME/CFS Research' started by Countrygirl, Sep 5, 2012.

  1. peggy-sue

    peggy-sue

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    The biggest problem with CBT is it does not address the underlying issues - it deliberately does so, it's part of what makes it CBT.
    So, for example :whistle: when I had CBT for my OCD, my treatment was considered to be 100% successful.
    I went from washing my hands about 180 times a day to about 20 or so.
    I stopped washing my frozen peas completely (it had been 17 times)
    I even started using fruit and veg which were damaged or bruised.
    My therapist was so pleased with me, she asked to be allowed to write up my case for her PhD.

    However, she had decided to allow me an alcoholic drink as my reward.
    Hence my downward spiral into alcoholism.

    The basic problem, a bullying and mentally abusive husband, was still fully active.
    So I used alcohol to cope with it.
    Hardly what one might call a "success story".

    But of course, they don't do any follow -up, do they? Another basic principle of CBT.
    They don't want to risk finding out they were wrong and having to retract their "success" stories.
    Dolphin and SilverbladeTE like this.
  2. alex3619

    alex3619 Senior Member

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    Hi peggy-sue, CBT evolved in part as a reaction to psychoanalysis. Psychoanalysis was supposed to be about finding out what went wrong, but much of it was based on out of date and discredited theories, and cognitive therapy (and later when behavioural therapy was added) was about fixing problem behaviour and problem thoughts, not finding a cause. Its like taking an aspirin for a headache - they hope the headache will go away and they are just helping you cope, they don't bother looking for an aneurism or brain tumour or some other organic cause.

    So I agree with what you are saying, at least in part. One issue with early CBT was that it deliberately targeted irrational thinking - it was an attempt to establish rational thought patterns. This makes it very appealing, especially to a rationalist like me. However over time it focussed more and more on problem solving. At that point I think it shifted from a focus on rationality to one of expediency. It became brainwashing. The appearance of a cure became more important than an actual cure. If you say you are better that is all that counts. Its like ME patients who have undergone reprogramming - they say they are doing better, even if they are doing worse. There is at least one case history where this has happened. I also think this probably accounts for much of the improvement seen in patients on questionaires. Its only question answering behaviour that is better, not quality of life or functional capacity.

    Bye, Alex
    Dolphin and PhoenixDown like this.
  3. peggy-sue

    peggy-sue

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    Well, psychoanalysis is just the opposite end of the stick - and equally, every bit as stupid.
    The "analyst" has no incentive to fix their client, who is just a cash-cow.
    wastwater likes this.
  4. Esther12

    Esther12 Senior Member

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    There is a big difference between CBT which is targeted toward those with identifiable cognitive distortions, and CBT which is targeted towards those with problems. Rationalism is the drive of the first approach, while pragmatism is the foundation of the latter.

    Personally, I don't respect pragmatism, and don't think it's a reasonable foundation for managing the cognitions and behaviours of human beings, but even ignoring that, the shift has big implications in terms of power relationships.

    I'd be interested to know if anyone disagreed with this:

    Focusing pragmatically on problems inevitably leads to greater medicalisation and loss of autonomy for the cognitions and behaviour of those in positions of weakness, in a way which does not pose a comparable risk for those in positions of power and authority. Were the state to try to medicalise ever more minor cognitive distortions, there would be a push-back from those with power who resent the encroachment upon their own freedoms - when this medicalisation is targeted at those in positions of weakness, those with problems rather than cognitive distortions, there is less concern from those who have the power to push back.

    When policies threaten the self-interest of those in positions of power and those in positions of weakness, they are more likely to be successfully resisted. Increasing the medicalisation of the cognitions and behvaiours of those thought by the state/psychiatric profession to suffer from even minor cognitive distortions poses a threat to the autonomy of those in a wide range of positions. When policies threat the self-interest of those who face serious problems and are very likely to be in positions of weakness, they are less likely to be successfully resisted. Increasing the medicalisation of the cognitions and behaviours of those whose health problems leave them dependent upon disability benefits, even when no cognitive distortions have been identified, will tend to threaten the autonomy of only those with very little social power and influence.

    The way in which those with health problems are being biopsychosocially managed by ATOS and the new UK benefits reforms would not be seen as acceptable were it inflicted upon a group with social power. It is not the abnormal cognitive distortions of the sick which is being used to justify this management - equivalent minor cognitive distortions could be found in many other groups - it is their weakness, and the burden they are to others.
    SilverbladeTE, Shell and PhoenixDown like this.
  5. biophile

    biophile Places I'd rather be.

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    Hi Alex. A quick clarification. Wessely certainly has (repeatedly) speculated about the avoidance of stigma, but IIRC, over his career he has shifted these speculations from patients in general to patients/advocates who criticize his approach.
  6. peggy-sue

    peggy-sue

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    I wish my brain could cope with reading your post, Esther.......:alien:
  7. Esther12

    Esther12 Senior Member

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    Thanks for trying... I've just corrected a couple of typos and added a middle paragraph. It did feel like a muddled post, and I'm not sure if that because I've made an error of thought, or it's just a difficult point to express concisely.
  8. peggy-sue

    peggy-sue

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    It's got lots of big words in it Esther, and lots of clauses relating to other clauses and my brain just fried - there's not enough capacity in my working memory for that much stuff, all at the same time.

    The wheel may still be turning, but the hamster is dead.:rolleyes:

    There is a possibility I might well have been able to write what you did, if I had hold of what you are saying. :) (I can produce big words and lots of related clauses.)
    Gaining understanding in the first place is harder than explaining it after I've "got it".:oops:
  9. Esther12

    Esther12 Senior Member

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    I definitely know what it feels like to have one's mind slip out of gear while reading a somewhat convoluted paragraph. Maybe once I've thought things through a bit more I'll be able to express myself more clearly.
  10. peggy-sue

    peggy-sue

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    It's just my "fog" and restricted short term memory, Esther. honest! :hug:
  11. PhoenixDown

    PhoenixDown Senior Member

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    It's not just about stigma, it's the fact that the treatment doesn't work for so many patients and the ideology causes so much social harm to patients, effectively (though may be not intentionally) turning family, friends, co-workers, and doctors against the patient. All whilst hindering honest biological research in to these diseases (not the kind that always determines de-conditioning / behaviour was the cause of abnormalities) but honest research.

    Having said that stigma is a big issue, both lay people and doctors really do treat patients who are seen to have psychiatric pain or fatigue (or other problems for that matter) as not being in equivalent physical pain to someone with cancer or AIDS or MS, or not truly suffering at all. Thanks to my fibromyalgia diagnosis and lack help from the various doctors & specialists, my family told me and still tell me that my suffering is not real, can not get worse from activity, and that I am delusional for thinking I am suffering, hurting, itching, tired, or have any of the symptoms that you can't see (even though you can't see those things in cancer or AIDS either), but they contest that people with cancer and AIDS are truly suffering despite the lack of any objective pain tests ran on those patients.
  12. alex3619

    alex3619 Senior Member

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    Hi PhoenixDown, I do not think that psychiatric stigma is a real issue at all, but an extremely exaggerated issue because it suits the psychobabble story. I see no reason to believe its an issue.

    Like you I am unconvinced of their unsubstantiated claims, both from their lack of validation from the science and also because I have tried (extensively) most of the things they claim work, long before they were found to be wanting by the patient community, and like everyone else I found they either do not work or make things worse.The science simply isn't there to justify their claims, which means it fits the definition of psychobabble.

    Bye, Alex
    peggy-sue and Dolphin like this.
  13. PhoenixDown

    PhoenixDown Senior Member

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    If someone tells you that your suffering is delusional because you were given (what they perceive as) a psychiatric label rather than a medical/physical one, then yeah, that's a stigma.

    I understand that those in favour of biopsychosocial medicine use the stigma argument to try to explain the counter movement against their ideology and unwarranted beliefs, but there really is a stigma, not created by the patients themselves (as biopsychosocialists would have you believe) but created by the experts and doctors who push that ideology and treat such patients like second class citizens who cant be trusted to know when a treatment or activity makes their symptoms worse.

    Edit: The biopsychosocialists often rebuttal by saying their patients suffering is real, however I find this a little disingenuous because the second you tell them that a certain activity or small weight lifted causes increase (sometimes permanent) in symptoms, they ignore you and act like you are delusional. Their beliefs spread like a disease and is the most damaging part of the stigma.
  14. peggy-sue

    peggy-sue

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    The "stigma" of mental health does not bother me one iota.

    Mental health however, is officially stigmatised. :(

    If it wasn't, there wouldn't BE the discrepancy that exists in benefits paid to "mental" versus "real" illness in the first place.
    taniaaust1 likes this.
  15. currer

    currer Senior Member

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    I agree absolutely, peggy sue.
    I am horrified by the way mental illness is marginalised and neglected. Our attitudes are medieval and shameful.
  16. biophile

    biophile Places I'd rather be.

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    There is still a significant stigma associated with mental illness, both in the medical profession and in the general public, which often view mental illness or psychological factors as less serious or less real than physical disease or organic factors. ME/CFS patients were regular people once, ME/CFS does not make people immune to harbouring the prejudice and misconception that we can expect to find in a general population sample. Additionally, after being treated like garbage due to their alleged mental health status or psychological factors in physical illness, it would be unsurprising if some ME/CFS patients started to think the same.

    That said, I agree that the psychiatric stigma as an explanation for ME/CFS patients' resistance to biopsychosocial explanations/treatments, is massively exaggerated. It amounts to little more than a strawman and red herring to distract away from addressing criticism. The possibility that some patients may want to avoid the stigma of mental illness is massively overshadowed by the real issues at hand. Patients want an accurate diagnosis with adequate descriptive and explanatory power, want the correct treatment, do not accept the stigma of labels which do not apply to them, do not want limited research resources to be wasted on blind alleys and psychobabble, are concerned about the negative implications of ideology and inappropriate treatments, and can analyze the claims for themselves and spot flaws.

    Some patients have suggested that the stigma surrounding ME/CFS is comparable to or even worse than the stigma surrounding mental illness. For example, major depression may not get much respect, but it is still generally acknowledged and treated; whereas ME/CFS is often dismissed entirely and even openly ridiculed in front of the patient without any treatment. I have even come across one or two anecdotes of people applying for disability benefits based more on their secondary depression rather than their primary ME/CFS.

    Consider the following thought experiment. Suppose you are at a gathering of about 1000 people including hospital staff, politicians, and their family and friends. For whatever reason you are on stage with the microphone and have to introduce yourself as a patient. Which would feel more cringe-worthy: "I have severe major depressive disorder", or, "I have severe myalgic encephalomyelitis and/or chronic fatigue syndrome". I do not expect everyone to say ME/CFS would be worse, but I think enough would say it or have trouble choosing, demonstrating that ME/CFS is not a shield to stigma.

    Patients allegedly seek a medical physical sounding diagnosis to avoid facing up to their psychological problems, to avoid the stigma of mental illness, and for secondary gain. As it has never been demonstrated that ME/CFS patients have primary psychological problems, nor question the CBT/GET model primarily due to secondary gain or fearing the stigma of mental illness, we are left with patients wanting a medical physical sounding diagnosis simply because it matches the characteristics of their illness. I'm just preaching to the choir here, but I imagine this thread would not go down well at the next conference on psychosomatic medicine where such criticism would not be welcome.

    Wessely et al have speculated about medical labels helping patients to avoid stigma, blame, guilt and responsibility. At first it was aimed at patients more in general but now the target is critics of the biopsychosocial approach to ME/CFS. Ironically, Wessely et al have totally avoided blame and responsibility for any negative impact of their approach. Even though they have occasionally conceded (but still downplayed the impact) that some doctors contribute to the stigma of mental illness, all roads more or less lead back to primarily blaming the ME/CFS patient.
    Dolphin likes this.
  17. Marlène

    Marlène Senior Member

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    This article is what psychiatry should be about:
    Neglect of the mentally ill is the great scandal of our times. Are we prepared to pay for the solution?
    World View: Our writer, whose son Henry has schizophrenia, says the desire to save money has left a countless number of mentally ill people to fend for themselves

    http://www.independent.co.uk/voices...prepared-to-pay-for-the-solution-8120045.html

    I wish good care for every person and the right doctor for each one of us.
  18. SilverbladeTE

    SilverbladeTE Senior Member

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    Costs of not treating health problems in broad terms, mental or physicla always ends up being worse than treating them
    For mental health, you have violent crime, not working, soical anxiety as folk are frightened of spree killings rape unprovoked attacks scary behaviour in public etc, poor control leading to dangerous habits (ie risky sex) etc.

    Problem is to avoid overly patriarchal, arrogant, heavyhanded approaches, which nearly alway smake a total screw up by demanding certian treatments an dnto being open to reason and individual case needs.
    And also to avoid, greed (pharma crops, insurance companies etc)
    also, alcohol is one of the biggets causes of mentla health problems here, addctive poison, leading to brain damage/intoxication leading to huge number of woes because big business and government love the money and the Public for too long has not had the "balls" to "Man up" and treat the susbstance with the respect it deserves, it's a DRUG like any other and so needs due caution in use.
    peggy-sue and taniaaust1 like this.
  19. Dolphin

    Dolphin Senior Member

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    Good points.

    After a bit of detective work, I found the questionnaire here (pp120-124):
    http://www.collectionscanada.gc.ca/obj/s4/f2/dsk2/ftp04/mq22884.pdf
    (Also here: http://mro.massey.ac.nz/bitstream/handle/10179/1560/02_whole.pdf?sequence=1 pp261-265)

    It's past my bedtime, so not sure whether I have time to work out from some more searches, which are the relevant questions. The questions have been divided up into 3 groups: Self-Criticism, Dependence and Efficacy (with Efficacy being a positive trait).

    -----
    Here are five of the questions:
    Factor II: Self-Criticism
    (from: http://www.mentalhealthce.com/courses/contentHD/secHD15.html)
    Last edited: Feb 25, 2014
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  20. alex3619

    alex3619 Senior Member

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    Any school of thought that is internally self-validated, and not subject to external testing, is nonscience according to the view put forward by Karl Popper on critical rationalism.

    The blatant ignorance of the bioscience is getting to the point of outright quackery though. The entire BPS school, and the Wessely school in particular, is in for a rude shock within not too many years. However history shows it can take entire lifetimes to put such schools of thought to rest, as those pushing them will continue regardless of any and all evidence, until they retire and find nobody wants to get into their area of medicine any more. Game over.
    Valentijn likes this.

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