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Book published this week in UK referring to ME as psychosomatic

Discussion in 'General ME/CFS News' started by anniekim, Jun 8, 2015.

  1. Snow Leopard

    Snow Leopard Hibernating

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    The people who say "why are you afraid of a mental illness label, mental illnesses are just as real".

    In principle, sure. In this world however, those with mental illnesses are discriminated against in a whole matter of ways, everything from insurance companies having 2 year limits, to workplace discrimination, to lack of research, to ineffective solutions being pushed as they cannot be tested in an unbiased way (double blind trials), to other medical complaints being dismissed merely as due to "anxiety" or "stress" (this attribution itself is speculative at best, pseudoscientific at worst).

    It would be in a very different world where rational patients would not be afraid of a mental health diagnosis.
     
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  2. Wildcat

    Wildcat

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    The other idiot belief is that if you say your disease is not psychosomatic - that proves it is psychosomatic. It's frankly creepy.
     
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  3. TiredSam

    TiredSam The wise nematode hibernates

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    I don't know if I would even bother responding to this. If I did, I would ask the questioner why they assume my objection to a mental illness label is based on me being "afraid", and would they please stop using words like "afraid", "anxious", "not prepared to consider the possibilty of ..." etc. In fact the inability of such a questioner to discuss an opposing viewpoint without using such words is why I wouldn't bother discussing my illness with them in the first place.
     
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  4. Wildcat

    Wildcat

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    The whole psychosomatic label constructs ME sufferers as stupid, irrational, ignorant, deluded... fearful/afraid and perpetually wrong. The patients are reduced to the level of disfunctional objects without status.
     
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  5. Snowdrop

    Snowdrop Rebel without a biscuit

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    re: B) An excellent suggestion. Already being taken up by PWME. We don't ignore the positive.

    Re: A) Problem is lay or non-science people like family friends aquaintances and the general public don't really follow the latest scientific research and validation of illness. Some people are fortunate and have family etc who understand science and some have non-science family etc who simply know the person behind the illness well enough to know it's not some hysterical need manufactured in their mind.

    For the rest they need to hear the other side. In terms of information that is out there in the media through authoritative experts the biological view is still the minority view. The somatoform view is the entrenched view. Many people believe the entrenched view because they are told it is so. It is not so.

    But I think you've heard this POV regarding the need to speak up already. So the question I guess is why do you have a problem with people speaking up on the subject? Is it purely because to you we sound like we're harpies or mentally ill (which would be a mischaracterisation of mental illness)?

    For you any one who is persistent in pointing out a false claim, especially one that is harmful is just stirring up trouble?
    I expect I'm not the only one who is curious to know.
     
    Last edited: Aug 30, 2015
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  6. Wildcat

    Wildcat

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    A great many people with ME, the ones whose brains have recovered enough to read, think, write, have done years of hard campaigning via Comments sections of national and local papers, providing evidence of the latest research making clear informative arguments, more recently via news media Facebook pages. Writing to journalists and editors also.

    The UK media have NO Excuse anymore to perpetuate the "ME is a mystery and a controversy, used to be called yuppie flu" crap.

    No excuses left because all national editors, science editors and science correspondents have been sent ample evidence of ME research, by individual campaigners and the charities.
     
    Last edited: Aug 29, 2015
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  7. alex3619

    alex3619 Senior Member

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    I agree, with these caveats. I think part of the problem is editors, not just the journalists. Editors have the final say.

    A second issue is what happens with most ME pamphlets and booklets for doctors - I think most journalists also file it, unread, in the convenient little round filing basket that the nice people empty at the end of the day to file somewhere mysterious.

    The third thing is that journalists no longer have the liberty of investigating things. They have to do twice as much with half the resources as they used to.

    The fourth issue is that modern media want the new and sensational, not the old or underwhelming.

    These issues make the media ignorance very hard to crack, particularly in the UK.
     
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  8. SOC

    SOC Senior Member

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    IMO this argument misses the point entirely. We are not claiming mental illness is not real, nor are we afraid of a mental illness label. The point is that ME is not a mental illness.

    If I develop lymphoma and my doctors and friends claim I have a broken leg instead, refuse to treat my cancer, or accept that I'm extremely ill, and keep trying to set my leg to treat my condition, I'm going to strenuously object. I might even get angry eventually. It's not that I don't think broken legs are real, or that I'm afraid of a broken leg label. It's that I DON'T HAVE A BROKEN LEG! I don't want treatment for a broken leg, I want treatment for the condition that's destroying my life.

    If I hear that mind-numbingly stupid argument that we're afraid of a mental illness label one more time, I'm going to gag... at the very least. It is an argument with no substance and is a total divergence (purposeful?) from the real point -- we want treatment for the condition we have, not one we don't have, however real it may be.
     
  9. moosie

    moosie

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    Well said.
     
  10. alkt

    alkt Senior Member

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    m.e has been recognised by w h o since 1969 as a neurological disease that did not stop or slow down s wessley and co from reclassifying it to suit their own financial gain/philosophy based on the bigotry of psuedo intellectual thinkers like freud. theories that should of been dismissed a long time ago instead of being given credence by supposed medical science.
     
  11. alkt

    alkt Senior Member

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    you just have to look at the number of men diagnosed with breast cancer and hear their experiences with doctors telling them they cannot have breast cancer because they are men.to know how misogyny can effect male patient too
     
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  12. alex3619

    alex3619 Senior Member

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    When this happens its not just misogyny but also anti-science. We expect more from doctors. I would hope men in that position file official complaints, and if it compromises care then they should consider legal remedy.
     
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  13. alkt

    alkt Senior Member

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    i think to many people are to grateful for their final diagnosis and treatment to consider any kind of action against their gp .and us older people are aware that our doctors cannot possibly get it right every time.although apologies would be nice when they finally except they were wrong.
     
  14. Dolphin

    Dolphin Senior Member

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    Abstract for review in "Brain: a journal of neurology"

     
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  15. Chrisb

    Chrisb Senior Member

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    One wishes that such people would read Austin's Sense and Sensibilia and Philosophical Papers. What would a "very real world of psychosomatic illness" be contrasted with? How might they "unreally believe that they are"?
     
  16. Anabel

    Anabel

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    Re: "Abstract for review in "Brain: a journal of neurology" (posted by Dolphin, above). Christopher Bass, U.K. psychiatrist, has written articles about 'factitious disorder' - patients who simulate symptoms and are deceptive malingerers. (In the most severe cases, it used to be known as Munchausen Syndrome and Munchausen By Proxy.) 'Factitious disorder' - how many other ridiculous terms can they dream up? I read as 'Fictitious Disorder', which is what it really means, as far as psychs are concerned. One of his articles is "Factitious disorders and malingering: challenges for clinical assessment and management". That should give you an idea of where he's coming from.

    "Despite this avalanche of online abuse (to which psychiatrists working in this field have become inured)" Get out of the field. Stop claiming that people with real physical illnesses are 'psychosomatic' or any of the nonsensical terms (MUS, BDS, etc.) psychiatrists like to come up with when they are incapable of diagnosing physical illnesses, including M.E.

    Cognitive impairment is really bad today so I hope what I wrote makes sense, but I can't be sure.
     
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  17. chipmunk1

    chipmunk1 Senior Member

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    start the article in defensive mode implying that everyone who disagrees is "mentally ill" or just has a flawed personality.

    Yes they imply this.

    Somatisation is caused by emotional conflicts according to them OR by the inability to manage stressors or deal with them which is learned behaviour, supposedly learned in childhood, part of our personality thus our psychology.

    So our personality is not right or our psyche if you want. They imply this or say this. Have always said this.

    So first they make accusations which they know to be offfensive then they portray themselves as a victim.

    Why start in defensive mode? Because they know what they are doing is problematic, otherwise they wouldn't have to.

    Interesting that you can have debilitating symptoms without being ill. Isn't that a contradiction?

    Well if you believe you are ill while being not what does that mean and imply?

    Intelligence? Skill to handle and deal with life? How many studies are there showing doctors to suffer from psychosomatic illness? 0, 1?

    Why so few?

    The only study that i have seen so far was done with nurses. Why nurses and not doctors?

    So they don't get this illness? Why not?

    If they do why are no studies being done? Because they don't want a psychosomatic label?

    Why not if it is so wonderful?
     
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  18. chipmunk1

    chipmunk1 Senior Member

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    if this is true how does that explain their behaviour? So one must conclude that everything is the mind now and the body is irrelevant. At least for psychiatrists.
     
  19. Aurator

    Aurator Senior Member

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    A "medical doctor" has recently written a new positive review of O'Sullivan's book on Amazon.uk, and when another person left a polite comment in response to this review, the reviewer replied.

    Here is the original review:
    http://www.amazon.co.uk/gp/cdp/memb...page=1&sort_by=MostRecentReview#R4OTTPDG75FQO

    And here are the comments:
    http://www.amazon.co.uk/review/R4OTTPDG75FQO/ref=cm_aya_cmt?ie=UTF8&ASIN=0701189266#wasThisHelpful

    I have copied the reviewer's reply below in italics.
    Would anyone care to suggest a good answer to turkeybaster's (i.e. this reviewer's) response? Her answer seems carefully worded and she seems convinced of the impregnability of her viewpoint. I'm not very good on quoting science at people and yet it disturbs me that there are still GPs or other doctors who believe implicitly in the findings of the PACE trial (or what they falsely believe to be its findings) and cannot see the leap of faith that they, together with O'Sullivan, have taken when they apply "the functional/conversion/somatisation disorder paradigm to CFS".

    "I think those that object have missed the point. Dr O'Sullivan doesn't put forward a "psychiatric model" of CFS. She doesn't make any claim that the illness is fully understood, nor does she propose any new answers, although she does (bravely) state her belief that the symptoms are at least in part psychological or behavioural. I think her point is that it shares many features with the functional/conversion/somatisation disorders that occupy the other chapters in that 1. there are no objective clinical findings in CFS 2. all test results are normal 3. CFS symptoms are subjective and 4. the only treatments proven to benefit sufferers are CBT, a psychological "talking" therapy, and a graded exercise programme.

    The IOM report is cited in a couple of the reviews, and indirectly by one review that links to an ME association press release which cites it. For me, the report doesn't progress our understanding of the illness at all. It wrings its hands and calls for more research but doesn't propose any new plausible mechanisms. It unhelpfully mentions EBV more than once (thoroughly disproved) and talks of "immune dysfunction" when the evidence for this is conflicting at best.

    As an aside, immune dysfunction has long been known to be a feature of depression, which remains a psychiatric diagnosis.

    The IOM report talks of "redefining an illness" which is PR, not clinical medicine, and then proposes new diagnostic criteria for the condition which, it would appear, have now been widely adopted. It is not the body-blow to Dr O'Sullivan's book that those citing it seem to think.

    Clearly, those affected by CFS have each got stories of being dismissed by the medical profession, of misdiagnosis and (I've no doubt) most of them will have been accused of malingering more than once. This is frustrating, hurtful and harmful. Dr O'Sullivan applying the functional/conversion/somatisation disorder paradigm
    to CFS does nothing, in my view, to detract from the genuine symptoms they experience. To claim otherwise, I believe, is to miss the point of the book."
     
    Last edited: Feb 23, 2016
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  20. Aurator

    Aurator Senior Member

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    After a couple of further comments from others, turkeybaster (a doctor in his/her late twenties) has responded again.

    It puzzles me how any doctor can persist in such uncritical acceptance of the efficacy of CBT and GET for ME/CFS, when any half attentive look at the research on which such a view is based will show disturbing signs of shoddiness. But the following seems to be turkeybaster's refrain: "It bears repeating that CBT and exercise programmes are the only treatment currently proven to provide any benefit to sufferers of CFS."

    One of the two commenters drew turkeybaster's attention to David Tuller's letter to the Lancet with its numerous signatories, but it seems to have had no effect in persuading turkeybaster to accept that there might be something wrong with PACE et al.

    If anyone can bear reading the whole of turkeybaster's latest comment, I have pasted it below:


    "Donnie, I'm not really sure what you're getting at in your whole paragraph on EBV - almost every adult has serological evidence of exposure to EBV at some point, and there is no evidence for it as a causative agent of CFS. As for the patient and relative I mentioned, you're just going to have to accept that your cynicism is misplaced.

    And, despite myself, I'm going to have to tell you that homeopathy isn't "evidence based". That's the whole point: there isn't any evidence that homeopathy has any effect beyond the placebo. It's ironic that you write of "quackery" in British medicine, dismiss large swathes of peer-reviewed literature as "methodologically flawed" and essentially suggest, on the evidence of a book review on amazon, that I was negligent in my treatment of a patient and then accuse Dr O'Sullivan of "lazy prejudices"!

    It bears repeating that CBT and exercise programmes are the only treatment currently proven to provide any benefit to sufferers of CFS. The Cochrane organisation have produced meta-analyses of the research for these interventions - we're not just relying on one or two studies here, Loaf, this is about as close to "fact" as you get in scientific discourse. The review for CBT is old now, published in 2008, but the review for exercise therapy was recently updated. Feb 2016. They show benefits for both interventions. They are not cures, and problems are identified with compliance, but for those who tolerated the treatments, they are proven to improve symptoms. And that's all we've got. This much is proven, nothing else (as yet) has been shown to help.

    As for the rituximab trial, I'd caution you, Loaf, not to mention it in Donnie's presence as the primary outcome measure is entirely based on self-reported fatigue scores. It shall be dismissed as quackery! In all seriousness, we're just going to have to wait to see if the results of the small scale trials are replicated. Any results are going to have to be verified by other teams, as knocking out a patient's B cells to treat a non-fatal condition is a pretty drastic step. We're going to have to be damned sure it works! I can see that there is a crowd funding initiative in the UK to start a similar trial here which is a pretty innovative step - and it has the added benefit that the trial will be out of the influence of drug companies.

    I don't really see a conflict with defending Dr O'Sullivan's position on CFS and ongoing biomedical research. The condition currently has no biological basis and there are no universally accepted theories describing the pathophysiology of the illness - of course there should be ongoing research! I'd also draw your attention to the example you both seem to have ignored in my original reply, that immune dysfunction has long been known to be a feature of depression. The diagnosis is psychiatric, but biomedical research revealed its effects go far beyond what was originally thought - biomedical research should never stop! Equally, biomedical abnormalities do not alter the fact that depression is a purely psychiatric diagnosis.

    I think you've hit the nail on the head, Loaf, when you write that there may well be a part physical basis to CFS, but I'm baffled as to why you think neither myself nor Dr O'Sullivan accepts this? I suspect the answer to this whole condition is going to lie somewhere at the point where physical health meets psychological well-being. Factors of behaviour, personality, psychology and environment as well as physical health are all going to play a part. I suspect we disagree, but for me that's what makes the conversion/somatisation paradigm so useful. It's a working model for the condition, if not the whole answer.

    There seems to be a clamour among CFS sufferers for a purely biomedical explanation for their condition, and I fear there isn't going to be one. As I said above, I think it's going to turn out to be far more complicated than that. And this is why we need to embrace the therapies that the evidence shows DOES help. There's a lot of talk elsewhere of similarities with AIDS before the causative agent was found, or MS before the inflammatory demyelinating plaques were discovered. I actually find that sort of comparison quite offensive: these are progressive, fatal diseases with objective abnormalities detectable on clinical examination and/or routine lab bloods before the pathophysiology was understood. CFS is not the new AIDS, and it's not the new MS.

    I'm glad you've read the whole book, Loaf, but I'm sorry you may have missed some of the subtlety of it. The underlying meaning isn't that medicine has all the answers, o
    r that doctors always think they're right - on the contrary, Dr O'Sullivan's humility is striking - or even that CFS symptoms are "all in your head". Treatment of conditions of whatever aetiology requires first a therapeutic alliance to be forged with patient and clinician. Sometimes that's as simple as sticking out an arm and allowing me to pump you full of antibiotics, but often its about a doctor describing that they don't have all the answers but offering treatment that has been shown to help. This book is as much about this alliance (and the consequences of a lack thereof) as the neurological deficits, and that's what made the book so enjoyable for me. The CFS/ME debate is an unnecessary sideshow, and detracts from the true message of the book."
     

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