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Professor Simon Wessely says he is misunderstood

Discussion in 'General ME/CFS News' started by Daisymay, Nov 27, 2012.

  1. Wildcat

    Wildcat Senior Member

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    Neither Showalter, Wessely or Richmond ever claimed that ME was caused by Aliens

    .
    The genious of 'Hystories' is that both Showalter and Wessely could both agree that ME is psychosomatic - they agreed that her solution was Freudian Analysis and that his solution was Behavioral (CBT) - they agreed to disagree on the treatment - those 'solutions' were so obviously secondary to the primary agreed message that ME is 'psychosomatic' -



    They both got massive publicity from the book, directly and indirectly - and we were made to look like hysterical fools in the media.

    .
     
  2. taniaaust1

    taniaaust1

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    Im not sure where you get the idea that it is the parents who are diagnosing the children with ME/CFS... all the cases where Ive heard of someone being locked away in a mental hospital or mental ward against their will due to ME/CFS..the people have had a previous ME/CFS diagnoses often by specialists.

    In Brians case (I'll try to find you the link for it,). He'd even flown overseas to see a very well known ME/CFS specialist (Dr David Bell?) so who supported he has ME/CFS...but instead the UK psychs put all his symptoms down to psychriatric issues and believe that ME/CFS is a psych illness.

    I find it quite sad that you deny what is going on when these cases do come to public light at times (thou I expect many dont). Brians case has been on the forums and many of us have been following it. Most of us too know or have heard of others in his situation.

    I became suicidal at one point over everything I face due to ME/CFS and hence was detained in mental ward. It was horrific.. they didnt recognise ME/CFS at all even thou I'd been under 3 different CFS specialists for it and was still under one of those and I had a severe case of it (they didnt care that I'd had many abnormal findings in the past eg postive Rombergs etc. After I was ending up missing my morning meals as they expected me to get out of bed and come to a room for them with the others, they tried to force me to get up in the mornings EARLY (when i have a reversed sleep cycle so wasnt getting to sleep till 4-5am), they had placed me in the room next door to the wards recreation room.. which had music playing must of the time.. really bad for one who was noise intollerant due to ME/CFS.

    All I can say based on my own experience and what I also know to be the experience of many others with ME/CFS too, is that even IF a ME/CFS person has developed mental health issues (many have been detained who dont even have any psych issue).. those psychs are far more likely to do harm then good.. the situational depressed become more depressed.. those suicidal over bad ME/CFS treatment just became more suicidal. I had a bit of PTSD over my whole experience (another thing I then started having nightmares over) and over that ward and the ME/CFS being ignored.. (missing meals as they wouldnt allow me to have mine when I was awake and okay to be eatting etc)..
     
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  3. Wildcat

    Wildcat Senior Member

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    It is of great concern that the experiences of both adults and chidren who have been put through medical abuse due to the atrocious ME policy in the UK - that the firsthand experience of the abuse has been rejected and denied by members of this forum.... or dismissed as 'emotive'
     
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  4. Wildcat

    Wildcat Senior Member

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    So sorry to hear about your atrocious mistreatment, Taniaaust - best wishes from a fellow severe ME survivor.


    xxxxxx
     
  5. barbc56

    barbc56 Senior Member

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    Of course there are inherent flaws with the soft sciences. They are less quantifiable and considered more subjective than the hard sciences. The hard sciences rely on experimental, empirical, quantifiable data, using the scientific method. Accuracy and objectivity are imperative. Human behavior is much more complicated and variable. This may make it more difficult for progress to occur with the soft sciences as compared to progress in the hard sciences.


    I may not have made this clear but I was speaking about the evolution of psychiatric/psychological models of human behavior. Basically, Freudian, then behaviorism followed by the cognitive behavioral model. Now we have more of a psychopharmacological approach. This is a short and very simplistic version of the history of psychological/psychiatric models over the last one hundred and fifty years.


    My reference to Freud is comparable to saying Columbus discovered America. They might be the persons best known for their contributions but not actually the first to achieve these milestones.


    Behaviorism is a reductionist approach and certainly has it's limitations. While it may work on rats and small children :rolleyes:, behaviorism ignores motivation, thought, cognition and doesn't go beyond the stimulus response model.



    Yeah, I see what you are saying about validity. however the often repeated assertion that the Wesselyian school of thought that me/cfs is psychosomatic saying me/cfs is simplistic. It's more complicated than that. Wessley has stated he believes a viral infection is probably the cause cfs/me. He(they?) believe from the research conducted, that two treatment approaches , GET and CBT, are shown to be effective in treating me/cfs. This is not the same thing as saying me/cfs is psychosomatic.

    While I might take issue with the claims of improvement, how long it lasts and not taking into consideration medications for treating me/cfs, the exaggerated memes about the evils of Wessely and company, might in themselves be considered a fallacious argument.

    Barb C.:>)
     
  6. Stukindawski

    Stukindawski

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    Hi Barb,

    Going from memory, I believe I read a 4-way discussion paper where Wessely stated that he believed that the initial viral infection caused the illness state and that a fear of exercise maintains the original illness beyond the infection period.

    That's the sense I got anyway, but I'd rather people looked into that further than took my word for it.

    The finer semantics of what Wessely says indeed have to be taken cautiously. Even when he said something along the lines that, "I will argue that ME is a belief", it does not mean he is contradicting the statement "I have never said that CFS is all in the mind." In fact the trade between terms ME and CFS is key here. The preference for the term CFS is something I'm pretty sure Wessely has also argued for. It is still disputed that 'Myalgic Encephalomyelitis' is an accurate term, so he can argue that ME is a belief as opposed to an empirically and objectively derived diagnosis.

    For anyone reading, I'd like to point out, I'm really not in this guy's fanclub. My experience of the illness does not allow me to put any stock in the theory that a belief is perpetuating my ill health.

    But if people are serious about opposing these arguments, you have to actually know what they are. The job of opposing this kind of institutional fallaciousness requires at the very least that you surpass the standard it has set. It starts from the bottom up, it requires painful amounts of reading and it requires that you make the arguments that you oppose, better than they do and then find a way to prove them wrong.
     
  7. Jenny

    Jenny Senior Member

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    Could you tell me a bit more about the Birkbeck course, maryb? Before I had to retire because of ill health I was an academic at Birkbeck and would like to know who runs this course and its content.

    Many thanks!

    Jenny
     
  8. alex3619

    alex3619 Senior Member

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    Yes Stukindawski, a good summation of one approach I am taking in my book. Its why I estimate it will take another 9 years.

    On behaviourism it was indeed very flawed, but it had a stronger scientific base. In my view the current best model for psychopsychiatric research methodologies may be sociology. Sociology has had a long history of grappling with inherent bias, imprecise information, diverse world views and other issues. Psychopsychiatry could do with learning from sociology.

    Wessely has statements that can be used, without context, to support almost any view of ME. Thus he always has something to defend his current position in the published literature. This is an extremely smart political move. It should not be construed as scientifically valid however.

    What these people say sounds reasonable. What they do and what they recommend and who they influence are what should concern us. Oh, and their rhetoric which says very different things to different audiences, including the logical opposite to USA audiences as UK audiences, as recounted in Angela's book, though I have not independently confirmed this yet. Several of the researchers are on record as telling UK audiences that CBT/GET can restore many to most patients, while telling US audiences that it restores almost none. Mistakes? Changing views? Political spin?

    Bye, Alex
     
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  9. In Vitro Infidelium

    In Vitro Infidelium Guest

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    This is all just hearsay - it may concern us but it doesn't allow any substantive deduction. The problem with Tymes Trust surveys is that there's no base evidence - we don't know who provided the diagnoses (if any) of M.E/CFS, we don't know how many people were surveyed and we don't know how they were selected. And M.E/CFS is not a prophylactic against mental illness.

    On UK figures 1 in 4 of us will at some point develop a mental health problem and one in ten of those will require inpatient treatment. That means that of the estimated 250,000 people who are suffering from M.E/CFS at any one time, over 6,000 will suffer in the lives at least one episode of psychological distress that requires inpatient care. We don't know the overall recovery rate from M.E/CFS - but it is likely that the total lifetime coincidence of M.E/CFS and a serious mental illness is closer to double the 6,000 figure - so that in any one year in the UK serval hundred people with M.E/CFS will suffer a major mental health episode and require inpatient care.

    Good lord - another acusation of denial ! I repeat ME/CFS is not prophylactic against serious mental health impairment. And no one can make any sensible comment about these anecdotl case. The person you name may be profoundly menatally ill. Of course it coud be possible he is trpped in some kind of 'One Flew over the Cuckoo's Nest' scenario - but the likelihood of that is very,very small, given the UK closed all its large long stay hospitals (other than for patients who are very dangerous) decades ago and the current system is full to overflowing virtually all the time. As I wrote above - the chances of someone who does not present a threat of harm to themselves or others being legally detained in a secure mental health unit is very, very slim. Simply for lack of space.

    Your conclusion is that people with M.E/CFS who are in psychological distress should not receive psychiatric treatment - anyone can understand why you have concluded that. But that doesn't provide an answer to the problem posed by family and medics who are faced with someone who has M.E/CFS and also shows signs of serious mental illness. Realistically we are not going to see psychiatric interventions avoided because someone has a pre diagnosis of M.E/CFS. The only way forward is engagement with psychiatric services in seeking better inpatient care in psychiatric settings fro people with M.E/CFS. A simplistic anti psychiatry appraoch is not going to change anything.

    IVI
     
  10. Sasha

    Sasha Fine, thank you

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    One good way to sideline the psych lobby is to start getting immunotherapy mainstreamed for ME patients. We have a chance to do this, this week!

    If you've had time to post on this thread, you've got time to write an email in the campaign to get Ampligen approved by the FDA. You don't have to be an American to do this.

    Details in my signature! :)
     
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  11. Wildcat

    Wildcat Senior Member

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    Hi Jenny,

    i posted about the hysteria course. The courses were part of a feminist literature MA run by Professor Naomi Segal for a few years.

    i can't find the Reading uni material..

    Birkbeck School of English and Humanities
    Graduate Theory Seminar Spring 2006

    ........"First we will look at two recent books, and consider how
    differently they view the contemporary persistence of hysteria as an
    illness of modern western life. Do they still think of it as
    typically a problem of women – or of femininity?"......


    Elaine Showalter, Hystories (Picador, 1997)

    ·Chapter 6: Hysterical narratives 81-99

    ·Chapter 8: CHRONIC FATIGUE SYNDROME 115-132

    ·Chapter 10: Recovered memory 144-158

    ·Chapter 13: Alien abduction 189-201............


    -------





    COURSE SYLLABUS
    http://www.bbk.ac.uk/eh/for_students/postgrad/rsh_degrees/readgroups/

    GraduateTheorySem/

    Graduate Theory Seminar

    Spring 2006


    Psychoanalysis and feminism: the case of hysteria

    Four classes held on Thursdays 2 Feb, 23 Feb, 9 Mar and 23 Mar 2006
    at 6-7.30 pm

    Prof Naomi Segal (Institute of Germanic & Romance Studies)


    Hysterics, Freud said, `suffer from reminiscences'. In the first
    three sessions, we will examine the theories of Freud on dreams and
    hysteria, moving on from his theory to a number of case histories
    and their interpretations. We will think specifically about the body
    of the hysteric: how it `speaks' its symptoms, how it typifies the
    situation of young women at the end of the 19c. Formative in
    the `discovery' of psychoanalysis in late 19c Vienna, the hysteric
    is a figure that continues to fascinate – both feminist theorists of
    the 1980s, for her political potential (we will compare readings of
    the `Dora' case) and more recent psychoanalysis, for her continued
    irritating qualities. In the last session, we will focus in
    particular on two questions: What has happened to hysteria today?
    Has it disappeared or simply changed its symptoms? We will look at
    two recent books on hysteria, published in 1997 and 2000, consider
    the figure of Princess Diana as our main example, and you are also
    invited to bring along examples (written or visual) of what you
    think the typical symptoms of troubled young women are now..........





    ...Class 4 23 Mar 2006 HYSTERIA NOW

    What has happened to hysteria today? Has it disappeared or simply
    changed its symptoms? We will look at two recent books on hysteria,
    published in 1997 and 2000, consider the figure of Princess Diana as
    our main example, and you are also invited to bring along examples
    (written or visual) of what you think the typical symptoms of young
    women are now.

    First we will look at two recent books, and consider how differently
    they view the contemporary persistence of hysteria as an illness of
    modern western life. Do they still think of it as typically a
    problem of women – or of femininity?


    Elaine Showalter, Hystories (Picador, 1997)

    ·Chapter 6: Hysterical narratives 81-99

    ·Chapter 8: CHRONIC FATIGUE SYNDROME 115-132

    ·Chapter 10: Recovered memory 144-158

    ·Chapter 13: Alien abduction 189-201




    Christopher Bollas, Hysteria (Routledge, 2000)

    ·Chapter 3: Sexuality and its transformations 27-40

    ·Chapter 4: In the beginning is the mother 41-60

    ·Chapter 11: The malignant hysteric 127-45


    If we have time, we will finish on the figure of Princess Diana who
    seems, in both her life and her death, to capture a particular type
    of 20c femininity. Or was she too exceptional to tell us much about
    the problems of today's young women? How do these women live their
    troubles, and how do their bodies speak for them?


    Suggested secondary reading

    Mandy Merck, ed. After Diana (London & New York: Verso, 1998),esp
    Naomi Segal, `The common touch', 131-45

    Andrew Morton, Diana: Her True Story - In Her Own Words (St Ives:
    Michael O'Mara, 1997)


     
  12. Holmsey

    Holmsey Senior Member

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    Clearly from my mail I was asking for no such thing, neither would ANYONE here ever ask such a thing, but they you knew that when you wrote so a bit pointless me pointing it out.

    Your reply, or rather your lack of one pretty much answers all of my questions in any case, I doubt from what you have siad that you are very likely to know anything close to the full facts around either case.

    I'm not aware of anyone saying that there are no such cases, rather the message seems to be one of simply urging caution around making outlandish claims, or generalising, when only a clinician would be privelaged to all of the details, for the very resons of confidentiallity you alude to above.

    Yes, it would, but you've failed to even clarify if you're talking about ME/CFS at this point, or if in the case that you are, was this a clinical or parental diagnosis. You don't need a phone number to state generalities like that, but by pretending that I asked you avoid what are reasonable questions.

    As to the emigration, perhaps those involved were running away from something that they didn't tell you about, perhaps you've been taken in and this childs illness has been used as the excuse. Would they tell you if they were in serious debt, would they tell you if there were unrelated criminal charges pending, or if they had been blackmailed in some way.

    It's cheap sensationalism and rabble rousing to make claims like this knowing that you'll never be required to back them up. None of that changes that it may or may not be wholley true, but clearly this isn't the place to rectify things if it is.

    If you know the answers and are confident you'll be able to give them without disclosing personal details, feel free.
     
  13. alex3619

    alex3619 Senior Member

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    IVI, if surveys are hearsay, so is all ME related psychobabble ... they rely primarily on questionnaires, their patients are not properly categorized, the questionnaires have dubious validity for ME, patients are coached for a year or more on attitude then asked to fill in an attitude questionnaire .. the inherent bias factor is huge.

    These should be considered as sociological data, as sociological conclusions, and subject to sociological scrutiny ... but I agree its not science. In either case. It is evidence though.

    So in a limited sense I agree with BPS ... there is sociological perspective, including the failings inherent in current psychopsychology practices.
     
  14. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    probe2.jpg Alex
    I think aliens would be much more likely to cause Irritable Bowel Syndrome, than ME... just sayin'! ;)
     
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  15. Jenny

    Jenny Senior Member

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    Thanks wildcat. Interesting that she used Showalter's book - that attracted a large amount of criticism from ME patients when it was published.

    One can only hope that this course aimed to get students to take a critical look at such texts, but given the outline of the course that doesn't seem very likely.

    Jenny
     
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  16. Valentijn

    Valentijn Activity Level: 3

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    That's not what she was saying. She is saying that even when there is both ME and mental illness present, the psychiatric treatment of ME makes it very unpleasant or even dangerous to seek help for the mental illness. In Brian's case, it seems that there are both psychiatric problems and ME, yet ME is being treated like a purely psychiatric problem - this is quite inappropriate, and would be considered outrageous medical neglect in the case of any other illness. "Yes sir, your cancer is all in your mind. I can ignore those test results and the advice of your oncologists, because I'm in charge now. Now go take these drugs that would only hurt you if you actually had cancer."

    It seems like a very rare problem to worry about solving. Do MS organizations sit around and figure out how to be better taken care of if an MS patient gets hospitalized for mental illness?

    I can't understand why you are so focused on the psychiatric (non-)aspect of ME, and so adamant that we make senseless concessions to psychiatrists that are not required from patients with other non-psychiatric disease.
     
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  17. maryb

    maryb iherb code TAK122

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    IVI you said
    "The only way forward is engagement with psychiatric services in seeking better inpatient care in psychiatric settings fro people with M.E/CFS. A simplistic anti psychiatry appraoch is not going to change anything."


    Are you serious or having a laugh at our expense?
     
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  18. alex3619

    alex3619 Senior Member

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    IFF simplistic anti-psychiatry approaches are a problem, then the answer is not to go more psychobabble tolerant. The answer is to get more sophisticated, do more analysis, come up with strategies.

    I am seeing a growing political element to this debate. There is resistance to the idea that these things should be considered political, yet the arguments are dividing along political lines. Welcome to the two party system.
     
  19. Wildcat

    Wildcat Senior Member

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    I agree, maryb


    Are you having a Laugh at us, IVI?
     
  20. notinfinite

    notinfinite Guest

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    Wildcat & maryb - yes.

    If events play out in their usual format then we are probably about to witness another battering from the media and SW.
    SW has successfully got it into the collective minds of the masses that ME/CFS patients are extremists and dangerous - will this mean when we confront GP's/consultants with statements that do not fit the psychological explanation, we will be fitting the role as portrayed by SW & Co and therefore be dismissed (even more so than previously) with the assistance of 2 coppers and a straight-jacket? (Mine's a 'medium' ......oh yeah......and not white - I'm too pale to wear white, makes the bags under my eyes look awful.)

    I for one do not buy the SW sob story, neither do I buy into this 'lets be reasonable' stance. Could it be that the louder (note - NOT threatening) voices expressed by some advocates are starting to apply pressure to SW and his friends? How many figures of public knowledge don't have a few angry followers, I used to have death threats at work on a fairly regular basis (and I was not famous!), so what, I'm still alive, he's still alive - Julian Assange is still alive, and you can insert the name of any famous person ad infinitum that is still alive, there are plenty of threats flying about from a FEW individuals - it has nothing to do with ME/CFS. Does SW believe that if someone acts in a threatening manner they must have ME/CFS? Is this a new symptom? I looked out of my window this afternoon - is that a symptom?

    Perhaps when a suitable treatment is available, or when I feel safe having to go into hospital, or when I say "I have ME" and I am not met with that awful blank stare of disbelief, perhaps then I might feel empathy for the plight of SW - until that day arrives I will take whatever steps that are legitimate to follow my beliefs.

    I so want to live in a world where justice is a given, where everyone is reasonable, where people are not down trodden and where it would be a reasonable course of action to sit down with a psychiatrist and be able to convince them that maybe their authority should be questioned because it is causing harm, but I can't do that because they are not reasonable, they do not question anything, they simply keep repeating the same rhetoric quoting over 600 research papers done by a man who believes it is safer in a warzone than his own country.

    IVI - all I want to say is Merry Christmas.
     
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