Saturday, May 5, 2012

My letter to APA on Somatic Symptom Disorder

Submission to the Work Group for Somatic Symptom Disorders

The new category of Somatic Symptom Disorder, or SSD, bears a remarkable resemblance to the CDC's Holmes (1988) and Fukuda (1994) definitions of the disease Chronic Fatigue Syndrome (CFS). The requirement that patients experience six months of debilitating fatigue is taken straight from CDC's definitions. This development is disturbing for three reasons:

1. For two decades, British psychiatrists Michael Sharpe, Peter White, and Simon Wessely - all proponents of the ideology-driven "biopsychosocial" school of medicine - have ignored the CDC's definition for one of their own (Oxford), which omits the physical symptoms required of the CDC diagnoses, and includes concurrent major mood disorders (exclusionary in Holmes and Fukuda). They have long insisted that "CFS" is really a modern version of "neurasthenia", which was removed from DSM a generation ago but is still diagnosed in the UK.

2. Earlier efforts to portray CFS as a somaticizing illness were foiled by requirements in the definition of somaticizing, such as the length of the illness (decades) and the absence of any gain. It strikes one as somewhat disingenuous to deliberately replace that category with another that can then be used to portray as psychological, a disease described as biomedical by the Chronic Fatigue Syndrome Advisory Committee of DHHS.

3. The APA has stated elsewhere that many of the changes in DSM-5 are intended to avoid gender biases in existing medical categories. Isn't it strange that the proponents of the new category SSD have often stated 90 percent of victims of CFS (and SSD by extension) are female? Or that the proponents of renaming the disease "neurasthenia" are also proponents of "SSD"?

At the end of the 1980s, when CDC adopted the name "chronic fatigue syndrome" for a series of outbreaks of a mysterious, debilitating illness, Simon Wessely resurrected the diagnosis of "neurasthenia" [aka "the vapors"] for CFS patients in England. Although it is a direct violation of ICD-10, British psychiatric manuals classify CFS under neurasthenia, but could not do so in the U.S. because the diagnosis "neurasthenia" was removed from DSM a generation ago for gender bias.

In choosing the term neurasthenia, Wessely referenced not Freud but a New York physician named Beard who coined the term "neurasthenia" in 1869. Beard's book, "American Nervousness", is well-known among women's studies professors for advancing the theory that girls who were allowed to study science and math in high school would end up with either a shriveled uterus (his version of "hysteria"), or struggle with a life-long "nervous condition" (neurasthenia). Beard openly wondered whether allowing girls to attend high school would result in the death of the "American race": The "Celtic race" (Irish immigrants) did not permit their daughters a secondary education, and they enjoyed large families as opposed to the smaller numbers of children born to the middle class of the "American race".

I have to say I never thought I would see that book cited as a reputable source by a contemporary scholar, but both Wessely and the late Stephen Straus of NIH used it frequently.

Adoption of SSD will allow this bizarre nineteenth century view of the way women's bodies work to return to DSM, albeit under a more modern name.

In England, the insistence that CFS is really neurasthenia has led to cruel results, with women thrown into mental hospitals against their will. CBT (to cure the patient of her "inappropriate illness beliefs") and GET (to get her back into shape after she has allowed herself to become deconditioned) are the only treatments recommended by British public health.

The result is that patients with the most severe cases of this disease are forced into hiding, bereft of all medical care whatsoever.

Adults in the U.S. have, in general, not been subjected to that level of cruelty - although the vast majority of doctors in the U.S. are ignorant of the large body of literature on the biomedical symptoms and causes of CFS and when they don’t actually harm their patients, they can’t help them. Too often they assume the problem is stress; too often they write a prescription for Prozac and send the patient away.

However, more vulnerable victims of CFS - teenagers - have been subject to removal from their homes and sent to foster care for the sin of having a poorly understood illness. Laypersons in school boards or child protective services have felt competent to diagnose Munchausen’s Syndrome By Proxy (or its more recent incarnation, Factitious Illness by Proxy) after hearing a lecture or reading an article on the subject. The more the parents fight the diagnosis, the more its proponents can claim it is true.

The phenomenon is reminiscent of the belief that autism is caused by "cold mother syndrome", or multiple sclerosis really "hysterical paralysis".

It is particularly ironic to see such a push towards psychologizing a physical disorder at the very moment evidence points to new, serious causes.

Several private research initiatives in the U.S. are using systems analysis to pull together evidence about immune defects and active viruses (both opportunistic and reactivated) found in the patient population.

At this point I must admit that I have a personal interest in this issue. I have been fortunate. My university connections have allowed me to participate in cutting edge studies. Let me share with you what scientists have learned about CFS, using myself as the case study.

I have the 37kDa Rnase-L defect, my natural killer cell function is 2%, and I have an abnormal cytokine pattern.

Perhaps that is why I suffer from recurring bouts of EBV, and have chronically activated cytomegalovirus (CMV), HHV-6 (Variant A), HHV-7, and three strains of Coxsackie B. HHV-6A and CMV (both known to cause encephalitis) were found to be active in my spinal fluid in a spinal tap in 2009, along with the presence there of the 37kDa Rnase-L. That doesn't sound very psychogenic to me.

I have been sick since suffering a blackout in my office in 1994. When in relapse, I have ataxia, expressive aphasia, expressive dysphasia, short-term memory loss, disorientation, and profound confusion (I once poured a cup of coffee into a silverware drawer convinced it was a cup). I suffer from constant severe pain behind my eyes, in the back of my neck, and in the large muscles of my thighs and upper arms. Even one flight of stairs is very difficult for me right now. At my worst, I could not walk ten paces, nor could I even brush my own teeth. I used to be an avid skier, but the disease put me in a wheelchair. I have a Ph.D. in history from Johns Hopkins, but I could not read.

I have abnormal SPECT scans and my VO2 MAX score (or CPET) is so low, I would be granted long term disability by that measure alone. I could not even pass a simple Romberg test.

I have been helped greatly by a Phase III immune modulator, only to relapse when permission from FDA to have the drug was removed. I am back on it now, and I am improving again, despite the 100-mile commute by rail from my home in Delaware to New York City. That is why some of the symptoms mentioned above are in the past tense. Without the immune drug, within months I relapse back into a severe state of invalidism.

If you believe that significantly abnormal immune biomarkers, Coxsackie B, and herpes viruses known to cause encephalitis, meningitis, myocarditis, and other serious diseases when active over a long period of time - if you believe all of this can be resolved using talking therapy and SSRIs, then proceed with your new category.

Neither could help me in the past - only pharmacological intervention directed at the viruses and immune defects has improved my condition.

How many biomarkers and viruses must a patient have to be taken seriously? If one is in constant pain, does it not make sense to worry about pain? If one suffers from a significantly debilitating illness, does it not make sense to be concerned about the state of your health?

This new category would place those sensible concerns in the realm of abnormal anxiety dysfunction. Patients would be denied access to the tests - and treatments - I have been fortunate to be able to have.

I can’t see how that would benefit patients – but it certainly would help out insurance companies.

According to the CDC, at most, 15% of the 1 million adult patients with CFS in the U.S. even have a diagnosis. Of those 150,000, only a handful have had access to the care, testing, and treatment I have.

It is a Dickensian world, where the victims of this disease are relegated to extreme poverty, no matter what their profession prior to the illness.

Who, then, would benefit from creating a psychological category for this very biophysical disease? Does psychiatry want to be the handmaiden for the insurance industry? Does psychiatry want to become the default option for "I just don't know"?

These are the questions that the profession needs to answer before proceeding with plans for SSD.

[Note to readers: To read about the proposed psychiatric category of SSD for DSM-5, go to the following website: Somatic Symptom Disorder (SSD). Instructions for comments are on the bottom of the page. We have only until June 15, 2012, to leave a comment.]

Mary M. Schweitzer, Ph.D.

18 comments:

  1. As a United Kingdom citizen diagnosed with CFS/ME, I have to say that I do not recognise the description you give of the treatment of CFS/ME patients in "England", as you call it. Your examples of harsh treatment are not an accurate description of current attitudes in the UK healthcare system. That there is considerable scope for improvement in the treatment of ME/CFS in the UK is undeniable, but that seems to be the case everywhere.

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  2. "Your examples of harsh treatment are not an accurate description of current attitudes in the UK healthcare system."

    Richard, I am a UK citizen with ME (not "CFS/ME" whatever that is) and I can reassure Mary that she is entirely correct, and that you are wrong except perhaps in your own comfortable and protected experience.

    The NHS fails to recognise the existance of ME as a serious profoundly exertional disease (Hooper; Enlander; MERUK et al) and instead promotes the CBT model of "deconditioning and faulty beliefs" where GET is "safe" and CBT to "modify thoughts" (CMO Report) is promoted with nigh-fascistic zeal and exclusiveness, despite evidence from objective review that it causes people to work fewer hours and surveys that report it the biggest single generator of worsened outcome.

    Disability benefit guidelines have been rejected 10 times by the MEA. The NICE guidelines were roundly rejected by 18 out of 20 charities. Surveys by the 25% Group repeatedly confirm neglect and/or abuse as a norm.

    Young people are not infrequently forceably removed from families, adults refused disability living allowance and social support, and doctors on blogs joke about euthenising sufferers. A published study on nurses' opinions found most took a dim view of ME pts seeing them as "lazy bastards" or mentally ill. In what other disease do doctors feel it's okay to go online and blame the deceased for their own decline in health?

    Kumar and Clark's teaching textbook classifies ME in two places as a psychosomatic disorder while Trudy Chalder's Maudsley training video (see below) states that patients should be told to take a ten minute walk morning and evening even if they have a bad day/relapse because it is "not harmful".

    The MRC fund no biological research and the BMJ have a "preference" for psychobabble. The UK rejected the Fukuda definition in favour of an even worse idiopathic fatigue description (Oxford) now the very poor, unvalidated NICE definiton. Wessely and SHarpe advice the insurance industry while PD White deterred authorities like NICE from recommending disability support.

    I could go on but suffice to say I am sorry but you are completely ignorant to the personal and political experiences of the ME community as a whole. To back up what I have said please look at:

    Training videos

    Liverpool patient handout

    The psychiatric view of ME/CFS: what is it?

    Peter White's comments on the draft NICE guidelines

    11 surveys which found high rates of adverse reactions with GET

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  3. So to post again, but interestingly Richard seems to contradict his comment here somewhat with this on his blog.

    "There are still vigorous remnants of that attitude to be encountered amongst medical professionals, those who decide eligibility for assistance and a lot of other folk who ought to know better. Charlatans and quacks offer ineffective and inappropriate cures, and in the UK appear to have successfully convinced Government agencies in the case of Graded Exercise Therapy."

    (They're much more than "remnants" if they've successfully convinced authorities re CBT/GET. They also sit in all the positions of power -- research committees, service management and so on.)

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  4. I'm getting a little fed up of seeing American commentators, usually of a right wing POV using the UK health system as an example of awfulness. My point was not that the the UK system is brilliant, merely that bad practice is not universal here. I've had good care from my GP, a fairly useless CBT based intervention from an ME clinic, and a year long battle with the Social Security system over my entitlement to benefit. I don't reaqlly think I have an argument with you - I'm just concerned to see the NHS, the best part of the post WW2 British settlement being dragged into arguments by US commentators with an axe to grind.

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  5. Did you read my post at all? It has nothing to do with NHS per se - only with its capture by British psychiatrists when it comes to M.E. and CFS.

    If you do not believe that is a problem, then I suggest you read Magical Medicine by Dr. Malcolm Hooper:
    http://www.meactionuk.org.uk/magical-medicine.htm

    The committee that is trying to shove "Complex Somatic Symptom Disorder" into APA's DSM-5 is headed by BRITISH psychiatrist Michael Sharpe. The point is to get authorization for the CBT/GET autocrats both back in the UK - and in the U.S.

    If this was a blog about health care reform, I would have written about my frustration that the U.S. is the only industrialized nation that seems to think it's okay to deny people health care on the basis of their income - and where the very wealthy whine like spoiled brats about paying taxes to accomplish that goal.

    You would have heard my frustration that the media (except for PBS) just showed Democrat v. Republican talking heads instead of looking at what other nations are doing for health care.

    I favored a single payer system with a public option. We didn't get that.

    But that's not what this blog is about. It's about the effort to create a new psychiatric category "CSSD" for patients with a diagnosis of chronic fatigue syndrome - which will be a terrible disaster if permitted to happen.

    Insurance companies will be able to treat patients with "CFS" worse than they already do, because of the discrimination that is permitted against people with mental illnesses (something that is also wrong, but that is a story for another day). Most disability insurance either does not pay for mental illnesses at all, or limits disability for the mentally ill to 3-5 years. Most health insurance companies either do not pay for mental illnesses at all, or limit doctor visits to, perhaps, 10 a year. (A great idea for schizophrenia ...)

    And, of course, the result would be more people misdiagnosed and undiagnosed; more people left to tumble into the Dickensian world of CFIDS impoverishment and decline.

    Now that you've spent so much time on a blog that I did not write, would you care to comment on the one I did?

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  6. I have written, in my submission to the American Psychiatric Association (click here http://www.mefreeforall.org/April.2457.0.html, need to be registered www.mefreeforall.org and logged in) that the proposed introduction of the category "Complex Somatic Symptom Disorder", into which M.E sufferers would be drawn and, also, the move to have CFS/ME (still conjoined) re-classified as a psychiatric disorder, in the next International Classification of Diseases (ICD) version of the World Heath Organisation (WHO) Handbook, firstly, maintains the tangled mess of two terms, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome which, by polluting the data set, hampers research progress not only for M.E. but all other conditions.

    Furthermore, such classification would direct all patients, indiscriminately, to treatments developed for the management of psychiatric illnesses. Indeed, adverts for staff to join teams in a network of clinics established in the UK in 2004, often emphasise that a background in a psychiatric field would be an advantage.

    It seems excessive protectionism on the part of a profession, to seek these re-classifications, when they already have sole ownership of the treatments available for people with M.E., since these treatments - Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) - are all that is available as things stand, recommended and practised by the very same doctors, predominantly psychiatrists, who advised the Government to fund them in the first place. It is rather like a cartel protecting an existing monopoly that is already scientifically and ethically bankrupt.

    All the evidence show that it isn't working for people with M.E., or making things worse for some (Twisk and Maes, September 2009). Yet, Government, the Medical Establishment and, most amazingly, national and local support groups are ploughing on, even calling for increased funding.

    It is ironic that it is for the painful economic reasons of a recession that the single strand promotion of treatments, which might cause M.E. sufferers even more pain, is being slowed, rather than the medical ones that it does not work or may cause harm.

    No other country has quite the same system of clinics as we do in the UK but every one does have the treatments administered at some level. This Research Psychologist and veteran M.E. sufferer since 1988 (22 years at time of writing) suggests that you do not follow our example.

    Dr John H Greensmith
    drjohhngreensmith@mefreeforall.org
    ME Free For All. org

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  7. As much as I admire the NHS in the UK in many regards, it being a much better and more humane way of treating a population than relying solely on private health care, I have to disagree with Richard and his concerns of the descriptions of ME treatment in the UK. I have had this illness for 40 long years now and it is quite true that there has been NO care available for me on the NHS AT ALL - other than CBT/ GET and psyche drugs - the latter causing very considerable iatrogenic harm (the former I haven't bothered with).
    The UK sees ME as a psyche social illness no matter it's declarations of following the WHO ICD classification nor it's Chief Medical Officer's Report earlier this decade which insisted ME/CFS is a physical illness. Only behavioural and psychological therapies are mandated by NICE for people with ME.

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  8. "Fed up ... United Kingdom citizen" (Richard Lucas).

    Do you have any kind of conflict of interest axe to grind ?

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  9. Thanks for the excellent blog, and submitting your comments on this horrible idea of CSSD.

    It is a worst nightmare to me, what might happen to me if that becomes formal and official.

    Thanks also for the history on Mr Beard whose 1869 American Nervousness has left us with this term & concept of neurasthenia. Truly, this book was a source to Wesley, to Straus over 100 years later? Not doubting, simply amazed, perhaps shocked.

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  10. I'd like to add a few remarks about the differences between the second draft and this third draft, which was released on May 2. As these comments have a short line measure, I will post over several comments.

    Following evaluation of the results of the DSM-5 field trials, the SSD Work Group has decided that "Simple Somatic Symptom Disorder (SSSD)" is "a less severe variant of CSSD."

    The Work Group is now proposing to merge CSSD and SSSD into one category and is suggesting dropping the word "Complex" from the category term.

    So the latest proposal is that the previously proposed new categories, CSSD and SSSD, would be rolled into one and called Somatic Symptom Disorder (SSD).

    The latest proposed category names for the revision of the DSM-IV "Somatoform Disorders" now look like this:

    Somatic Symptom Disorders

    J 00 Somatic Symptom Disorder (combines CSSD and SSSD and drops the "Complex" word)
    J 01 Illness Anxiety Disorder
    J 02 Conversion Disorder (Functional Neurological Symptom Disorder)
    J 03 Psychological Factors Affecting Medical Condition
    J 04 Factitious Disorder
    J 05 Somatic Symptom Disorder Not Elsewhere Classified

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  11. These are the criteria for J00 Somatic Symptom Disorder

    http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=368


    J 00 Somatic Symptom Disorder

    Updated April-27-2012

    Proposed Revision

    Somatic Symptom Disorder

    Criteria A, B, and C must all be fulfilled to make the diagnosis:

    A. Somatic symptoms: One or more somatic symptoms that are distressing and/or result in significant disruption in daily life.

    B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least one of the following must be present.

    (1) Disproportionate and persistent thoughts about the seriousness of one’s symptoms.

    (2) Persistently high level of anxiety about health or symptoms

    (3) Excessive time and energy devoted to these symptoms or health concerns

    C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is persistent (typically >6 months).

    Specifiers

    Predominant Pain (previously pain disorder). This category is reserved for individuals presenting predominantly with pain complaints who also satisfy criteria B and C of this diagnosis. Some patients with pain may better fit other psychiatric diagnoses such as adjustment disorder or psychological factors affecting a medical condition.

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  12. These are three "Severity Specifiers" proposed for SSD: Mild, Moderate, Severe.

    "Somatic Symptom Disorder is a disorder characterized by persistency, symptom burden, and excessive or maladaptive response to somatic symptoms. There is a considerable range of severity. Typically, the disorder is more severe when multiple somatic syptoms are present. In addition to fulfilling criteria A and C, the following metrics may be used to rate severity:

    Mild: only 1 of the B criteria fulfilled
    Moderate: 2 or more B criteria fulfilled
    Severe: 2 or more B criteria fulfilled plus multiple somatic symptoms"

    ------

    Note that the criteria for CSSD in the previous draft, released in May 2011, had:

    "B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least two of the following must be present."

    but this has been reduced to "At least one of the following", presumably to accommodate Simple Somatic Symptom Disorder within what had been the CSSD criteria.

    (Last year the criteria for CSSD had required two from (1), (2) and (3) and a symptom duration of greater than 6 months while the criteria for SSSD had required only one from (1), (2) and (3) and a symptom duration of greater than one month.)

    Note also that the three Severity Specifiers" for SSD: Mild, Moderate, Severe may potentially be intended to correspond to three newly proposed categories in ICD-11 Somatoform Disorders section.

    In the ICD-11 Alpha drafting platform (which is a work in progress), the Somatoform Disorders categories are currently renamed to "Bodily Distress Disorders". There are three new categories listed:

    05A08.00 Mild bodily distress disorder
    05A08.01 Moderate bodily distress disorder
    05A08.02 Severe bodily distress disorder

    These three new category suggestions have no definitions or descriptive parameters visible in the Alpha draft so it isn't possible to determine at this stage what disorders these newly suggested terms might be intended to capture or how they would relate to the existing somatoform disorders categories in this section of ICD-11.

    Suzy Chapman
    http://dxrevisionwatch.wordpress.com

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  13. In the next few days, I plan to post further notes on the presentation by Joel E. Dimsdale, MD, at the DSM-5 Track at the APA's Annual Conference in Philadelphia.

    The Future of Psychiatric Diagnosis: Updates on Proposed Diagnostic Criteria for DSM-5 (Part III)

    Monday, May 7, at 9 a.m. – 12 noon, in Room 103B at the Pennsylvania Convention Center

    Chair: Darrel A. Regier, M.D., M.P.H. Co-Chair: David J. Kupfer, M.D.


    Presenters:

    1. DSM-5 Proposals for Somatic Symptom Disorders

    Joel E. Dimsdale, M.D.


    At the end of a brief presentation, Dr Dimsdale, Chair of the Somatic Symptom Disorders Work Group, took a number of questions from the audience around proposals for CSSD and Conversion disorder.

    One questioner asked: Chronic fatigue syndrome has not been a part of the DSM-IV so far. Would there be any place for that in the DSM-5?

    Dr Dimsdale's response was: That's an important question. Chronic fatigue is an important, distressing, disabling condition - it is remarkably heterogeneous...remarkably heterogeneous. We feel that some patients with chronic fatigue would meet the criteria for CSSD - some wouldn't.

    Questioner responds: And what would be the cut off point...or what would be the criteria to include some and exclude others?

    Dr Dimsdale: Well, chronic fatigue is really almost a poster child for medically unexplained symptoms as a diagnosis - it's a very, very heterogeneous disorder and we would say that the B type criteria are defining. Now, I have friends with chronic fatigue - some of them would meet these criteria and some wouldn't - so if a person is unable to put this down or unable to get beyond the...who is just stuck with the B type considerations, we would consider that to be having CSSD.

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  14. Very good read....wow! Thank you and best wishes for your continued health and research.

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  15. The clock is ticking for DSM-5's Somatic Symptom Disorder


    Action required today on time sensitive issue:

    The texts for DSM-5 are in the process of being finalized and the SSD Work Group is being asked to review their proposed criteria for SSD. This requires intense public pressure for 11th hour changes and I need your help, today.

    If you haven't already done so, please click on the link to my joint commentary with Allen Frances, M.D., on the perils of the American Psychiatric Association's DSM-5 category "Somatic Symptom Disorder" on his blog at Psychology Today.

    For three years, Dr Frances has been at the forefront of public criticism of many of the APA’s controversial proposals for new disorders for DSM-5 and for the lowering of thresholds for existing disorders.

    Dr Frances had chaired the Task Force for DSM-IV, was chair of Department of Psychiatry at Duke and is currently professor emeritus, Duke. He is strongly opposing the SSD criteria.

    Visiting his blog and leaving a comment on our post (however brief) will help demonstrate to the DSM-5 SSD Work Group and Task Force the level of concern for this new category.

    SSD is going to hurt all patient groups, but especially the so-called "Functional somatic syndromes" - IBS + SSD; CFS + SSD; FM + SSD but also MS + SSD; cancer + SSD; coronary disease + SSD; diabetes + SSD...because SSD can be applied to all illnesses and conditions.

    In the DSM-5 field trials, 26% of the "functional somatic" study group were coded with SSD; 15% of the "diagnosed illness" group (cancer and coronary disease patients) and 7% of the "healthy" control group met the criteria for an additional diagnosis of SSD.

    Professor, now Sir Simon Wessely, has presented at DSM-5 symposia and Professors Michael Sharpe and Francis Creed are members of the DSM-5 Work Group for "Somatic Symptom Disorders."

    What goes through to DSM-5 will likely influence the revision of ICD-10 to ICD-11. Already Prof Francis Creed, who advises the ICD-11 working group for the revision of the "Somatoform Disorders," is pushing "Bodily Distress Disorder" to replace the ICD-10 "Somatoform Disorders." BDD is said to encompass the DSM-5 "Somatic Symptom Disorder" construct.

    There isn't very much time left before the DSM-5 texts are finalized for the publishers.

    Please visit Dr Frances' post, today, leave a comment and then repost this link on other platforms and forward to all your contacts.

    http://www.psychologytoday.com/blog/dsm5-in-distress/201212/mislabeling-medical-illness-mental-disorder/


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