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DSM-5 proposals for Somatoform Disorders revised on April 27

Discussion in 'Action Alerts and Advocacy' started by Dx Revision Watch, Apr 29, 2012.

  1. laura

    laura Senior Member

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    Suzy,
    Thank you so much for your multiple, detailed postings to keep us all updated on a very important matter. Ridiculously, we ME/CFS'ers have to fight battle after battle just to prove we are sick. This particular battle is absolutely critical, as the DSM's influence cannot be overestimated.
  2. taniaaust1

    taniaaust1 Senior Member

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    ohh. was that functional disorder listed as a separate disorder in their stuff before?
    Now Im confused.. (its not helping that Im unable to read all the post). Could someone please tell me. I thought they'd introduced a new name.. not gone and put a couple of different things together.
  3. taniaaust1

    taniaaust1 Senior Member

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    I find it shocking too if Non-24 Sleep-Wake disorder or any circardian rhythm disorder is going to be thrown into the mental health field. Sure a lot of people with mental health illnesses do have sleep disorders as part of their symptoms but that dont mean everyone who has these sleep disorders, has a mental health issue.

    these sleep disorders are hormonal ones... got to watch those psychriatrists.. next they'll be wanting to put disorders such as diabetes into their mental health manuals.

    What's going on? are they finding it hard to get enough patients or something due to all the psychodribble.. its so ridiculous that why dont they just say everyone has mental health disorders.
  4. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    taniaaust1,

    [Content edited 9 June 2012]

    With the first draft (released in February 2010) and the second draft (released in May 2011), there were two key PDF documents that expanded on the category and criteria proposals, the disorder descriptions and the rationales for the Work Group's proposals. For this third draft, no PDFs have been published, but I will keep checking the DSM-5 Development site in case it is intended to publish revised PDFs but these were not ready for publishing, this week.


    If you pull up this image, you can see how the current DSM-IV categories for the Somatoform Disorders are arranged:

    http://dxrevisionwatch.files.wordpress.com/2010/01/dsm-icd-equiv3.png


    For the first DSM-5 draft revision, the proposals had been:

    1] To rename the "Somatoform Disorders" section of DSM to "Somatic Symptom Disorders." (Early on in the process, the "working title" for this section had been "Somatic Distress Disorders.")

    and

    2] Combine several of the existing DSM-IV Somatoform Disorder categories into one new term which would be known as Complex Somatic Symptom Disorder (CSSD).

    Complex Somatic Symptom Disorder (CSSD) would absorb the existing DSM-IV diagnoses of somatization disorder, undifferentiated somatoform disorder and hypochondriasis, as well as some presentations of pain disorder.

    For the second draft, the SSD Work Group proposed introducing another new category Simple Somatic Symptom Disorder (SSSD). This would require a symptom duration of just one month, as opposed to the six months required to meet the CSSD criteria.


    So for the second draft, the proposed categories looked like this:

    Somatic Symptom Disorders

    J 00 Complex Somatic Symptom Disorder
    J 01 Simple Somatic Symptom Disorder
    J 02 Illness Anxiety Disorder
    J 03 Functional Neurological Disorder (Conversion Disorder)
    J 04 Psychological Factors Affecting Medical Condition


    Following the clinical settings field trials, the SSD Work Group decided that "SSSD is a less severe variant of CSSD." So they are now proposing to roll CSSD and SSSD into one category with three "Severity Specifiers" (mild, moderate, severe).

    They are also suggesting dropping the "Complex" descriptor.

    So CSSD and SSSD would be merged, with three "Severity Specifies" (mild, moderate, severe), and called Somatic Symptom Disorder instead of the term Complex Somatic Symptom Disorder that they originally suggested.

    So the third (current) draft proposals look like this:

    Somatic Symptom Disorders

    J 00 Somatic Symptom Disorder (replaces separate categories for 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


    These are the criteria for J00 Somatic Symptom Disorder

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


    An additional diagnosis of Somatic Symptom Disorder could potentially be applied to patients with any disease/medical condition if the clinician considered that the patient's response to their somatic (bodily) symptoms was "excessive."

    The Work Groups proposals would allow for dual diagnosis of Somatic Symptom Disorder + a "well-recognized organic disease" or Somatic Symptom Disorder + a so-called "functional somatic syndrome."

    So if a patient has, for example, angina or diabetes but the clinician considers the patient is excessively distressed by their somatic (bodily) symptoms or that their adaptation to their illness is "maladaptive" or that they are excessively anxious about their symptoms they could apply a Dx of Somatic Symptom Disorder + heart disease, or SSD + diabetes.

    Or if a patient has a so-called "functional somatic syndrome" (under which are frequently lumped IBS, FM, CFS, CI, CS, GWI) but the clinician considers the patient is excessively distressed by their somatic (bodily) symptoms or that their adaptation to their illness is "maladaptive" or that they are excessively anxious about the symptoms they experience they could apply a Dx of Somatic Symptom Disorder + FM or SSD + CFS etc.

    Or in the case of a child, if the parents were felt to be excessively concerned about a child's or young person's illness or somatic symptoms, an additional Dx of SSD could be applied.


    Given that these constructs of "excessive distress," "maladaptive response to illness or somatic symptoms," "disproportionate or persistently high level of anxiety about health or symptoms," "excessive time and energy devoted to symptoms or health concerns" are highly subjective, these proposals are no more valid, no more scientific and no safer than the already controversial categories they are intended to replace.


    If the SSD Work Group needs a good example of the implications for these proposals for patients with so-called "functional somatic syndromes" and why they should ditch their proposals they would do well to scrutinise what is happening in Denmark to Karina and her family:

    http://forums.phoenixrising.me/showthread.php?17754-Very-sad-news-from-Denmark
    http://www.facebook.com/pages/Dansk...-myalgisk-encefalomyelitis-ME/122701491151136
  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Thank you, Laura.

    I hope that our patient groups, medical, researcher and allied professional advocates will take this opportunity to again submit comment.
  6. laura

    laura Senior Member

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    As a PWC and therapist I submitted comment previously. I will reexamine all the new changes and see how I might again submit comment to give voice for us ME/CFS'ers.

    Anything you think I should highlight in particular?
  7. alex3619

    alex3619 Senior Member

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    Its psychobabble indeed, coined by R.D. Rosen in 1975 in a book entitled, well, Psychobabble. I have a copy now but it doesn't look very good although I have yet to read it so cannot be sure. It looks like the name was the best thing to come out of it.

    The babble is also irrational. Symptoms plus criteria = psychiatric. Symptoms plus not criteria = psychiatric. They fail to explain the problem with the psychogenic inference. Have they exhaustively tested for all known physical causes? I doubt it. How about causes that are as yet undiscovered? Clearly they haven't tested for those. Let me give an example:

    You have the symptoms to qualify for the disorder in question, whichever it is. You get diagnosed.

    Later your close sibling is found to have an entirely different disorder which has similar symptoms. You get tested and you have it too - by objective measures. So is the psychiatric diagnosis wrong? Clearly as you have now explained your symptoms. However one little gap and they might claim hey, this unexplained symptom is enough for a psychiatric diagnosis.

    Helicobacter pylori and peptic ulcers are a case in point - once considered to have psychogenic causation, now known to have a requirement for this pathogen. Is this enough for the idea to be dropped? No. Some with H. pylori do not have peptic ulcers. So, they reason, you need the pathogen AND the mental illness to cause it. This is revealed in the book White edited Biopsychosocial Medicine. Gods of the gaps indeed, if you leave a tiny gap then of course it must be :confused: that the gap is due to a mental illness.

    In computing the type of thinking they use is called the closed world assumption. They simply presume no other facts or possibilities exist. Sykes has labelled this the Psychogenic Inference and clearly shown it to be false.

    The parallels with astrology are high. This is mysticism in the modern age, hiding in plain sight.

    Let me highlight something:


    The whole psychogenic thing is a mass Fictitious Disorder Imposed on Another. They ignore the biomedical evidence. They ignore basic reason - they use irrational diagnostic presumptions (the false psychogenic inference). They make false claims about the effectiveness of their therapies. So any who agree with the definition of this disorder and would diagnose ME as a psychiatric condition has a psychiatric condition in which they falsely claim the patient is a psychiatric patient. Go figure. The majority of psychiatrists are crazy by their own definition!

    Bye, Alex

    PS The hardest one of these four criteria to pin on them is number one. Number 2 is really about pinning a different illness on someone than what they have. Number 3 - that might be hard. They have so many rewards for doing this - maybe fraud is a better diagnosis? If we reject that we are back to factitious disorder. Point 4, well, I have another disorder but its not psychiatric: M.E.

    So back to number one. The designation of symptoms is mostly theory based. They are nearly always subjective, as in possible (though not necessarily probable) but usually unprovable. Hence insisting they are real, with no alternatives or considerations, is a logical falsification. The only difficult part is the "identified deception" bit. I identified it, but that would not be considered sufficient. What are their criteria?

    PPS Now that I have said this, clearly I have Factitious Disorder Imposed on Another, and since I am imposing it on most of a profession, clearly I have a bad case of it. Oh darn. ;)
  8. Don Quichotte

    Don Quichotte Don Quichotte

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    I have been thinking about the issue of the so-called "conversion" disorder for quite a while.

    The most striking point to me, is that the criteria used to diagnose this illness could fit any disease.

    Except for one- the ignorance of the specific physician, the specific field or the entire medical profession.

    I find it quite problematic to base a diagnosis, mainly and only on the ignorance of those who give it.

    Theoretically, a patient with diabetes can be seen by a physician who has never heard of diabetes, never learned about the symptoms of this illness, never learned about the tests required to diagnose it and never learned how to manage it.

    This patient would have a cluster of somatic symptoms and unusual behaviors- he would be constantly thirsty, drink enormous amounts of water, my have fainting episodes and sever weakness.
    Those symptoms would quite likely be distressing and interfere with his/her normal life.

    He would likely be concerned about his illness and even more so when met with the blank faces of his physicians, or possibly due to his wasting and weight loss may be advised to eat more carbs which will lead to worse symptoms and then be blamed for not responding to the excellent treatment that works so well in other patients.

    This is just one example, but I can't think of any illness,( including cancer, stroke), that could not be diagnosed as "conversion/functional/somatic. etc." if you just go by the symptoms, normal emotional response to being ill (and even more so when you are being in essence blamed for your illness).

    Many recognized (and even treatable) diseases can have one major symptom or a cluster of many, seemingly unrelated symptoms. Some are well defined and can be diagnosed by a single test, most are more complex and may require a combination of symptoms, signs and test results. Some are constant, some are intermittent, some improve with time, some get worse with time. Many patients, even with serious and life endangering diseases will have some relief with emotional support and other similar interventions even if it doesn't alter the course of their illness.

    So, for a physician in the clinic, the diagnosis of conversion disorder (or what ever name you want to call it) adds nothing to just saying- I really don't know what this is. It doesn't provide any knowledge regarding the pathphysiology of the illness or its expected course, doesn't dictate any form of treatment, doesn't provide prognostic information.
    So, with regards to patient care there is no benefit in this diagnosis.

    A diagnosis in general, is an imperfect tool, which is meant to stratify patients, to inform the optimal treatment and also expected course of the illness (prognosis). If it doesn't do either, it is quite useless.

    On the other hand, there is a lot of possible harm with this "diagnosis", because it makes the physician, the specific field or the the entire medical profession feel comfortable with ignorance/ lack of knowledge and understanding. And we should never be comfortable with that, because it is our discomfort with our lack of knowledge that leads us to relentlessly search for that knowledge, even when it is hard to find it.
    Valentijn and merylg like this.
  9. Don Quichotte

    Don Quichotte Don Quichotte

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    This is an interesting way of looking at it.

    This reminds me of what I once said to an extremely ignorant and arrogant neurologist, who suggested that I could benefit from some form of psychological intervention.

    I said, that I don't know if this kind of intervention could or couldn't help me, but there is no doubt in my mind that for him it would be of major benefit. As, possibly it could help him develop some better human skills, which in my opinion are quite essential for someone who wants to work as a physician.

    His reply (trying to be funny about it) was that his condition is too severe to be helped by a brief psychological intervention, and he doesn't have enough money to pay for the very long treatment he would need.

    I fully agreed with what he said. And needless to say he never saw me again in his clinic.

    I seriously think that quite a lot of those people are finding ways to deal with their own psychological problems by imposing them on others.
    It is not all psychiatrists. In fact, I believe it is only a minority of them.
    Most, like Eliot Slater, are not ready to accept this "waste basket" diagnosis.

    I know of quite a few patients, including myself, whose life was saved by wise and thoughtful psychiatrists who insisted that they have a serious physical illness that needs to be properly diagnosed and managed.

    I think there are a lot of politics and other interests involved in the seemingly academic/ medical decisions of the DSM-V.

    Like I have said, I don't think it is most of the profession, it is just a (unfortunately highly influential) minority.
    So, this makes your case much less severe.

    In fact, I have just found a letter from a "leading expert" neurologist who was involved in my care, which is some proof for my point.

    "...psychological input may sometimes be helpful-however conventional psychiatrists are often not only of no positive help, but can be most unhelpful by stating that there is nothing psychiatrically wrong with the patient-all they mean is that the patient doesn't have a recognized major psychiatric disorder. Such problems are best dealt with by specialized psychiatrists, but they are few and far between."
    alex3619 and Merry like this.
  10. Sean

    Sean Senior Member

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    These sort of highly subjective criteria are just a wide open invitation for incompetence, misuse and abuse to proliferate, and a perfect get-out-of-jail-free-card for the profession to completely avoid accountability for same.

    This profession really is totally out of control.
  11. Valentijn

    Valentijn Activity Level: 3

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    I wonder how they intend to define:
    Is there such a thing as devoting excessive time to health concerns when you're debilitated to the point that you can't leave the house and doctors are unwilling or unable to help? I'm pretty sure my shrink thinks I fulfill this criterion just by going to specialists for tests and hanging out on this forum.

    I'd be more worried about someone that expresses little or no interest in their symptoms or health concerns. Though I'm sure the psychs have that angle covered too :D
  12. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    [Content edited 9 June 2012]

    Note that the criteria for SSD for Draft 3 have loosened compared with Draft 2, presumably to accommodate the absorption of SSSD, which had fewer criteria to be met (and duration of > One month).


    For Draft 3 Somatic Symptom Disorder it is proposed to merge CSSD + SSSD and drop the word "Complex")

    And for Draft 3, there are three new specifiers: Mild, Moderate and Severe

    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"


    I am in the UK; starting next week, I shall be alerting, once again, UK patient groups to the changes and lobbying, once again, for them to submit comment.

    Last year, the Coalition 4 ME/CFS (which includes Phoenix Rising) launched an awareness campaign with not too much time left before the public comment period closed, though fortunately, APA extended the comment period for a further four weeks.

    This year, the comment period is only six weeks. Because of family health problems and business commitments, I am not able to undertake awareness raising internationally. This is a time sensitive issue and perhaps Cort might give consideration to this thread being made a Sticky.

    This needs a number of dedicated individuals to form an ad hoc group to contact US patient orgs and professionals - I do not know whether the Coalition 4 ME/CFS is planning to raise awareness this year.

    Previous submissions from 2010 and 2011 are still archived on my site and I expect I shall open a page on my site for this year's submissions from orgs, professionals and lay stakeholders.

    Suzy
  13. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Submissions to the first public review (February 10 - April 20, 2010): http://wp.me/PKrrB-AQ

    Submissions to the second public review (May 4 - July 15, 2011): http://wp.me/PKrrB-19a


    DSM-5 SSD Work Group submissions 2012 (May 2 - June 15, 2012): http://wp.me/PKrrB-1Ol

    I shall be adding Peter Kemp's, who has already published.

    If you are aware of patient groups and professionals who are submitting, I should be pleased to publish copies on my site. There will be a section for patient submissions, too, as in previous years.

    Suzy Chapman
  14. PhoenixDown

    PhoenixDown Senior Member

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    Couldn't have said it better myself.

    Edit: Embarrassing mistake (need more sleep).
  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Last chance to tell SSD Work Group why it needs to ditch unsafe and scientifically flawed proposals + Peter Kemp's submission to SSD WG:

    http://wp.me/pKrrB-26q
  16. taniaaust1

    taniaaust1 Senior Member

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    Does this mean that anyone who may only have issue with unknown caused headaches or stomach pain or any other unexplained symptom.. and is worried about the why .. will be diagnosed with having this psych issue?

    I really agree that the mental health profession is way out of control. This so called mental heath problem should be removed. It will make many patients unable to keep seeking the cause of their issue from doctors, due to being placed in mental health field.
  17. alex3619

    alex3619 Senior Member

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    In reply to Don Quichotte, post 29, there is a question as to numbers who think the DSM is right, or nearly right, the numbers who disagree on conversion disorders and the like, and the number who acquiesce - who give consent by silence. I am encouraged by the large numbers of psychiatrists who have objected. I am concerned about the huge numbers of medical professionals who have said nothing. Many probably feel its not their place, its not their area of expertise, or its someone elses problem - or they kind of agree but are not sure, so don't get involved as they are too busy. "Too busy" is a huge problem in these matters. I understand that medical professionals are kept busy beyond the demands of many other professions. As individuals I could probably name on the fingers of both hands medical professionals who I think have substantive responsibility for these failures. I can also name a somewhat larger number who are fighting it. Most of the rest are failing to engage. This is a situation in which each individual physician has little to be blamed for, but the profession as a whole has a lot to be blamed for, especially professional organizations. If the medical profession were to seriously engage these issues they could be resolved in a generation. Failing to engage means generation after generation of bad medicine.

    I agree that these definitions are a licence to call almost anything psychiatric. If anyone has nonstandard symptoms with almost any disease then it coudl be classed as a psychiatric comorbidity. If the entire disease, as in MUSes, has nonstandard/unexplained symptoms then its the same problem but worse. One of the huge issues is that, in the case of CFS or ME, hundreds of things can be found wrong with patients if sufficient testing is done, but none of this testing is routine, and the testing facilities that are necessary cost a small fortune and are not well known. Who does full genomic profiles? Nobody yet. Who does a full proteomic profile? Nobody yet. At the level of genetic polymorphisms and proteomics I expect to see results in time. Given the number of biomarkers being tracked, and which seem to correlate with severity, I expect to see a better understanding in the relatively near future. Indeed it is possible that all that is needed is half a dozen tests - pick the leading biomarkers and run them all.

    So the issue is not just that the diagnosis is on the basis of not understanding the patient situation, its also on the basis of not performing sufficient testing. Such testing offers no value yet as treatments are not well developed, so there is an economic issue that such tests are not effective, but at the same time it cannot be argued that the lack of test data means its a psychiatric issue. If the psychiatrists were forced to perform the kinds of extensive testing necessary to rule out physical causation the costs would climb by orders of magnitude and the health insurers would slam down hard on the psychiatric claims. This is diagnostic criteria driven by guesswork not science. I think psychiatry can do a lot better - and they need to do better. Holding on to old Freudian diagnostic labels like conversion disorder is a bad idea.

    I too have been helped by psychiatrists - it was a psychiatrist who confirmed my diagnosis as CFS in 1989. Its not as simple as them bad, us good. This is a case of the profession being controlled by special interest groups. I wish more medical professionals would take a little time to investigate and then speak out.

    Bye, Alex
    merylg likes this.
  18. Don Quichotte

    Don Quichotte Don Quichotte

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    Hi Alex,

    After I wrote a long post explaining why I don't think we can really influence those decisions, I decided that you are right and we should at least voice our opinion. Possibly, someone will take it seriously.

    This is a complex issue, because I think many of them are not aware of the extent or the consequences.
    taniaaust1 likes this.
  19. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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  20. Esther12

    Esther12 Senior Member

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