International ME/CFS and FM Awareness Day Is On May 12, 2018
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DSM5 - Ticket back to Reevesville

Discussion in 'Action Alerts and Advocacy' started by Khalyal, Feb 12, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    That's a well done signature tag, Justin :). While I obviously don't agree with it - I think we should support both groups because they're both doing good work and in different areas - I get where you're coming from (and admire how you did it). Hope you feel comfortable in taking it down at some point. :)
  2. Dr. Yes

    Dr. Yes Shame on You

    Some Dangers Inherent In The Criteria For "CSSD"

    There are many good letters here, including the CAA's (and Andrew's!). I hope to be able to submit a decent one myself. If I can't, then I'll submit an indecent one. At the very least I'll send them a postcard ("Wish You Were Here.. Instead of Me") or a political cartoon.

    Seriously, I hope everyone sends them at least a quick email asking them to abandon the proposed CSSD category, as too many patients with purely physical diseases like ME/CFS would easily fall into the sinkhole of its vague and highly subjective diagnostic criteria. You don't have to write a long letter, just a paragraph if that's all you can manage, perhaps using an argument from any of the other letters printed here as a template.

    Some thoughts on this matter...

    From the proposed criteria for CSSD:

    The CAA's letter correctly points out that most of us could be nailed with #4 by any practitioner lacking in knowledge or understanding of CFS research (which is just about all of them!). From my own experience, it is incredibly easy for a PWC to get nailed with a diagnosis of all five of these 'misattributions'.

    First of all, they are like most psychological observations very much in the eye of the beholder... the only objective measures possible are psychometric tests, which themselves tend to be inherently flawed and often incapable of distinguishing certain physical symptoms and distress from psychological ones; thus they heavily overdiagnose psychopathology. The preconceptions and limitations of the practitioner become far too important here in this kind of diagnosis, as do highly subjective judgements; to let these potentially intrude into the realm of physical disease diagnosis is a huge mistake -- but that in a nutshell is a major problem with 'psychosomatic medicine' to begin with.

    'Anxiousness' or anxiety is a very easily and frequently over-diagnosed symptom. The concerns the vast majority of us have mirror those of HIV positive patients, but lacking a "real", "scary" disease finding like that, our concerns can simply be written off as excessive, i.e. anxiety, by someone who doesn't know much about ME/CFS. So that leads to misattribution #1.

    What constitutes a 'normal bodily symptom'? How is that defined? For example, apparently the DSM group consider 'orthostatic dizziness' a normal bodily sensation.. which is remarkably stupid, as it is not normal to experience this symptom chronically or severely. I have personally been told by a psychiatrist that my complaints of persistent and severe dizziness were 'all in my head'; several months later someone bothered to check my blood pressure sitting and standing and I was promptly diagnosed with orthostatic hypotension. It is thus very easy for us to be hit with misattribution #2.

    A practitioner who chooses not to 'believe' in CFS, or is simply unaware of some of its hallmarks, is always going to be tempted to diagnose a CFS patient with #3... for example, if the practitioner is unaware of PEM, s/he will easily mistake a CFS patient's concerns about relapse, etc from overexertion for 'catastrophizing'.

    'Misattribution' #5 is an obvious problem.. don't think I even need to comment on that one.

    Second, all too often practitioners make that central philosophical error so common in much contemporary medical/psychiatric diagnostic practice: a default diagnosis of psychosomatic illness is given in the absence of 'sufficient evidence' for physical disease. This basic flaw is actually taught to most medical/psychiatric students -- an absolutely scandalous development in professional education that needs to be addressed big-time by the medical community. Anyway, as soon as a practitioner makes this error, or strays in that direction, they will tend to see every physical complaint a patient has as a 'misattribution', and would be quick to diagnose him/her with some or all of #'s 1-5 above.

    As you can see, the CSSD category is one any of us could wind up being stuck in... most of us probably already have been informally, but having a formal label for this kind of misdiagnosis would make things a lot harder for us. The repercussions of having a psychosomatic label of any kind on your record, especially if you have a 'controversial' disease like CFS, can be staggering... insurance claims and government benefits are denied, etc etc.. This could happen to any of us, so I strongly urge anyone who hasn't already done so to submit comments to the APA as others have encouraged on this thread.

    At least draw them a cartoon.
  3. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    Like this?
  4. oerganix

    oerganix Senior Member

    Another masterful post from my Poster Pastor, Dr Yes. I'd like to see your indecent post card, if/when you send it.

    Yeah, Roy, I think that's the right idea. Love it.
  5. Alesh

    Alesh Senior Member

    Czech Republic, EU
    Do the creators of DSM-V have at least rudimentary knowledge of medicine?

    I think it is clear that it is impossible to differentiate between the proposed "Complex Somatic symptom disorder" and any disease that is currently not possible to diagnose.

    The very introduction to this concept is quite silly: "...Patients with this diagnosis typically have multiple, current, somatic symptoms that are distressing...The symptoms sometimes represent normal bodily sensations (e.g., orthostatic dizziness), or discomfort that does not generally signify serious disease (e.g., bad taste in one's mouth) or are incompatible with known pathophysiology (e.g. seeing double with one eye closed)..."

    Seeing double with one eye closed is called "monocular diplopia" and it certainly IS compatible with known pathophysiology; see Andrew G. Lee, Paul W. Brazis: "Clinical Pathways in Neuro-Ophthalmology An Evidence-Based Approach", 2003, pp.215-218:

    " Another less common form of monocular diplopia is cerebral polyopia (Jones, 1999).
    Cerebral polyopia usually can be distinguished from monocular diplopia due to ocular
    disease because all of the images are seen with equal clarity, the multiple images do not
    resolve with a pinhole, and the images are unchanged in appearance whether the
    patient is viewing binocularly or monocularly. Some patients see only two images,
    whereas others may see many or even hundreds of images occurring in a grid-like
    pattern (entomopia or insect eye) (Lopez, 1993). Some patients experience the
    polyopia only in certain positions of gaze. Patients with cerebral polyopia often have
    associated signs of occipital or parieto-occipital region damage, such as homonymous
    visual field defects, difficulty with visually guided reaching, cerebral achromatopsia or
    dyschromatopsia, object agnosia, and abnormal visual afterimages. These patients
    require neuroimaging (e.g., magnetic resonance imaging, MRI), to investigate the
    etiology of the polyopia. Cerebral infarction is the most common etiology, although
    cerebral polyopia may also occur with tumors, multiple sclerosis, encephalitis, seizures,
    and with migraine (Jones, 1999)..."

    At the same place the authors also present the ocular causes of monocular diplopia:

    "Refractive error (Woods, 1996) including astigmatism, Poorly fitting contact lens, Corneal abnormalities, Keratoconus, Corneal surface abnormality, Tear film disorders including dry eye, Refractive surgery, Corneal transplant, Lid abnormalities (e.g., chalazion, lid position abnormalities), Iris abnormalities (e.g., iridotomy=iridectomy, miotic pupils), Lens abnormalities, Cataract, Subluxation or dislocation, Intraocular lens (e.g., positioning holes, decentered lens), Retinal abnormalities (e.g., epiretinal membrane, scar)"
  6. Esther12

    Esther12 Senior Member


    How did they mess that one up?

    And how did you know all the stuff to pick them up on it?!
  7. Alesh

    Alesh Senior Member

    Czech Republic, EU
    E: "How could they mess that one up?"

    A: Very easily, since they are ignorant of any scientific progress since about the end of the 19th century. Monocular diplopia has long been considered a sign of "hysteria", completely useless and detrimental diagnosis from the point of view of people suffering from diseases that were not possible to diagnose at that time, but highly useful and convenient a diagnosis for scientifically incompetent yet highly ambitious individuals.

    E: "And how did you know all the stuff to pick them up on it?!"

    A: Everyone who attended basic school should know that "it is the brain that sees" and not "it is the eye that sees".
  8. alphahusky


    This is a really good letter. Thanks for the idea of reminding them of lawsuits.
  9. Alesh

    Alesh Senior Member

    Czech Republic, EU
    And this part of the introduction to CSSD is also quite silly: "...discomfort that does not generally signify serious disease (e.g., bad taste in one's mouth)..." The fact is that "bad taste in one's mouth" is a sign of many kinds of fatal poisoning. I remember having read that berylliosis was once considered to be of "hysterical origin" but it certainly is not a great surprise, just look to the older issues of BMJ and other "prestigious" medical journals, you will find articles about "hysterical peritonitis", "hysterical epilepsy", "hysterical tremor", "hysterical mutism", "hysterical paraplegia"...
  10. Alesh

    Alesh Senior Member

    Czech Republic, EU
    It seems CSSD will be as universal as hysteria.

    I looked just at some titles of some articles published in English in medical journals till 1950. Very strange titles of medical articles from today's point of view:

    Hysterical Fever
    Hysterical Somnambulism
    Hysterical Hyperthermia
    Hysterical Polyuria
    Hysterical Convulsions
    Hysterical Sleeping Attacks
    Hysterical Movements
    Hysterical Sweat
    Hysterical Anorexia
    Hysterical Hip
    Hysterical Rhythmical Chorea
    Hysterical Neuroses of the Skin
    Hysterical Dyspnea
    Hysterical Scoliosis
    Hysterical Facial Paralysis
    Hysterical Dyspraxia
    Hysterical Dermatitis
    Hysterical Elbow
    Hysterical Hyperventilation
    Hysterical Pain
    Hysterical Color Blindness (caused by infantile sexual guilt)
    Hysterical Congestion of the Lungs
    Hysterical Disease of Skin
    Hysterical Chorea
    Hysterical Sleeplessness
    Hysterical Toothache
    Hysterical Coma
    Hysterical Mania
    Hysterical Depression
    Hysterical Insanity
    Hysterical Muscular Contractions
    Hysterical Breathing
    Hysterical Motor Affections of the Vocal Cords
    Hysterical Vomiting
    Hysterical Sneezing
    Hysterical Amblyopia
    Hysterical Bent Back
    Hysterical Aphagia
    Hysterical Motor Paralyses
    Hysterical Psychoses
    Hysterical Blindness
    Hysterical Dysphonia
    Hysterical Joint Affections
    Hysterical Trismus
    Hysterical Edema of the Hand and Forearm
    Hysterical Deafness
    Hysterical Pyrexia
    Hysterical Anaesthesia
    Hysterical Lockjaw
    Hysterical Coxalgia
    Hysterical Breast with Melanodermia of the Nipple
    Hysterical Trophedema
    Hysterical Oedema probably due to Auto-suggestion
    Hysterical Insufficiency of Convergence
    Hysterical Deaf-mutism
    Hysterical Gait

    Some articles with especially curious title with references:

    "SUDDEN DEATH IN A CASE OF HYSTERICAL VOMITING." T Robinson - The Lancet, 1893 - Elsevier


    "FATAL HYSTERICAL HEMOPTYSIS." JA Dibrell - JAMA, 1905 - Am Med Assoc
  11. oerganix

    oerganix Senior Member

    Alesh, that list would be hysterical if it weren't so scary.

    As I recall, the 'treatment' for women with 'hysteria' was a hysterectomy. I'm sure that was effective, at least for the income of the surgeon, but what kind of treatment would there be for 'hysterical' men? A 'placebo' surgury, for removal of the erroneous illness beliefs?
  12. leelaplay

    leelaplay member

    oh my gosh - Dr Yes and Alesh - you had me laughing out loud - might have reached the guufaw state (as inelegant as that sounds). Thanks goodness I didn't have any liquids in my mouth. The neti pot is just fine with me for nasal cleansing.

    And, on a serious note, just posted to co-cure:

    Slightly Alive: My letter to APA on CSSD
    By Mary Schweitzer

    I have abnormal natural killer cell function, Rnase-L, SPECT scans, VO2 MAX
    scores, Halter top monitor; NMH/POTS; CEBV, HHV-6A, HHV-7, CMV ... and
    XMRV. One million Americans suffer in silence from my disease, without a
    diagnosis, ...
    Slightly Alive
  13. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Psychology Today: Allen Frances on DSM-5 and comment

    Over the past 12 months, Dr Allen Francis has published a number of commentaries on the DSM revision process in the media, via Psychiatric Times website and yesterday, on the site of Psychology Today. Dr Frances had been chair of the DSM-IV Task Force. He is currently professor emeritus at Duke.

    I have had a comment published, this morning, in response to his piece on Psychology Today.


    DSM5 in Distress

    The DSM's impact on mental health practice and research.
    by Allen Frances, MD

    The first drafts of DSM5 were posted two months ago, allowing the field and the public a first glimpse into what had previously been an inexplicably secretive process. Today is the last day for public comment on these drafts.

    This is a plea for continued openness and iterative interchange in the next steps in the preparation of DSM5.

    From its birth, DSM5 has been clothed with an unnecessary and distorting secrecy. The members of the DSM5 Work Groups were forced to sign confidentiality agreements which largely cut off the possibility of an open exchange with the field. Bob Spitzer, the Chair of the Task Forces for DSM III and for DSM IIIR, was the first to spot the secrecy problem. Early on, he called for an open DSM5 development process that would include postings of all minutes and of all new suggestions. He understood from vast experience that a thorough vetting was the best way to separate wheat from chaff.

    Dr Spitzer's warnings went unheeded. The Work Groups conferred largely in isolation and with little supervision from the DSM5 leadership. The circle of advisors to DSM5 was small and highly selected to reduce critical review. Field trial plans were prepared in secret. True, some Work Groups occasionally presented at scientific meetings or provided sporadic and ambiguous minutes, but for the most part the first drafts of DSM5 were created in the dark and without the benefit of the wide, contemporaneous review that characterized all the previous DSM's.

    The results were predictable. The first drafts of DSM5 are poorly written, inconsistent, idiosyncratic, and filled with suggestions that would create disastrous unintended consequences. But they were welcome nonetheless. At least and at last, their posting gave the field and the public a peek behind the curtain and an opportunity to provide guidance to the wayward Work Groups.

    Unfortunately, however, there are still crippling limitations to the ongoing open interchange that will be absolutely necessary if DSM5 is to be salvaged. The period allotted for public comment has been far too short and ends arbitrarily and prematurely today. There is no mechanism in place to inform the field and the public about the nature of the criticisms received and the Work Groups' responses to them. (By the way, there has been a notable refusal to provide any point by point responses to my own detailed criticisms despite invitations to do so). We have no idea about how the crucial revision and editorial process is meant to be carried out and no indication whether we will have another open review before field trials are scheduled to begin.

    The methods to be used for the DSM5 field test were finally posted just a week ago. They completely miss the point and are a prescription for continuing disaster (more on this in another blog). The point here is that the development of field trial methods should have begun two years ago and should have been done in an open way that would have allowed correction from the field. Instead a fatally flawed design has been offered at the last moment with no time or mechanism for iterative self correction.

    The DSM5 drafts are nowhere near ready for field testing and need to be subjected to an iterative revision process that finally allows the field an important role as contributing partner. The most obvious next step would be to post each new version of each revised criteria set (as it is being prepared) for continued real time review and comment. This would lose nothing and provide an early warning system to identify further trouble ahead. Unless the criteria sets are done right, the field trials will be a collossal waste of time, effort, and money and DSM5 may never be usable.

    Based on what we have seen so far, it is unlikely that the criteria sets will be done right unless they are subjected to continuing scrutiny and input from the field. Similarly, the field trial design is a white elephant that needs external review and radical revision if it is to become at all relevant to future DSM5 decision making.

    Time is running out and the prognosis for DSM5 is becoming increasingly grim. Let us finally have an open DSM5 process to attempt a save before it is too late.


    Public review process

    Submitted by Suzy Chapman on April 13, 2010 - 3:24am.

    I would like to thank Dr Frances for his commentaries around the DSM revision process. I hope he won't mind my highlighting that draft proposals are out for review until Tuesday, 20 April - so there is another week during which health professionals, researchers, patient organisations and the lay public can input into the review process.

    For some time now, professionals in the field, interest groups and the media have voiced concerns that the broadening of criteria for some DSM-5 categories would bring many more patients under a mental health diagnosis.

    But if the draft proposals of the "Somatic Symptom Disorders" Work Group were to be approved there will be medical, social and economic implications to the detriment of all patient populations and especially those bundled by many within the field of liaison psychiatry and psychosomatics under the so-called “Functional Somatic Syndromes” (FSS) and “Medically Unexplained Syndromes” (MUS) umbrellas, under which they include Chronic fatigue syndrome, ME, Fibromyalgia, IBS, chemical injury, chemical sensitivity, chronic Lyme disease, GWS and others [1].

    There is considerable concern amongst international patient organisations for the implications of the "Somatic Symptom Disorders" Work Group proposal for combining Somatoform Disorders, Psychological Factors Affecting Medical Condition (PFAMC), and Factitious Disorders under a common rubric called "Somatic Symptom Disorders" and for the creation of a new classification, "Complex Somatic Symptom Disorder" (CSSD).

    They are particularly concerned for patients living with conditions characterised by so-called "medically unexplained symptoms" or with medical conditions for which diagnostic tests are currently lacking that provide evidence substantiating the medical seriousness of their symptoms and the need for provision of appropriate medical investigations, treatments, financial and social support, and in the case of children and young people, the putting in place of arrangements for the education of children too sick to attend mainstream school.

    According to "Somatic Symptom Disorders" Work Group proposals:

    [Content superceded by third draft May 2, 2012]

    The CFIDS Association of America has submitted: "As drafted, the criteria for CSSD establish a “Catch-22″ paradox in which six months or more of a single or multiple somatic symptoms – surely a distressing situation for a previously active individual – is classified as a mental disorder if the individual becomes “excessively” concerned about his or her health. Without establishing what “normal” behavior in response to the sustained loss of physical health and function would be and in the absence of an objective measure of what would constitute excessiveness, the creation of this category poses almost certain risk to patients without providing any offsetting improvement in diagnostic clarity or targeted treatment." [2]

    To date, there has been little public discussion by professionals or the media of the medical, social and economic implications for patients of the application of an additional diagnosis of "Complex Somatic Symptom Disorder".

    With a week to go before this initial public review period closes there is still time and I urge professionals and stakeholders to scrutinise the proposals of the "Somatic Symptom Disorder" Work Group and to submit their concerns to the Task Force.

    Suzy Chapman, UK patient advocate

    [1] Marin H, Escobar JI: Unexplained Physical Symptoms What’s a Psychiatrist to Do? Psychiatric Times. Aug 2008, Vol. 25 No. 9

    [2] CFIDS Association of America submission to DSM-5 public review:
  14. Alesh

    Alesh Senior Member

    Czech Republic, EU
    Hi Oerganix,

    it seems that the treatment for both men and women consisted in "hypnotic suggestion", "direct suggestion" or "indirect suggestion", sometimes it was just sufficient for the cure that the patient "was persuaded" or "realized" that the origin of his or her disease was not organic but "functional".

    Look at this article "HYSTERICAL EDEMA OF THE HAND AND FOREARM" published in 1940:

    The photographs in this article of what they considered to be "hysterical edema" are alarming to say the least.
  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    UK Independent: Rethinking mental disorders (DSM-5)

    Rethinking mental disorders

    Posted by The Independent

    Tuesday, 13 April 2010 at 01:36 am

    Is promiscuity an illness? What about childhood tantrums? As psychiatrists
    set out to redraw definitions of mental disorder, controversy is

    By Claire Prentice

    Where exactly does the difference lie between extreme human behaviour and a
    psychiatric illness? The question is being asked because as a US
    encyclopaedia of psychiatry is rewritten for the first time in more than a
    decade, controversy is already raging about what goes into it, and what
    gets thrown out.

    Critics say that the revised edition of the Diagnostic and Statistical
    Manual of Mental Disorders (or DSM, as it is commonly known) will lead to
    an explosion of healthy Americans being prescribed powerful drugs.

    Patients' rights groups are angry that it will lead to more people being
    stigmatised as mentally ill. "The conditions that we grew up thinking were
    in the normal spectrum of human behaviour - sadness, disappointment,
    anger - are now considered a psychiatric or psychological disorder. It has
    become part of a national epidemic," said Alex Beam, a newspaper columnist
    and author of Gracefully Insane, a book about the history of McLean
    psychiatric hospital in Massachusetts.

    The controversy over the DSM, which is published by the American
    Psychiatric Association (APA), shows just how political mental illness has
    become in America. And with good reason. At stake is not just the mental
    health of a nation, but also billions of dollars for insurance companies,
    doctors, researchers and pharmaceutical companies. The most serious claim
    made by critics is that psychiatrists are increasingly churning out new
    syndromes at the behest of their funders in the pharmaceutical industry.

    The claim is rejected by the APA, which insists that those with a vested
    interest, such as drug and insurance companies, have no influence on the
    process. The DSM is arguably the most influential mental health publication
    on the planet. It is used by doctors, psychiatrists, nurses, researchers
    and insurers all over the world.

    First published in 1952, it is at the heart of mental health research,
    planning, policy and treatment in the US. The definitions included in the
    new edition - the first complete revision since 1994 - will determine who
    gets diagnosed as mentally ill, who receives powerful drugs, who is
    confined to a psychiatric institution instead of being imprisoned, and if
    and how much insurance companies will pay for treatment. DSM diagnoses are
    routinely used in US court cases, employment background checks and
    child-custody cases. Pharmaceutical companies also use the manual as a
    guide to which psychiatric conditions exist, and for which they can develop

    Proposed additions to this, the fifth edition of the manual, include:
    "hypersexual disorder" for those experiencing severe problems with sexual
    fantasies, urges or behaviours; "temper dysregulation with dysphoria",
    which refers to children throwing acute temper tantrums; and "psychosis
    risk syndrome", a condition attributed to eccentric or marginalised
    teenagers. In the past, the DSM has been mocked for proposing to include
    conditions such as nicotine addiction, road rage and pre-menstrual tension.

    Dr William Narrow, research director of the task force working on the new
    edition, DSM-V, says it will lead to more effective treatment of the
    mentally ill. He said, "The revisions will help mental health professionals
    to make more accurate and consistent diagnoses."

    Critics include Dr Allen Frances, the editor of the previous edition of the
    manual, who described the new proposals as "reckless". In an editorial in
    Psychiatric Times, Dr Frances described the proposals as "a wholesale
    imperial medicalisation of normality that will trivialise mental disorder
    and lead to a deluge of unneeded medication treatment - a bonanza for the
    pharmaceutical industry but at a huge cost to the new false-positive
    'patients' caught in the excessively wide DSM-V net.''

    Even small changes in wording can have serious implications. If
    requirements for diagnosis are too stringent, some who need help will be
    left out. If they are too loose, healthy people will receive unnecessary,
    expensive and possibly harmful treatment. Dr Frances describes how his
    panel inadvertently contributed to three "false epidemics": attention
    deficit disorder, autism and childhood bipolar disorder. He says: "We felt
    comfortable that our relatively modest proposals wouldn't cause problems,
    but evidence shows that our definitions were too broad and captured many
    'patients' who might have been far better off never entering the mental
    health system."

    The DSM contains a detailed listing of every psychiatric disorder
    recognised by the US healthcare system and defines how each is to be
    diagnosed. Its most recent edition, the 943-page DSM-IV, lists more than
    300 separate disorders. The proposed revisions are the result of more than
    a decade of work by hundreds of experts across the US.

    Some observers say that the ever-widening DSM net, along with the routine
    advertisement on American television and in glossy magazines of powerful
    drugs to treat conditions such as attention deficit disorder and
    schizophrenia, help to promote a widespread belief that many rare disorders
    are more commonplace than they are. "There has been a real push back
    against the DSM this time around," says Beam. "People think a lot of these
    pills that are paid for by government or insurance companies aren't
    necessary. There's a flood of soft money for drugs. We're awash in drug
    money for these nebulous syndromes."

    Many healthcare professionals say there have not been sufficient advances
    in research to merit an entirely new edition. Dost ngr, clinical director
    of the psychiatric disorders division at McLean Hospital, says, "We could
    have lived another five or seven years without a new edition." He describes
    the growing numbers of people diagnosed as mentally ill as part of a wider
    "sociological trend".

    Controversially, the editors of the new edition propose creating a new,
    all-encompassing category which they dub "autism spectrum disorder".

    High-functioning people with Asperger's disorder argue that they should not
    be in the same category as those with severe autism who cannot carry out
    basic day-to-day tasks such as dressing themselves.

    And the category dealing with eating disorders is likely to be expanded.

    Critics say the new definition of "binge eating disorder" as one eating
    binge per week for three months would apply to most Americans. But the new
    binge eating category has been welcomed by some specialists in the field,
    who said the expanded definition should lead to better diagnosis of the
    condition, more research and more treatments being covered by insurance

    The proposed changes have been posted on the internet, at, so that
    members of the public can comment during the public consultation period,
    which lasts until 20 April. In May, field trials begin and are to last for
    10 months. Then we will find out which way madness lies.

  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    I left a second comment to a new post on Dr Frances's blog this afternoon and he has left a response:

    Closure date for DSM public review process

    Submitted by Suzy Chapman on April 13, 2010 - 11:06am.

    Dr Frances, you've said in your previous blog post (DSM5: An Open Process Or Bust, 12 April) that "Today is the last day for public comment on these drafts." and "The period allotted for public comment has been far too short and ends arbitrarily and prematurely today."

    I've left a comment to that post querying these statements because there is nothing on the APA's new DSM-5 webpages that I can see which suggests any changes to the closure date for submission of comments in the public review process. No news releases have been issued by the APA that I am aware of and there are no new notices on the site or on the APA's various Twitter and Facebook sites since 9 April, when the DSM-5 Facebook site posted a reminder of the closure date.

    Could I ask that you clarify, please, whether the information you have received around the closure date has been revised in the last few days?

    I would not want to see professionals in the field and other stakeholders discouraged from submitting comments if it were the case that no changes have been made to the closure date of Tuesday, 20 April.

    Suzy Chapman, UK patient advocate


    Thanks for the correction.

    Submitted by Allen Frances, MD on April 13, 2010 - 11:38am.

    April 20 it the correct date. The next opportunity for public review will not be until May of 2011-so this would be a final week of opportunity to help influence the process before it may be too late. Also, thanks for your previous comments which were very helpful.
  17. leelaplay

    leelaplay member

    Hi Suzy, thanks for posting Dr Allen Frances' latest piece in Psychology Today. I find him so refreshing - a bluntly honest voice of experience that is also very readable!

    And thank you for your great comments, and particulary for correcting the submission date and letting everyone know that there is one week left to get submissions in.
  18. leelaplay

    leelaplay member

    Comments on DSM-5 proposals from the Mass. CFIDS/ME & FM Association

    Alan Gurwitt <> via Co-Cure Moderator to CO-CURE today


    The Board of Directors of the Massachusetts Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy and Fibromyalgia Association (Mass. CFIDS/ME &FM) has reviewed your proposed revisions of DSM-IV destined for DSM-5. Our special focus has been on your newly proposed category "Complex Somatic Symptom Disorder". Our concern is not so much about the fact that you want to simplify terms for somatoform disorders but about the particular criteria cited and the potential misuse of the category.

    We share the concern, heard from individuals and organizations around the world, that this new category might be too readily misused to include chronic fatigue syndrome ("CFS", also now known as ME or myalgic encephalopathy) and fibromyalgia as if they are forms of a psychological disorder. Most simply, *they are not now psychologically caused illnesses nor have they ever been so*. This concern doesn't come out of the blue. Here in Massachusetts it is based on two and a half decades of seeing mistaken and harmful misdiagnoses based on totally inappropriate and harmful misconceptions of what CFS and fibromyalgia are and what they are caused by.

    Our organization, celebrating our 25th year of existence helping patients with these illnesses, has seen firsthand the terrible toll exacted by the trail of misdiagnoses. Patients are tainted, dismissed, not properly treated, and often referred to equally misinformed mental health clinicians who then compound the damage.

    In our view, the key problem is *not *so much the diagnostic nomenclature as it is the wrong and hugely out-of-date conceptions on the part of psychiatrists and non-psychiatric physicians of the very nature and likely causes of both CFS/ME and FM. While it is true that there may be important psychological disturbances following onset, these are secondary.

    Over the past fifteen years, increasing numbers of researchers from around the world have pinpointed the likely biological causes, the complex pathophysiology that follows from the initial infectious or toxic triggers, and the interacting and dysfunctional multiple body systems (immune, central and peripheral nervous systems, endocrine, cellular [mitochondrial], etc) involved. Genetic and genomic factors are being elucidated. Certain viruses have long been implicated. Most recently a retrovirus, XMRV, has been implicated and is actively being studied in several centers. While no widely accepted biomarkers are currently available, many key researchers believe that it will not be long before one or more biomarkers will be found. (For example there are many changes in components of immune system functioning.)

    While there is no definitive cure as yet, forms of treatment have been developed over the years that can alleviate many of the symptoms. Here is where mental health clinicians can help; sleep disorders are common, and if there are serious secondary psychological symptoms, certain therapies can help.

    Dr. Anthony Komaroff, Professor of Medicine at Harvard Medical School and a long-time researcher in the field has said the following:
    "there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness. It's not an illness that people can simply imagine that they have and it 's not a psychological illness. In my view, that debate, which has waged for twenty years, should now be over". [1] Four years later there is even more evidence for Dr. Komaroff's assertion.

    The bottom line is that CFS and fibromyalgia are not psychological illnesses. It is then essential that the American Psychiatric Association vigorously help educate graduate and resident psychiatrists on what is now known. While the wording and criteria for "Complex Somatic Symptom Disorder" will matter so as to avoid confusing chronic fatigue syndrome and fibromyalgia with a somatoform disorder, it will be new understanding of the biological nature, proper diagnostic techniques, and appropriate treatments of these illnesses that will matter most. We consider these re-education efforts to be a responsibility of the American Psychiatric Association along with researchers and clinicians expert in the fields of chronic fatigue syndrome and fibromyalgia.

    Alan Gurwitt, M.D.
    President, Massachusetts CFIDS/ME & FM Association
    (Retired adult and child psychiatrist, Distinguished Fellow of the American Psychiatric Association)

    [1] Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA Government CDC press conference on November 3, 2006
  19. Dreambirdie

    Dreambirdie work in progress

    N. California
    Letter from a local therapist

    I asked a local therapist to write his response regarding the DSM-5 reclassification and here's what he wrote:

    "As a psychotherapist with 25 years of experience and a sub-specialty of working with people with physical illness, I have encountered countless somatic complaints with psychological roots. I have also encountered numerous cases of physical conditions which were undiagnosed, incorrectly diagnosed, and/or for which no clear understanding had yet emerged. I am concerned that the proposal to create a classification, CSSD, has the potential to narrow rather than broaden our view of a patient's presentation of symptoms, and stigmatize people who are suffering from conditions for which there is as yet little medical understanding. Fibromyalgia and Chronic Fatigue Syndrome are two prime examples.

    More than twenty years ago, I treated a young woman who presented with numerous complaints of pain. Unable to obtain a medical diagnosis, I proceeded on the assumption that she had a somatoform disorder. The treatment did not help her. In fact, I believe that it drove her into a deeper depression. Years later, when fibromyalgia was finally recognized, she was able to obtain relief from treatment that recognized that she was dealing with a real condition, not an imagined one.

    Lastly, should you make the mistake of proceeding with this classification, the elements of Criterion B are, individually and collectively, overly broad, vague, and insufficient. A person who presents with 6 months of chronic (C) pain (A), and who experiences anxiety (B, 1) and for whom that pain has assumed a central role in their lives (B, 5) is not expressing a mental disorder. S/he is dealing with a mysterious and poorly understood process. It may relieve the anxiety of the profession to be able to classify such a person's presentation, but it does nothing to relieve her/his suffering, which is our primary goal."
  20. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Hi Dreambirdie,

    I am collating responses from patient organisations, professionals and advocates submitting comments in the DSM-5 draft proposal review process on a dedicated page on my Dx Revision Watch website, here:

    I should like to add the response above. Would it be OK to re-publish this under the heading:

    Response from Therapist, Bay area California

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