The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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DSM IV proposed reforms for DSM 5: URGENT: Submissions needed NOW. Help is here!

Discussion in 'Action Alerts and Advocacy' started by insearchof, Jun 3, 2011.

  1. insearchof

    insearchof Senior Member

    Your help is needed NOW!



    Put aside:

    XMRV, WPI Fund Raising, Science invites to retract papers, Pace Trial Concerns

    for a day or two.


    The American Psychiatric Association (APA) is calling for its second public review and comment period for the proposed draft revisions to DSM IV and the criterias for existing and new mental illnesses.

    We have less than 2 weeks (12 days) to raise our concerns !

    The deadline for submissions is 15th June 2011

    The APA is in the process of modifying the manual it uses to classify and diagnose psychiatric illnesses. It is moving from DSM IV to DSM 5

    ME CFS FMS are complex illnesses, largely misunderstood and currently seen as pyschosomatic disorders.

    The changes proposed to the Somtaoform illnesses of DSM IV and the way some diagnostic definitions have been currently drafted for the proposed DSM 5 will mean that should these go through in their current format, then as a group we will become quite vulnerable to receiving a psychiatric diagnosis in addition to our existing diagnosis(es) be they ME CFS FMS or XMRV.

    These changes are proposed to operate as a bolt on diagnosis to all medical conditions.

    Should this go through, I anticipate a large educational campaign by the psychiatric lobby. Should this happen, it is not hard to see us getting a somatoform psychiatric diagnosis in addition to our existing ones, and how our existing diagnoses ( in the context of medical treatment and care), could become secondary . :(

    Should that happen, then adequate medical investigation of underlying symptoms, co existing undiagnosed organic disease, treatment and care may be very difficult to secure. :(

    These changes affect Americans directly, but the DSMs are also used to varying degrees outside of the USA and so stand to affect us all.

    Aside from stigma and the possible inability to receive adequate/appropriate health care to address and or manage biological symptoms, the reforms also have implications for:

    * general research,

    *the law

    *who is and who might not be regarded as mentally healthy

    * who might or might not be regarded as disabled (which may be especially relevant under insurance schemes)

    *travel as I understand a diagnosis of mental illness may result in visa refusals in some countries?

    Here is what you can do :thumbsup:

    1. write a brief submission and

    2. tell one other professional and ME CFS FMS org about this with a request they put in a submission too.

    3. provide a copy to ME Agenda / Suzy Chapman for inclusion on her website.


    *other allied health care workers,
    *health institutes,
    *Law Societies,

    If your late to this topic:

    No need to worry

    I have provided a little over view with a list of some arguments to help you write a submission.:D

    There are probably others but this is designed to give you a start.

    Keep in mind:

    It does not have to be long. :headache:

    Select one or two points that concern you most if you want to keep it simple. :thumbsup:

    Add a personal anecdote :mask:

    If you wish to use any criticisms listed feel free but please do not cut and paste.

    Put the ideas in your own words because to be effective the submissions should be your own.

    I do not think it would look good if the APA receives hundreds of template or pro forma replies. :cool:

    SO COME ON! All of you 4,000 plus intelligent forum members! Take some time out from posting or lurking here and knock up a short submission! You can make a difference! :victory:

    For how to submit:

    For details on how to make your submission to the APA, please see Suzy Chapmans post here:

    And here:!&p=184460&viewfull=1#post184460

    Following sites and Forum threads may help:

    DSM 5 ME Agenda Web Site:

  2. insearchof

    insearchof Senior Member

    The following is for anyone that has come in late to this subject.


    1. What is the DSM 5 and who is responsible for its modifications?

    The APA is responsible for publishing the diagnostic manual on psychiatric illnesses. This is called the Diagnostic and Statistics Manual (DSM). It defines and classifies psychiatric illness

    Currently APA is moving from DSM IV to DSM 5. Roman numerals are no longer employed.

    The group within the APA responsible for drafting DSM 5 is called The Somatic Symptom Disorders Working Group (the working group)

    2. Terminology

    What is a Somatic Illness?

    Somatic comes from the Greek word meaning body

    In medicine it means of or associated with the body. Therefore somatic symptoms simply means symptoms of the body.

    When the psychiatric arm of medicine use this term this is precisely what they mean: an illness of the body. Using this acknowledged medical term, the field of psychiatry believes that there are some somatic illness or symptoms of the body that are caused by a psychological dysfunction. The term somatic is a general medical term and as such, is not taken to mean that illness is caused this way only that the symptoms are of the body.

    What is somatisation ?

    Somatisation refers to the reporting of a large number of body symptoms to a doctor.

    Where they fall into a recognised pattern, this might point to a functional somatic syndrome. CFS, FMS, IBS are examples of such

    Health Anxiety (previously referred to as Hypochondriasis) is a related condition and is understood as excessive concerns about health and illness with a preoccupation of fear that they may have a serious disease. This persists despite medical evaluation and re assurance.

    3. What changes are being proposed by the APA?

    The changes include a proposal to change the existing classification from Somatisation disorders to Somatic Symptom Disorders

    Somatisation disorder under prior DSMs : described people who have a history of many medically unexplained bodily symptoms (MUS) that started before the age of 30 years and which have led to repeated visits to doctors and/or significant impairment of occupation or social functioning.(1)

    4. What are the reasons for these changes?

    Doctors found the old terms confusing and were not fully utilising existing diagnoses

    Different definitions meant true prevalence of the illness is not known, but is believed to be higher in clinical practice than initially thought

    Some diagnoses required many symptoms and that they be present for many years and some are only concerned with current symptoms. However symptoms wax and wane

    Persons in need are going without treatment

    Old diagnoses place too much emphasis on medically unexplained symptoms (MUS)

    The term MUS is undesirable because:

    o It creates mind body dualism and many organic diseases are also can have cognitive disorder

    o Patients mistake this term to mean medically undiagnosed and it creates tension
    Between doctor and patient

    o MUS cannot be reliably assessed

    o They create an un necessary financial burden to the health care system

    To address these concerns a new classification and will merge a number of diagnostic categories together. This is further justified because the illnesses share:

    o Medically unexplained symptoms
    o somatic symptoms and cognitive distortions
    o involve presentation of medical symptoms and concerns about medical illnesses

    The workgroup has combined the following old diagnoses:

    Somatoform Disorders,
    Psychological Factors Affecting Medical Condition (PFAMC), and
    Factitious Disorders

    into one group entitled Somatic Symptom Disorders

    This change will also involve a merging of the following existing diagnostic classifications

    Somatization disorder
    Undifferentiated somatoform disorders
    Pain disorder

    Factitious disorder will now be moved to the new classification of Other Disorders
    So the chapter in draft form, for Somatic Symptom Disorders presently looks like this:

    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
    J 05 Other Specified Somatic Symptom Disorder (The work group has not yet proposed criteria for this disorder.)
    J 06 Unspecified Somatic Symptom Disorder | Pseudocyesis

    4. Complex Somatic Smyptoms Disorder (CSSD) is the diagnosis category most relevant and which makes persons with ME and CFS most vulnerable to a psychiatric diagnosis.

    It is not a reclassification or replacement of the existing medical criteria for CFS (Fukuda or other criteria). It will operate in addition to it. It will also apply equally to persons with all other organic diseases. Ie: cancer, heart disease, diabetes. Etc.

    5. How do you qualify for a psychiatric diagnosis under CSSD?

    There are two arms to this diagnosis.

    The first has two main elements that must be present

    (i) One or more symptoms that must be distressing or interfere with daily activity
    (ii) Symptoms must be Somatic

    Somatic symptoms alone (i.e. symptoms attributable to irritable bowel symptom) without cognitive distortion, will not be enough to attract this diagnosis.

    If this arm is satisfied then the following three criteria must be satisfied

    1. Somatic symptom or symptoms
    2. Excessive thoughts, feelings, behaviours related to symptoms or associated health concerns
    3. Chronicity: present for more than 6 months

    1. Somatic Symptoms

    (a) There must be one or more somatic symptoms AND
    (b) they are distressing and or result in significant disruption to daily life

    2. Excessive thoughts, feelings and behaviours related to symptoms.

    Two of the following must be present

    (a) High level of health related anxiety
    (b) Disproportionate and persistent concerns about medical seriousness of symptoms
    (c) Excessive time and energy devoted to these symptoms and or health concerns

    3. Chronicity

    Any symptom(s) need not be continually present, but the state of being symptomatic exists for 6 months or more.

    Where there is a predominance of one aspect of meeting this criteria, optional diagnosis may apply.

    For example if there are minimal symptoms but high related anxiety (previously hypochondriasis) the diagnosis of illness anxiety order may be more appropriate
    Those whos predominant symptom is pain, might be more appropriately be diagnosed with adjustment disorder or psychological factors affecting a medical condition.

    So CSSD may also serve as a portal for other such psychiatric diagnoses as well

    6. What illnesses will be caught by CSSD and other SSD classifications?

    CSSD criteria will operate as an addition to all existing medical illnesses, whether it is a well recognised organic disease cancer, heart disease, diabetes or a syndrome, such as ME CFS FMS. It will operate in relation to one symptom or many and where there is the defined cognitive distortion.

    7. How is it likely to affect persons with CFS & FMS?

    It is believed that all persons who:

    (i) may be eligible for or
    (ii) who in fact have a diagnosis of ME CFS FMS or another syndrome,

    would be vulnerable to this psychiatric diagnosis and assessment.

    Where a patient has an existing diagnosis of ME CFS FMS, they may receive this psychiatric diagnosis in addition to their existing diagnosis(es). It will therefore bolt onto, your existing medical conditions.

    It may also be used as consideration for other psychiatric conditions, where the number of symptoms that create anxiety are lower than those commonly associated with CSSD (i.e. anxiety disorder illness) etc.

    SSDs are likely to be treated with CBT and antidepressants.

    Further medical testing for persons with MUS and a SSD diagnosis may well be seen as unnecessary and be denied.

    Although it remains unclear, these psychiatric diagnosis might also possibly affect:

    *insurance payments
    *disability support entitlements
    *further medical care and treatment
    *the right to travel (a mental illness may preclude entry to some countries)

    8. Why persons with ME CFS FMS may be vulnerable

    1. These illnesses present with a multitude of symptoms that cause distress and interference in daily activity

    2. Symptoms fluctuate in number, duration and severity and many persist for more than 6 months.

    3. Symptom number, type and variability make these illnesses stand out from others and carry an understandable level of anxiety. The new proposed CSSD diagnoses provides no objective marker as to what constitutes high and or excessive levels of anxiety or concern or behaviour to assess the complex illnesses or for persons with multiple health issues.

    4. Levels of severe disability means many patients cannot make regular attendances to a doctor and repeating their symptoms or concerns over a period greater than 6 months may put them at risk for a CSSD diagnosis.

    5. Current attitudes and a lack of adequate medical care can make attendances to doctors or ER an anxious affair, which might be mistaken for general anxiety about symptoms.

    6. A lack of understanding on the nature and complexity of the illnesses by many doctors currently causes:

    *patients being views as hypochondriacs
    *patients health issues as being too difficult and time consuming

    and this presents a danger that such doctors will assign these diagnoses and may in some instances choose to treat this as the primary diagnosis. This may preclude a patient seeking further medical assistance for the management of symptoms or investigation of other organic diseases.

    9. Will the new SSD diagnoses lead to an increase in psychiatric diagnoses?

    The APA remains uncertain but states:

    Studies suggest that more than 75% of hypochondriasis patients would meet the diagnosis for CSSD. Those with high illness anxiety and minimal symptoms that fit CSSD would meet and more appropriately be diagnosed with illness anxiety disorder under DSM V proposals. (3)

    As many doctors currently view ME CFS and FMS as hypochondriacs the above statistic indicates the danger that exists for patients to be assigned to this diagnostic criteria.

    It might have been a good idea for the APA to know the impact of this in relation to syndromes that can sometimes be initially dismissed as simply random medically unexplained symptoms. With over 115 syndromes alone, as it may place a large demand on existing psychiatric services that cannot be met. There is evidence to suggest that this is a reasonable possibility based on events overseas. (4)


    1. Creed, Henningsen, Fink: Patients with medically unexplained symptoms and somatisation a challenge for European health care systems a draft White Paper for the European Association for Consultation-Liaison Psychiatry and Psychosomatics (EACLPP) MUS working group. See:

    2. APA Rationale for DSM 5 modifications

    3. Ibid

    4. See fn 1

    Further good reference material can be found here:
  3. insearchof

    insearchof Senior Member

    Here is a list of concerns regarding the proposed changes to DSM 5 and CSSD which you might find useful when putting together your own submission.

    GENERAL CRITICISMS of DSM 5: SSD and CSSD PROPOSED REFORMS and as they related to persons with ME CFS FMS

    1. Extensive medical literature points to biophysical nature of the illnesses, which vary in sub set. These findings require a physician to investigate patients further and attempt to manage their symptoms.

    2. Missed diagnoses in CFS is quite high (75%) and include, heart, thyroid, pancreatic, adrenal and other diseases and missed diagnoses (Hyde, B; Miraz)

    3. The tension between doctors and patients created by the term medically unexplained symptoms, being mistaken for medically undiagnosed symptoms serves the purpose of reminding physicians to consider missed diagnoses.

    4. Given the above matters, it would be in the best interests of patient care and the legal liabilities of psychiatrists and physicians that term MUS remain and or the criteria for CSSD be further qualified or narrowed.

    5. The outcome of these reforms might result in patients avoiding or not receiving adequate medical care and attention for symptom management and or co existing disease states. This will result in unnecessary harm and suffering.

    6. Patients may take to doctor shopping to avoid a diagnosis which is undesirable in the management of a complex illness

    7. Should a CSSD be seen as a primary diagnosis, over time by some PWME CFS FMS physicians this would undermine over 80 years of medical research into these illnesses and skew important statistical data relating to prevalence, health care and other issues.

    8. SSD and CSSD diagnoses will not lessen perceived costs associated with MUS, but add to them. Should health care costs associated with MUS be a concern then the answers may lay in:

    *Further diagnostic education for physicians
    *Reforms associated to clinical consults for the diagnosis and or management of complex illnesses.
    *Centers for the diagnosis of complex and or rare diseases
    *Additional funding for biomedical and biotechnical research

    9. An increase in somatoform illnesses is thought likely, but there is no information provided on the pressure this would put on existing psychiatric services and the ability of patients to access them.

    10. There is no consideration given to legal, economic and societal costs. Economic impacts and flow on effects may be significant and do not appear to have been addressed.

    11. Statistical data on the prevalence of somatoform illnesses fluctuates widely. This may be due to the existing diagnostic definitions. However the data does raise the question as to how prevalent the illness really is, to justify the current proposals.

    12. It is also noted that the rationale document authored by the APA contained a number of references to unpublished and incomplete studies. Does this suggest that the reforms are premature?


    APA Rationale Document

    EACPPL draft White Paper here

    Submissions made by other advocates here:

    Data on misdiagnoses might be helpful here:
  4. insearchof

    insearchof Senior Member

    You need to register and submit online.


    Go to

    This page takes you directly to information on the SSD, CSSD criteria and at the foot of the page you will see the following link to help you register and to upload a submission:

    Registration link:

    The SSD page with all the category listings can be found here:

    Follow and complete the registration process.

    You need to do this in order to make a submission.

    Also see the tips given below.


    Due to site glitches that can be experienced from time to time and or heavy not leave your submission until the last minute to up load.

    The earlier you get it completed and submitted the less likely you are to run into any of these tech issues.

    And this tip provided by Suzy:

    Please also draft your response offline and save a copy before uploading, as uploading editors can be glitchy and a dropped connection or a page failing to load might result in the entire comment being lost.
  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    A Strong Warning Comes From Professional Counselors (Dr Alan Frances' DSM-5 blog)

    Dr Alan Frances was the chair of the Task Force that oversaw the development of DSM-IV. Dr Frances blogs on his concerns around DSM-5 on Psychology Today and also on Psychiatric Times.

    DSM5 in Distress

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

    Who Needs DSM-5?

    A Strong Warning Comes From Professional Counselors

    Published on June 3, 2011 by Allen J. Frances, M.D. in DSM5 in Distress

    I just received a very important email from Dr. Dayle Jones who chairs the DSM-5 Task Force of the American Counseling Association (ACA). Counselors provide a wide range of therapy, rehabilitation, and support services in very varied settings (like colleges, community mental health centers, psychiatric hospitals, substance treatment agencies, and private practice).

    There are more than 115,000 licensed professional counselors in the United States (far outnumbering the 40,000 psychiatrists as users of DSM). They (along with the 93,000 psychologists, 53,000 marriage and family therapists, and 198,000 social workers) have a deep interest in how DSM 5 will affect daily work with clients.

    An ACA Task Force on DSM 5 was appointed to provide feedback to the American Psychiatric Association on proposed revisions. It has become extremely well-informed about DSM-5 and has developed an insightful analysis of the possible detrimental impacts. The ACA Task Force critique should carry great weight and cries out for a serious response (so far unreceived) from the DSM-5 leadership.

    Read full article
  6. insearchof

    insearchof Senior Member

    Criticisms from ACA- taken from the article cited by Suzy
  7. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs
    Please post the site that we are to register at
  8. insearchof

    insearchof Senior Member


    Go to

    This page takes you directly to information on the SSD. CSSD criteria and at the foot of the page you will see the following link to help you register and to upload a submission:

    Registration link:

    The SSD page with all the category listings can be found here:

    Follow and complete the registration process.

    You need to do this in order to make a submission.

    Also see the tips given above.

    Thanks glenp I have included this info at my previous post #4 earlier in the thread
  9. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs
  10. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

  11. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    "These first wave of DSM-5 Field Trials will be conducted in 8-10 academic or other large clinical settings across the U.S. and Canada using a standardized protocol developed by the DSM-5 Research Group"

    "Potential sites can include general psychiatric clinics, diagnosis-specific specialty clinics, and medical specialty clinics"

    Request for Proposals - DSM-5 Field Trial Site Recruitment (5/4/2011)

    Important Notice to Applicants for DSM-5 Field Trials in Large, Academic Settings
    This RFP is posted for informational purposes only. The deadline for receipt of proposals for DSM-5 Field Trials has now passed and the application period has closed.

    Below is a general description of the APA's Request for Proposals (RFP) for DSM-5 Field Trial site recruitment. A detailed summary of information needed from respondants to this RFP can be found by clicking here

    ( Field Trial RFP summary requirements.pdf )


    The DSM-5 Task Force is requesting proposals from academic and large general psychiatric, mental health specialty, and medical specialty settings to participate in the field trials of proposed DSM-5 diagnostic criteria, cross-cutting dimensional measures, and diagnostic-specific severity measures. Our objective is to assure that these proposed changes are subjected to rigorous and empirically sound field trials before DSM is released for general clinical and research use. As such, the American Psychiatric Association (APA) plans to field test the clinical utility, feasibility, reliability, and, where possible, validity of selected DSM-5 draft diagnostic criteria and associated dimensional measures across a variety of clinical settings. The initial phase of these field trials is set to begin in the summer of 2010 and continue through February 2011. The disorders selected for study in field trials include those with high public health significance and/or those with significant proposed changes to the diagnostic criteria. A list of the diagnoses planned for testing in the field trials can be found by clicking here. We are limiting this first round of contracted sites to locations in the U.S. and Canada but will consider international sites for the second wave of field trials. However, if international sites believe that they have the resources to carry out this wave 1 protocol, we will be happy to discuss how we can facilitate their participation.

  12. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    All published submissions that I am currently aware of are now collated on my site on a dedicated page, here:

    For last year's (February - April 20, 2010) public review submissions, you need this page:

    If you are aware of submissions by other patient organizations, please let me know, via PM.

    If you are submitting as a patient or patient advocate and would like your comment published on my site, please send a formatted or plain text copy by PM or by email direct to

    Please state, clearly, how you would like to be described, for example:

    Pippi Longstocking, patient (US)

    or if you chose not to be identified, for example:

    Carer of young person with ME, (UK)

    No email addresses will be published.

    Please redact any email addresses, street addresses and other personal details from the text of your response that you do not want published.

    If your response runs to more than around four sides of A4, I may post the first paragraph and place the full response in a Word file or PDF instead.

    I reserve the right to omit content which I consider potentially actionable or otherwise unsuitable for publication on my site.


  13. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Final push: We have till Wednesday to get comments in on DSM-5 draft criteria

    From Suzy Chapman for

    13 June 2011

    If you only do two things online this week make it these:

    1] Register to submit feedback via the DSM-5 Development website, here, and submit a letter of concern - however brief:

    2] If you know an informed and sympathetic clinician, allied health professional, lawyer, educator or social worker, contact them today and urge them to review these criteria and to submit a response as a concerned professional, or ask your state ME/CFS organization to submit a response.

    The closing date for comments in the second DSM-5 public review is Wednesday, June 15.

    Please make use of these last three days [now two] to tell the APA why the SSD Work Group needs to rip up these proposals and start over again.


    Proposed criteria are set out on the DSM-5 Development site here:

    The CSSD criteria are here:

    More information on registration and preparing submissions here:

    For examples of last year's submissions, go here:

    Copies of this year's submissions are being collated on my site, here:

    If you are a patient organization, professional, patient, carer or advocate and have already submitted and would like a copy of your comment added to my site, please send a copy to
  14. Carryon

    Carryon Mike Munoz

    Littleton, CO
  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Last year the APA said the facility to submit would remain open to midnight US time on the day of closure and I expect it will be on Wednesday.

    (There is no news of any extension.)

    I hope everyone who has posted here today will also be sending a response (however brief) to the APA or endorsing the submission of one of the patient groups.

    All patient org responses published so far that I am aware of are up on my site here:

    Last year's here:

    I am also posting patient org responses in this thread:

  16. Carryon

    Carryon Mike Munoz

    Littleton, CO
    CAA just added their (new) comments on Facebook
  17. laura

    laura Senior Member

    Southern California
    Hi All,
    As a licensed psychotherapist, I want to *strongly* encourage all readers of this thread to write letters! Today, it's not too late!

    Those outside the therapy/psychology world are not aware of the DSM; however, as THE manual for diagnosing mental illness, it has an ENORMOUS impact across the medical field. The proposed changes would make us mentally ill simply because we have symptoms and they haven't yet figured out what is making us sick!
  18. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    CFIDS commentary on DSM-5 + their reponse to SSD proposals in this post here
  19. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs
  20. Sing

    Sing Senior Member

    New England
    Just successfully posted my letter

    I just posted my letter, and sent a copy of it (which lost some formatting) to Suzy Chapman's site--I was trying to follow so many threads and links, I may not have posted it right where our letters are being collated, but she will hopefully get it. My letter definitely made it to the DSM site, and the correct page for comments, as they sent me back a copy and a thank you. Phew!

    Race to the finish line, today!


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