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DSM5 - Ticket back to Reevesville

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

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Key documents for DSM-5 draft proposals and the public review process

    Now that I am maintaining a second website specifically monitoring the DSM-5 and ICD-11 revision processes, here:

    Dx Revision Watch

    I don't intend to contribute further to these various DSM-5 threads, nor shall I be following them on a regular basis. Previous material can be found in the 18 Page thread, started on 22 December by fresh_eyes:

    the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

    http://forums.aboutmecfs.org/showth...bby-strikes-again-DSM-5-v-WHO-s-ICD-in-the-US


    There are some important links, however, that I would like to draw attention to, today:

    All stakeholders in DSM-5 are permitted to submit comments in the public review process up until 20 April. It is an informal comment process, though you do need to register. There is no requirement to cite references or journal papers unless you want to and it does not appear that there is any restriction on length of submission.

    Mary Schweitzer has very kindly forwarded a copy of her submission to me with permission to publish on my site, here:

    DSM-5 submissions

    http://dxrevisionwatch.wordpress.com/dsm-5-proposals/dsm-5-proposals-sub-page-3/

    I shall be collating other submissions from advocates, international patient organisations and professionals on this page. So far, our UK patient organisations have remained silent on DSM-5 proposals and it is not yet established whether Action for M.E., the ME Association, AYME, TYMES Trust, Invest in ME or the 25% ME Group intend to submit comments. I shall be requesting position statements from all the above, this week.


    The new Timeline for DSM-5 can be accessed here:

    DSM-5 Development Timeline

    http://www.dsm5.org/about/Pages/Timeline.aspx



    Draft Proposals for DSM-5 Categories are published here, on the APA's relaunched DSM-5 webpages:

    http://www.dsm5.org/Pages/Default.aspx


    Somatoform Disorders, here:

    http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

    [Content superceded by third draft May 2, 2012]
  2. jspotila

    jspotila Senior Member

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    From the March CFIDS Link by the CFIDS Association:
  3. anne

    anne Guest

    Thank you!
  4. mezombie

    mezombie Senior Member

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    I'm very glad to see this!
  5. shrewsbury

    shrewsbury member

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    call for everyone to submit comments to the APA before April 20

    Submitted by Alan Gurwitt <agurcp@verizon.net>: to co-cure Feb 12 '10
    (if: my spacing and bolds)

    DSM5

    The proposed revision of the diagnostic and statistical manual used in psychiatry has been posted by the American Psychiatric Association. That fact was noted yesterday (2/10) on Co-Cure. I looked at it today with an eye towards revisions being considered for somatic disorders which previously had been listed in several categories.

    The good news is that those various categories are being collapsed into one (Complex Somatic Symptom Disorder or CSSD)

    but the really bad news is that the criteria are vague. Uninformed psychiatrists could easily include CFS here.

    Also an example reference refers to Kroneke (2002) who has written that CFS is a psychological somatic illness.


    There is limited time for comment (until April).

    I urge that the APA be deluged with comments questioning the criteria and describing the misdiagnoses and unitentional abuse of CFS/ME patients resulting from previous categories.

    The proposed new definitions for CSSD are no improvement and could make things worse.

    Alan Gurwitt, M.D. (a retired psychiatrist)
  6. shrewsbury

    shrewsbury member

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    addition to A Gurwitt's comments on DSM5

    Submitted by Alan Gurwitt <agurcp@verizon.net> to co-cure Mar 3 '10

    [if: I'm going to post this here as well as after E Shorter's comment as it seems appropriate in both places - hope that's ok)

    In the early 1990's there were a number of non-clinician writers who pontificated on the social and psychological origins of CFS. One such writer was an English professor at an Ivy League university who took the position that CFS was a cultural and psychological phenomenon peculiar to women and reflecting historical changes. Another writer, a medical historian in Canada focused on historical transitions in the diagnoses used for stress-produced psychosomatic symptoms among which he included CFS or "yuppie flu". Neither of these writers had any scientific evidence for their assumptions.Now the second writer, Edward Shorter, is apparently concerned about the revisions in the DSM series serving as the diagnostic manual for mental health specialists. I too am concerned but for different reasons. As far as I know Dr. Shorter has never recanted his early view of CFS in spite of all the scientific evidence to the contrary. At least the committee working on DSM 5 is looking for scientific evidence.

    Alan Gurwitt, M.D
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    If reproducing this very welcome news elsewhere, please note that the proposed new category is:

    Complex Somatic symptom disorder (CSSD)

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

    not "Chronic" as in the extract above.
  8. Tammie

    Tammie Senior Member

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    I was happy that the CAA are planning to write to the APA re the DSM, but not so much after reading the PR thread entitled : CAA recommends, to me, questionable article on pacing. March 2010 (it is in the General ME/CFS News section of this forum - sorry can't get the link to work)

    If this is any indication of the mindset they now have about us and what tehy may be writing re the DSM, then we are in trouble.
  9. shrewsbury

    shrewsbury member

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    DSM-5 public review: CFIDS calls for input; Mary Schweitzer submission

    MEagenda posted this to co-cure Mar 4

    DSM-5 public review: CFIDS calls for input; Mary Schweitzer submission

    This mailing may be reposted provided it is published in full, unedited and
    http://dxrevisionwatch.wordpress.com is credited as the source.


    From Suzy Chapman

    4 March 2010

    DSM-5 public review process


    The March issue of CFIDSLink-e-News reports that the CFIDS Association
    is seeking input from outside experts:


    Extract:

    http://www.cfids.org/archives/2006-2010-cfidslink/march-2010.asp

    "Advocacy Counts

    "The Diagnostic and Statistical Manual for Mental Disorders (DSM) is being
    revised by the American Psychiatric Association (APA). The proposed
    revision, DSM5, has drawn media coverage and close scrutiny since its
    release on Feb. 10. Creation of a new category called "Chronic Somatic
    Symptoms Disorder" is of particular concern to CFS patients and
    organizations. The Association is seeking input from outside experts and
    will submit a review of the biological abnormalities in CFS to APA. The APA
    will accept public comments until April 20."


    Please note that the proposed new classification is "Complex Somatic
    Symptom Disorder (CSSD)" and not "Chronic" as given above.

    The proposal is that Somatoform Disorders, Psychological Factors Affecting
    Medical Condition (PFAMC), and Factitious Disorders should be combined
    under a common rubric entitled "Somatic Symptom Disorders" and for a new
    classification "Complex Somatic Symptom Disorder (CSSD)."


    The DSM-5 public review period runs from 10 February to 20 April, so there
    are just over six weeks during which stakeholders in DSM-5 - members of the
    public, patient representation organisations, professionals and other end
    users can submit their responses.

    Please take this opportunity to comment and to alert and encourage
    professionals and international patient organisations to participate. Key
    links are provided at the end of this mailing.

    The following UK organisations have so far been silent on the DSM-5
    proposals.

    They are being contacted this week for position statements on whether they
    intend to submit a response and if so, whether their responses will be
    published:

    Action for M.E., The ME Association, AYME, The Young ME Sufferers Trust,
    The 25% M.E. Group, Invest in ME, ME Research UK.


    I would welcome copies of submissions from any patient organisations,
    professionals and advocates for publication on a dedicated page on my
    website: http://wp.me/PKrrB-AQ


    The following is published with kind permission of Mary M. Schweitzer, PhD:

    Submission to the Work Group for Somatic Symptom Disorders

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

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

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

    3. The APA has stated elsewhere that many of the changes in DSM-5 are
    intended to avoid gender biases in existing medical categories. Isn't is
    strange that the proponents of the new category CSSD have often stated 90
    percent of victims of CFS (and CSSD by distinction) are female?

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

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

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

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

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

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

    Adults in the U.S. have, in general, not been subjected to that level of
    cruelty - although doctors ignorant of the large body of literature on the
    biomedical symptoms and causes of CFS are inclined to throw SSRIs at
    patients, whether it helps them or not.

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

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

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

    In October 2009, an article published in "Science" demonstrated that 2/3
    of a sample of patients diagnosed with CFS are victims of the third known
    human retrovirus, XMRV.

    I was in that study, and I have XMRV.

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

    As mentioned, I have been diagnosed with the newly discovered retrovirus
    XMRV, only the third known human retrovirus.

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

    Perhaps that is why I suffer from recurring bouts of EBV, and have
    chronically activated cytomegalovirus (CMV), HHV-6 (Variant A), HHV-7,
    among other viruses.

    I have been sick since suffering a blackout in my office in 1994. I have
    ataxia, expressive aphasia, expressive dysphasia, short-term memory loss,
    and profound confusion (I once poured a cup of coffee into a silverware
    drawer convinced it was a cup). I suffer from constant severe pain behind
    my eyes, in the back of my neck, and in the large muscles of my thighs and
    upper arms. Even one flight of stairs is very difficult for me. When we go
    places, we have to use a wheelchair. And I used to be an avid skier.

    I cannot pass a simple Romberg test. I have abnormal SPECT scans and my
    VO2 MAX score is 15.5, lower than would be expected of my 85-year-old
    mother.

    I have been helped greatly by an experimental immune modulator, only to
    relapse when permission from FDA to have the drug was removed.

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

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

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

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

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

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

    Who, then, would benefit from creating a psychological category for this
    very biophysical disease?

    This is a question that the profession needs to answer before proceeding
    with plans for CSSD.

    Mary M. Schweitzer, Ph.D.


    -----------------------------------

    To submit a comment, register here:

    APA's new DSM-5 Development site:

    http://www.dsm5.org/Pages/Default.aspx


    You can also register via a link at the bottom of each proposal, for
    example, at the bottom of this key page:

    Complex Somatic symptom disorder (CSSD)
    http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368

    Note that if you are viewing proposals from this page:

    http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

    you won't see the page for:

    "Psychological Factors Affecting Medical Condition"

    This is one of the DSM-IV categories that the Work Group is proposing
    should be combined with several other current categories under "Somatic
    Symptom Disorders".

    In order to view this page, the Proposed Revision, Rationale and other
    Tabs, or if you wished to submit a comment specifically in relation to this
    proposal, this is the URL:

    316 Psychological Factors Affecting Medical Condition

    http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=387


    There are two key PDF documents associated with proposals for the DSM
    categories currently classified under "Somatoform Disorders". [See: 5]

    These provide an overview of the new proposals and revisions and a
    "Justification of Criteria" rationale document. I would recommend
    downloading these.


    Related information:

    [1] APA's new DSM-5 Development webpages:
    http://www.dsm5.org/Pages/Default.aspx

    [2] Somatoform Disorders:
    http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

    [3] Complex Somatic Symptom Disorder (CSSD)
    http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368

    [4] Psychological Factors Affecting Medical Condition
    http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=387

    [5] Key PDF documents:

    PDF A] Somatic Symptom Disorders Introduction DRAFT 1/29/10
    http://www.dsm5.org/Documents/Somatic/APA Somatic Symptom Disorders description January29 2010.pdf

    PDF B] Justification of Criteria - Somatic Symptoms DRAFT 1/29/10
    http://www.dsm5.org/Documents/Somatic/APA DSM Validity Propositions 1-29-2010.pdf

    [6] For more information see my Dx Revision Watch site, DSM-5
    proposals page: http://wp.me/PKrrB-jZ



    Suzy Chapman
    _____________________

    me.agenda@virgin.net
    http://dxrevisionwatch.wordpress.com
    http://meagenda.wordpress.com

    Protected by Kaspersky Lab
  10. Tammie

    Tammie Senior Member

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    Wondering if the CAA has said anywhere what they plan to submit for this (if they have made any progress yet)? I asked on their FB page and did not get a response.
  11. oerganix

    oerganix Senior Member

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    I also asked this on another thread and got a non-answer, something to the effect that they are 'looking into it'. Very disappointing, really. This is a very important issue.
  12. Otis

    Otis Señor Mumbler

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    CAA DSM-V Response

    I posted the same question and got the answer earlier today:
    "The Association plans to submit public comment by the April 20th deadline." from 'jspotila' who I believe works for the CAA. Click here for a link to the response.

    My post read "I haven't had a chance to keep up with all the threads but it seems we need the CAA to take a VERY strong stand on DSM-5 or we're all going to shuffled off to shrinks unless XMRV is the magic bullett and rapid treatments are available very soon." and I provided a link to this thread. That thread is entitled "Time for the Big Talk. How's the CAA doing?" and is up to 53 pages and counting so I thought I provide what I knew here.

    That's not the reply I was hoping to see given this DSM-V language. It must have been sponsored by private Long Term Disability companies. If you can get any $, they'll be sure to stop paying after 2 years (typically) for any psych disorder or an illness contributed to by a psych disorder.

    Otis
  13. oerganix

    oerganix Senior Member

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    Yes, the fight to stop this illness from being psychologized is not over just because Bill Reeves in no longer the lead "researcher" into CFS. I was really hoping the CAA would fight the good fight, politically, because this IS politics (based on the economics involved). It becomes more evident all the time that both here and in UK, the disability insurance companies have, so far, won the upper hand. The specter of forced psych evaluations and forced GET/CBT is very real.
  14. Andrew

    Andrew Senior Member

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    The IACFS/ME sent their letter. I'm almost done composing my letter. The problem I'm having is no access to the DSM IV to compare. I only have the DSM III, and didn't find it problematic. So I'm just going to go by what I see.
  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    @ Andrew

    You might recall from my earlier posts on this site that the APA and the WHO are undertaking as far as possible to achieve congruency between the two classification systems.

    They have agreed:

    "To facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria."

    with the objective that

    "The WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are identical for ICD and DSM."

    Until ICD Revision issues its draft proposals for ICD-11 Chapter 5 it's too early to know what changes might be proposed (if any) by the Topic Advisory Group for Mental and Behavioural Disorders for the revision of its own "Somatoform Disorders" section.

    If the DSM-5 Task Force were to approve radical changes to the categories currently classified under "Somatoform Disorders" in DSM-IV, the ICD Revision group working on the corresponding section of ICD-11 Chapter 5 may not be able to achieve congruency between the two systems if it rejects the DSM-5 proposals.

    So it's too early to know whether, and to what extent, the ICD-11 will mirror the category names, descriptions and criteria in Chapter 5 with those being proposed for the restructured DSM Somatoform Disorders section.


    There is a degree of correspondence between the current DSM-IV Somatoform Disorders section and the equivalent section in ICD-10: Chapter 5. The table below sets out how the current DSM-IV and ICD-10 correspond for their respective Somatoform Disorders classifications.

    Note that Chronic fatigue syndrome is not categorized in DSM-IV and neither is Neurasthenia (which is classified in ICD-10: Chapter V at F48.0)


    [​IMG]

    [Content superceded by third draft May 2, 20112]

    The Alpha Draft for ICD-11 is scheduled for May 2010.

    Remember though, that instead of moving onto ICD-11, once the revision of ICD-10 has been completed, the US will be implementing a Clinical Modification of ICD-10 called ICD-10-CM, in October 2013.

    There are disparities between some of the proposed codings for the forthcoming US Clinical Modification and those in the current ICD-10 as used in the UK and other countries: for example, the classification and codings for Postviral fatigue syndrome, (Benign) myalgic encephalomyelitis and Chronic fatigue syndrome differ between ICD-10 and the current proposed codings and classifications for the forthcoming US ICD-10-CM.

    Resources for US Clinical Modification:

    CDC site: International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM)

    The 2010 update of ICD-10-CM is now available and replaces the July 2009 version.
    For current proposals for US modification ICD-10-CM see:

    http://www.cdc.gov/nchs/icd/icd10cm.htm
    http://www.cdc.gov/nchs/icd/icd10cm.htm#10update

    Although this release of ICD-10-CM is now available for public viewing, the codes in ICD-10-CM are not currently valid for any purpose or use. The effective implementation date for ICD-10-CM (and ICD-10-PCS) is October 1, 2013. Updates to this version are anticipated prior to implementation of ICD-10-CM.

    You can see what codes are proposed for ICD-10-CM in the document above or here:

    Current proposals for US modification ICD-10-CM see:
    http://en.wikipedia.org/wiki/History_of_chronic_fatigue_syndrome#ICD-10-CM

    Current proposals for the US Clinical Modification ICD-10-CM, scheduled for implementation in October 2013, propose classifying Chronic fatigue syndrome at R53.82.

    According to the American Psychiatric Association (APA) 10 December News Release:

    "APA will continue to work with the WHO to harmonize the DSM-5 with the mental and behavioral disorders section of the ICD-11. Given the timing of the release of both DSM-5 and ICD-11 in relation to the ICD-10-CM, the APA will also work with the CDC and CMS to propose a structure for the U.S. ICD-10 CM that is reflective of the DSM-5 and ICD-11 harmonization efforts. This will be done prior to the time when the ICD-10-CM revisions are 'frozen' for CMS and insurance companies to prepare for the October 1, 2013, adoption."

    With the three systems: DSM-5 (ETA now May 2013), ICD-10-CM (not yet frozen with implementation in October 2013) and ICD-11 (dissemination in 2014+) set to become more closely aligned, the proposed structure of ICD-11 may have implications for US patient populations, even though the US might not anticipate moving on to ICD-11 (or a CM version of ICD-11) for many years.

    Suzy Chapman
    http://dxrevisionwatch.wordpress.com
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Andrew, has the IACFS/ME published a copy and do you have a link, please?

    Since 4 March, I have been chasing our UK patient organisations to establish whether they intend to submit a response.

    I have had no reply yet from Action for M.E., AYME and the Young ME Sufferers Trust.
  17. Andrew

    Andrew Senior Member

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    Notice From IACFSME
    http://www.iacfsme.org/


    DSM-5 May Include CFS as a Psychiatric Diagnosis


    March 25, 2010

    Important Alert to the CFS/ME Community:

    The DSM-5 Task Force of the American Psychiatric Association is asking for public comment to their proposed DSM-5 manual of psychiatric diagnoses scheduled for release in 2013. We are concerned about the possibility of CFS/ME being classified as a psychiatric disorder, based on comments made in their Work Group on somatoform disorders (see letter below). Of course, such an action would be a major setback in our ongoing efforts to legitimize and increase recognition of the illness.

    We urge you to submit your comments about this disturbing possibility to the DSM-5 Task Force ( www.dsm5.org). You only need to register on this website to submit your comments. (Once you have a login, click on Proposed Revisions, and then Complex Somatic Symptom Disorder. At the bottom of page is a section for public comments.) Comments written from the perspective of a working professional (researcher, clinician, educator) will have the most influence.

    Comments must be submitted by April 20 th.

    Thank you.

    Fred

    Fred Friedberg, PhD
    President
    IACFS/ME



    Letter To the DSM-5 Task Force:

    On behalf of the board of directors and the membership of the International Association for Chronic Fatigue Syndrome (IACSF/ME), I would like to express my deep concern about the possible reclassification of CFS as a somatoform disorder in DSM-5. Although the proposed new category of Complex Somatic Symptom Disorder (CSSD) appears reasonable, we are concerned about CFS, a complex illness condition, becoming a subtype of CSSD or a distinct stand alone psychiatric diagnosis. We base our concern on comments by Dr Simon Wessely (DSM-5 Work Group; September 6-8, 2006) who concluded that “we should accept the existence …of functional somatic symptoms/ syndromes …[apart from depression and anxiety] and respect the integrity of fibromyalgia, irritable bowel syndrome, chronic fatigue syndrome, and their cultural variants.” This comment suggests the possibility of a new DSM-5 somatoform diagnosis that subsumes CFS as one manifestation or subcategory.

    It is the position of the IACFS/ME that placing CFS in the new category of CSSD would not be reasonable based upon the body of scientific evidence and the current understanding of this disease.

    The classification of CFS as a psychiatric disorder in the DSM-5 ignores the accumulating biomedical evidence for the underpinnings of CFS in the domains of immunology, virology, genetics, and neuroendocrinology. Over the past 25 years, 2,000 peer review CFS studies have been published. The data support a multifactorial condition characterized by disturbances in HPA function, upregulated antiviral pathways in the immune system, and genetic abnormalities. Unlike clinical anxiety and depression, psychotropics are generally ineffective for CFS and standard medical advice to exercise and rest or resume activities often leads to symptom worsening. In contrast to clinical depression, motivation is much less affected in CFS and the desire to be active remains intact. Furthermore, large differences in gene expression have been recently found between CFS and endogenous depression (Zhang et al., 2009)

    Although biomedical research to elucidate the mechanisms of CFS is a work in progress, the medical uncertainties surrounding CFS should not be used as justification to classify it as a psychiatric illness. As stated by Ricardo Araya MD: “The absence of a medical explanation [for an illness] should not confer automatic psychiatric labeling (Sept.6-8, 2006; Somatic Presentations of Mental Disorders; DSM-5 Work Group).”

    With respect to DSM-5, we support a recent editorial in the British Medical Journal by Dr. Allen Francis (2010), chair of the DSM-IV task force, who stated that any new DSM diagnosis should be based on “a careful risk-benefit analysis that includes ….a consideration of all the potential unintended consequences (p. 492)”. The likely unintended consequences of a CFS diagnosis in the new DSM will be increased stigmatization and even lower levels of recognition by primary care physicians and the medical community in general. As a result, we believe such an action would be counterproductive to our ongoing efforts to educate physicians about the assessment and clinical care of these patients.

    The IACFS/ME is an organization of more than 500 biomedical and behavioral professionals whose mission is to promote, stimulate, and coordinate the exchange of ideas related to CFS research, patient care, and treatment. We support scientific advocacy efforts for increased research funding. We also support public health policy initiatives to increase the recognition and reduce the stigmatization that continues to plague these debilitated and medically underserved patients.

    Thank you for your attention.

    Sincerely,

    Fred Friedberg, PhD
    President
    IACFS/ME
    www.iacfsme.org
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    UK
    Thank you Andrew. I will add this to my site.

    Suzy
  19. Jerry S

    Jerry S Senior Member

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    Chicago
    Thanks, Andrew! It's good to see the IACFS/ME is commenting on this important issue. The WPI will also be responding, which they announced on their Facebook page.
  20. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    I think this is a very well worded, strong statement. (Can you tell by my highlights?) Excellent.

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