7/15 -new deadline- Am. Psyc.Assn & CFS action

Discussion in 'Fibromyalgia Main Forum' started by mbofov, Jun 12, 2011.

  1. mbofov

    mbofov Active Member

    Cort Johnson sent this e-mail last week about the APA and a proposed new psychiatric disorder which could have serious consequences for CFS/ME patients. Read the e-mail and then take action:

    The American Psychiatric Association is attempting the change the rules of the road in regard to...gulp... diagnosis- the very issue that has bedeviled ME/CFS for so many years. The APA is not attempting to change the diagnostic criteria for CFS...it's doing something much subtler than that; it's attempting create a new diagnostic category for psychiatric disorders called Complex Somatic Symptom Disorder (CSSD). A close look at the title itself is enough to give one a few shivers...

    Its 'complex' - meaning that it's not clear - meaning that there's a lot of wiggle room and we have experience what has happened with wiggle room in the past. Somatic symptoms generally refers to symptoms that are unexplained.....leaving us with a new category focused on 'complex disorders characterized by many unexplained symptoms' (Ouch). There is no specific mention of CFS in the definition of the category (altho IBS is mentioned) but one wonders how CFS could NOT fit into here given the lack of clear explanation of its causes and the many symptoms that accompany it.

    This APA attempt to change the DSM-5 categories it uses to categorize disease could create a hole, a kind of black hole, in which future researchers could attempt to tumble CFS ( and other poorly explained disorders) into.

    What can you do? Submit a request that the APA not create this new category. The hour is late - just six days remain before the deadline for submissions is reached (June 15th) but the path is clearly laid out and the job is not difficult. You could emphasize that

    (a) the highly subjective nature of the definition - which relies on unexplained symptoms and 'concern' about them - is too broad and could easily lead to the inclusion of what will ultimately to be found to be non-psychiatric disorders into a psychiatric box -as has happened in the past.

    (b) the definition is illogical in its assumption that 'excessive concern' after six months of unexplained symptoms is indicative of a mental disorder. This is particularly true in the case of chronic fatigue syndrome which is accompanied by severe fatigue associated with reductions in work, play and social interactions. It would be hard to understand why this set of circumstances in any person would not cause substantial concern - yet the APA asserts that such concern is enough to fit a person into its new category of mental disorders.

    (b) the poor efficacy of the treatment interventions (CBT) cited in this category suggests that the creation of the category runs the risk of balkanizing research and treatment efforts in a field with reduced upside.

    It should be noted that CBT is used both in psychiatric and non-psychiatric disorders to equal effect. CBT's efficacy in CFS - a disorder whose symptoms would, if interpreted in one manner, appear to meet many of the CSSD criteria - is unclear with the large PACE and FINE trials providing negligible benefit and a recent longterm study reporting negative results.

    (b) Given the tendency of the psychiatric profession to mislabel disorders later found to have physiological origins and the damage that has caused to progress in the research arena (and to the patients themselves) we suggest that it is simply not appropriate for the APA to create large categories that rely on 'unexplained symptoms'.

    You can find the Coalition4ME/CFS response and their instructions how to post a response here:


    You can find more responses by other organizations here the CFIDS Association, Whittemore Peterson Institute, IACFS/ME, Mass CFIDS Association, Invest in ME, etc. on this page


    and much more information on this site.

    [This Message was Edited on 06/19/2011]
  2. TigerLilea

    TigerLilea Active Member

  3. simpsons

    simpsons Member

    excellent post you put this well i people realize that they need to take action now as closing date is 15th so zip off your replly now from the links reported

    even a few lines are good enough

  4. simpsons

    simpsons Member

    the date has been extended i think until 15th july but check out the website suzy does for information

    there is a pre written letter people can send in protest

    or you can view the replies written by others on those links above so you can get inspiration or remind yourself of the points you may like to make if you are well enough to write your own letter

  5. simpsons

    simpsons Member

    letter pre written available for sending

    on links above

  6. mbofov

    mbofov Active Member

    First, thanks simpsons for the update re the new deadline!

    Okay everyone - this is not really a form letter per se, but the Coalition 4 ME/CFS said it’s available for use by the public, so you can use it as a template to make up your own letter, or to make it really simple, use the paragraph I wrote at the beginning, adding your name and a little personal info.

    Go to this link: http://www.coalition4mecfs.org/DSM5.html to get instructions for how to submit your letter (they are at the bottom of the page). A link to this letter is also on that page, although I have copied it here.

    Dear DSM-5 Task Force:

    I wish to add my name to the following letter submitted by the Coalition 4 ME/CFS regarding the proposed newly created mental disorder, Complex Somatic Symptom Disorder.
    I _________________________________________________________________________
    (fill in whatever personal information or comments you wish)

    The letter is as follows:

    As the Coalition 4 ME/CFS, we wish to comment on the proposals for DSM-5 and particularly on the newly created category for "Complex Somatic Symptom Disorder" (CSSD) and the category “Simple Somatic Symptom Disorder” (SSSD).

    “Simple Somatic Symptom Disorder” (SSSD).

    We are very concerned about the real harm that can come to patients through the misuse of the SSD and especially the CSSD in clinical practice. This is especially true for patients with ME/CFS or other diseases like Fibromyalgia, Gulf War Illness and IBS that are misunderstood, misdiagnosed and mistreated by the medical community at large. And while the DSM-5 proposal itself does not call out any specific disease, there is additional concern for ME/CFS patients because of discussions over time that have mentioned CFS specifically in the context of “somatic presentations of mental disorders” (4).

    The biggest concerns are:

    1. Continued stigma for ME/CFS: Despite ample evidence of the pathobiology of ME/CFS (5), patients are still subject today to the insistence by their doctors that there is nothing wrong and they are ‘just depressed’. Establishing the CSSD framework that includes hypochondriacs and yet could also be easily applied to patients with real and serious medical diseases like ME/CFS only exacerbates the stigma and mistreatment that these patients have suffered for years. ME/CFS is especially subject to this because the ICD-10-CM categorizes CFS under “Signs and Symptoms/Malaise and Fatigue” and because those studying somatic symptoms of mental disorders specifically call out CFS (4).

    2. Misuse and misapplication of the category: The highly subjective nature of the criteria, especially when applied to real diseases that are poorly understood by the practicing physicians, will lead to misuse of this category and the incorrect diagnosis of a psychological disorder. The “Justification for Criteria – Somatic Symptoms” (3) acknowledges that ‘A key issue is whether the guidelines for CSSD describe a valid construct and can be used reliably.” Unfortunately, the document does not provide a satisfactory explanation. There are severity metrics proposed for CSSD but these do little to allay concerns when the benchmarks for normal response include healthy volunteers on the one hand and hypochondriacs on the other. How will these instruments be validated for ME/CFS, which has recently been reported to have “a greater impact on functional status and well being than other chronic diseases such as cancer” (6)?

    This is a huge issue for patients with diseases that are poorly understood. Every day, people who are very sick with real diseases like ME/CFS, Lyme disease, Fibromyalgia, Gulf War Illness and IBS are told that there is nothing wrong with them. It is not hard to imagine that their unwillingness to accept that diagnosis could be judged as ‘disproportionate and persistent concerns about the medical seriousness of one's symptoms’ by their medical doctors. Once the physician applies a mental health label by diagnosing CSSD (whether as the primary diagnosis or as a secondary diagnosis), there will be profound implications for the patient for diagnosis, treatment, disability and insurance.

    3. Inappropriate Treatments and Withholding of Needed Diagnostics: The “Justification for Criteria – Somatic Symptoms” (3), in explaining the creation of CSSD, states that “treatment interventions are similar in this group of disorders” and describes the use of antidepressant medications and CBT for “the identification and modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors and promote more effective coping.” It further states that “all of these disorders benefit from specific interventions with the patient’s non-psychiatric physician (e.g. scheduling regular appointments as opposed to prn appointments, limiting testing and procedures unless clearly indicated)”. We only need to look to England and the NICE Guidelines to understand the disastrous effects of such standards. In the hands of a doctor truly knowledgeable about ME/CFS, CBT and anti-depressants may sometimes be part of an effective treatment plan. But all too often, the treatments are misused by doctors who don’t understand the disease and instead believe that the real problem with the patient is his false illness beliefs or that he is just depressed. Suggesting that doctors focus on these as treatments and limit testing and procedures in such a scenario could have a disastrous impact on the patient’s life.

    4. Alignment with ICD: While the DSM-5 is separate from the ICD-10 and is used primarily by mental health practitioners, there is an alignment between the two today. It appears that that will continue with ICD-11 although it is not clear at this time how that will be achieved. Instituting the CSSD in the ICD-11 would have negative implications not only for the US but also for all other countries.
    We are not alone in voicing serious concern for the unintended consequences of the DSM-5 plans for SSSD and CSSD. Numerous organizations and individuals stated these same concerns in the April 2010 review cycle yet the CSSD category remains essentially unchanged. Even members of the psychiatric community, most prominently Dr. Allen Frances, the chair of the DSM-IV task force and Dr. Robert Spitzer, the chair of the DSM-III task force, have raised concerns with the process, content, direction and unintended consequences of the DSM-5 (7,8,9). Dr. Allen Frances (the chair of the DSM-IV task force) raised this issue of the unintended consequences of the DSM-5, especially around a premature “paradigm shift”. In “A Warning Sign on the Road to DSM-5: Beware of Its Unintended Consequences” (7), he states “Part of the exaggerated claim of a paradigm shift in DSM-5 is based on the suggestion that it will be introducing dimensional ratings and that this will increase the precision of diagnosis… [But] Including an ad hoc, untested, and complex dimensional system in an official nomenclature is premature and will likely lead to similar neglect and confusion”.
    We urge you to seriously reconsider the inclusion of this category. For ME/CFS patients and for many other patients with other real but poorly understood diseases, those unintended consequences of implementing CSSD and SSSD could be disastrous!

    Thank you.
    Coalition 4 ME/CFS
    1) Somatic Symptom Disorders, DSM website, May 29, 2011, (http://www.dsm5.org/ProposedRevision/Pages/SomaticSymptomDisorders.aspx)
    2) “Somatic Symptom Disorders”, description published by the American Psychiatric Association, Draft 4/18/2011, (www.dsm5.org/Documents/Somatic/Somatic%20Symptom%20Disorders%20description%20April%2018,%202011.pdf)
    3) “Justification for Criteria – Somatic Symptoms”, Published by the American Psychiatric Association, Draft 4/18/2011, (www.dsm5.org/Documents/Somatic/DSM Validity Propositions 4-18-11.pdf)
    4) Michael First for the American Psychiatric Institute, “Somatic Presentations of Mental Disorders (September 6-8, 2006)”, (http://www.dsm5.org/research/pages/somaticpresentationsofmentaldisorders(september6-8,2006).aspx)
    5) NIH State of Knowledge Workshop on ME/CFS Video and agenda, April 7-8, 2011 (http://orwh.od.nih.gov/CSF%202011/newsEvents.htm)
    6) L. Nacul et al., “The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers”, BMC Public Heath, May 27, 2011 (http://www.biomedcentral.com/1471-2458/11/402/abstract)
    7) Dr. Allen Frances, MD, “A Warning Sign on the Road to DSM-5: Beware of Its Unintended Consequences”, Psychiatric Times. June 26, 2009. (http://www.psychiatrictimes.com/dsm-5/content/article/10168/1425378)
    8) Dr. Allen Frances (DSM IV) and Dr. Robert Spitzer (DSM-III), Letter to the APA board of trustees. July 6, 2009. (http://www.scribd.com/doc/17172432/Letter-to-APA-Board-of-Trustees-July-7-2009-From-Allen-Frances-and-Robert-Spitzer)
    9) Gary Greenberg, “Inside the battle to define Mental Illness,” Wired Magazine. Dec 27, 2010. (http://www.wired.com/magazine/2010/12/ff_dsmv/all/1)