urgent rich vank everyone

Discussion in 'Fibromyalgia Main Forum' started by simpsons, Jun 13, 2011.

  1. simpsons

    simpsons Member

    the usa shrinks are trying to create a new illness complex somatic symptom disorders category

    this is very serious as ME cfs Lyme FM etc can be included in this submission and patients refused insurance. if you don t think this effects ME cfs or lyme etc then be aware member of wessely school michael sharpe is on the board forgive my lack of info but suzy chapman has this all on her site so check it out HOWEVER SHORT YOUR SUBMISSION IS PLEASE LET YOUR VOICE BE HEARD

    you will find some excellent submissions posted so you can use them to help you make some points. they only gave a few days to respond to this so sorry for short notice but closing date is end of play 15th. let them know that there are tests and you do carry viral infections and immune system problems etc


    European ME Alliance submission to DSM-5 draft proposals Submission - to the American Psychiatric Association on DSM-V Complex Somatic Symptom Disorders category

    June 2011


    The European ME Alliance consists of 11 European national charities/non profit organisations campaigning for better diagnosis and understanding of myalgic encephalomyelitis (ME or ME/CFS) as defined by WHO-ICD-10-G93.3.

    Even though we are not mental health professionals or represent people with mental health disorders we feel it important to comment on the draft proposal of DSM-V and its Complex Somatic Symptom Disorders proposal.

    This response should be seen against the backdrop of the devastation caused by the misinformation within the medical profession regarding ME/CFS and the promotion of false perceptions about the disease to the public, healthcare authorities and government.

    It is of paramount importance that the American Psychiatric Association are aware of the dangers inherent in establishing incorrect categories of disorders which are based on poor science, vested interests or which do not serve the patients. It is the patients who must surely be the priority in all healthcare provision.

    We are especially concerned about the criteria described in the new category of Complex Somatic Symptom Disorder which seems to imply that anyone who has a chronic or incurable illness with somatic symptoms and 'misattributes' their symptoms could be given this label.

    Who decides when someone misattributes their pain or fatigue?

    How are these symptoms measured?

    How long and vigorously is a patient allowed to complain about their symptoms before a doctor can decide to investigate further and determine if a headache is a brain tumour or irritable bowel syndrome colon cancer?

    In the CSSD Criteria B there are terms used which are subjective and not measurable - such as "health concerns" and "catastrophising".

    Based on our collective experiences with the treatment of an organic illness such as ME/CFS - experiences across Europe - our concern is that there is a great danger of mis- or missed diagnoses when looking at this category and its proposed diagnostic criteria.

    The criteria are very vague and allow too much subjectivity.

    In fact, ME/CFS could mistakenly be placed in this category if one were to ignore, or be unaware of, the huge volume of biomedical research and evidence which shows it to be an organic illness and if one were to use only the broad CSSD criteria to diagnose.

    Such an action would be a major and costly mistake and would not serve the patients or the healthcare communities.

    In our experience specialist ME/CFS clinics get as many as 40 % of patients referred with a ME/CFS diagnosis who turn out to have other very serious and sometimes fatal illnesses.

    The patients we are concerned with suffer from myalgic encephalomyelitis which is a neurological disease. Yet all too often these patients are being treated as if they had a somatoform illness.

    Parents of children with ME/CFS are restricted in visiting their severely ill children in hospital or worse still the children are taken away from their families as the healthcare professional believes it is the family that is keeping the child ill by having 'wrong illness beliefs'.

    Severely ill grown ups with this disease are denied normal medical care and threatened with being placed in mental hospitals if they are too ill to care for themselves and ask for help.

    This not only sets patient against healthcare professional but also is a waste of resources and of lives.

    A broad unspecific category such as the proposed Complex Somatic Symptom Disorder does not help patients who need an honest and clear diagnosis.

    Any illness lacking a diagnostic test is in danger of being put into this non specific category which helps no one.

    We hope and request that the APA listens to patients and avoids creating a category of mental illness that is meaningless.

    Yours Sincerely,

    The Chairman, Board and Members of the European ME Alliance


    PDF version: http://www.euro-me.org/GB/EMEA%20Letter%20to%20APA%20-%20DSM-V.pdf

    Membership of EMEA: http://www.euro-me.org/about.htm


    Suzy Chapman

  2. mbofov

    mbofov Active Member

    for posting this. I just received an e-mail from Cort Johnson about this last week (he sent it to all Phoenix Rising members) and I did submit something to the APA this morning. My sister who is a drug and alcohol counselor did as well.

    I did a post about this on the PH board today, including a copy of Cort's e-mail. It's crazy. They are crazy. We're NOT crazy.

    Take care -

  3. quanked

    quanked Member

    However, I do not have it in me to sort through multiple items or create my own response with my own concerns. Everyday I sign petitions created by others and it is very simple or I could not participate. I am sure it is this way for many here.

    For those seeking others to do something here I think that it would be most effective to create a "petition like" or an actual petition on care 2 or change.org or some other forum for those of us who just cannot think well or do much. I guarantee that there would be a much greater response.

    I have to say that I am surprised that this has to be pointed out and I mean no slight to anyone by saying this. It is just a reminder.

    Thanks for your post.
  4. simpsons

    simpsons Member

    good point i usually if i do anything do a letter or doc for everyone to send out so its ready written. in fact i have bleated on to everyone to make it as easy as possible the cfsids and others did this in previous times.

    we need to start getting organized again in this way you are right

    this has been highlighted by suzy chapman uk group uk me agenda, she is not ill as far as i know i think has children ill.

    you are right and i think that even a simple letter would be good i m as you atm not able to write much

    perhaps mary could write something simple you could copy and paste.

    thanks for posting
  5. mbofov

    mbofov Active Member

    It would be great if there were an easy-to-sign on-line petition for this issue, but I don't know of any, and I don't have the wherewithal to create one.

    But I think it's still worth posting the information here, and even if only a couple of people can submit a response to the APA, then it's worth it.

    Even if you can't write anything, try to check out this website maintained by Suzy Chapman:

    You'll see a lot of excellent responses that have been submitted to the APA, it's illuminating (and a little scary too)

  6. zenouchy

    zenouchy Member

    and even modify it some if I can. I'm too fogged out and tired most of the time to create something from scratch that would be articulate enough. I'll check back in tomorrow and see if that is a possibility. Thank you. It appears that some psychiatrists just want to make a buck at the expense of our well-being. Pretty unbelievable.

    Thanks for posting this and bringing it to our attention,

  7. simpsons

    simpsons Member

    erika if yu look at the post mary did action needed there are links there for this with a pre written letter

    alsothe closing date has been extended so still time to get it sent off

    fingers so painful now must stop but will try another day to post the letter or link if mary is unable to do so before that

    this is a very slick and organised way of getting a large buck at the expense of our welbeing

    not just us but mis diagnosed thyroid patients addisons ms and even cancer patients

    thanks for your reply
  8. mbofov

    mbofov Active Member

    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)