Keep CFS and FM from being classified as a mental disorder

Discussion in 'Fibromyalgia Main Forum' started by Andrew111, Mar 28, 2010.

  1. Andrew111

    Andrew111 Member

    From the IACFSME web site

    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 ( 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 Friedberg, PhD

    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.


    Fred Friedberg, PhD

    [This Message was Edited on 03/30/2010]
  2. Andrew111

    Andrew111 Member

    I want to clarify something. The proposed Complex Somatic Symptom Disorder (CSSD) says nothing about what CFS is or is not. It doesn't even mention CFS. But, it is so broad that CFS can be placed into it. As I read the definition, a few phrases caught my eye. Phrases like "orthostatic dizziness." Sound familiar? It is one of the hallmark symptoms of CFS. Also, it says "they may adopt a sick role." This sounds like Wessely talking about CFS.

  3. Andrew111

    Andrew111 Member

    Jam338, thanks for adding to this. I think everyone who wants to should write. At the site you will find a PDF file that gives the full explanation of disorder.

    BTW, does anyone here know someone at the CAA. I don't see any news about this on their website.
  4. AuntTammie

    AuntTammie New Member

    JAM - I am so happy to see that you are still around - I had posted awhile back asking if anyone had heard from you bc I was really worried about you (I totally understand that it is hard for you to get on here, so please don't take that as pressure or anything - it's just that after the last series of posts re what was going on with your husband and your health, etc, you have been on my mind and in my I am glad are still here)

    Andrew - the reason that this sounds suspiciously like Wessley is bc two of the members of the grp working on the somatic disorder classification are colleagues of his and totally behind his school of thought....very scary that this could get pushed thru

    also the CAA has stated that they are consulting with people about what to put in their statement and they do plan to write somethign
  5. AuntTammie

    AuntTammie New Member

    bumping this up, bc the time to write in about this is now until April 20th, so not a lot of time left....the more people protest the better - this is truly a serious, potentially very hurtful, and completely inaccurate classification that would definitely wind up including CFS and FM, MCS and others in the DSM

  6. AuntTammie

    AuntTammie New Member

    it might be good if you changed the title of this to include FM so that everyone on here will read it (bc it will affect FM and CFS, as well as MCS and other issues)
  7. AuntTammie

    AuntTammie New Member

    for changing the title : )
  8. Andrew111

    Andrew111 Member

    FWIW, here is my letter. Except I corrected a couple word usage mistakes I found later.

    "After reviewing the draft for Complex Somatic Symptom Disorder (CSSD), I strongly urge you to remove it as a category that adds to or subsumes previously described somatoform disorders. It is so broad that it could easily describe any patient with: a) a doctor who has conducted many tests and b) an undiagnosed physical illness that is debilitating enough for the patient to fear loss of livelihood or quality of life. The CSSD definition's inability to distinguish between a mental disorder and an undiagnosed physical disorder makes it too vague for research. And it offers no clinical advantage because anxiety can be diagnosed and treated regardless of whether a person has a somatic symptom disorder.

    "The inclusion of Complex Somatic Symptom Disorder can also cause harm. It amounts to a fast and loose approach to placing people into a mental disorder. We have all heard cases of people who were dismissed by a few doctors, and then later found the help they needed. Also, I am very concerned that Complex Somatic Symptom Disorder will become a wastebasket diagnosis for people with controversial illnesses such as Gulf War Syndrome, Chronic Fatigue Syndrome, and Fibromyalgia. I see nothing in the CSSD draft advising doctors to exclude these people.

    "As an illustration the type of problem the CSSD can create, please notice that the CSSD draft says that orthostatic dizziness is a "normal body sensation." This may be true in some cases, but it can also be an indication of a serious health issue. And even if routine testing is unrevealing, that doesn't mean a problem is not there. So if a patient is experiencing debilitating levels of orthostatic dizziness, it would be reasonable for him to be very concerned, despite a doctor saying nothing is wrong.

    "When defining a somatic symptom disorder, you need to be very careful. You need a definition that requires more than a patient who is tested, undiagnosed, and alarmed. The Complex Somatic Symptom Disorder definition is too broad for research and clinical treatment. And because of its potential for harm, I strongly urge you to remove CSSD from consideration for the DSM"
  9. AuntTammie

    AuntTammie New Member

    Andrew - nice letter - thanks you so much for writing it and for calling attention to this issue on here, too

    marctilly, I absolutely agree with you re the CAA.....the only reason that they even came out and said as much as they did about what they are doing re the DSM is bc I and a couple of other patients got on them repeatedly via facebook.....and considering that some of what they have published in the recent past is damaging (and has been discussed thoroughly on phoenix rising), I am a little worried that they are waiting to say anythign more bc what they are writing is not actually going to be helpful at all

    I have tried to give them the benefit of the doubt over previous issues, and mostly they have done some really good things for us, (& they did retract one of the recent publications after patients protested, so they are listening) but this does have me concerned