DSM-5 SSD submissions 2010

Submissions to the first DSM-5 stakeholder review (February 10 – April 20, 2010)

If you are looking for submissions for the second (May 4 – July 15, 2011) public review, you need this page: http://wp.me/PKrrB-19a

In 2010, patient organisations, professionals and advocates submitting comments in the first DSM-5 draft proposal review process were invited to provide copies of their submissions for publication on this page.

International patient organisation submissions:

P.A.N.D.O.R.A, Whittemore Peterson Institute, Steungroep CFS Netherlands, CFS Associazione Italiana, ME Association, Action for M.E., Invest in ME, Mass. CFIDS/ME & FM, The CFIDS Association of America, Vermont CFIDS Association, IACFSME, The 25% ME Group

Patient advocate submissions:

Suzy Chapman UK (2), Tammie Page M.A. US, Patient advocate US, John Mizelle, Therapist US, Peter Kemp UK, Ian McLachlan UK, Andrew US, Mary M. Schweitzer PhD US

International patient organisation submissions

Open P.A.N.D.O.R.A. response here in PDF format: P.A.N.D.O.R.A. response

April 19, 2010

DSM-5 Task Force
American Psychiatric Association
1000 Wilson Boulevard
Suite 1825
Arlington, VA 22209
Members of the DSM-5 Task Force,

We would like to provide our input to an open request for input on proposed changes to the fifth revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM).

P.A.N.D.O.R.A. is deeply concerned by the American Psychiatric Association’s potential reclassification which not only may include CFS as a somatoform disorder in DSM-5, but also Fibromyalgia (FM), toxic encephalopathy or multiple chemical sensitivity (MCS), chronic Lyme disease (CLD) and Gulf War Illness (GWI). These illnesses are under the scientific umbrella concept of Neuroendocrineimmune Disorders (NEIDs) embraced by our organization.

Researchers at the National Institutes of Health (NIH), National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), the Centers for Disease Control and Prevention (CDC), Department of Defense (DOD), and have all documented the physiological and pathophysiological underpinnings of CFS, FM, CLD and GWI. The CDC, under the leadership of Julie Gerberding, launched a multi-million-dollar campaign within the past few years to underscore that CFS is a multi-system disorder, which can and should be treated as such. NIAMS has provided funding for FM and over the years so has DOD under the GWI umbrella, which was last year finally acknowledged by the U.S. Government as a serious medical illness affecting our Gulf War veterans.

Based upon the numerous, peer-reviewed studies that have linked CFS to infection and multiple organ systems abnormalities, classifying CFS, as a Complex Somatic Symptom Disorder (CSSD) seems unreasonable and unwarranted. The same applies for FM and chronic Lyme disease. According to your web site CSSD is described as:

…The hallmark of this disorder is disproportionate or maladaptive response to somatic symptoms or concerns. Patients typically experience distress and a high level of functional impairment. In severe cases, they may adopt a sick role. Sometimes the symptoms accompany diagnosed general medical disorders or psychiatric disorders, and sometimes the disorder occurs alone. There may be a high level of health care utilization, which rarely alleviates the patient’s concerns. From the clinician’s point of view, many of these patients seem unresponsive to therapies, and new interventions or therapies may only exacerbate the presenting symptoms or lead to new side effects and complications.

Some patients feel that their medical assessment and treatment have been inadequate. Patients with this diagnosis typically have multiple, current, somatic symptoms that are distressing; rarely, they may have only one severe symptom.  Symptoms may be specific (such as localized pain) or relatively non-specific (e.g. fatigue or multiple symptoms). The symptoms sometimes represent normal bodily sensations (e.g., orthostatic dizziness), or discomfort that does not generally signify serious disease (e.g., bad taste in one’s mouth) or are incompatible with known pathophysiology (e.g. seeing double with one eye closed). Such patients often manifest a poorer health-related quality of life than patients with other medical disorders and comparable symptoms.

Patients with this diagnosis tend to have heightened levels of health-related anxiety and a low threshold for alarm about the presence of illness. They appraise their bodily symptoms as particularly threatening, harmful, or troublesome and have a tendency to assume the worst about their health. They believe in the medical seriousness of their symptoms despite evidence to the contrary. Health concerns are diffuse and may assume a central role in their lives, becoming a feature of their identity, a way of responding to stressful events, a topic of interpersonal communication, or a basis for interpersonal relationships.

To meet criteria for CSSD, criteria A, B, and C are necessary.

A. Somatic symptoms:
Multiple somatic symptoms that are distressing, or one severe symptom

B. Misattributions, excessive concern or preoccupation with symptoms and illness: At least two of the following are required to meet this criterion:

(1) High level of health-related anxiety.
(2) Normal bodily symptoms are viewed as threatening and harmful
(3) A tendency to assume the worst about their health (catastrophizing).
(4) Belief in the medical seriousness of their symptoms despite evidence to the contrary.
(5) Health concerns assume a central role in their lives

C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is chronic and persistent (at least 6 months).

The following optional specifiers may be applied to a diagnosis of CSSD where one of the following dominates the clinical presentation:

XXX.1 Multiplicity of somatic complaints (previously, somatization disorder)
XXX.2 High health anxiety (previously, hypochondriasis) {If patients present solely with health-related anxiety in the absence of somatic symptoms, they may be more appropriately diagnosed as having an anxiety disorder.} *
XXX.3 Pain disorder. This classification is reserved for individuals presenting predominantly with pain complaints who also have many of the features described under criterion B. Patients with other presentations of pain may better fit other psychiatric diagnoses such as major depression or adjustment disorder.

As estimated and communicated to you by the IACFS/ME: Over the past 25 years, 2,000 peer – reviewed 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 lead to symptom worsening. In contrast to clinical depression, motivation is much less affected in CFS and the desire to be active remains intact.

In the past, the absence of a documentable, medical explanation has relegated other illnesses to a psychiatric diagnosis. Illnesses given psychiatric diagnoses out of ignorance are later given more accurate, medical diagnoses with additional scientific research. Surely, you do not wish to demean the field of psychiatry by repeating the errors of psychiatry’s past.

P.A.N.D.O.R.A. is further concerned that the reclassification of CFS and potentially the other illnesses that our organizations embraces under the umbrella of Neuroendocrineimmune Disorders, as a somatoform disorder in the DSM-5 will result in decreased care of these medically ill patients. The CDC’s Chronic Fatigue Syndrome educational programs for physicians explicitly suggest the management of CFS by primary care physicians with the suggestion of a psychiatric consult if the patient manifests appropriate symptoms. The same applies for the other NEIDs by the various medical specialists and researchers.

The reclassification of CFS, FM, CLD and GWI, as a somatoform disorder in the DSM-5 will create confusion for many practitioners. It will demean these illnesses, and the willingness of some practitioners to treat it. Moreover, the suggested listing of CFS, FM and other NEIDS, as a somatoform disorder may impact the ability of these patients to receive reimbursement of their treatment costs, as well as being afforded disability benefits coverage, resulting in a loss of treatment and benefits, and quality of life.

We have witnessed in England this “cookie cutter” approach as they attempt to place ME (which is the other name for CFS in Europe), as a psychiatric condition. This approach has been chosen by the government and supported by insurance companies because it is considerably less expensive for them to treat ME-CFS patients under this controversial approach. For the sake of cost, the UK government decided with the support of misdirected and allegedly ME-CFS researchers who are psychiatrists, pushing for the Cognitive Behavior Therapy (CBT) in mental health centers alleging that CBT would “cure” individuals with CFS-ME (who oddly have been giving the same criteria rationale as the one suggested under CSSD for the purpose of DSM-5) as well as referring patient to another controversial program of physical reconditioning titled GET (graded exercise therapy). Patients who are referred to these therapies and who fall under the Canadian definition for ME-CFS suffer devastating results and the hardship is cruel for them and to their families.

In the U.S. this approach has been applied for children with CFS-ME. Our organization last year spearheaded with other 23 non-profit and patient advocacy groups the return of a young male teenager suffering with CFS and other related illnesses, who was taken from his loving family by the Buncombe County Department of Social Services (BCDSS). This allegedly well intended social services agency officials charged the mother originally with Munchausen Syndrome By Proxy now commonly know as Factitious Disorder by Proxy (FDP). Once the case went through the court system, the charges against the mother changed to parents “failure to provide a mental health care provider to the minor child”, then to “failure to provide medical care to the minor child” to finally after 9 and half months later, upon the return of the child to his loving family, the parents were charged with “failure to provide the care of a primary physician to a minor child.” This happened because primary physicians in the Buncombe County and in 16 other contiguous mountain area counties in the state of North Carolina have not been educated on any of the NEIDs our organization embraces. The same applies to pediatricians in North Carolina. According to the board of physicians who are currently overseeing the Mountain Area Health Education Center- (MAHEC) programs, and quoted by a MAHEC official “In general, they feel the diagnosis and treatment of CFS is a gray area”. You can certainly understand that you will be contributing to this widespread misunderstanding, which remains in existence despite the substantial amount (thousands) of scientific research papers on CFS and other NEIDs, demonstrating viral and bacterial, and microplasma infections, HPA axis dysregulation, adrenal insufficiency, brain inflammation and neurological findings, brain and CNS dysfunction in
patients with NEIDs.

P.A.N.D.O.R.A. is committed to improving the health care and the lives of patients with chronic fatigue syndrome, fibromyalgia, chronic Lyme disease, environmental illness and Gulf War illness. Therefore, we view the suggested inclusion of CFS, as well as the potential inclusion of any other similar multi-symptomatic chronic illnesses that we embrace in our mission, in the DSM-5 as a somatoform disorder under the CSSD category, as inevitably creating additional harm to individuals suffering with these illnesses. We ask that you abandon this proposal of the creation of CSSD and or the inclusion of NEIDS.

Like many other patient advocacy organizations, which have already provided their input to you, we do not see the utility value of creating CSSD as a means to compartmentalize complex multi-symptoms chronic illnesses as a psychiatric condition and much less in “one fits all” approach. Once again we ask you that you abandon this proposal within DSM-5. Thank you for your attention.

Sincerely yours,
Marly Coutinho Silverman
Founder
P.A.N.D.O.R.A. & NeuroEndocrineImmune (NEI) Center™

Open Whittemore Peterson Institute response here in PDF format: WPI DSM-5 statement

or here: http://www.wpinstitute.org/news/docs/DSM-5WPIaw2.pdf

April 16, 2010

DSM-5 Task Force
American Psychiatric Association
1000 Wilson Boulevard Suite 1825
Arlington, VA 22209

Members of the DSM-5 Task Force:

The Whittemore Peterson Institute would like to address the potential revision of the American Psychiatric Association’s (APA)’s Diagnostic and Statistical Manual for Mental Disorders (DSM-5). The APA’s proposed changes would combine several existing somatic categories into one larger category, Complex Somatic Symptom Disorder, adding language that closely resembles the CDC’s criteria for Chronic Fatigue Syndrome with additional sickness related behaviors that are often evidenced by those who are ill with a disease when it is poorly understood and characterized symptomatically.

The following language has been proposed:

To meet criteria for CSSD, criteria A, B, and C are necessary.

A. Somatic symptoms:

Multiple somatic symptoms that are distressing or one severe symptom

B. Misattributions, excessive concern or preoccupation with symptoms and illness: At least two of the following are required to meet this criterion:

High level of health-related anxiety.

Normal bodily symptoms are viewed as threatening and harmful

A tendency to assume the worst about their health (Catastrophizing)

Belief in the medical seriousness of their symptoms despite evidence to the contrary.

Health concerns assume a central role in their lives

C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is chronic and persistent (at least six months).

Recent findings by researchers at the Whittemore Peterson Institute, the Cleveland Clinic and the National Cancer Institute have found a link between those who have been previously diagnosed with Chronic Fatigue Syndrome, (ME/CFS) and a new human retrovirus, XMRV. Yet ME/CFS is currently diagnosed symptomatically and requires the patient experience 6 months of severe fatigue. This disease is chronic and often causes a great deal of anxiety for those who suffer from its debilitating symptoms. Therefore, an individual suffering from ME/CFS could be erroneously classified within the new DSM-5 category as a somatic disorder when in fact they clearly suffer from a chronic infectious disease process, evidenced by many physical abnormalities. (Low grade fever, sore throat, severe headache, cognitive dysfunction, and enlarged lymph nodes, and painful joints and muscles).

The new language also adds undue concern about one’s health as criteria for establishing the diagnosis of complex somatic disorder. This is an immeasurable description of behavior that suggests that if one is suffering from an unknown illness and expresses deep concern or seeks answers from multiple sources (a potentially perfectly natural response to such a circumstance) that one could then be classified as having a somatic disorder. Yet, newly recognized diseases require time to develop the appropriate conformational laboratory tests. During that period of time, does it not remain the responsibility of physicians to recognize the patient’s illness and reassure the patient that they will do all they can to alleviate their suffering?

A person who is afflicted with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is often incapable of taking care of their own most basic needs. The swiftness with which one is incapacitated without relief often results in accompanying depression and anxiety. If this patient is advised not to believe their own symptoms of illness they may become further traumatized by the doctors whose sworn duty is to “first do no harm”.

The Whittemore Peterson Institute is deeply concerned that there will be future complex biological diseases of unknown origin, which could too easily be ignored as the result of the diagnosis of “complex somatic disorders”. This would result in serious consequences for those patients who continue to decline in health without appropriate medical interventions.

The term CSSD may also serve as a diagnosis to be used by physicians who currently lack the sophisticated diagnostic tools to describe a new and emerging illness, causing serious harm to those who are ill. Two such recent examples of diseases once categorized as somatic illnesses are multiple sclerosis which was originally called, “hysterical women’s disease” and gastrointestinal ulcers. Only after these diseases were pursued by those who believed in their physical causes with subsequent biological research, were medically effective treatments made available. Thus creating a somatic diagnosis, when there is in fact a physical illness, would relegate a population of patients to many more years of suffering, while basic biological research funding is denied.

For these reasons, the WPI requests that the APA thoughtfully examine the purpose and possible unintended consequences for the encompassing somatic category of illness, Complex Somatic Disorder, and emphatically requests that the DSM-5 task force reject CSSD, as a medical or psychiatric diagnosis.

Sincerely,

Annette Whittemore
Founder and CEO
Whittemore Peterson Institute
6600 North Wingfield Parkway
Sparks Nevada 89436
Phone: 775.348.2335

Fax: 775.348.2350
www.wpinstitute.org

Note: On the subject of the use of the word “somatic”, Angela Kennedy published this note, in June 2009:

I’ve noticed for some time that various people have been using the term ‘somatic’ as if it signified a ‘psychosomatic’ or ‘psychogenic’ condition.

This is incorrect. The OED definition of ‘somatic’ is “of or relating to the body, especially as distinct from the mind” (my italics). The word comes from the Greek ‘soma’ meaning ‘body’.

Even when proponents of ‘psychogenic’ explanations (it’s in your mind, you’re imagining it, misinterpreting it, faking it, caused it by your own beliefs etc. etc. etc.) use the term ‘somatic illness’ they actually do mean an illness of the body. They may then claim this somatic (or bodily illness) is caused by psychological dysfunction, but the word ‘somatic’ does not mean “illness caused by psychological dysfunction”. It merely means illness of a body, or a bodily illness.

It is important that this word is used correctly, especially when people write to the media, government, the medical establishment etc. Otherwise we are in danger of seeing apparent objections published, from advocates, to saying ME/CFS is a bodily illness, purely because someone has used the word ‘somatic’ incorrectly!

Response from Steungroep Netherlands CFS patient organisation

CFS Associazione Italiana / CFS Italian Association

Giada Da Ros
President
CFS Associazione Italiana

http://www.salutemed.it/cfs/

Submission from CFS Italian Association to DSM-5 Task Force – English version

ME Association (UK)

Submission compiled by Dr Ellen Goudsmit and endorsed by the MEA:

Due to the paucity of reliable and consistent data, the concept of chronic fatigue syndrome (CFS) should not be included in DSM-5 or a note of caution is required as, at the present time, no scientist can adequately judge whether symptoms are misattributed etc (eg Jason et al, 2005, Lane et al, 2003, McGarry et al 1994, Paul et al 1999). There is more evidence of pathology in subsets and without doing specialist tests, physicians cannot draw firm conclusions.

Any reference to IBS is similarly unhelpful as the symptoms, like CFS, seem to have a multifactorial aetiology and, in the same way, one cannnot assess misattribution, ‘anxiety’ as opposed to valid concern, unless one does specialist tests to judge whether the ‘anxiety’ is justified. Some may have carcinoma of the bowel.

CBT helps some patients, to a degree. The text re CBT goes beyond the evidence. Effect size statistics re CFS tend to be modest (Jason et al 2007, Price et al 2008).

Refs:

Jason, L.A., Corradi, K., Torres-Harding, S., Taylor R.R., & King, C. (2005). Chronic fatigue syndrome: the need for subtypes. Neuropsychology Review, 15, 29-58.

Jason, LA., Torres-Harding, S., Friedberg, F., Corradi, K., Njoku, MG., Donalek, J et al. (2007) Non-pharmacologic interventions for CFS: A randomized trial. Journal of Clinical Psychology in Medical Settings, 14, 275-296.

Lane, Lane, R.J.M., Soteriou, B.A., Zhang, H., & Archard, L.C. (2003). Enterovirus related metabolic myopathy: a  postviral fatigue syndrome. Journal of Neurology, Neurosurgery and Psychiatry, 74, 1382-1386.

McGarry, F., Gow, J., & Behan, P.O. (1994). Enterovirus in the chronic fatigue syndrome. Annals of Internal Medicine, 120, 972-973.

Paul, L., Wood, L., Behan, W.M.H., & Maclaren, W.M. (1999). Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome. European Journal of Neurology, 6, 63-69.

Price, JR., Mitchell, E., Tidy, E., & Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews 2008; Issue 2. Art No.: CD001027. DOI: 10.1002/14651858.CD001027.pub2.

Action for M.E.

Statement to the American Psychiatric Association in relation to the possibility of M.E./CFS being classified as a psychiatric disorder (submitted last night):

http://www.afme.org.uk/news.asp?newsid=812

Complex Somatic Symptom Disorder
20 April 2010

We oppose any attempt to classify CFS/M.E. as a psychiatric disorder either explicitly or implicitly.

Action for M.E.’s statement to the American Psychiatric Association in relation to the possibility of M.E./CFS being classified as a psychiatric disorder:

Action for M.E. would like to thank the American Psychiatric Association’s for the opportunity to comment on the the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

We were gravely concerned and alarmed to hear of the possibility of CFS/ME being classified as a psychiatric disorder, based on comments made in their Work Group on somatoform disorders.

As the largest by far CFS/ME charity in the UK, Action for M.E. would stress that CFS/M.E. is a long-term and disabling physical illness. M.E. is classified by the World Health Organisation in ICD 10 G93.3 as a neurological disorder. There is a large and growing body of evidence from scientific research and from clinicians which supports this position.

Invest in ME

The American Psychiatric Association has recently called for comments to be forwarded regarding their draft proposal for DSM-V (Diagnostic and Statistical Manual of Mental Disorders (DSM) is the standard classification of mental disorders used by mental health professionals in the United States and contains a listing of diagnostic criteria for every psychiatric disorder recognized by the U.S. healthcare system).

Included in DSM-V is a section entitled Complex Somatic Symptom Disorders.

Considering that psychiatrists in the UK have caused such harm to people with ME and their families over the past generation Invest in ME decided that input needed to be made to the APA regarding this section.

Below is Invest in ME’s response – submitted on 19th April 2010.

The CSSD criteria are described here –

To meet criteria for CSSD, criteria A, B, and C are necessary.

A. Somatic symptoms:
Multiple somatic symptoms that are distressing, or one severe symptom

B. Misattributions, excessive concern or preoccupation with symptoms and illness: At least two of the following are required to meet this criterion:
(1) High level of health-related anxiety.
(2) Normal bodily symptoms are viewed as threatening and harmful
(3) A tendency to assume the worst about their health (catastrophizing).
(4) Belief in the medical seriousness of their symptoms despite evidence to the contrary.
(5) Health concerns assume a central role in their lives

C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is chronic and persistent (at least 6 months).

The link to the APA web page – entitled DSM-5: The Future of Psychiatric Diagnosis is at –

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

Submission – to the American Psychiatric Association on DSM-V

Invest in ME is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (ME or ME/CFS), as defined by WHO-ICD-10-G93.3 – (also referred to as Chronic Fatigue Syndrome (CFS) – although in this letter we shall use the term ME/CFS).

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.

This response should be seen against the backdrop of the devastation caused by some psychiatrists in the UK regarding their treatment of people with ME/CFS and their promotion of false perceptions about the disease to the public, healthcare authorities and government.

When a generation of patients have been adversely affected by misinformation promoted by a section of psychiatrists in the UK and when the field of psychiatry has been brought into disrepute by these same psychiatrists then 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 for whom they must surely be 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 lump together many illnesses. It cannot be helpful for clinicians or researchers to have such a variety of patients under one category especially when very little is known of the pathophysiology of these conditions placed in this category.

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

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

Not all physical illnesses can be easily determined without extensive investigations and this category may allow clinicians to miss brain tumours, rare cancers and other illnesses which are difficult to diagnose.

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 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.

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

Parents of children with ME 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.

Severely ill grown ups with this disease are denied usual medical care and threatened with sectioning 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. In the UK the profession of psychiatry also suffers as psychiatrists are often derided as uncaring, unscientific and unprofessional. The possibility of litigation ensuing against psychiatrists who cause such damage should also not be forgotten.

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 are at least thankful that the APA has not attempted to repeat the major mistake being made by prominent UK psychiatrists in attempting to classify Myalgic Encephalomyelitis in amongst Complex Somatic Symptom Disorders.

Such a course of action would create another source of conflict between patients and the field of psychiatry and lead to unnecessary loss of health, potential loss of life and possible legal actions being taken against those professional organizations and/or individuals who use incorrect guidance for their diagnoses,

Yours Sincerely,

Kathleen McCall

Chairman Invest in ME
Charity Nr 1114035

Invest in ME
PO Box 561
Eastleigh SO50 0GQ
Hampshire
England

Massachusetts Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy and Fibromyalgia Association (Mass. CFIDS/ME & FM)

Mass. CFIDS/ME & FM

LETTER TO THE DSM-5 COMMITTEE OF THE APA

The Board of Directors of the Massachusetts Chronic Fatigue and Immune Dysfunction Syndrome / Myalgic Encephalopathy and Fibromyalgia Association (Mass. CFIDS/ME &FM) has reviewed your proposed revisions of DSM-IV destined for DSM-5. Our special focus has been on your newly proposed category “Complex Somatic Symptom Disorder”. Our concern is not so much about the fact that you want to simplify terms for somatoform disorders but about the particular criteria cited and the potential misuse of the category.

We share the concern, heard from individuals and organizations around the world, that this new category might be too readily misused to include chronic fatigue syndrome (“CFS”, also now known as ME or myalgic encephalopathy) and fibromyalgia as if they are forms of a psychological disorder. Most simply, they are not now psychologically caused illnesses nor have they ever been so. This concern doesn’t come out of the blue. Here in Massachusetts it is based on two and a half decades of seeing mistaken and harmful misdiagnoses based on totally inappropriate and harmful misconceptions of what CFS and fibromyalgia are and what they are caused by.

Our organization, celebrating our 25th year of existence helping patients with these illnesses, has seen firsthand the terrible toll exacted by the trail of misdiagnoses. Patients are tainted, dismissed, not properly treated, and often referred to equally misinformed mental health clinicians who then compound the damage.

In our view, the key problem is not so much the diagnostic nomenclature as it is the wrong and hugely out-of-date conceptions on the part of psychiatrists and non-psychiatric physicians of the very nature and likely causes of both CFS/ME and FM. While it is true that there may be important psychological disturbances following onset, these are secondary.

Over the past fifteen years, increasing numbers of researchers from around the world have pinpointed the likely biological causes, the complex pathophysiology that follows from the initial infectious or toxic triggers, and the interacting and dysfunctional multiple body systems (immune, central and peripheral nervous systems, endocrine, cellular [mitochondrial], etc) involved. Genetic and genomic factors are being elucidated. Certain viruses have long been implicated. Most recently a retrovirus, XMRV, has been implicated and is actively being studied in several centers. While no widely accepted biomarkers are currently available, many key researchers believe that it will not be long before one or more biomarkers will be found. (For example there are many changes in components of immune system functioning.)

While there is no definitive cure as yet, forms of treatment have been developed over the years that can alleviate many of the symptoms. Here is where mental health clinicians can help; sleep disorders are common, and if there are serious secondary psychological symptoms, certain therapies can help.

Dr. Anthony Komaroff, Professor of Medicine at Harvard Medical School and a long-time researcher in the field has said the following: “there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness. It’s not an illness that people can simply imagine that they have and it’s not a psychological illness. In my view, that debate, which has waged for twenty years, should now be over”. [1] Four years later there is even more evidence for Dr. Komaroff’s assertion.

The bottom line is that CFS and fibromyalgia are not psychological illnesses. It is then essential that the American Psychiatric Association vigorously help educate graduate and resident psychiatrists on what is now known. While the wording and criteria for “Complex Somatic Symptom Disorder” will matter so as to avoid confusing chronic fatigue syndrome and fibromyalgia with a somatoform disorder, it will be new understanding of the biological nature, proper diagnostic techniques, and appropriate treatments of these illnesses that will matter most. We consider these re-education efforts to be a responsibility of the American Psychiatric Association along with researchers and clinicians expert in the fields of chronic fatigue syndrome and fibromyalgia.

Alan Gurwitt, M.D.
President, Massachusetts CFIDS/ME & FM Association

(Retired adult and child psychiatrist, Distinguished Fellow of the American Psychiatric Association) 4/16/10

[1] Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA Government CDC press conference on November 3, 2006

A second letter was submitted by Kenneth Casanova, a Board member and past President, which wasn’t included with last year’s submissions, on this site. A full copy is published in this post, with kind permission of the author: http://wp.me/pKrrB-19o which is prefaced by an introduction by Dr Alan Gurwitt.

The CFIDS Association of America

Open PDF here on the CFIDS site or here on Dx RevisionWatch: CFIDS DSM-5 Statement

April 1, 2010

DSM-5 Task Force

American Psychiatric Association
1000 Wilson Boulevard
Suite 1825
Arlington, VA 22209

Members of the DSM-5 Task Force,

In response to an open request for input on proposed changes to the fifth revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM), the CFIDS Association of America submits the following statement and urgent recommendation.

The CFIDS Association strongly questions the utility of the proposed rubric of complex somatic symptom disorder (CSSD). According to the DSM-5 website

(http://www.dsm5.org/Documents/Somatic/APA%20Somatic%20Symptom%20Disorders%20description%20January29%202010.pdf, accessed March 28, 2010):

To meet criteria for CSSD, criteria A, B, and C are necessary.

A. Somatic symptoms:

Multiple somatic symptoms that are distressing, or one severe symptom

B. Misattributions, excessive concern or preoccupation with symptoms and illness: At least two of the following are required to meet this criterion:

(1) High level of health-related anxiety.

(2) Normal bodily symptoms are viewed as threatening and harmful

(3) A tendency to assume the worst about their health (catastrophizing).

(4) Belief in the medical seriousness of their symptoms despite evidence to the contrary.

(5) Health concerns assume a central role in their lives

C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is chronic and persistent (at least six months).

The creation of CSSD appears to violate the charges to DSM-5 Work Groups to clarify boundaries between mental disorders, other disorders and normal psychological functioning

(http://www.dsm5.org/about/Pages/faq.aspx, accessed March 28, 2010). This is especially true with regard to patients coping with conditions characterized by unexplained medical symptoms, or individuals with medical conditions that presently lack a mature clinical testing regimen that provides the evidence required to substantiate the medical seriousness of their symptoms. For instance, all of the case definitions for CFS published since 1988 have required that in order to be classified/diagnosed as CFS, symptoms must produce substantial impact on the patient’s ability to engage in previous levels of occupational, educational, personal, social or leisure activity. Yet, all of the case definitions rely on patient report as evidence of the disabling nature of symptoms, rather than results of specific medical tests. So by definition, CFS patients will meet the CSSD criteria A and C for somatic symptoms and chronicity, and by virtue of the lack of widely available objective clinical tests sensitive and specific to its characteristic symptoms, CFS patients may also meet criterion B-4.

As drafted, the criteria for CSSD establish a “Catch-22” paradox in which six months or more of a single or multiple somatic symptoms – surely a distressing situation for a previously active individual – is classified as a mental disorder if the individual becomes “excessively” concerned about his or her health. Without establishing what “normal” behavior in response to the sustained loss of physical health and function would be and in the absence of an objective measure of what would constitute excessiveness, the creation of this category poses almost certain risk to patients without providing any offsetting improvement in diagnostic clarity or targeted treatment.

To provide another common example, back pain that is debilitating and severe, with negative MRIs, is still debilitating and severe back pain. A patient in this situation might be concerned about this back pain, might view it as detrimental to his quality of life and livelihood, and might direct time and resources to seeking care from multiple specialists (e.g., neurology, rheumatology, orthopedics, rehabilitation) to relieve it. Each of these specialists is likely to recommend slightly different therapies, compounding the patient’s focus on alternative explanations for and long-term impact of decreased function and diminished health. Such a patient could be diagnosed with CSSD, yet no empiric evidence has been provided by the Somatic Symptoms Disorders Work Group that applying the label of CSSD will facilitate communication with the patient, add clinical value to the patient’s experience, or improve the care any of these various specialists might provide.

The Somatic Symptoms Disorder Work Group states that patients fitting these criteria are generally encountered in general medical settings, rather than mental health settings

(http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368, accessed March 28, 2010), further limiting the usefulness of this classification in a manual written primarily for the benefit of mental health professionals.

The Somatic Symptoms Disorders Work Group conveys considerable uncertainty about the impact of this new label, in spite of the charge to all DSM-5 work groups to demonstrate the strength of research for the recommendations on as many evidence levels as possible. The Somatic Symptoms Disorders Work Group states:

“It is unclear how these changes would affect the base rate of disorders now recognized as somatoform disorders. One might conclude that the rate of diagnosis of CSSD would fall, particularly if some disorders previously diagnosed as somatoform were now diagnosed elsewhere (such as adjustment disorder). On the other hand, there are also considerable data to suggest that physicians actively avoid using the older diagnoses because they find them confusing or pejorative. So, with the CSSD classification, there may be an increase in diagnosis.”

(http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368, accessed March 28, 2010)

The proposed DSM-5 revision correctly does not identify chronic fatigue syndrome (CFS) as a condition within the domain of mental disorders and the DSM. However, past discussions of the Somatic Symptoms Disorder Work Group have included such physiological disorders as chronic fatigue syndrome, irritable bowel syndrome and fibromyalgia

(http://www.dsm5.org/Research/Pages/SomaticPresentationsofMentalDisorders%28September6-8,2006%29.aspx)

as “somatic presentations of mental disorders.” None of the research and/or clinical criteria for chronic fatigue syndrome published since 1988 have established CFS as a mental disorder and a continuously growing body of literature demonstrates CFS to be a physiological disorder marked by abnormalities in the central and autonomic nervous systems, the immune system and the endocrine system. The role of infectious agents in the onset and/or persistence of CFS has received renewed attention since the DSM-5 revision process began in 1999. Most recently, the October 2009 report of evidence of a human retrovirus, xenotropic murine leukemia-related retrovirus (XMRV), in CFS patients in Science (Lombardi, 2009) has generated new investigations into this and other infectious agents in CFS.

The conceptual framework for CFS detailed in the “Clinical Working Case Definition, Diagnostic and Treatment Protocols” (Carruthers, 2003) serves as a useful tool for professionals to establish a diagnosis of CFS, address comorbidities that may complicate the clinical presentation and distinguish CFS from conditions with overlapping symptomotology. Research on CFS continues to explore and document important biomarkers. Lack of known causation does not make CFS – or the CFS patient’s illness experience – psychopathological any more than multiple sclerosis, diabetes, or other chronic illnesses with objective diagnostic measures, would be so considered.

For the reasons stated above and the general failure of the proposed creation of the CSSD to satisfy the stated objectives of the DSM-5 without risking increased harm to patients through confusion with other conditions or attaching further stigma, the CFIDS Association strongly urges the DSM-5 Task Force to abandon the proposed creation of CSSD.

Sincerely,

K. Kimberly McCleary

President & CEO

The CFIDS Association of America

Vermont CFIDS Association

First Do No Harm

[…]

The following partial pre-release draft letter speaks eloquently for this issue, and can be shared, adapted, and/or sent to the DSM-5 Website.

Rik Carlson

(We) are deeply concerned by the American Psychiatric Association’s possible reclassification of CFS as a somatoform disorder in DSM-5.

Researchers at both the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) have documented the physiological and pathophysiological underpinnings of this illness. The CDC, under the leadership of Julie Gerberding, launched a multi-million-dollar campaign within the past few years to underscore that CFS is a multi-system disorder which can and should be treated as such.

Based upon the numerous, peer-reviewed studies that have linked CFS to infection and multiple organ systems abnormalities, classifying CFS as a Complex Somatic Symptom Disorder seems unreasonable and unwarranted.

As estimated and communicated to you by the IACFS/ME: Over the past 25 years, 2,000 peer-reviewed 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 lead to symptom worsening. In contrast to clinical depression, motivation is much less affected in CFS and the desire to be active remains intact.

In the past, the absence of a documentable, medical explanation has relegated other illnesses to a psychiatric diagnosis. Illnesses given psychiatric diagnoses out of ignorance are later given more accurate, medical diagnoses with additional scientific research. Surely, you do not wish to demean the field of psychiatry by repeating the errors of psychiatry’s past.

We are further concerned that the reclassification of CFS as a somatoform disorder in the DSM-5 will result in decreased care of CFS patients. The CDC’s Chronic Fatigue Syndrome educational programs for physicians explicitly suggest the management of CFS by primary care physicians with the suggestion of a psychiatric consult if the patient manifests appropriate symptoms. The reclassification of CFS as a somatoform disorder in the DSM-5 will create confusion for many practitioners. The confusion thereby created will demean the illness, and the willingness of some practitioners to treat it. Moreover, the listing of CFS as a somatoform disorder may impact the ability of CFS patients to receive reimbursement of their treatment costs resulting in a loss of treatment and benefits.

Notice from IACFSME: DSM-5 May Include CFS as a Psychiatric Diagnosis and submission in DSM-5 public review process

IACFSME

International Association for Chronic Fatigue Syndrome

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

25% ME Group

The 25% ME Group has published a 12 page “Submission re: DSM-V and ME/CFS”, compiled by Professor Malcolm Hooper and Margaret Williams on behalf of this organisation for the severely affected. The submission can be read on the 25% ME Group here in Word .doc format:

25% ME Group DSM-5 submission 2010

Patient advocate submissions

Submitted by Suzy Chapman, UK, Patient advocate

In response to: Somatic Symptom Disorders > Complex Somatic Symptom Disorder

Although the Diagnostic and Statistical Manual of Mental Disorders does not have quite the relevance for UK and some European patient populations, since ICD Chapter V is used in some countries in preference to the DSM, diagnostic criteria in the forthcoming edition will shape the international research and literature landscape and influence not only how disorders are defined for international research purposes but how patients and their needs are perceived by those responsible for their medical treatment and social care. It is hoped then, that the views of those submitting responses to the preliminary draft proposals from outside the USA will be afforded due consideration.

I submit the following comments and concerns with regard to:

Somatic Symptom Disorders > Complex Somatic Symptom Disorder

I welcome the decision of the Task Force to extend review of the preliminary draft revisions to the lay public as well as to APA members, clinicians, health professionals, researchers, administrators and other end users and for the Task Force’s recognition that patients, their carers, families and advocates and the patient organisations that represent their interests are crucial stakeholders in any consultation process. Their input merits particular consideration given the absence of patient representation within the individual Work Groups.

Since 2007, when the initial Work Groups were first assembled, the infrequency of reports and their brevity and lack of detail has made it difficult for those outside the field and the lay public to monitor the progress of the various Work Groups. Some Work Groups, for example, this group for Somatic Symptom Disorders, have published reports and editorials in subscription journals which are not readily available to those outside the field and without access to journal papers.

It would have been helpful if the publication of the free access Editorial: Dimsdale J, Creed F: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report on behalf of the Somatic Symptom Disorders Work Group in the June ’09 edition of J Psychosom Res, 66 (2009) 473–476, which discussed and expanded on the proposals in your brief April ’09 progress update, could have been noted on the Somatic Symptom Disorders Work Group Progress Report page for wider dissemination.

It might be considered a purely tokenistic gesture by the Task Force to extend involvement in the DSM-5 development process to the lay public if they are unable to inform themselves around the deliberations of the groups charged with revision because they are largely excluded from the literature, symposia, conferences and workshops where discussions around proposals are taking place. They therefore rely on more detailed reports, and the paucity and sketchiness of Work Group reports to date has disappointed.

I acknowledge that the Task Force has had to balance opening up the draft proposals review exercise to a wide range of stakeholders against conducting a more restricted consultation process in which responses are collated, published and responded to. It is, however, disconcerting for both professionals and the lay public to tender responses into which considerable effort may have been invested if there is no feedback on how those comments, concerns and suggestions have been received by the respective Work Groups and in the knowledge that their submissions will not be visible for scrutiny by other stakeholders, since there appear to be no plans for aggregating and publishing summaries of the key areas of concern for each set of Work Group proposals.

Given that major changes in diagnostic nomenclature are being proposed for the revision of DSM-IV “Somatoform Disorders” categories, does the Work Group plan to publish an update on any reconsiderations and modifications the group intends to adopt before finalising proposals in readiness for field trials and in the interests of transparency, will it also note key areas of concern for which the Work Group does not intend to make accommodations?

Complex Somatic Symptom Disorder

There is considerable concern amongst international patient organisations and advocates for the implications of the “Somatic Symptom Disorders” Work Group proposal for combining Somatoform Disorders, Psychological Factors Affecting Medical Condition (PFAMC), and Factitious Disorders under a common rubric – “Somatic Symptom Disorders”, and for the creation of a new classification, “Complex Somatic Symptom Disorder” (CSSD).

Professionals in the field, interest groups and the media have been voicing concerns for the last couple of years that proposals for the broadening of criteria for some DSM categories would bring many more patients under a mental health diagnosis.

But if these major revisions to the “Somatoform Disorders” categories were to be approved there would be medical, social and economic implications to the detriment of all patient populations and especially those bundled by many of your colleagues within the field of liaison psychiatry and psychosomatics under the so-called “Functional Somatic Syndromes” (FSS) and “Medically Unexplained Syndromes” (MUS) umbrellas.

The Somatic Symptom Disorders Work Group’s proposal to redefine “Somatoform Disorders” would legitimise the potential for the application of an additional diagnosis of “Somatic Symptom Disorder” to all medical diseases and disorders, whether diagnosed general medical disorders, psychiatric disorders or so-called “unexplained medical symptoms and syndromes”; dual-diagnosing general medical conditions under the guise of “eliminating mind-body dualism.”

There are significant concerns for the implications for patients with Chronic fatigue syndrome, ME, Fibromyalgia, IBS, chemical injury, chemical sensitivity, chronic Lyme disease and GWS.

In the June ’09 Journal of Psychosomatic Research Editorial “The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report”, which expanded on the group’s brief April report, Chair, Joel Dimsdale, MD, and fellow Work Group member, Francis Creed, MD, reported that by doing away with the “controversial concept of medically unexplained”, the proposed classification might diminish “the dichotomy, inherent in the ‘Somatoform’ section of DSM-IV, between disorders based on medically unexplained symptoms and patients with organic disease.”

The conceptual framework the group were proposing, at that point:

“…will allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome.”

Javier Escobar, MD, Director of the University of Medicine and Dentistry of New Jersey (UMDNJ) – Robert Wood Johnson Medical School (RWJMS) Medically Unexplained Physical Symptoms (MUPS) Research Center, which has been supported with over $4M in funding by the National Institute of Mental Health (NIMH) is a DSM-5 Task Force member. It is understood that Dr Escobar serves as a Task Force liaison to the Somatic Symptom Disorders Work Group and is said to work closely with your group [1].

In the August ’08, Psychiatric Times Special Report “Unexplained Physical Symptoms: What’s a Psychiatrist to Do?” [2] co-authors, Escobar and Marin, wrote:

“…Perhaps as a corollary of turf issues, general medicine and medical specialties started carving these syndromes with their own tools. The resulting list of ‘medicalized’, specialty-driven labels that continues to expand includes fibromyalgia, chronic fatigue syndrome, multiple chemical sensitivity, and many others.”

“…These labels fall under the general category of functional somatic syndromes and seem more acceptable to patients because they may be perceived as less stigmatizing than psychiatric ones. However, using DSM criteria, virtually all these functional syndromes would fall into the somatoform disorders category given their phenomenology, unknown physical causes, absence of reliable markers, and the frequent coexistence of somatic and psychiatric symptoms.”

In Table 1, under the heading “Functional Somatic Syndromes (FSS)” Escobar and Marin list:

“Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple chemical sensitivity, Nonspecific chest pain, Premenstrual disorder, Non-ulcer dyspepsia, Repetitive strain injury, Tension headache, Temporomandibular joint disorder, Atypical facial pain, Hyperventilation syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain, Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome, Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness, Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast infection, Total allergy syndrome”

This radical proposal for a “Complex Somatic Symptom Disorder” category will provide a convenient dustbin into which these diverse disorders might be shovelled.

It will expand the markets for antidepressant and antipsychotic drugs and therapies such as CBT to address perceptions of

           …poor adjustment…disproportionate distress and disability…dysfunctional and maladaptive response…unhelpful illness beliefs…activity avoidance…psychological distress in the wake of a general medical condition…personality traits…poor coping strategies contributing to worsening of a medical condition…sick role behaviour…secondary gains…

and other perceived barriers to “adjustment” or “rehabilitation”.

It will provide an attractive means of reducing the financial burden to governments and health insurers of providing appropriate medical investigations, medical treatments, financial and social support.

Whilst the proposals suggest that:

“a diagnosis of CSSD is inappropriate in the presence of only unexplained medical symptoms. Similarly, in conditions such as irritable bowel syndrome, CSSD should not be coded unless the other criterion (criterion B—attributions, etc) is present”

the application of an additional diagnosis of “Complex Somatic Symptom Disorder” will be based on subjective measures of whether the patient is perceived as having “dysfunctional and maladaptive beliefs” or “cognitive distortions” about their symptoms or disease resulting in “Misattributions [and] excessive concern or preoccupation with symptoms and illness”, whether the patient is “catastrophising” or has adopted “the sick role”.

Misidentification will increase the application of inappropriate treatment regimes – antidepressants and antipsychotic drugs, and therapies such as CBT to modify “dysfunctional and maladaptive beliefs” about the patient’s symptoms and disease, and behavioral techniques and “to alter illness and sick role behaviors and promote more effective coping”.

Get it wrong and patients are exposed to the risk of iatrogenic disease.

Get it wrong and there will be implications for the securing of health insurance, welfare, social care packages, disability and workplace adaptations and provision of education tailored to the needs of children too sick to access mainstream school.

Get it wrong and families will be put at increased risk of wrongful accusation of “factitious disorder by proxy/factitious disorder on other”.

Get it wrong and practitioners are at risk of litigation.

The CFIDS Association of America [3] has submitted:

“As drafted, the criteria for CSSD establish a “Catch-22” paradox in which six months or more of a single or multiple somatic symptoms – surely a distressing situation for a previously active individual – is classified as a mental disorder if the individual becomes “excessively” concerned about his or her health. Without establishing what “normal” behavior in response to the sustained loss of physical health and function would be and in the absence of an objective measure of what would constitute excessiveness, the creation of this category poses almost certain risk to patients without providing any offsetting improvement in diagnostic clarity or targeted treatment.”

and

“This is especially true with regard to patients coping with conditions characterized by unexplained medical symptoms, or individuals with medical conditions that presently lack a mature clinical testing regimen that provides the evidence required to substantiate the medical seriousness of their symptoms. For instance, all of the case definitions for CFS published since 1988 have required that in order to be classified/diagnosed as CFS, symptoms must produce substantial impact on the patient’s ability to engage in previous levels of occupational, educational, personal, social or leisure activity. Yet, all of the case definitions rely on patient report as evidence of the disabling nature of symptoms, rather than results of specific medical tests. So by definition, CFS patients will meet the CSSD criteria A and C for somatic symptoms and chronicity, and by virtue of the lack of widely available objective clinical tests sensitive and specific to its characteristic symptoms, CFS patients may also meet criterion B-4.”

The UK patient organisation, the 25% ME Group [4] has submitted:

“There is international concern that the proposed diagnostic category of CSSD as it is currently defined will be used to incorrectly diagnose ME/CFS patients with a psychiatric disorder.”

and

“It is of note that the draft of the proposed new category of CSSD states: “Having somatic symptoms of unclear aetiology is not in itself sufficient to make this diagnosis. Some patients, for instance with irritable bowel syndrome or fibromyalgia would not necessarily qualify for a somatic symptoms disorder diagnosis” (APA Somatic Symptom Disorders, 29th January 2010) but no such assurance is offered with respect to ME/CFS. This needs to be rectified.”

I call on the Somatic Symptom Disorders Work Group to give urgent reconsideration to their proposal for a new category “Complex Somatic Symptom Disorder” – while there’s still time to put it right.

Suzy Chapman, UK patient advocate

[1] Escobar, Javier I., M.D., M.Sc. DSM-5 Task Force Member Biosketch and Disclosure information:
http://www.dsm5.org/MeetUs/Documents…%201-11-10.pdf

[2] Marin H, Escobar JI: Unexplained Physical Symptoms What’s a Psychiatrist to Do? Psychiatric Times. Aug 2008, Vol. 25 No. 9: http://www.psychiatrictimes.com/disp…/10168/1171223

[3] CFIDS Association of America submission to the DSM-5 public review: http://www.cfids.org/advocacy/2010/dsm5-statement.pdf

[4] 25% ME Group submission to the DSM-5 public review: http://www.25megroup.org/News/DSM-V%20submission.doc

Submitted by Suzy Chapman, UK

In response to: Overall Comments

Although the Diagnostic and Statistical Manual of Mental Disorders does not have quite the relevance for UK and some European patient populations as it does for the USA, diagnostic criteria in the forthcoming edition will shape the international research and literature landscapes for many years to come. DSM-5 will influence not only how disorders are defined for international research purposes but how patients and their needs are perceived by those responsible for their medical treatment and social care. It is hoped then, that the views of those from outside the USA submitting comment in response to the preliminary draft revisions will be afforded due consideration.

I would like to raise the following points in this “Overall Comment” section:

I welcome the decision of the Task Force to extend the submission of responses to preliminary draft revisions to the lay public as well as to APA members, clinicians, allied health professionals, researchers, administrators and other end users and for the Task Force’s recognition that patients, their carers, families and advocates and the patient organisations that represent their interests are crucial stakeholders in any consultation process. Their input merits particular consideration given the absence of patient representation within the individual Work Groups.

Professionals within the field will have been alerted to the public review process well in advance of 10th February; some specific patient groups will have already been interacting with relevant Work Groups with the opportunity of informing the revision process prior to the release of draft proposals. But whilst those patient communities with organised and vocal advocates will have used the internet and other channels of communication to alert their interest groups there may be many patient groups for which awareness of the DSM-5 development process and the opportunity to review proposals and submit responses may have taken a while to come to their attention.

Additionally, patient representation organisations would have benefited from more time in which to consult with external advisers and their own members, following the release of proposals, in order that the views of their members might be sought to inform their responses. This is particularly relevant since from 2007, when the Work Groups were formed, just two progress reports have been published by the various Work Groups, which in many cases have been notable for their brevity and lack of detail.

Some Work Groups, for example, the Work Group for Somatic Symptom Disorders, have published reports and editorials in subscription journals which have discussed and expanded on the proposals in the brief progress updates. But these journal reports, editorials and commentaries have not always been readily available to those outside the field and without journal paper access.

It would have been helpful, for example, if the publication of the free access Editorial: Dimsdale J, Creed F: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report on behalf of the Somatic Symptom Disorders Work Group in the June ‘09 edition of J Psychosom Res, 66 (2009) 473–476 could have been noted on the Somatic Symptom Disorders Work Group Progress Report page for wider dissemination.

I consider that the period for public review should have been at least a full three months in order enable better participation by patient interest groups.

It is understood from the current DSM-5 Timeline that the next opportunity for public review will be during May-July 2011, when revised draft diagnostic criteria will be posted online for approximately one month, following the internal review, to allow the public to provide feedback.

For the reasons above, I suggest that the Task Force gives consideration to extending this beta review period from one month to at least two months.

It is possible that I may have overlooked it, but I have noted no reference on the DSM-5 website to the submitting of comments through any other means than via the webpage text editor, for which registration is required. I have received a number of reports from patients of the difficulties they have experienced both with the registration process and with uploading comment. I would like to have seen the option for responses to be submitted via email and also via paper letter. This would also have been more inclusive of those who prefer not to use electronic means because of limited access to, or lack of confidence with, computers or whose access to computers is restricted due to ill health or disability.

Perhaps the issue of inclusivity can be addressed before the 2011 review period?

My experience of participation in previous consultation exercises has been limited to formal consultation processes where stakeholders have been required to register an interest, where responses to a draft or consultation document have been acknowledged and where, in some cases, there has been a commitment on the part of the document development group to respond publicly to responses received.

I acknowledge that the Task Force has had to balance opening up the draft proposals review process to a wide range of stakeholders against conducting a more restricted consultation process in which responses are acknowledged, recorded and responded to. It is, however, disconcerting for both professionals and the lay public to tender responses into which considerable effort may have been invested where there is no real understanding of how those responses are to be collated, considered and used to inform any revisions to the drafts prior to the commencement of field trials and with the knowledge that their comments and concerns will not be visible for scrutiny by other stakeholders.

Does the Task Force have any plans to publish summaries of the key areas of concern brought to their attention via the public review process for each of the Work Groups’ proposals and to publish Work Group/Task Force responses?

The APA continues to participate with the WHO in a DSM-ICD Harmonization Coordination Group and in the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders, chaired by DSM-5 Task Force member, Steven Hyman, MD.

To date, five meetings of the Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders have been held in Geneva. Summaries of the first four meetings held since 2007 have been published on the WHO main website. (A summary of the last meeting which took place over six months ago, in September 2009, has still to be published.)

It was raised, last year, with the Task Force, that since the DSM-5 Task Force participates in the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders and a DSM-ICD Harmonization Coordination Group that consideration should be given to publishing copies of the summaries of these meetings on the DSM-5 pages as well as on the WHO website. No response from the DSM-5 Task Force to this suggestion was forthcoming.

Would the Task Force please give further consideration to this suggestion?

Published with permission of Tammie Page, CFS/ME patient, US

As a counselor, I am very familiar with the DSM and have used it a lot. I believe that it is a valuable tool for diagnosing and understanding clients. I also believe that it can be dangerous when applied too rigidly, and when its use causes practitioners to put clients in boxes, rather than view them as individuals. It can also lead to self-fulfilling behaviors on the part of the clients and to problems with insurance company coverage and general stigma, especially if a misdiagnosis gets stuck on a client. For such reasons, it is something that should be used with caution, understanding, and a respect for its impact. Additionally, it should be made as clear and precise as possible, while at the same time not getting so stringent it fails to diagnose those who would benefit from the understanding and proper treatment that can come from accurate diagnosis.

It is my feeling that the proposed CSSD diagnosis will do much more damage than good. It is highly subjective, using language that in all likelihood will lead to patients with chronic illnesses, who are not genuinely mentally ill, getting labeled as having CSSD. It is also far too broad, and as such will be highly likely to lead to misdiagnoses.

Starting with the first criteria, I feel that considering anyone with only one somatic symptom, no matter how severe, to have a mental disorder is dangerously inclusive. Having more than one symptom does not automatically mean that the patient is imagining the illness or is mentally ill either, though, even if the medical profession has yet to find the reason for those symptoms. It has been shown to be the case that most people with chronic illnesses wind up with a multitude of symptoms and not all are necessarily within the medical professions’ ability to explain. Rather than pointing to these symptoms being in the patients’ heads, though, this often simply means that the doctors do not yet have the knowledge to understand what is happening.

I have the utmost respect for doctors, but they are still human, and there is still a lot about the body and mind that is simply not known. If we always assumed that this meant that the patients must be imagining their symptoms, or malingering, or anything else along those lines, we would never have advanced medically to the point where we are now, and if we continue to try to put medically unexplained symptoms in the realm of somatic disorders, then we may fail to continue to progress, and that is certainly not what medicine is supposed to be about. It definitely does not serve the patients well at all.

Going on to the second set of criteria, a “high level of health related anxiety” is not only entirely subjective, but is also to be expected from anyone who has an illness that seriously disrupts his or her life. I would be more concerned as a counselor, with a client who fails to acknowledge and show anxiety about the impact of a life-changing, long term illness than I would be with one who admits to a significant degree of anxiety about it. Failing to have anxiety about such an issue would tell me that the client is in denial and/or has not yet realized just how much his or her life is going to be effected, and therefore that such a client is not ready and/or able to effectively cope with such an illness. On the contrary, anxiety about such an illness tells me that the client is facing what is happening and is aware of the reality of it, and may be ready to work on coping strategies.

The second part of this, “normal bodily symptoms viewed as threatening and harmful” would certainly appear to be reasonable criteria for including in a diagnosis; however, even this is not as straight forwards as it seems. I say this because many of the symptoms that can come with chronic illnesses may well be normal symptoms, but given the multitude of symptoms that usually do occur with such illnesses, the often changing nature of them, and the lack of medical understanding about many of them; the complexity of separating normal from abnormal becomes less clear. Additionally, when the doctors are frequently telling these patients that their symptoms are medically unexplainable, that does not give the patient reassurance that their symptoms are, in fact, normal, at all.

The “tendency to assume the worst about their health” is again a subjective criterion. If the client is dealing with a life altering, life shattering, or even terminal illness, then he or she is living with “the worst” and that is reality; not catastrophizing. Certainly there are levels of acceptance that are healthy versus levels that could be classified as unhealthy preoccupation and catastrophizing; however, this criterion does not make a clear distinction.

“Belief in the medical seriousness of their symptoms despite evidence to the contrary” would seem to be more clear cut; however, this is not even always entirely clear when dealing with medically unexplained illnesses. If a patient is experiencing symptoms that are truly medically understood and have been completely shown to not be serious, then this criterion is absolutely clear and accurate. If the only reason that one is saying that the symptoms are not deemed serious, though, is that the medical profession has yet to explain them, then this criteria also has the possibility of being applied inaccurately.

As to the final criteria in this section, “health concerns assume a central role in their lives”, I find this one the most appalling of all. When one has a serious, chronic illness; terminal or not, it is impossible for that illness to fail to assume a central role in the ill person’s life. If one is bed bound, wheelchair bound, dying, or even just extremely limited and barely unable to take care of oneself, by definition that illness is in control of much of the person’s life, and therefore cannot fail to take a central role. Does this mean that the person cannot learn to adjust and to have a fulfilling, albeit changed life? Of course, not! However, to try to relegate the illness to a back seat role and to fail to make accommodations in one’s life is not only not possible, but it is not healthy.

Finally, the diagnostic time line of being ill for at least six months is a rather arbitrary designation. Nearly all chronic illnesses do last this long and most last much longer. This does not make them mental illnesses, but rather chronic illnesses that can be entirely physical in nature.

I feel that the current diagnostic criteria related to somatic illnesses (in the DSM IV TR) are much more clear and accurate than the proposed version. I especially believe that unless this proposal is changed to exclude many chronic illnesses, terminal illnesses, and illnesses where the main reason for inclusion is simply that the medical profession is unable to fully explain them, this has the potential for more harm than good. Illnesses like Chronic Fatigue Syndrome, Fibromyalgia, Multiple Chemical Sensitivities, and Gulf War Syndrome are especially vulnerable for being misdiagnosed as CSSD under these criteria, even though there is increasing evidence of the physiological etiology for each. Even illnesses like cancer, AIDS, MS, and Lupus could easily wind up falling under this umbrella, if the criteria are left as is.

Not only will this not serve the patients’ best interest in getting the help that they need, but it actually has the potential to cause a lot of harm by in essence telling the patients and their doctors, friends, family, etc that they are mentally ill, and discounting the real physical causes for their poor health. It will add a stigma and condemnation (unfair though it may be) to the already considerable burden of their illness and could further alienate an already isolated population. It can also make it even more difficult for those who need disability and financial support to get it, because it implies that the illness is not a real physical illness.

Finally, as things stand, patients with physical illnesses are not in any danger of failing to get help for co-morbid mental health issues. If someone with a chronic illness is experiencing an excessive amount of anxiety or is depressed or otherwise struggling to cope with that illness, or if someone with a physical illness has an unrelated mental illness, he or she is able, under current diagnostics guidelines, to get the help needed, in addition to getting help for that physical illness. Changing to the proposed criteria does not impact that in any way for the better, but it does have the potential to cause a great deal of harm. It could very well even limit the amount of help that is available for the physical issues if these patients are shifted to solely mental health diagnoses when they do have physical illnesses.

Tammie Page, M.A. CFS/ME patient

Published with permission of Patient advocate, New York

I have reviewed the draft for the proposed category of Complex Somatic Symptom Disorder (CSSD), and find major flaws in the criteria that would easily lead to the misdiagnosis of any number of physical diseases or conditions with no psychosomatic component, but which lack clear biomarkers, sufficiently diagnostic tests, or are comprised of medically unexplained symptoms. As such misdiagnoses can lead to extreme iatrogenic harm, I strongly recommend that this category be abandoned altogether.

I am particularly concerned by the inappropriate diagnosis of CSSD being applied to patients who actually have myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS) as it is often also called – a disease for which a solely physical pathology has been firmly established. Too many ME/CFS patients would easily fall into the sinkhole of the excessively indeterminate and highly subjective diagnostic criteria for CSSD.

As stated in the draft, CSSD diagnosis requires that criteria labeled A, B and C be met; the first and last are obviously met by ME/CFS as well as any other chronic physical disease. The second is outlined as follows:

B. Misattributions, excessive concern or preoccupation with symptoms and illness: At least two of the following are required to meet this criterion:

(1) High level of health-related anxiety.

(2) Normal bodily symptoms are viewed as threatening and harmful

(3) A tendency to assume the worst about their health (catastrophizing).

(4) Belief in the medical seriousness of their symptoms despite evidence to the contrary.

(5) Health concerns assume a central role in their lives

The determination of these misattributions is far too subjective for this to be the only criterion standing between a patient with a poorly defined physical disease and a misdiagnosis of mental illness. Whereas such a criterion should be highly discriminative between physical and psychological elements, criterion B focuses upon psychological observations of highly questionable empiric strength and clinical value. As it is incapable of distinguishing many physical symptoms and distress from psychological ones, it would heavily overdiagnose psychopathology. The preconceptions and limitations of the practitioner become far too important here, as do highly subjective judgements; to let these elements potentially intrude into the realm of physical disease diagnosis is a grave error. Consider each of the misattributions in turn:

(1) ‘Anxiousness’ or anxiety is a ubiquitous and extremely frequently diagnosed symptom. The health concerns of the majority of ME/CFS patients are similar to those of HIV positive patients; however, absent the same diagnostic clarity and the same degree of biomedical knowledge about the disease process, the concerns of ME/CFS patients are all too easily dismissed as excessive, i.e. anxiety, by clinicians who know little or nothing about ME/CFS. It should also be noted that the experience of having any medically inexplicable and likely untreatable disease itself can engender a high level of anxiety, yet that fact is not taken into consideration in this criterion. Thus in both ME/CFS and other conditions that are less understood, it is exceedingly easy for a clinician to inappropriately identify misattribution #1.

(2) It is not clear at all what constitutes a ‘normal bodily symptom’. How is that to be defined and standardized? For example, members of the DSM-5 working group have stated that ‘orthostatic dizziness’ is a normal bodily sensation, which is a dubious statement indeed; it is not normal to experience this symptom chronically or severely. Various forms of orthostatic intolerance are very common in ME/CFS, causing persistent or recurring dizziness. The ease with which misattribution #2 can be incorrectly identified is readily apparent.

(3) A practitioner who is simply unaware of some key hallmarks of ME/CFS will all too easily wrongly identify misattribution #3 in ME/CFS patients. As just one example, if the practitioner is unaware of the phenomenon of post-exertional malaise, s/he will easily mistake a CFS patient’s concerns about relapse, etc from overexertion for ‘catastrophizing’.

(4) Misattribution #4 could be wrongly identified by any practitioner lacking in knowledge or understanding of ME/CFS research. Given the extremely poor state of medical education about ME/CFS, the likelihood of inappropriate labeling with #4 is great and cannot be overstated. There are multiple flaws with this subcriterion; I have only pointed out one of the most troubling ones.

(5) Any disabling or distressing physical symptoms of sufficient intensity can dominate a patient’s life; thus misattribution’ #5 is so lacking in clinical rigor and definition that it could be applied incorrectly to those with almost any disease with no psychopathology.

Thus, false identification of criterion B in ME/CFS (and other diseases) can occur too easily and in too many ways for it to have any real diagnostic value. As criteria A and C are also met by default in ME/CFS, that means the CSSD criteria as a whole will in clinical practice almost certainly result in the misdiagnoses and the erroneous labeling of many ME/CFS patients with CSSD.

In this context, it should be remembered that the repercussions of having an erroneous psychosomatic label of any kind on a patient’s medical record, especially if s/he has a ‘controversial’ disease like ME/CFS, can have a terrible impact on the patient’s physical, emotional, and economic well-being; treatment by medical professionals, insurance claims and government benefits for physical disability can all be denied, and one can easily imagine the subsequent consequences.

I therefore cannot overstate to the Task Force the importance of removing the category of CSSD.

Published with permission of John Mizelle, Therapist, California, US

As a psychotherapist with 25 years of experience and a sub-specialty of working with people with physical illness, I have encountered countless somatic complaints with psychological roots. I have also encountered numerous cases of physical conditions which were undiagnosed, incorrectly diagnosed, and/or for which no clear understanding had yet emerged. I am concerned that the proposal to create a classification, CSSD, has the potential to narrow rather than broaden our view of a patient’s presentation of symptoms, and stigmatize people who are suffering from conditions for which there is as yet little medical understanding. Fibromyalgia and Chronic Fatigue Syndrome are two prime examples.

More than twenty years ago, I treated a young woman who presented with numerous complaints of pain. Unable to obtain a medical diagnosis, I proceeded on the assumption that she had a somatoform disorder. The treatment did not help her. In fact, I believe that it drove her into a deeper depression. Years later, when fibromyalgia was finally recognized, she was able to obtain relief from treatment that recognized that she was dealing with a real condition, not an imagined one.

Lastly, should you make the mistake of proceeding with this classification, the elements of Criterion B are, individually and collectively, overly broad, vague, and insufficient. A person who presents with 6 months of chronic (C) pain (A), and who experiences anxiety (B, 1) and for whom that pain has assumed a central role in their lives (B, 5) is not expressing a mental disorder. S/he is dealing with a mysterious and poorly understood process. It may relieve the anxiety of the profession to be able to classify such a person’s presentation, but it does nothing to relieve her/his suffering, which is our primary goal.

Published with permission of Peter Kemp, UK

Dear Members of the APA DSM-V Review Panel,

Re: Concerns regarding any move to categorize Chronic Fatigue Syndrome (CFS) as a Functional Somatic Syndrome.

This matter presents numerous issues of scientific accuracy, vested interests, professional credibility and public trust which I imagine others will raise with the panel, so I will address issue of Gender Prejudice which I believe is relevant.

I note with interest that the DSM website states (1):

“…the Gender and Cross-Cultural Study Group has tried to determine whether the diagnostic categories of mental illness in DSM need changes in order to be sensitive to the various ways in which gender, races and culture affect the expression of symptoms.”

I find it troubling that the APA appear to consider it appropriate to lump together Gender and Cross-Cultural issues. There may be some cultural issues that include aspects of gender, but purely gender issues are nothing to do with cross-cultural issues and laws protecting equality in these matters are separate, as they should be. It would be ridiculous if people living in a civilized democracy considered any gender prejudice they encountered to be automatically associated with culture rather than originating from outdated discriminatory attitudes. By appointing a Study Group that apparently combines these completely different issues the APA seem to be guilty of such an attitude.

The US Dept of Health and Human Services states: “Women are four times as likely as men to develop CFS” (2). This raises the question of discrimination which I believe the panel should respond to.

E.g.; Dr Peter Hudgson was a Consultant Neurologist at the Newcastle General Hospital and stated on camera (3):

“I don’t know what M.E. is, but what I’m absolutely certain is, it is not an organic illness. I don’t want to make too much of the sexist issue, but, er, something like four-fifths if not more of the people I deal with are women in early middle age who have unsatisfactory marriages; who have children that are making life difficult for them…”

Disregarding the contradictions in these remarks they appear to reflect a prejudice that I believe underlies the attitude of some who seek to psychologise CFS.

Of the many people with CFS that I know personally only a small percentage fit the stereotype that Dr Hudgson had to ‘deal with’. Yet so entrenched is this stereotype of the ‘nervous housewife’ that I find this prejudice is widespread.

Johnson (4) remarks on an interview with the CDC’s Larry Schonberger:

“It was apparent Schonberger believed that the entity his division would go on to name “cfs” was less a disease than a manifestation of depression in women… Doctors who saw patients, even Harvard docs like Anthony Komaroff, were anathema to Schonberger and his staff; such doctors were rendered unreliable by their bias in favor of the disease existing. Agency staff considered clinical expertise equivalent to clinical ignorance: after all, if you thought depressed, hysterical women had an organic disorder that required medical attention, how credible could you be?”

Prejudice against women in the medical professions is nothing new and is, I suspect, so normalized as to make rational thinking about women’s health issues nigh impossible for male-dominated institutions. I do not mean this as a criticism even though this is clearly an unsatisfactory situation; I am simply referring to what is practically feasible.

I do not think it necessary that the review panel comprise 80% women to match the percentage of women diagnosed with CFS; but I do consider it essential that at least 50% of any panel considering this item for the DSM should be women. It would be sexist to convene a panel that did not adequately represent the views of women. Classifying CFS as a somatization disorder would lead to people with CFS being re-diagnosed as neurotically somatizing rather than suffering from a debilitating illness with an as yet, incompletely elucidated etiology. Whether the APA like it or not, this would be viewed as, and may in fact be – sexual stereotyping.

The fact that men are also diagnosed with CFS does not obviate the gender issue, it may rather contribute to it by obscuring the psychological issues of those who seek to subjugate women. It is possibly noteworthy that in the Middle Ages, depending on region, between 5% and 25% of people tried for witchcraft were men. This does not alter that fact that the persecution of witches was a gender crime.

If those whose vested interests lie in categorizing CFS as a mental illness succeed in swaying the APA, I believe this would be viewed as sexist judgment against women. If such a judgment were passed by a male dominated panel this would be completely unacceptable.

Peter Kemp MA (Counselling and Psychotherapy Research)

REFERENCES

1. http://www.dsm5.org/Newsroom/Documents/Race-Gender-Ethnicity%20Release%20FINAL%202.05.pdf  Accessed April 2, 2010

2. http://www.womenshealth.gov/faq/chronic-fatigue-syndrome.cfm Accessed April 2, 2010

3. http://www.youtube.com/user/hoofbags#p/u/18/cDeu_OlMivU  Accessed April 2, 2010

4. http://www.oslersweb.com/blog.htm?post=660837  Accessed April 2, 2010

Published with permission of Ian McLachlan, UK:

Submission to Work Group for Somatic Symptom Disorders.

I am a UK citizen and I have suffered with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since 1988. I am very concerned at how the proposed new category of Complex Somatic Symptom Disorder (CSSD) for inclusion in DSM-5 will be implemented by physicians, and the possible adverse impact its use may have on sufferers of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

When I first fell ill with ME/CFS, despite the aetiology not being understood, it was nevertheless taken very seriously as a distinct neurological condition. However, over the years, whilst I have remained very ill, I have witnessed the downgrading of its status, and its effects on health trivialised and ridiculed.

I was diagnosed upon my first visit to my General Practitioner (GP). I explained to him that I had been previously fit and well, but recently started to regularly fall ill with tonsillitis, culminating in feeling the centre area of my brain crash down behind the back of my eyes, rendering me unable to function normally. He listened to me and within a matter of minutes recognised and understood what was being said to him; he diagnosed Post Viral Fatigue Syndrome (PVFS); blood tests later showed that I’d recently had Epstein Barr Virus. After two years the diagnosis changed to Myalgic Encephalomyelitis followed by another change to that of Chronic Fatigue Syndrome in the mid 1990s.

So, three labels for the same condition, and all given by the same GP. Although all three are listed under the same rubric in ICD-10, all have nevertheless been interpreted and used differently by my GP. The first was applied because it was hoped that within two years or so I would recover. His reasoning was that it was appropriate to use it in the short term as he did not want me to lose hope, or choose to walk out of his surgery straight under a bus, especially if there was the slightest possibility that within time I may fully recover.

The second label “Myalgic Encephalomyelitis” was given because two years had passed with no discernible improvement, so he took the view that EBV had left me in a permanent state of disability. The last label “Chronic Fatigue Syndrome” is now the only one used by him because it has become the more accepted regularly used term within the medical profession; mainly due to its emphasis on fatigue and the lack of clarity and confusion that has arisen regarding what ME/CFS actually is, and to its cause.

It is understandable to lay people such as I, as to why it is necessary to try to categorise an illness, and the need to attach a lists of symptoms, but as I have witnessed no matter how much discussion has taken place, and despite all efforts to be as precise as possible, different interpretations by experts are occurring on a regular basis. For example, the British government recently made reference to the fact that they believe five different ICD categories can be applied to ME/CFS, but any sufferer wishing to claim a higher rate of mobility allowance (which is part of a state benefit to help disabled people requiring care and mobility known as The Disability Living Allowance) have to be classified by a claims assessor as having a physical illness only because of the way in which British law is written.

Although my GP interpreted ICD codes differently he still nevertheless remained within the appropriate neurological code. Given that ICD and DSM codes interact with one another and further efforts are also underway to harmonise both, I feel it is vital that you are extremely cautious as to how you proceed with the proposed category of CSSD and consider the possible future ramifications its effect may have on ME/CFS sufferers.

You are no doubt aware of the recent findings regarding XMRV and its possible link with ME/CFS, and whilst it is early days, it would be a disaster if scientific progress became stifled because ME/CFS is continually attributed wrongly to inappropriate codes, contrary to good scientific evidence and the best interest of patients. There is an urgent need for accuracy in order to not undermine ICD-10 G 93.3. Classification of ME/CFS.

Yours Sincerely

Ian McLachlan, West Midlands, UK

Published with permission of Andrew, patient, US

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 somatic 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 illness.

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 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-5.

Published with permission of US advocate, Mary M. Schweitzer, PhD.

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, PhD.

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