DSM5 - Ticket back to Reevesville

[Dx Revision Watch]

'Somatic symptoms' - does this now mean 'psycho-somatic'?

I thought somatic symptoms could include physical ones? (If you sprained your ankle - that would be a somatic condition). So do people with (for example) AIDS suffer from a chronic somatic condition?

If anyone knows, please answer! Ta.

"Somatic" means "Of, relating to, or affecting the body" not to be confused with "somatization".

 

[Dx Revision Watch]

This is my draft - if anyone spots a reason it's rubbish, please let me know. Anyone know how best to address/ sign off on these things?:

I'm signing mine in my own name, in the capacity of "UK patient advocate" with the Work Group name and the Categories I am responding to at the top.

Not giving a street address - just an email address.

If you wanted to include the name of the Chair of the SSD Work Group, it's Joel Dimsdale, MD.

 

[Esther12]

"Somatic" means "Of, relating to, or affecting the body" not to be confused with "somatization".

That's what I thought.

I used it a couple of times in my letter (eg: "If this diagnosis is not to be based upon the absence of an identifiable and clearly understood physical condition, but be consistently applied, then it should be recognised that most patients with chronic somatic symptoms are likely to fulfil the current criteria.") and I think I'm using it correctly. If anyone disagree - please let me know soon-ish.

I'm signing mine in my own name, in the capacity of "UK patient advocate" with the Work Group name and the Categories I am responding to at the top.

Not giving a street address - just an email address.

If you wanted to include the name of the Chair of the SSD Work Group, it's Joel Dimsdale, MD.

Excellent. Thanks for the help.

 

[Dx Revision Watch]

A couple of tiny points, Esther - the APA intends to officially adopt the use of "DSM-5" rather than use Roman numerals, so they won't be using "DSM-V" - also you have inconsistant spelling of "catastrophize" - both "z" and "s".

 

[Dx Revision Watch]

I used it a couple of times in my letter (eg: "If this diagnosis is not to be based upon the absence of an identifiable and clearly understood physical condition, but be consistently applied, then it should be recognised that most patients with chronic somatic symptoms are likely to fulfil the current criteria.") and I think I'm using it correctly. If anyone disagree - please let me know soon-ish.

That's looks the correct usage.

 

[Esther12]

A couple of tiny points, Esther - the APA intends to officially adopt the use of "DSM-5" rather than use Roman numerals, so they won't be using "DSM-V" - also you have inconsistant spelling of "catastrophize" - both "z" and "s".

Thanks. I was quoting Americans - but refusing to adopt their ZZZs. It does look ugly when they're right next to each other though, so I think you're right and I'll change it. The DSM-5 for sure.

 

[Esther12]

That's looks the correct usage.

Excellent. I tried to adopt their use of language, and found it a bit uncomfortable. Thanks for the reassurance.

 

[Dx Revision Watch]

....and you think it's all over for another year (when the next review of DSM proposals is scheduled)....well, the alpha draft of ICD-11 is due for release on 10 to 17 May (

 

[Dr. Yes]

Better Late than Never... Here's what I just managed to throw together when I realized it was April 20... building off that earlier post...

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.

Thanks Suzy, for all the ridiculously hard work you keep doing! :Retro smile:

 

[Gerwyn]

HI DB as promised

I wish to express my alarm at the proposed changes to be incorporated into DSM5 relating to the categorisation of somatoform disorders.

Patients whose physical symptoms have an unknown aetiology are once again going to be re categorised as having a psychiatric disorder.

Past victims of this logical fallacy, which appears so predominant in psychiatry, are sufferers of polio, epilepsy and Parkinson’s disease. These are just a few examples of patient groups with symptoms whose causes were unknown at the time enduring stigma and ridicule as a direct result of misdiagnosis at the hands of Psychiatrists.

There is no scientific evidence that Somatoform disorders exist in any mind independent sense. The DSM 5 proposals however treat this entirely subjective label as having objective validity. Such validity lies solely within the paradigm of Psychiatry and within the minds of its practitioners.

.Medicine in general is very much a consensus discipline. Reaching a consensus based solely on clinical experience is however fraught with danger and has a history of causing great hardship and suffering. Psychiatrists like practitioners in any other discipline base their conclusions via interpretations of observed experience.These interpretations in turn are a product of their world view and the content of their cognitive schemas. In this way so called objective conclusions are not objective at all but subjective constructs. Mental representations are self biasing so clinical experiences and resulting conclusions are the product of cognitive biases and not mind independent fact.

The access of mind independent information requires the use of the scientific method. This kind of evidence based practice is becoming the norm in medicine. It seems however that this concept has a long way to travel until it reaches the hallowed halls of psychiatry.

Under the new proposals patients with entirely medical diagnoses are in danger of being stigmatised and mistreated. Sufferers of Rheumatoid athritis,MS,frontal lobe seizures(which are EEG silent),exfoliate dermatitis,IBS,Myalgic Encephalopathy(M.E.),Essential hypertension,Chron;s disease, Fibromyalgia and porphyria and a whole host of other illnesses of unknown aetiology are all potentially in danger

The danger elates to inappropriate social stigmatisation and its adverse effects of interpersonal relationships and patient self image. The other dangers involve mistreatment by health professionals of all hues and last by no means least the loss of benefits and or reduction of insurance cover for patients unable to work or even care for themselves.

One has to ask why this is being done. It can be of no benefit. There are no pharmaceutical or therapeutic interventions which have any benefit whatsoever on the symptoms of somatoform origin. So why stigmatise patients by attaching a label when it does them no good whatsoever. There is even no scientific evidence that this label has any objective validity whatsoever.

In this penultimate section I intend to highlight the problems patients are likely to face in an interview with a psychiatrist assuming that this travesty is implemented.
There are a number of boxes that a patient must fit into to receive this “diagnosis”

The first is Misattribution or excessive concern with symptoms and illness

How can a patient make a misattribution when the causes of their symptoms are unknown? The Psychiatrist involved is obviously deciding that the cause is psychiatric with no evidence whatsoever. If the same psychiatrist was in severe unrelenting pain would he or she not be concerned with their symptoms and illness. How can such a concern be objectively judged to be excessive.

The second is normal bodily symptoms are viewed as threatening
Who with normal bodily symptoms would consult a doctor? Who is to judge if the patient is displaying normal bodily symptoms? If a psychiatrist’s skin was peeling of for no diagnosable reason would they not view the symptoms as threatening and harmful? All these terms are poorly defined and wholly subjective and thus patients will be left at the mercy of a psychiatrist’s whim

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

If a patient in pain or totally incapacitated they are reasonably entitled to the belief that their symptoms are medically serious because the cause of their symptoms is unknown. There is therefore no evidence which is contrary to this belief. In this case a perfectly normal and rational belief contributes to a diagnosis of SSCD.American readers would describe this as catch 22.

Health concerns assume a central role in their lives

This is normal for anyone with a chronic debilitating illness. Yet again a perfectly normal and reasonable concern is being pathologized

I find it astonishing that a group of psychiatrists, who purport to treat mental illness, can hold such erroneous beliefs that they are more qualified to classify illnesses than the world health organisation. In relabeling diagnosed medical illnesses as psychiatric contrary to the World Health Organisation codes they appear to be displaying a level of arrogance which is truly breathtaking

 

[Dreambirdie]

Better Late than Never... Here's what I just managed to throw together when I realized it was April 20...

That's quite SOMETHING to just throw together! WOW! I wish my brain worked half as good as yours.

 

[Dx Revision Watch]

Well done, everyone, Kati, Dreambirdie, Gerwyn, Esther, Dr Yes, Creekfeet, alphahusky, French Tulip and anyone I've missed.

If you'd like your response collated with the others on my Dx Revision Watch site - PM me with a copy, if it's not here, or with the Post # if it is, for ease of locating and I'll add them to my site over the next few days - remember to state how you'd like your name/nickname displayed and remove any email/contact details.

Suzy

 

[creekfeet]

Twittered

Final hours to comment DSM-5 against psych diagnosis of #CFS. Read http://www.iacfsme.org/ & follow link to comment. Please RT

 

[Esther12]

I just submitted mine, and doing so turned it into a block of text with all paragraphing removed. I'm glad I don't have to read through hundreds of them.

 

[starryeyes]

Thank you Dreambirdie, Kati and Suzy for keeping us alerted to this and explaining how we can complain. Thanks everyone else who submitted letters. I just got mine in. I cobbled it together from various posts here plus added some of my own words. Thanks All. :sofa:

I sent:

ME/CFS is a long-term and disabling physical illness and needs to be recognized as such. ME/CFS has been classified by the World Health Organization in ICD 10 G93.3 as a Neurological Disorder since 1969. There is a large and growing body of evidence from scientific research and from clinicians which supports this position.

I oppose any attempt to misclassify ME/CFS as a psychiatric disorder either explicitly or implicitly.

MS (Multiple Sclerosis) was known as "Hysterical Women's Disorder" a hundred years ago. Let's not go back to the Dark Ages by reclassifying a known NeuroImmune Disease like ME/CFS as a psychological disorder.

 

[Esther12]

Probably one final bump to catch anyone else's eye.

Thanks for the help people, and good work with all your letters too, there were a lot of thoughtful comments I wish I'd included in mine.

 

[Dx Revision Watch]

ME Association endorsed submission to DSM-5

I had been told by Neil Riley (Chair MEA) in early March, that their psychology adviser had submitted "at the end of January"; this was later corrected to "11 February" not "22 February".

I was advised that the MEA were endorsing that response but did not consider there was justification for submitting a response of their own.

I was also told that it was recommended in the response that CFS should be an exclusion - but little else about the content.

Whether this is the same submission as the apparent 11 February submission or a further submission, isn't clear. One thing is clear - that the MEA were not prepared to be transparent over their position on submitting a response in the DSM-5 public review.

They should have been prepared to publish any material which they were endorsing - and they could have published this weeks ago.


From Neil Riley, Chair, MEA to Suzy Chapman, 5 March

"a) A response was submitted some time ago

"b) We had not thought of publishing it and wanted to see what the final proposals for the revision of the DSM categories will be but I can confirm that the main arguement that was put forward was that CFS should be an exclusion."

There was further comment around this issue in several subsequent exchanges with Mr Riley - who was reluctant to confirm whether and when the MEA would publish a copy of the response which they were endorsing. This copy, below, has been posted on the MEA's Facebook Discussion page, by Tony Britton, having been badgered for the last few days by a third party. Whether the MEA intends to publish this response on its main website or via Co-Cure, isn't known.

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

ME Association endorsed submission to DSM-5 (apparent date 22 February):

http://www.facebook.com/group.php?gid=68630803256&v=info#!/topic.php?uid=68630803256&topic=14504

We sent this brief note to the consultation on February 22. It was written
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.

 

[valia]

ME Association endorsed submission to DSM-5 (apparent date 22 February):

http://www.facebook.com/group.php?gid=68630803256&v=info#!/topic.php?uid=68630803256&topic=14504

We sent this brief note to the consultation on February 22. It was written
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).

WOW! Powerful stuff eh!

 

[Dx Revision Watch]

Submissions to DSM-5: 1: CSSD category 2: Overall Comments

Thank you for your submission.

We appreciate your comments and recommendations for the proposed DSM-5. The APA will be unable to answer each contributor on an individual basis. However, all comments will be reviewed, aggregated by topic and shared with the appropriate DSM Work Group(s). Responses will be reflected in future DSM-5 revisions and justifications for such revisions.

The comments you have submitted are as follows:

Complex Somatic Symptom Disorder


For the attention of: Chair Joel Dimsdale, MD

Somatic Symptom Disorder Work Group

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

From: Suzy Chapman, UK resident

Capacity: Patient advocate

Contact: (email address)

________________________________

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) 473476, 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: Whats 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 adjustmentdisproportionate distress and disabilitydysfunctional and maladaptive responseunhelpful illness beliefsactivity avoidancepsychological distress in the wake of a general medical conditionpersonality traitspoor coping strategies contributing to worsening of a medical conditionsick role behavioursecondary 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 Battributions, 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 patients 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/Task Force/Escobar Disclosure 1-11-10.pdf

[2] Marin H, Escobar JI: Unexplained Physical Symptoms Whats a Psychiatrist to Do? Psychiatric Times. Aug 2008, Vol. 25 No. 9: http://www.psychiatrictimes.com/display/article/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 submission.doc

[Ends]

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

In response to: Overall Comments

From: Suzy Chapman, UK resident

Capacity: Patient advocate

Contact: (email address)

________________________________

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) 473476 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?

[Ends]

 

[Dx Revision Watch]

What happens next?

I would like to thank everyone for their tremendous efforts in getting responses in to the DSM-5 review. Don't forget, if you would like your response collated on my site let me know PM and I'll add it over the coming week.

What happens next? Here's the timeline:

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

Timeline

[...]

January May 2010: Site Recruitment for Field Trial Testing. Recruitment of sites for conducting the DSM-5 field trials, which will test the use of the proposed revisions in clinical and research settings, has begun. Proposed revisions will be examined in a variety of populations and in diverse settings.

February May 2010: Pilot Testing for DSM-5 Field Trials. Results from pilot tests will be used to modify the design and implementation of the field trials.

May 2010 March 2011: DSM-5 Field Trials, Phase 1. The first phase of DSM-5 field trials will begin in May 2010 and is scheduled to run for 10 months.

As the Phase 1 field trials are underway, members of the DSM-5 Task Force and Work Group will begin drafting their initial text for DSM-5. During this time, case studies will also be developed, which will be published after DSM-5s release in a series of case books.

March April 2011: Revisions to Proposed Criteria. Based on results from the first phase of field trials, the DSM-5 Task Force and Work Group members will make revisions to the proposed DSM-5 diagnostic criteria and dimensional measures. These revised criteria and measures will be tested in a second phase of field trials.

April May 2011: Review of Revised Criteria. Revised proposed criteria will be subjected to internal review, including a review by the DSM-5 Task Force and Research Group and by other relevant work groups.

May-July 2011: Online Posting of Revised Criteria. Following the internal review, revised draft diagnostic criteria will be posted online for approximately one month to allow the public to provide feedback. This site will be closed for feedback by midnight on June 30, 2011.

August 2011 February 2012: DSM-5 Field Trials, Phase II. The second phase of field trials testing will focus on those diagnostic criteria and dimensional measures that required modification based on the results of the Phase I field trials. This time period will include data collection and analysis.

February August 2012: Prepare Final Draft Text. The DSM-5 Task Force and Work Groups will prepare the final draft text and criteria for review.

March 2012: Presentation of DSM-5 Structure to APAs Board of Trustees. The overall structure and organization of DSM-5, including diagnostic categories, category names, Axes, and location of major disorders, will be presented to the APAs Board of Trustees in March 2012, leaving 9 months for any changes, edits, and subsequent reviews. Any revisions must be re-approved by September 2012 in time for the National Center for Vital and Health Statistics annual ICD-10-CM revision conference.

August 2012: Final Review. The APA will release the revised draft criteria to the APA Assembly and Board of Trustees for final review.

September 2012: The National Center for Vital and Health Statistics Annual ICD-10-CM Revision Conference. The final, approved overall structure of DSM-5 will be complete in time for this conference so that organization of ICD-10-CM can be aligned with DSM-5.

September November 2012: Final Revisions to Draft Criteria. Work group members will make their last round of revisions to draft criteria based on feedback from APAs Assembly and Board of Trustees.

November 2012: APA Assembly Approval of DSM-5.

December 2012: APA Board of Trustees Approval of DSM-5. Following approval from the Board of Trustees, the final completed manuscript will be submitted to the APAs publishing division, American Psychiatric Publishing, Inc.

May 2013: Publication of DSM-5. The release of DSM-5 will take place during the APAs 2013 Annual Meeting in San Francisco, CA.

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

ICD-10-CM

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

Wikipedia: http://en.wikipedia.org/wiki/History_of_chronic_fatigue_syndrome#ICD-10-CM

ICD-10-CM

The proposed U.S. classification ICD-10-CM (2009 Update) separates CFS and Postviral fatigue syndrome into mutually exclusive categories. Chronic fatigue, unspecified | Chronic fatigue syndrome not otherwise specified appears under R53.82. Postviral fatigue syndrome | benign myalgic encephalomyelitis appears under G93.3 [52] The Chronic Fatigue Syndrome Advisory Committee (CFSAC) had previously recommended CFS to be placed under the same neurological code as ME and PVS, G93.3. [53]

(See also CDC document: A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases, March 2001 proposals, now superceded as per Wikipedia.)

For most recent ICD-10-CM proposals see:

CDC site: International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM)*
The 2010 update of ICD-10-CM is now available and replaces the July 2009 version. [1]

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

Canada should refer to its own clinical modification.

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

Revision of ICD-11

The alpha draft of ICD-11 is scheduled for launch between 10 and 17 May.

I will most likely start a new thread for ICD-11 in the next couple of weeks.

Suzy