DSM-5 SSD submissions 2011

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Patient and advocate submissions

Submission by patient Samuel Wales

To the DSM-5 Task Force and particularly to the members of the “Somatic Symptom Disorder Work Group”.

1. According to media reports, Senator Grassley’s investigations of certain members of your profession have raised questions about conflict of interest. Rightly or wrongly, many currently consider the profession to be in disrepute.

A new category is being proposed. If it is made official, there is a high probability that unwanted questions will rightly or wrongly be raised about conflict of interest.

There is an increased risk, rightly or wrongly, of investigations, lawsuits, or unwanted media attention concerning the Task Force, the Work Group, and their individual members.

2. My concern in this matter pertains to the high potential of the measures under consideration to increase suffering and death from misdiagnosed physical diseases. Others have written on this topic expressing a similar concern. I agree with the points I have seen and urge you to treat these matters with maximum seriousness. Human lives are at stake.

Samuel Wales

Submission by US patient, Andrew

To whom is may concern:

According to the dsm5.org website, they are unable to accept comments via the normal interface, and that dsm5@psych.org is the appropriate email address to send my comment. Please direct my comment to the appropriate DSM work group(s) for their review.

My comments are addressed to your latest revision of Complex Somatic Symptom Disorder (CCSD). I commented on your previous version, and I think your current version might be worse than the previous one. Consider the following scenario: A man visits his doctor because he has cold-like symptoms, extreme difficulty concentrating, sore throat, fatigue, and dizziness. The doctor gives him the standard tests and finds nothing remarkable. He tells the patient there’s nothing wrong, and that he’s perfectly okay. On the other hand, the man has been feeling so sick there are days he is unable to work, and when he is at work he is unable to concentrate enough to perform well. He fears that he will end up being unemployed. Also, the man has tried resting, tried eating better, tried sleeping more, tried exercising, but after more than six months he is no better.

I can see no reason why this man would not be very upset about this situation, despite the doctor’s assurance that there is nothing wrong. I can also fully understand why a patient in this situation might doubt the doctor’s assessment about lack of an illness.

In effect, you have created a mental disorder for patients who think a doctor is not doing his job, who is not taking the case seriously enough, and who is underestimating the personal impact of the illness. This should be a red flag against CSSD in itself. If this disorder were in place a few decades ago, it could have been applied to those patients who were reading research about peptic ulcers and trying to convince their doctors to try antibiotics instead of listening to relaxation tapes. It could have been applied to all the early AIDS patients who saw their illness as infectious, despite reassurances that they were just partying too much.

Think about this for a minute. Suppose lawmakers suggested that anyone who challenges a decision by their attorney can be found in violation of the law. Your Complex Somatic Symptom Disorder is not all that different. You are suggesting that anyone who does not calmly accept the word of a doctor can be diagnosed with a mental disorder.

I don’t know if you have known anyone who spent years being told they were suffering from a mental disorder, only to find out later they had multiple sclerosis. I used to know two such people. Both were dismissed by doctor after doctor, and both were told year after year they are over-reacting to something that isn’t even there. Had they accepted what doctors told them, they would not have persisted in seeking a better diagnosis. Imagine how much worse it must be for people who have controversial illnesses such as Chronic Fatigue Syndrome, Fibromyalgia, etc.

The older category of somatoform disorder was controversial enough, but at least it has a list of requirements that attempt to prevent misuse of the diagnosis. Your current revision does not. And this is a good reason for it to be rejected. Also, considering that patients can already be described and treated for having simple anxiety, there is no good reason to create a special category for people whose anxiety is around disagreement with a doctor about the nature or seriousness of an illness.

Sincerely,

Andrew ___

Submission by UK patient 3

General comments on the introduction to “Somatic Symptom Disorders”. Provision to comment not provided for within the SSD section:

“Psychological factors affecting medical condition”

“A. A general medical condition is present.”

An explicit cautionary note is required to address the circumstances where the general medical condition is either poorly understood, poorly described or is of unknown aetiology. Psychiatric ascription must not be used as a substitute for the lack of medical certainty.

“B. Psychological or behavioral factors adversely affect the general medical condition in at least one of the following ways:

1. the factors have influenced the course of the general medical condition as shown by a close temporal association between the psychological factors and the development or exacerbation of, or delayed recovery from, the general medical condition.”

An exclusionary note is required to secure avoidance of a circulatory diagnostic process, whereby the development, exacerbation or delayed recovery is of/from symptoms which are of putative somatisational origin and which accompany the identified general medical condition.

“2. the factors (e.g. poor adherence) interfere with the treatment of the general medical condition.”

Exclusionary notes are required to address the circumstances where no standardised treatment of the general medical condition exists, and where treatment regimes are only variably effective and where the side effects of treatment involve significant discomfort or distress. Psychiatry should serve as a compliance agency, making pejorative judgements on patients making reasoned assessments of the costs and benefits of a prescribed treatment.

Comments on individual sections:

J 00 Complex Somatic symptom disorder (CSSD)

“Some patients feel that their medical assessment and treatment have been inadequate.”

This text should be matched with a caution that diagnosis under CSSD should not be considered where there is any doubt about the appropriateness of the preceding treatment that the patient has received – some patients will indeed have received inadequate medical assessment and treatment at the point where a psychiatric diagnosis is under consideration.

For needs of clarity a specified exclusion from CCSD diagnosis is required for all patients who have medical complaints remaining to be addressed by an appropriate specialism.

J 01 Simple Somatic Symptom Disorder

“(3) Excessive time and energy devoted to these symptoms or health concerns.”

A test of ‘reasonableness’ of time and energy expended is required if this is to be a legitimate test. An individual who has multiple disabilities will necessarily expend much more time and energy managing their disablement, than an individual with a single disabling symptom. Objective separation of ‘symptom’ and ‘concern’ is also required if this is to be a meaningful test.

J 03 Functional Neurological Disorder (Conversion Disorder)

This diagnosis is highly problematic, providing the potential to confer a psychiatric diagnosis merely on the ascription of an inadequately formulated neurological diagnosis. The creation of such a ‘default’ has no medical value and FND should be abandoned as a diagnostic category until such time as defining psychological characteristics can be quantified.

Submission from US patient 1

For the attention of the DSM-5 Task Force and particularly to the members of the Somatic Symptom Disorder Work Group:

I have reviewed the draft for the proposed category of Somatic Symptom Disorders, and in particular Complex Somatic Symptom Disorder (CSSD), and find major flaws in their diagnostic philosophy and criteria that would easily lead to the misdiagnosis of, or unwarranted add-on psychological diagnoses for, 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. I strongly recommend that the clinical viability of the SSD category be re-examined and that the CSSD category be abandoned altogether.

There is a fundamental flaw in the way ‘somatic symptoms disorders’ are described in the latest draft:

“This group of disorders is characterized predominantly by somatic symptoms or concerns that are associated with significant distress and/or dysfunction…Such symptoms may be initiated, exacerbated or maintained by combinations of biological, psychological and social factors.”

This is unacceptably broad characterization. How many diseases exist in medicine that would not in some way fit this description? Virtually all immunologically-based diseases, and most pathogen-associated ones, could hypothetically be impacted by biological, psychosocial, and social factors. Yet initiation, exacerbation and maintenance can represent completely distinct etiologies, and “combinations” of biological and psychological or social factors could include, again, almost every disease in existence, including those for which there is not hard evidence (or evidence at all) to suggest that psychological intervention makes a significant impact or indeed that there is a ‘psychological component’ to the disease that can be isolated at all.

That brings up the essential problem with the entire concept of somatic symptoms disorders – they are based on an amalgam of clinical observations and scant psychological studies that are overwhelmingly poorly powered. Psychology in general (and psychosomatic study in particular) is an inherently difficult field in which to employ an empirical scientific approach, so it is largely inappropriate to treat the concepts that emerge from psychology on an empirically equivalent footing with the more rigorously positivist data that supports biomedical findings. The two are often philosophically incompatible; the concept of somatic symptom disorders is highly metaphorical, and its broad application in clinical medical practice can only lead to confusion and misdiagnosis. This is especially true in its application to diseases that are poorly understood. The precise etiology of these illnesses is still hotly debated; many clinicians and biomedical researchers who specialize in them are in total disagreement with psychosomatic specialists who speculate upon a role for psychiatric components based on studies within their own field. Therefore, until these poorly understood illnesses have been more thoroughly researched, it is wholly unscientific to assume a role for psychiatric factors in disease causation, initiation, or persistence. To do otherwise would be to inappropriately create a psychiatric diagnosis for many patients who may not require one, which carries with it the potential for iatrogenic harm and social stigma.

Is there any medical evidence that the condition(s) defined by these criteria actually exists? Has it been accepted by clinicians who treat, for instance, diabetes? Has the DSM-5 working group consulted physician’s organizations about the concept of adding such psychiatric diagnoses to essentially any medical condition? Has the impact this will have on healthcare delivery and insurance reimbursement truly been taken into consideration during such consultations? I suspect not, yet these are vital subjects.

The proposed categories and guidelines will create a scenario where a clinician will have too much power to determine whether a patient’s response to their bodily symptoms and concerns about their health are “excessive”, or their perception of their level of disability “disproportionate”. It will create a tendency towards violation of the precept of “do no harm” by compromising the centrality of patient input and the equality of the doctor-patient relationship. It will compromise the ability of clinicians to continue to reassess a case over time through empirical observations by encouraging an a priori framework and subjective bias in the clinicians’ minds. The effect for patient care could be disastrous, as legitimate and significant complaints could far more easily be ignored; further, insurance reimbursement for biomedical tests and treatments is certain to suffer when a psychological diagnosis is added to the physical one.

A clear example involves the proposed CSSD category and its potential effect on patients with myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS) – hereafter referred to jointly as ME/CFS. As defined, a CSSD diagnosis could be inappropriately applied to patients with ME/CFS – 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. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least two of the following are required to meet this criterion:

(1) High level of health-related anxiety.

(2) Disproportionate and persistent concerns about the medical seriousness of one’s symptoms.

(3) Excessive time and energy devoted to these symptoms or health concerns.”

The determination of points 1-3 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 assessments 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. Let us consider each of the subcriteria 1-3 in turn, with relevance to ME/CFS:

(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 apply subcriterion 2.

(2) – The assumption that every clinician is suitably educated about every physical disease is obviously the Achilles’ heel of this and the other subcriteria. Although ME/CFS is a serious physical disease that affects a rough estimate of a million people in the United States alone, it sadly is misunderstood and/or not taken seriously by the majority of clinicians, who know little or nothing about it. (The situation is actually similar for many other conditions for which a physical cause is never even questioned, such as adult mitochondrial diseases and various dysautonomias.) How can a clinician who knows little or nothing about a disease determine the medical seriousness of a patient’s symptoms, and therefore whether a patient’s response is disproportionate? And if the disease is chronic in nature, would it not be normal for a patient to express ‘persistent’ concern about it?

Part of the problem arises when a clinician considers certain bodily symptoms to be ‘normal’ regardless of context. It should be clear that a symptom is not something that can be standardized, yet members of the DSM-5 working group have previously stated that ‘orthostatic dizziness’ is a normal bodily sensation. This 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 that is certainly not normal and should be treated if possible.

Another issue is that a practitioner who is simply unaware of some of the hallmarks of ME/CFS will all too easily mischaracterize genuine patient concerns as excessive. As just one example, if the practitioner is unaware of the phenomenon of post-exertional decline, s/he will easily mistake an ME/CFS patient’s concerns about relapse, etc from overexertion for ‘catastrophizing’.

Thus, subcriterion 2 could be wrongly attributed to an ME/CFS patient by any practitioner lacking in knowledge or understanding of the disease and of research on the disease. Given the extremely poor state of medical education about ME/CFS, the likelihood of inappropriate labeling is great — a point that cannot be overstated.

(3) – Any disabling or distressing physical symptoms of sufficient intensity can dominate a patient’s life; thus subcriterion 3 is so lacking in clinical rigor and definition that it could be applied incorrectly to those with almost any disease with no psychopathology, but especially to ME/CFS patients due to the relative ignorance of a majority of clinicians about the disease.

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.

The case of ME/CFS provides just one obvious example of how major flaws in the criteria for Complex Somatic Symptom Disorder (CSSD) would easily lead to the misdiagnosis of, or inappropriate additional psychological diagnosis for, patients with a poorly understood physical disease that lacks a significant psychological component. As such misdiagnoses or add-on diagnoses could lead to extreme iatrogenic harm, I cannot overstate to the DSM-5 Task Force the importance of removing the category of CSSD.

Additionally, I hope that the Task Force will revisit the conceptual framework of Somatic Symptom Disorders themselves.

I thank you for your time and consideration.

Submission by UK patient advocate, Caroline Davis

J 00 Complex Somatic Symptom Disorder

I would like to express my deep concern about the proposed new category of Complex Somatic Symptom Disorder (CSSD) in DSM-5 scheduled for release in 2013.

CSSD proposes to add a mental health diagnosis to any condition where the sufferer has been ill for more than six months, and has developed ‘excessive’ concern about his or her health.

Since most good employers have a sick leave scheme which pays full or most-of-full pay for six months, this timeframe coincides most unhealthily with:

a) The individual’s realisation that their illness might not resolve, and/or might possibly be a disability and

b) A concerted effort to research their condition and seek more tests and treatments in order to get well and

c) The looming possibility of job loss, financial penury and the imminent need to make insurance or disability claims.

A patient in such a situation is likely to fall slap-bang within the CSSD criteria of:

(2) Disproportionate and persistent concerns about the medical seriousness of one’s symptoms and

(3) Excessive time and energy devoted to these symptoms or health concerns

The effect is to automatically deliver a diagnosis for an Axis I psychiatric disorder, simply for finding out what is causing one’s symptoms after such a long time of being ill, and wanting to do the best one can in order to get well and save one’s job and prospects for the future.

There is no empirical data to support the existence of ‘CSSD’. I believe that it is neither clinically safe nor morally right to force through un-researched, untried, untested (and possibly entirely inaccurate) diagnostic criteria for an entirely un-researched, untested (and possibly false) psychiatric condition. As your paper itself says, CSSD is merely ‘a construct’. There is no empirical evidence to support this ‘construct’ but plenty of circumstantial and factual evidence for why this ‘construct’ has been proposed and is being pushed forward with such unseemly speed.

Most patients are sick, but not stupid. We were managers, scientists, teachers, medical people, civil servants and business people in our former lives, and we still have functioning brains. We can see that names on the DSM committee considering CSSD include those in the pay of insurance companies and Governments (including the UK medical establishment). We also know that the implications of DSM-5 will extend to the next version of WHO.

There are those on your committee who wish only to do the bidding of their financial paymasters, and they are doing this by creating diagnoses such as ‘CSSD’ which will allow insurance companies and Government agencies to deny the claims of the genuinely sick and disabled. I urge the rest of the committee members not to allow them to do this, and to remain faithful to the objectives of WHO classifications as an excellent source of unbiased medical knowledge for the guidance of medical practitioners across the world.

Please do not let the DSM – and by implication the WHO classifications – become the vehicle of Governments and insurance companies to get their financial needs met.

I urge the committee to see past the claim that: a ‘diagnosis of CSSD could be applied to any patient with any diagnosis’. In clinical practice, as well as in your own discussions, it is already clear that this ‘diagnosis’ would be applied far more readily to patients already vilified for having conditions for which there is no objective medical test, eg: IBS, ME/CFS, FM, Gulf War Syndrome, interstitial cystitis, long-term pain and others. I urge the committee to examine the level of medical research funding dedicated to these conditions: they will find that funding for biomedical research has been restricted to bare, minimal levels for the past thirty years, which goes a long way toward explaining why there are no differential medical tests for these conditions yet. The solution is more and better biomedical research, not to create a new ‘bucket’ classification to financially manage-away these conditions.

I urge the committee to consider the consequences of moving too fast to approve a classification which is likely to be immediately pejorative to patients. The inclusion of ‘CSSD’ as a possibility for diagnosis will tap into the already hysterical media and ‘biopsychosocial’ research claims and pronouncements about these misunderstood and underestimated conditions.

The consequences – unintended by those whose moral conscience on DSM-5 is clear, and jauntily dismissed by those for whom recognition of these conditions would be financially and politically injurious – are likely to be catastrophic. They include: sceptical medical practitioners who will increasingly believe that it is OK not to test and treat, nor to provide appropriate care, nor to support disability benefit claims; and insurance companies who continue to charge huge premiums and would (with CSSD in place) be free to dismiss valid claims for some of the sickest people they serve.

Not only is this not an appropriate route to management or cure for such patients, but the consequences will quickly spiral into poverty, physical distress and in some cases preventable death.

Even if a patient should subsequently recover, the stigma of a mental health diagnosis is likely to legislate against the possibility of future employment and full reconstruction of a career at pre-illness levels. Thus it would have a direct economic effect on both the individual and the economy.

How much is CSSD really about the management of sickness and disability in patients by doctors and health service professionals, and how much is it the product of financial machinations by insurance companies and Governments seeking to minimise liability for medical care and disability?

While there is such a dearth of properly-conducted research (by non-partisan medical scientists) into the medical validity, applicability and usefulness of CSSD as a diagnosis; and while the likelihood of rushing into including it is likely to have such potentially dire consequences for patients (and, through effects on reputation and liability, also for medical practitioners) I request and appeal for CSSD to be omitted from the DSM-5.

Yours sincerely

Caroline Davis

Patient, advocate

Submission by UK patient advocate, B Tilley

How a person with ME – defined as a neurological condition by the World Health Organisation – is treated depends on whether their doctor ‘believes in’ ME. Often they do not. This results in very sick people being at best neglected and at worst harmed by their doctor. Many no longer consult their doctor as a consequence, and so disappear off the radar – appearing in no statistics, no surgery and no research.

This failed relationship – where desperately ill people are unattended by or fearful of their doctor – cannot be one that any good doctor aspires to. For people with ME it is disastrous, often requiring them to fend for, or defend, themselves when they are too ill to carry out even basic tasks. History will surely regard this relationship of doctor to ME patient as scandalous, even cruel.

My concern is that the new categories of CSSD will exacerbate the above situation, one which has developed as a result of the biological factors involved in ME being disregarded in favour of the notion that particular psychological beliefs underlie its cause. This erroneous idea has been permitted to take root and, unfortunately for ME patients, now informs the attitude with which many doctors view them and consequently the treatment, or lack of, that they get.

Since the proposed new category of CSSD uncannily mirrors the initial experience of acquiring ME, people suffering with this physical disease may well be viewed, disastrously, through the lens of this very broad, psychology-based viewpoint. From then on, any useful investigations or research will pass them by; they will be lost in a gloomy forest where all possibility of escape is gone, since they are in entirely the wrong place; there isn’t actually a way out from there with the disease they’ve got.

One example of this is the identical span of time – six months – which must elapse before someone can be diagnosed with ME and after which they qualify for criteria C of the proposed CSSD (Chronicity). So at the very point where people with ME are permitted to be diagnosed as such, they automatically tumble into criteria C.

Six months is a long time to feel ill. Day and night, without respite. In the case of people with ME, the disease tends to arrive suddenly and affects most of the major systems of the body [1]. People with this disease are aware of that physically, and know they are in deep biological trouble. As no accurate biomarkers are yet in general use, and as the basic range of medical tests typically fails to show what is wrong, both patients and physician are often stumped by the illness. For the doctor, waiting six months is not long; for patients – feeling so extremely ill, and bewildered that symptoms are not following the arc of recovery that illnesses typically follow – understandably become deeply concerned and desperately seek information to explain what is happening so alarmingly to them.

And we know from the biomedical research that what is happening to their bodies is very serious [2]; that it impacts profoundly on both their bodies and their cognitive abilities; that it may well shorten their lives considerably [3]; and that whatever the degree of severity, their lives will be drastically changed by the illness’s significant effect on their ability to conduct an autonomous, independent life, earn an income, and maintain all the elements of their lives previously taken for granted.

It is difficult, perhaps impossible, for people without this disease to understand how ill one can feel with it. The level of toxicity, and the experience of the body’s systems failing. Many genuinely feel like they are dying. Six months of feeling like this, with no medical explanation and no improvement, is profoundly worrying.

The deep anxiety that fuels the search for something to remedy this experience mirrors that of any creature whose sole experience of life – an experience that almost every living thing vigorously defends – feels under threat. Actions to allay these anxieties, to find and mend what is wrong – such as repeatedly visiting a doctor, asking for further tests or searching the world’s knowledge on the Internet – are entirely understandable since the cost of any mistake or oversight is so high [4]; doctors are not infallible, and life is precious.

To a doctor untrained in the biomedical aspects of ME (there seem to be many of them), persuaded in part that this serious multisystem illness is slight by its unhelpful single-symptom synonym, and practising in an intellectual climate which is dismissive or unaware of the biological factors underlying this disease, all of this understandable behaviour qualifies the ME patient, in the subjective and perhaps unwittingly biased opinion of the doctor, for Criteria B (‘Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns’). How can this view then be rebalanced or challenged? It simply consolidates and perpetuates the deeply damaging psychological model of ME, and leads the patient further and further away from genuine help.

Whether a patient’s concerns are disproportionate can only be known once a definite diagnosis of a minor illness is made and heightened anxieties remain. The danger here is that the ME patient who has legitimate concerns for their health is wrongly viewed as having disproportionate concerns. This would more accurately reflect the doctor’s lack of understanding of ME rather than the reality of the patient’s position, but it is the latter who would be saddled with such an unhelpful and inaccurate label, and its unhealthy effect on their treatment options.

Whatever its pitfalls, medically unexplained symptoms more accurately names the problem and where action should be taken: the medical world has not been able to explain what is happening in the ME body, and needs to investigate further. The new category of CSSD irresponsibly bats the weight of the problem back to the patient, who has enough to contend with already.

[1] The Complexities of Diagnosis by Dr. Byron Hyde in Handbook of Chronic Fatigue Syndrome, Leonard A. Jason et al, John Wiley & Sons, Inc (2003)

[2] For example, Barnden, L. R., Crouch, B., Kwiatek, R., Burnet, R., Mernone, A., Chryssidis, S., Scroop, G. and Del Fante, P. (2011), A brain MRI study of chronic fatigue syndrome: evidence of brainstem dysfunction and altered homeostasis. NMR in Biomedicine, 24: n/a. doi: 10.1002/nbm.1692

[3] Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you: disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways may explain cardiovascular disorders in ME/CFS. Maes M, Twisk FN. Neuro Endocrinol Lett. 2009;30(6):677-93. Review. PMID: 20038921 http://www.ncbi.nlm.nih.gov/pubmed/20038921

[4] ‘Studies of autopsies have shown that doctors seriously misdiagnose fatal illnesses about 20 percent of the time’– New York Times Feb 22, 2006 http://www.nytimes.com/2006/02/22/business/22leonhardt.html

Submission by UK patient advocate, Suzy Chapman, [owner of WordPress sites: Dx Revision Watch; ME agenda; Twenty-six soldiers of lead; Read ME UK Events] to Task Force

Submitted to DSM-5 Task Force

I write as a patient advocate and UK respondent.

I would like to raise the following points with the Task Force in the “Overall Comment” section:

Lack of feedback from Work Groups:

Outside the US, the Diagnostic and Statistical Manual of Mental Disorders is used to varying extent in clinical settings. Diagnostic criteria in the forthcoming edition will shape international research and academic literature. DSM-5 will influence how disorders are defined for international research purposes and the perceptions of patients’ needs by policy makers, commissioners of medical services, providers of social care, educators etc. It is hoped, again, that the views of those from outside the US submitting comment in this second public review exercise will be afforded the same consideration as the views of US stakeholders.

Once again, I welcome the decision of the Task Force to extend the submission of responses in this second review of draft criteria to the lay public as well as to APA members, clinicians, allied health professionals, researchers, administrators and other end-users. I welcome the Task Force’s recognition that patients, care givers, families and advocates and the patient organisations that represent their interests are crucial stakeholders in any form of consultation process. The input of those outside the medical profession merits particular consideration given the absence of patient representation within the individual Work Groups and in view of the very narrow range of professional users of the DSM that make up the 13 work groups.

The APA reports that over 8,000 responses were received during last year’s public review. Again, 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 exercise for which responses are acknowledged, recorded and responded to publicly by the Work Groups or the Task Force.

It remains disconcerting for both professionals and the lay public to submit responses in which considerable effort may have been invested when there is no real understanding of whether their responses have been used to inform any subsequent revisions to the drafts and in the knowledge that their comments and concerns are not going be visible for scrutiny by other stakeholders nor responded to publicly by the Work Groups and where there is no means by which stakeholders might view the aggregate concerns of others.

Since the various Work Groups were assembled in 2007, there have been only two progress reports issued by each of the Work Groups and no Work Group reports appear to have been published following last year’s public review.

1] Will the Task Force give consideration to the Work Groups identifying key areas of concern in response to their most recent draft proposals that have been brought to their attention via this second public review exercise, publishing summaries of key areas of concern and publishing Work Group responses to key areas of concern? Otherwise these public review and feedback exercises might be viewed as merely tokenistic nods towards public participation in the development process.

 

Lack of summaries of APA/WHO meetings:

The APA participates in the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders. The group is chaired by DSM-5 Task Force member, Steven E. Hyman. The APA also participates in a DSM-ICD Harmonization Coordination Group.

There is already a degree of correspondence between DSM-IV and Chapter V of ICD-10. For the next editions, the APA and the WHO have committed as far as possible “To facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria” with the objective that “The WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are identical for ICD and DSM.”

(Though the WHO acknowledges there may be areas where congruency may not be achievable.)

In a letter from Dr Hyman, published in the March edition of the Journal of Child Psychology and Psychiatry 52:6 (2011), pp 661-662 doi:10.1111/j.1469-7610.2011.02386.x,Dr Hyman writes,

“Rutter is not quite right that there have been no meetings aimed at harmonization to date, but the meetings have not had a formal scientific status, and have generally focused on administrative and procedural matters. By the time this commentary appears, a scientific meeting focused on harmonization will have occurred.” [1]

Both the APA and the WHO have written a good deal on the subject of commitment to transparency of process. However, no summaries of the meetings of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders have been published since the Summary of the 4th meeting in December 2008. The APA has not published copies of the four summaries of these joint APA/WHO meetings that have been published to date, on its own website.

According to the WHO’s Dr Geoffrey Reed PhD, (Co-ordinator, International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders), a 5th meeting was scheduled for late September 2009. Over 18 months later, a summary of the 5th meeting has yet to be published. It has not been possible to establish whether any further meetings of the International Advisory Group have taken place since September 2009.

As chair of the International Advisory Group, would Dr Hyman please expedite publication of a summary of the 5th meeting that had been scheduled for September 2009 and also summaries or minutes of any subsequent meetings that have been held by the International Advisory Group, the DSM-ICD Harmonization Coordination Group and any other subcommittees assembled with the remit of addressing harmonization between the two classification systems?

Last year, I had also requested that consideration be given to publishing copies of the summaries of these International Advisory Group meetings on the APA’s website or the DSM-5 pages, as well as on the WHO’s main website.

2] Would the Task Force please give consideration to these two requests and provide a response?

Insufficient notice of second public review:

On June 4, I emailed Task Force member, Dr William Narrow, to advise that the DSM-5 Development site was offline and people were reporting that they were therefore unable to upload comments. It is understood that the website was down in the US and UK, and possibly globally, for much of the day.

I put to Dr Narrow that prior to the revised DSM-5 Timeline published on May 4, the Timeline had had a public review scheduled for August to September 30, with no mention of any May public review.

To the best of my knowledge, other than the issuing of a news release on May 4 [2], no prior notice was given by the APA of its intention to bring forward the date of the second review from August to May and that revised criteria would be posted on May 4 and open for a six week public review period. This decision on the part of the APA will have taken many professional stakeholders, patient representation organization groups and their constituents by surprise and they will have been unprepared for a May to mid June public review process.

Given that this second review period has been only six weeks long (the previous having been 10 weeks); given that the Timeline, prior to the new Timeline published on May 4, had a second public review period scheduled for August to September 30 and no mention of a May review and given that the site was offline for much of Saturday, June 4, I asked Dr Narrow that the Task Force give consideration to extending the review period for at least an additional two weeks, until the end of June, since many stakeholders and patient groups would be finding the tight deadline difficult to meet.

I have received no response or acknowledgement from Dr Narrow or any spokesperson for the APA or DSM-5 Task Force to my communication.

I note that a third public review is currently scheduled for January to February 2012 when “Revised draft diagnostic criteria will be posted on http://www.dsm5.org and open to a third public feedback period for two months” [3].

3] Should the APA decide to vary the schedule for this third public review by bringing the date forward and/or reducing the length of the comment period, would the APA please give the public adequate notice?

Following the second public review, last year, Work Groups have made ongoing edits and revisions to the text of proposals as posted on the DSM-5 Development website and also to key PDF documents that accompany some of the Work Group’s proposals (the “Disorder descriptions” and “Rationale/Validity” documents).

For visitors to the site who are monitoring the progress of specific Work Groups, it can be difficult to track edits to both the individual category proposal web pages and edits to the PDF documents. In some cases, it has not been evident that edits have been made to the “Disorder descriptions” and “Rationale/Validity” documents unless the PDFs, themselves, are accessed and laboriously compared with earlier versions of the documents, which visitors to the site may not have on file or have retained the URLs for.

I am aware that headings for recent edits are listed on the “Recent Updates to Proposed Revisions for DSM-5” web page [4], but these lists also need to be visible on the parent pages for each section. I welcome the recent decision to highlight, in yellow, edits to the text of the documents, within the documents, themselves, but it would be helpful if URLs for earlier versions of the PDFs could be included within the text of the documents to facilitate comparision. Perhaps a basic wiki platform for each Work Group, where edit histories for proposals and the text of accompanying key documents could be tracked and compared, might have been a solution?

4] Could consideration be given to a system for logging the dates on which edits and changes have been made to the text of proposals on the web pages and content of the key PDF documents, where these apply, for example, a log placed on the parent page for each section of proposals?

Where “Disorder descriptions” and “Rationale/Validity” PDFs accompany and expand on Work Group proposals, could the links for these be made far more prominent, as some stakeholders have reported that they had not been aware of the existence of these key documents?


References:

[1] Journal of Child Psychology and Psychiatry Volume 52, Issue 6, Article first published online: 24 MAR 2011
http://onlinelibrary.wiley.com/doi/10.1111/j.1469-7610.2011.02386.x/pdf

[2] APA News Release No. 11-27 4 May 2011
http://www.dsm5.org/Newsroom/Documents/DSM5Structure_050411.pdf

[3] DSM-5 Timeline, Accessed 15 June 2011
http://www.dsm5.org/about/Pages/Timeline.aspx

[4] “Recent Updates to Proposed Revisions for DSM-5” webpage
http://www.dsm5.org/Pages/RecentUpdates.aspx

Submission by UK patient advocate, Suzy Chapman, to “Somatic Symptom Disorders” Work Group

I submit this response as a patient advocate, primary caregiver to a young adult patient and as a UK respondent.

I would like to raise the following in response to your Work Group’s proposals for:

Complex Somatic Symptom Disorder; Simple Somatic Symptom Disorder; Functional Neurological Disorder (Conversion Disorder); Psychological Factors Affecting Medical Condition

I note that some papers referred to in the References to the “Rationale/Validity” document are unpublished papers. I further note that a significant number of papers cited have been co-authored by members of the Work Group, or published in the journal co-edited by two members of the Work Group and for which [SSD Work Group member] Prof Michael Sharpe is an Associate Editor.

The APA participates in the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders and in a DSM-ICD Harmonization Coordination Group.

There is already a degree of correspondence between the existing “Somatoform Disorders” categories in DSM-IV and the corresponding “Somatoform Disorders” section of ICD-10 Chapter V. For the next editions, the APA and the WHO have committed as far as possible “To facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria” with the objective that “The WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are identical for ICD and DSM.”

The WHO has strict taxonomic rules for ICD codings and classifications. Between editions, ICD Revision may, for example, add a new disease or disorder or move an existing disease or disorder from the R code chapter and place it in another chapter, in response to new scientific research. Or may effect a change in hierarchy within existing categories or minor restructuring of a group of related disorders following the removal of a parent class. For ICD-11, diseases and disorders and their Inclusion terms will be described according to a common “Content Model”, for which the Topic Advisory Group for Mental Health is already in the process of populating content for definitions and other parameters as it works towards the ICD-11 Beta draft. The WHO is conservative in its revisions; it doesn’t take a handful of existing categories, dump them in a bucket, stir them up with a stick, turn them out and assign new labels to them, as your Work Group is proposing to do.

The framework your Work Group proposes, if approved, would effect a radical restructuring of the DSM-5 “Somatoform Disorders” categories. Given the strictures of its own taxonomic rules, it is difficult to envisage how ICD Revision (or for that matter, the committees charged with the development of the forthcoming ICD-10-CM, for which a partial code freeze is imminent), might accommodate these very radical proposals to combine a number of existing categories under a new rubric and create a new category “CSSD” under which term other existing terms would be combined, into the ICD framework – even if WHO/ICD Revision Steering Group were to consider these proposals valid constructs, which I very much doubt they will.

I note that the Work Group’s “Rationale/Validation” document makes no attempt to address the issue of whether harmonization between the two classification systems might be viable under the Work Group’s current proposals. If the Work Group considers these proposals unlikely to prove acceptable to ICD Revision, before or following the ICD-11’s own consultation processes and field trials, or feasible under ICD taxonomic rules, but seeks to comply with the APA’s commitment towards congruency between disorders and diagnostic criteria across the two systems, one questions why the Work Group persists with proposals for such a radical restructuring and also questions whether this can be considered good use of the time and resources of those clinicians already undertaking, or about to undertake field trials and of the patients who will be participating in them.

Diagnostic criteria in the forthcoming edition of the DSM 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 commissioning and delivering medical services beyond the US. It is hoped then, that the views of stakeholders from outside the US submitting responses in this second review of draft proposals will be afforded equal consideration.

There remains considerable concern amongst international patient organizations, patients and advocates for the implications of the proposals for combining Somatoform Disorders and Psychological Factors Affecting Medical Condition (PFAMC) under a common rubric – “Somatic Symptom Disorders”, and for the proposal to group other existing categories under a new classification, “Complex Somatic Symptom Disorder” (CSSD), and a “Simple Somatic Symptom Disorder” (SSSD).

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

But if these major revisions to the Somatoform Disorders categories were to be approved there will 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.

Your proposals 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 the so-called “unexplained medical symptoms and syndromes” and “FSSs”.

But there are particular concerns for the implications for patients with Chronic fatigue syndrome, ME, Fibromyalgia, IBS, chemical injury, chemical sensitivity, chronic Lyme disease and GW illness.

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 your work group’s brief April report, your Chair, Joel Dimsdale, and fellow Work Group member, Francis Creed, 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 your 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 funding by the National Institute of Mental Health (NIMH), is understood to serve as a Task Force liaison to the Somatic Symptom Disorders Work Group and works closely with your group [1].

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

These radical proposals for a “Complex Somatic Symptom Disorder” category will provide a dustbin into which these diverse and under researched disorders might be shovelled.

It will expand markets for antidepressants and therapies such as CBT to address perceptions of

“…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 vague criteria and very subjective measures of whether the patient is perceived by the clinician as having “dysfunctional” or “cognitive distortions” about their symptoms or disease resulting in “Misattributions [and] excessive concern or preoccupation with symptoms and illness”, and whether the patient is “catastrophising” or has adopted “the sick role”.

By what means can such constructs be accurately measured by clinicians and safely applied?

The APA appears hell bent on colonising the entire medical field by licensing the potential application of a mental health diagnosis to all medical diseases and disorders, if the clinician decides that the patient’s (or in the case of a child, a parent’s) response to their bodily symptoms and their concerns about their health are “excessive”, or their perception of their level of disability “disproportionate”, or their coping styles “maladaptive.”

Misidentification or misapplication of a “Somatic Symptom Disorder” label will increase the potential for inappropriate treatment regimes – antidepressants, antipsychotic drugs and therapies such as CBT and Graded exercise therapy (GET) 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 [with their somatic symptoms].”

Application of these vague and highly subjective criteria may have considerable implications for the diagnoses assigned to patients and the treatments and investigations they then receive.

Get it wrong and patients are exposed to the risk of iatrogenic disease, missed identification of serious disorders or of waiting months or years for the correct diagnosis and treatment.

Get it wrong and practitioners will be at risk of litigation.

Get it wrong and this will impact on the securing of health insurance, welfare and social care packages, disability and workplace adaptations and the provision of education tailored to the needs of children too sick with illnesses like CFS and ME to access mainstream school. The application of a diagnosis of CSSD may limit the types of treatment, medical investigations and testing that clinicians are prepared to consider and for which insurers are prepared to fund; it will impact on the payment of employment, medical and disability insurance and the length of time for which insurers are prepared to pay out.

Get it wrong and families with children and young people with CFS and ME will be put at increased risk of wrongful accusation of “over-involvement” or of “excessive” concern or “anxiety” for a child’s symptomatology or erroneously accused of “Factitious Disorder Imposed on Another” which may result in social services intervention, child protection orders and involvement of the courts. Children and young people will be at increased risk of being removed from their parents’ care and placed on psychiatric wards with restricted visits from their families or placed into foster care because parents are considered to be colluding in the maintenance of “sick role behaviour.”

In April 2010, The CFIDS Association of America [3] 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.”

In April 2010, UK patient organisation, the 25% ME Group [4] 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 urge the Somatic Symptom Disorders Work Group to reconsider their current suggestions for the restructuring of the “Somatoform Disorders” categories and give due consideration to the implications for all patients of these current proposals.

Suzy Chapman, UK patient advocate

References:

[1] Escobar, Javier I., M.D., M.Sc. DSM-5 Task Force Member Biosketch and Disclosure information: http://dsm5.org/MeetUs/Pages/BioJavierIEscobar.aspx

[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/display/article/10168/1171223?pageNumber=1

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

[4] The UK 25% ME Group 2010 submission to the DSM-5 public review:
https://dxrevisionwatch.files.wordpress.com/2010/02/25-me-group-dsm-5-submission-2010.doc

Submission from Canadian patient, Glen Rich

I wish to comment on the proposals for DSM-5 and particularly on the newly created category for “Complex Somatic Symptom Disorder” (CSSD) and the category “Simple Somatic Symptom Disorder” (SSSD).

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

The biggest concerns are:

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

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

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

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

4. Alignment with ICD: While the DSM-5 is separate from the ICD-10 and is used primarily by mental health practitioners, there is an alignment between the two today. It appears that that will continue with ICD-11 although it is not clear at this time how that will be achieved. Instituting the CSSD in the ICD-11 would have negative implications not only for the US but also for all other countries.

I are not alone in voicing serious concern for the unintended consequences of the DSM-5 plans for SSSD and CSSD. Numerous organizations and individuals stated these same concerns in the April 2010 review cycle yet the CSSD category remains essentially unchanged. Even members of the psychiatric community, most prominently Dr. Allen Frances, the chair of the DSM-IV task force and Dr. Robert Spitzer, the chair of the DSM-III task force, have raised concerns with the process, content, direction and unintended consequences of the DSM-5 (7,8,9). Dr. Allen Frances (the chair of the DSM-IV task force) raised this issue of the unintended consequences of the DSM-5, especially around a premature “paradigm shift”. In “A Warning Sign on the Road to DSM-5: Beware of Its Unintended Consequences” (7), he states “Part of the exaggerated claim of a paradigm shift in DSM-5 is based on the suggestion that it will be introducing dimensional ratings and that this will increase the precision of diagnosis… [But] Including an ad hoc, untested, and complex dimensional system in an official nomenclature is premature and will likely lead to similar neglect and confusion”.

I urge you to seriously reconsider the inclusion of this category. For ME/CFS patients and for many other patients with other real but poorly understood diseases, those unintended consequences of implementing CSSD and SSSD could be disastrous!

Thank you.

Glen Rich

References

1) Somatic Symptom Disorders, DSM website, May 29, 2011, (http://www.dsm5.org/ProposedRevision/Pages/SomaticSymptomDisorders.aspx )

2) “Somatic Symptom Disorders”, description published by the American Psychiatric Association, Draft 4/18/2011, (http://www.dsm5.org/Documents/Somatic/Somatic%20Symptom%20Disorders%20description%20April%2018,%202011.pdf )

3) “Justification for Criteria – Somatic Symptoms”, Published by the American Psychiatric Association, Draft 4/18/2011, (http://www.dsm5.org/Documents/Somatic/DSM%20Validity%20Propositions%204-18-11.pdf  )

4) Michael First for the American Psychiatric Institute, “Somatic Presentations of Mental Disorders (September 6-8, 2006)”, (http://www.dsm5.org/research/pages/somaticpresentationsofmentaldisorders(september6-8,2006).aspx )

5) NIH State of Knowledge Workshop on ME/CFS Video and agenda, April 7-8, 2011 (http://orwh.od.nih.gov/CSF%202011/newsEvents.htm )

6) L. Nacul et al., “The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers”, BMC Public Heath, May 27, 2011 (http://www.biomedcentral.com/1471-2458/11/402/abstract )

7) Dr. Allen Frances, MD, “A Warning Sign on the Road to DSM-5: Beware of Its Unintended Consequences”, Psychiatric Times. June 26, 2009. (http://www.psychiatrictimes.com/dsm-5/content/article/10168/1425378 )

8) Dr. Allen Frances (DSM IV) and Dr. Robert Spitzer (DSM-III), Letter to the APA board of trustees. July 6, 2009. (http://www.scribd.com/doc/17172432/Letter-to-APA-Board-of-Trustees-July-7-2009-From-Allen-Frances-and-Robert-Spitzer )

9) Gary Greenberg, “Inside the battle to define Mental Illness,” Wired Magazine. Dec 27, 2010. (http://www.wired.com/magazine/2010/12/ff_dsmv/all/1 )

Submission by NL patient, Maarten Maartensz, M.A. psy, B.A. phi

me+ME: Submission to the DSM-5 Task Force of the APA 

Submission by US patient, Jay Spero

My comments are limited to the prospect of a diagnosis of “Chronic Fatigue Syndrome” being included under the umbrella DSM-5 diagnosis of Complex Somatic Symptom Disorder.

I wonder, as a biased patient afflicted with a “Medically Unexplained” condition perversely known as “Chronic Fatigue Syndrome,” how I might view this development if I were a psychiatrist. How much research would I have to do to see things as I currently do, as the admittedly biased patient I am?

How much work would I have to do to see a sharp divide between a criteria that defines patients in a way that might—MIGHT—make sense in a psychiatric context (Oxford, or CDC Empirical), and one that defines patients in a way that suggests a very different, and far more physically serious, condition (Canadian Consensus)?

Were I a psychiatrist, I suppose I might look upon patients defined by the Oxford Criteria as, possibly, a fruitful area for psychiatric research–although not at the expense of medical treatment. But those of us whose conditions are defined by stricter criteria are not ‘chronic fatigue’ patients. It would be so much easier if we were—because treatments such as antidepressants, graded exercise, and cognitive behavioral therapy might then be effective. However, while they actually worsen our illness, they are somehow still recommended for us. Because we share a common diagnosis with patients who are suffering from something very different. I wonder how much research I’d have to do, if I were a psychiatrist, to see that this is actually the case.

To see that a false ‘us vs. them’ scenario has been created, one where there are roughly 3 times as many ‘chronic fatigue’ patients as there are of those of us with a condition more accurately described as Myalgic Encephalomyelitis. To see that we have to deal with the consequences, intended and otherwise, of classifying us according to a common diagnosis with a starkly different patient population.

Mind you, while there is an unarguable stigma attached to mental illness in our society, we patients did not create it. But we are all too often blamed for perpetuating it whenever an attempt is made to differentiate between the suffering that can be caused by, say, depression, and the suffering the disease we are stricken with produces. A lot of people who don’t seem to care that medical science has mostly ignored us become rather indignant when some of us protest that our illness is ‘real,’ without regard for the possibility that this sort of defensive remark is the result of being accused of hypochondriasis, somatization, or malingering, sometimes for decades on end, as opposed to a desire to claim that suffering due to a psychosomatic disorder is somehow imaginary.

I cannot imagine I would view patients defined by the Canadian Consensus Criteria similarly to those defined by Oxford or CDC Empirical. There’s a big difference between measurable autonomic dysfunction and other neurological abnormalities, and immune system dysfunction as is seen in ME/CFS…and interpretations of ‘fatigue’ questionnaires.

There’s a big difference between depression observed in a sick patient where it may be the cause of somatic symptoms, and depression that is the result of somatic symptoms for which there is no explanation, cause, or treatments, as well as a situation where so many patients encounter disbelief , ridicule, and worse, from doctors, family, and friends. There’s a big difference between patients who are physically able to travel to ‘fatigue clinics’ to participate in programs utilizing Cognitive Behavioral Therapy and Graded Exercise Therapy, and those who are housebound, or, worse, completely bedridden, some with extreme sensitivity to light, to chemicals, to certain types of foods…some with feeding tubes. Of course, these two very different types of patients have in common the diagnosis of “Chronic Fatigue Syndrome.”

But, heck. You guys go ahead, you do what you want. You’re going to do what you want no matter what, and nobody’s going to stop you, and you know it. And perhaps it’s important that psychiatry plays a role in medicine.

But isn’t that nice? Being able to do whatever you want to do? I imagine it must be.

But you should know that what you’re doing to a lot of people is very, very wrong. You should ask yourself the question that I, as a biased patient, would hope, would think, I would ask myself if I were somehow new to all this, a psychiatrist, even, and trying to examine a complicated topic with a clean slate.

Considering how physically sick so many of these people are, considering that you could find a way to study patient cohorts like Oxford and CDC Empirical WITHOUT impeding the progress of treating those stricken with what we know best as Myalgic Encephalomyelitis, best defined as Ramsay ME or Canadian Consensus ME/CFS, considering that helping us should be more of a priority as a matter of medical necessity…

…but you don’t, as the “Chronic Fatigue Syndrome” label renders both types of patients to be seen as identical due to the common diagnosis…which leads me, a biased patient who has come to view this as a crime against humanity, to ask…

…how do you people sleep at night?

Jay Spero

Submission by UK patient 2, name redacted

I am deeply concerned about the new category of CSSD, which is highly subjective, relying on unexplained symptoms and ‘concern’ about them. The remit of this is far too wide and could easily lead to misuse or overuse by doctors. It may well force diseases which will ultimately found to be non-psychiatric into a psychiatric cul-de-sac, as has happened in the past with illnesses like lupus and MS, for instance. This will cause additional suffering for patients.

The definition makes no sense in assuming that ‘excessive concern’ after six months of unexplained symptoms is indicative of mental disorder. This is particularly true, for instance, in the case of myalgic encephalomyelitis (M.E.)/chronic fatigue syndrome (CFS) (defined as a neurological disorder by the ICD), which can be accompanied by severe exhaustion, cognitive dysfunction, nausea and pain, and which is associated with significant reductions in work and social activities. This set of circumstances in any normal human being would cause substantial concern – yet the APA asserts that such concern may be enough to fit a person into its new category of mental disorders.

I am writing as someone who has suffered from M.E. for over two decades. For the first decade I struggled on working, my problems largely being labeled as ‘psychological’ by several doctors, who did not take my health concerns seriously. Partly because of following these doctors’ advice not to listen to my symptoms and to push on, I subsequently became severely affected, unable to walk any distance or cook for myself, for instance. Only then was I referred to the National M.E. Centre in the UK and given a diagnosis of M.E. by a consultant neurologist. The consultant told me that if my symptoms had been taken seriously earlier as indicative of organic disease, I may never have got as ill as I am.

I am worried that people presenting with illnesses like M.E. might be particularly vulnerable to a misdiagnosis of CSSD and might consequently never get appropriate biomedical support and so follow the path that I did to a severe and disabling state.

Yours sincerely,

(Name withheld)

M.E. sufferer for over two decades

Submission by US patient, “26yearsME/CFS”

Response on the Proposal for Complex Somatic Symptom Disorders and Simple Somatic Symptom Disorders

Date: June 15, 2011

I wish to comment on the proposals for DSM-5 and particularly on the newly created category for “Complex Somatic Symptom Disorder” (CSSD) and the category “Simple Somatic Symptom Disorder” (SSSD). I am very concerned about the potential for harm that can come to patients through the misuse of the SSD and especially the CSSD in clinical practice, especially with reference to patients with ME/CFS, an illness which is so far misunderstood, misdiagnosed and mistreated by the medical community at large. I understand that there have been discussions over time that have mentioned CFS specifically in the context of “somatic presentations of mental disorders”.

My main concerns are:

1. Establishing a CSSD framework that includes hypochondriacs and yet could also be easily applied to patients with real and serious medical diseases like ME/CFS, and will exacerbate the stigma and mistreatment that patients have suffered for years. ME/CFS is especially subject to this because the ICD-10-CM categorizes CFS under “Signs and Symptoms/Malaise and Fatigue” and because those studying somatic symptoms of mental disorders specifically call out CFS.

2. The highly subjective nature of the criteria, especially when applied to real diseases that are poorly understood will lead to misuse of this category and the incorrect diagnosis of a psychological disorder. There are severity metrics proposed for CSSD but these do little to allay concerns when the benchmarks for normal response include healthy volunteers on the one hand and hypochondriacs on the other. How will these instruments be validated for ME/CFS, which has recently been reported to have “a greater impact on functional status and well being than other chronic diseases such as cancer”? Once the physician applies a mental health label by diagnosing CSSD (whether as the primary diagnosis or as a secondary diagnosis), there will be profound implications for patients in terms of diagnosis, treatment, disability, insurance, travel (visa refusals in countries which don’t accept those with diagnoses of “mental illness”).

3. Inappropriate Treatments and Withholding of Needed Diagnostics: The “Justification for Criteria – Somatic Symptoms”, in explaining the creation of CSSD, states that “treatment interventions are similar in this group of disorders” and describes the use of antidepressant medications and CBT for “the identification and modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors and promote more effective coping.” It further states that “all of these disorders benefit from specific interventions with the patient’s non-psychiatric physician (e.g. limiting testing and procedures unless clearly indicated)”.

Antidepressant medications and CBT have been studied and shown to help those with clinical depression only, a diagnosis which has been confused with ME/CFS, which has been established scientifically as a neuro-endocrine-immune illness, and best defined clinically by the Canadian Case Definition of 2003. The overly broad diagnostic definitions historically used in the United States by the CDC do not adequately differentiate ME/CFS from Depression. ME/CFS is defined primarily by the WHO in 1969 as a neurological illness. Suggesting that doctors focus on treating with antidepressants and CBT and limit other medical testing and procedures has already had a disastrous impact on many patients. The experience of those in Great Britain, where this approach is already institutionally installed, is evidence for the failure of this mistaken course.

Additionally, according to research by Dr. Byron Hyde and Dr Miraz, a diagnosis of CFS has resulted in the failure of doctors to look for and find other co-existing medical problems, such as heart, thyroid, pancreatic and adrenal diseases, in up to 75% of cases.

4. Alignment with ICD: While the DSM-5 is separate from the ICD-10 and is used primarily by mental health practitioners, there is an alignment between the two today. It appears that that will continue with ICD-11 although it is not clear at this time how that will be achieved. Instituting the CSSD in the ICD-11 would have negative implications not only for the US but also for all other countries.

5. The future of biophysical research into the causes, dynamics and treatment of ME/CFS would be severely compromised and curtailed internationally, as the classifications used in the USA both by the DSM and the CDC shape and lead the field. If CSSD is seen as a primary diagnosis, it would undermine over 80 years of medical research into ME/CFS and skew important statistical data relating to prevalence, health care and other issues.

We urge you to further limit and revise this category in order to avoid the destructive consequences I have indicated above for ME/CFS patients.

Thank you,

26yearsME/CFS

Submission by UK patient 1

I wish to comment on the new category that you are considering creating of Complex Somatic Symptom Disorder. I am particular concerned with section B.

I believe it is inappropriate and vague to try to classify somebody as psychiatrically unwell due to ‘Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns’:

How is one to decide what is excessive and what is appropriate without knowledge of what it is to live in another persons body?

What a psychiatrist might consider ‘excessive concern’ another person might consider ‘realistic worry’ if symptoms are intense, intractable and severely impair life.

When a person suffers from, for instance, chronic ongoing pain and other symptoms is it not ‘normal’ to try to rid oneself of them?

Would doing stretches several times a day to try to relive pain and discomfort be counted as ‘excessive behaviour’? How many times a day, for what amount of time. What if giving up the behaviour leads to deterioration? Who has a right to decide this other than the patient themselves?

What about constant unrelenting fatigue or head pain or dizziness? Is it ‘excessive’ to be focused on such symptoms when they affect every aspect of daily life to an extent that one is functionally crippled by them? Such a belief shows little or no understanding of what it is like to live in such a body.

To take such a lack of understanding of subjective experience of severe physical symptoms and construct a spurious and vague illness category from them is not only philosophically flawed it is dangerous to those who may be labelled in such a way.

This definition is far too vague and leaves far too much room for definitional ‘creep’, misinterpretation and misuse.

It could certainly lead to possible missed diagnosis should a patient be placed in the CSSD group and then left in the psychiatric gulag with no hope getting to the bottom of the problem. To leave people without hope can only be called cruel.

I am concerned, although not ‘excessively’, that many illnesses such as ME/CFS, fibromyalgia and pain syndromes, currently defined as neurological or simply not yet fully explained might, get drawn into the CSSD basket and that, once there, patients will lose all hope of receiving any appropriate medical treatment.

I am sure you are aware that medicine does move forward and that many illnesses once defined as psychiatric or psychological are now no longer considered ‘medically unexplained’. Just because there is currently no ‘medical’ explanation for a specific symptom and no understanding of how somebody might experience that symptom does not automatically render it a problem for psychology or psychiatry.

Yours sincerely,

Name redacted
ME sufferer of 15 years

Submission by UK patient and advocate, Gabrielle Lewis

I write with concern that certain disorders, namely that known as Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, will be deliberately included under the proposed DSM-V revisions. I deem in inappropriate that a condition classified as a neurological disorder under the World Health Organisation should be in any way classified as either somatic or psychiatric. I am particularly troubled by the fact that the criteria set out under the new category of Complex Somatic Symptom Disorder means that any patient who suffers from complex long term conditions where pain and fatigue are primary symptoms, could be labelled as misreading the signs of their disease therefore being diagnosed as somatic before further investigations have been carried out.

This revision could lead to further cases where people are excluded from being diagnosed with certain conditions and more people are misdiagnosed with psychiatric diseases they do not have.Many experts in the M.E field know that certain symptoms such as neurally mediated hypo-tension are commonplace, yet if a patient is labelled as psychosomatic, then this treatable sub-condition will remain ignored as it has for myself for three years. I am also HHV6 positive but because of the British stance on ME, I remain untreated. Don’t let the American Psychiatary Association ruin more lives. You have enough good research coming out of America, listen to it. You CAN treat, you MUST treat. You don’t need to do this to people whose disease is classified as neurological.

The British Guidelines are based on the principle that M.E patients suffer physical symptoms that are not the consequence of underlying physical disease but are due to abnormal illness beliefs, and that these abnormal beliefs are responsible for the perpetuation of the perceived disability. The NHS Fatigue Services are based around this very principle.

It is clear that in clinical practice, certain psychiatrists would like to see the diagnosis of M.E replaced by a diagnosis of somatisation – the unproven beliefs of the psychosocial school have no relevance to complex organic disorders such as M.E.One of the most compelling sources of hostility between patients and doctors in the UK is the hypothesis proposed in the “Lancet” by Professor Michael Sharpe in 1999, that M.E is a psychiatric condition, characterised by a history of emotional disorder and childhood abuse.33 (Wessely, C Nimnuan, M Sharpe, Functional somatic syndromes: one or many?, Lancet 1999; 354: 936-39, 11 September 1999.) Given Professor Sharpe’s undeniable bias towards M.E patients and blaintent disregard for the WHO classification, surely any suggestion that M.E be under the new DSM-V category be reviewed?

Gabrielle Lewis
Action Now

Submission by UK patient/advocate, Chris Douglas

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

I write as a science post-grad and ex-statistician now unable to work due to chronic ill health. My feedback on the DSM-5 proposals concerns the redefinition of ‘Somatoform Disorders’ (SD) as ‘Somatic Symptom Disorder’ (SSD) and the introduction of a new classification of ‘Complex Somatic Symptom Disorder’ (CSSD).

Firstly, the definition of SSD would allow significant scope for any and all medical diseases and disorders, regardless of etiology, to be included under a mental health diagnosis. This is both disingenuous and unethical, particularly for diseases where etiology has yet to be established, as it allows such conditions to be ‘convicted’ of being wholly psychiatric in the absence of a biomedical defence. Two natural outcomes of such a ‘conviction’ are that patients receive inappropriate and/or harmful treatments and/or that further research into biomedical research is curtailed. Either outcome would be cruel and immoral.

One has the impression that SSD is facilitating a ‘land grab’ of etiology-less illnesses for psychiatrists to prey on and this does the APA no credit.

Secondly, the introduction of CSSD would provide a broad, ill-defined and highly subjective ‘psychiatric bucket’ into which could be swept the many and disparate diseases and disorders still undergoing biomedical investigation. Again, one has the impression that this classification is intended to keep for psychiatrists anything that physical science has yet to fathom.

This impression is reinforced by the wooliness of CSSD’s measures, most of which would capture 100% of the world’s population at different points in time. Does this mean that everyone on the planet should be given a mental health diagnosis ? Even those writing DSM-5 and those implementing it ? Surely that is not statistically possible.

Many patients, patient organisations and professionals have grave concerns about the accuracy, viability and ethics of SDD and CSSD. I join with them to urge the DSM team to scrap these particular proposals and develop logical and humane alternatives that ‘first do no harm’ to patients and so, also, do no harm to the credibility and reputation of the APA.

Submission by Canadian patient, Kati

Commentary for the Complex Somatic Symptom disorder proposal

I would like to express my deepest concern in regards to this category.

I am a patient with ME/CFS aka chronic fatigue syndrome. My GP thought erroneously that I was depressed for 3/4 of the course of my disease despite the fact that I have biological findings that are abnormal. I also have chest pain, which worry me, headaches, shortness of breath and other symptoms that would be categorized as “vague” in the medical profession because this disease has not been research enough.

It is NOT a psychiatric diagnosis.

With a diagnosis of chronic fatigue syndrome, all of my symptoms are undermined, and not taken seriously.

If a patient with ME/CFS’s first specialist is a psychiatrist, it is more likely that their diagnosis will be complex somatic symptom disorder and you are doing a terrible disservice to this patient by doing so.

Complex Somatic Symptom Disorder just makes it easy for psychiatrists and physicians to put a label and to get rid of a patients that express concerns about their health. The role of the physician is first, do no harm. This diagnosis has the potential to create more harm than good. Instead I would suggest boosting the research funding for physical causes of the complex somatic symptoms and find a real name for what ails these poor patients.

I strongly suggest that you drop this category all together and start consulting physician experts in ME/CFS in the like of Dr Dan Peterson, Paul Cheney, Nancy Klimas, Charles Lapp, David Bell, Dr Leonard Jason and others and ask them about the appropriateness of this diagnosis for the patients they see. These physicans have fought for us patients for 3 decades now- and they still don’t get recognition for the work they do.

American Psychiatric Association, it is time to listen to the voices.

Kati, sick for 2.5 years, on disability

Submission by UK patient and advocate, Kevin Short

I am concerned that the American Psychiatric Association’s (APA) mental health guidelines may be manipulated towards ends that have little to do with the best interests of patients or the psychiatric profession as a whole. I write with regard to the ongoing upgrade of the Diagnostic and Statistical Manual of Mental Disorders that is due for publication as DSM-5 in 2013. Specifically, with the proposed new category of Complex Somatic Symptom Disorder (CSSD)…

This text is available online as a PDF at:

http://www.angliameaction.org.uk/docs/dsm5-cssd-submission.pdf

Submission by Australian patient, Susanna Agardy

COMMENTS ON DSM -5 SOMATIC SYMPTOM DISORDERS, CSSD

As an individual who is severely affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and one who observes events surrounding this condition I offer my comments on the proposed CSSD criteria.

The description of CSSD strongly reflects the spirit of the Wessely school in relation to ME/CFS and appears to be aimed at any medical condition which has not quite attained medical legitimacy in the eyes of many practitioners. Unfortunately, ME/CFS falls into this category and is being placed at risk by these criteria of being further entrenched in this position.

The proposed criteria rely on the prejudice of the practitioner for a diagnosis of CSSD and for the conclusion that the patient’s reaction to symptoms is unreasonable. The criteria are equivocal and pathologise patient beliefs and behaviours which are rational in their context and may serve the survival of patients. For example:

‘Some patients feel that their medical assessment and treatment have been inadequate.’ Indeed, very often these are inadequate. This is true not only of ME/CFS where it can take years to get a diagnosis, but also of other conditions, as the Work Party would be aware. Lack of diagnosis may be due to limitations in medical knowledge and the health system. However, pathology for being a ‘nuisance’ case is attributed to the patient. With the already successful penetration of the medical profession by anti-dualist influences a report of many physical symptoms can elicit an on-the-spot diagnosis of anxiety or depression from a doctor (even when there is no sign of either), possibly hindering proper diagnosis and treatment and perpetuating the search for them, leading to a ‘high level of medical care utilization’ . Some guidelines on ME/CFS specifically recommend against more advanced medical tests once an ME/CFS diagnosis has been given. Thus, they obstruct the discovery of so far undiagnosed disease. All of this can lead to distress which is then further pathologised.

‘…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.’ No doubt this can apply to many difficult medical conditions. Why would this constitute a psychopathology when it could be due to the failings of diagnosis or inappropriate treatments?

While some patients may have a ‘maladaptive response to symptoms’, in ME/CFS it has often failed to be recognized that patients’ responses are driven by their underlying conditions and symptoms. It is therefore wrong to imply that a patient has a choice in their response, for example, when the patient rests instead of increasing activity. For the same reasons the patient may show ‘poor adherence to medical recommendations’. The recommendations may be simply inappropriate and reflect ignorance of the patient’s underlying condition. Patients owe it to themselves to avoid inappropriate and harmful treatments.

‘Health concerns may assume a central role in the individual’s life…’ Of course they do! When a chronic health condition has caused the loss of work, a reasonable income and a social life, as well as causing pain and suffering, what would you expect? Such statements fail the reality check. This statement is also made when the practitioner reverses the cause-effect sequence of events in the patient’s life, and so attributes poor health outcomes to ‘undue’ health concerns (translated to ‘dysfunctional beliefs’) instead of the patient’s medical condition.

CSSD criteria rest on the use of words such as ‘excessive’ and ‘disproportional’ which rely on a subjective interpretation: excessive and disproportional in relation to what? How can the diagnostician be certain that they have excluded all serious disease states? Surely, the validity of these labels can only be determined in relation to the kind and severity of the patient’s condition and its symptoms. Sophia Mirza, a 32 year old diagnosed with ME who died as a result of it, was bedridden, debilitated and sensitive to many things. http://www.sophiaandme.org.uk/sophia%20&%20m.e.%20her%20story.html  She was brutally interned in a mental hospital by her psychiatrist for her refusal to do CBT/GET. Her post-mortem showed that she had inflammation of the spinal cord – dorsal root ganglionitis which ultimately led to her death. Her behaviour was evidently thought to be a ‘maladaptive response’, excessive, etc. Since the condition she experienced was so serious that it was fatal, her perception could not be said to be ‘unduly threatening, harmful, or troublesome’ or disproportionate. Her condition was threatening, harmful and troublesome in the extreme. While her psychiatrist could not have known her precise underlying condition, a respectful, scientific open-mindedness in the face of her symptoms would have avoided his arrogant blunder. While her disease was more extreme than the condition of most sufferers, there are many others debilitated with ME/CFS exposed to poor diagnosis and potentially harmful treatment.

As the Work Party would be aware, diagnosis of SSD or CSSD can itself lead to further distress. This can happen firstly, because the diagnosis is inappropriate, replacing a biomedical one and can result in the patient being deprived of the opportunity to receive a more precise diagnosis and treatment. Secondly, its manner of application too often invalidates the patient. Thirdly, it carries stigma even in medical settings and is a short step from accusations of malingering which can lead to maltreatment.

It is difficult to see how expansion of the coverage of CSSD and using it as an add-on diagnosis would advance the welfare of patients. Why is the Working Party so enthusiastic to capture a wider range of conditions under the classification when there is no effective treatment for these conditions? On the other hand, patients sometimes improve, without psychiatric intervention. Their distress is alleviated too. In the meantime, of course, patients need proper support and need to avoid harmful treatment.

The proposed CSSD criteria are so wide and the report so imprecise that reading this document is not unlike trying to carry jelly in a string bag. The dedication to eliminating dualism seems to create only confusion. The description is unscientific and in circular fashion confirms its own assumption that there is no disease state involved. Diagnosing the symptoms listed as pathological would not make sense without this assumption. When a biomedical condition is present the use of such criteria pose a hazard to patients.

The criteria lend themselves to arbitrary and capricious use. There is already a history of these types of criteria being wrongly applied to ME/CFS and these misdiagnoses continue even in the face of the growing evidence of biomedical conditions. ME/CFS patients have already experienced the harm that such descriptions can do.

Who benefits from this proposal? Not the patients.

The CSSD proposal should be withdrawn.

Susanna Agardy

Submission by US patient, Mary Barker

Physicians are exhorted to “first do no harm.” The newly created psychiatric disorder Complex Somatic Symptom Disorder (CSSD), proposed by the American Psychiatric Association for adoption in the DSM-5 manual, has the potential for causing untold harm vastly greater than any supposed therapeutic benefit which may result from its creation. This disorder is characterized by physical complaints of unknown origin lasting more than 6 months, accompanied by, basically, “excessive concern” about those physical problems. The APA proposes that persons suffering from CSSD be given anti-depressant drugs and cognitive behavioral therapy.

There are several illnesses which physicians in general often have great difficulty diagnosing, including, but not limited to, Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME), Fibromyalgia, Gulf War Illness, Celiac disease and Lyme disease, to name a few. It generally takes far longer than six months for persons with these illnesses to receive an accurate diagnosis, and in fact it is not uncommon to remain undiagnosed for years. For example, estimates for the length of time required to diagnose celiac disease range from 5 to 10 years, but in any event far longer than 6 months.

CFS/ME has been recognized as a verifiable illness by the Centers for Disease Control for over twenty years. It is a devastating illness which can be as incapacitating as late-stage AIDS or congestive heart failure. However, the vast majority of doctors in the U.S. know almost nothing about it, and uniformly fail to properly diagnose and treat it. It is not uncommon for CFS/ME patients to languish for years without diagnosis and treatment. Unfortunately, if CSSD is created as a new disorder, it is all too likely that physicians will simply lump CFS/ME patients into that nebulous category, effectively cutting off any hope of proper diagnosis or treatment. This would border on the criminal.

There are dozens of biomarkers for CFS/ME. One of the most striking and most easily verifiable is something called “post-exertional malaise”. CFS/ME patients have told their doctors for decades that one of their chief complaints is exercise intolerance, or bone-crushing fatigue which follows some 24 hours after rather moderate exertion, and which fatigue can last for several days. (It is not malaise.) A few years ago the Pacific Fatigue Lab at the University of the Pacific in Stockton, California, finally listened to CFS/ME patients and decided to take them seriously. The lab designed a simple test protocol to see if post-exertional malaise actually existed.

The lab performed two exercise stress tests on CFS/ME patients, the second one on the day AFTER the first (POST-EXERTION). Their findings were unprecedented. On the first test, the patients did fair to poorly. On the second day, however, POST-exertion, they showed extraordinary levels of incapacitating disability not seen in any other illness following exertion. But how many doctors are aware of this? How many would simply use the convenient CSSD category in which to put a troublesome patient who doesn’t fit the normal parameters of health if they presented with complaints of post-exertional malaise but no one thought to actually look for it? How many try to “treat” CFS/ME using graded exercise in complete ignorance of the reality of post-exertional malaise and its devastating consequences? (Okay, that last bit is off the subject, but all too true anyways) And why did no one think of doing this incredibly simple test 20 years ago? Perhaps because CFS/ME patients just were no taken seriously? This is why the specter of a psychiatric diagnosis being applied to a devastating illness is so chilling. It stifles research and destroys lives.

It is quite evident that simply because a patient’s symptoms are unexplained for six months or more, it does not mean they have a mental disorder. The real problem is not patients who imagine they are ill – it is physicians who are ill-informed and can’t or won’t take the time to find out what they are dealing with. The root problem seems to be a lack of education of doctors and an unwillingness to admit they don’t have all the answers, coupled with “managed care” insurance which discourages spending sufficient time with patients who can’t be properly diagnosed in 5 minutes.

During these lengthy periods where persons remain undiagnosed and in limbo as to the state of their health, it would be abnormal for a patient NOT to be concerned for their health. Not only is their health often worsening without proper treatment, but they face disbelief and often outright disrespect from the medical profession, and from society at large. And in the meanwhile they lose their jobs, families break up, exhaust their savings etc. And yet if they exhibit “disproportionate concern” for their health, they can be classified as having a mental disorder. It’s enough to make your head spin. The Mad Hatter had nothing on this.

Due to the widespread difficulty doctors experience in diagnosing these several illnesses, if CSSD is adopted, it will be inevitable that thousands of persons who are genuinely ill will receive this rather meaningless psychiatric label instead of proper diagnosis and treatment. Their health will not only further deteriorate due to lack of proper treatment, but additionally they will receive drugs which have no proper application to their health and which will cause harm of their own accord.

Additionally, use of this catch-all psychiatric label with its attendant “treatment” will almost certainly further discourage any meaningful research into these illnesses, which research is already severely underfunded. Don’t forget that multiple sclerosis, some forms of epilepsy and Parkinson’s disease (among other diseases) were once characterized as psychiatric problems. Due to the misconstruction of MS as a form of “hysteria”, no extensive research was conducted into MS until relatively recent times. It would appear likely that CSSD is a restatement of the hysteria diagnosis, gussied up in new clothes.

My niece died of ovarian cancer at age 38. She battled it for 5 years. From the time she first saw her doctor with complaints of symptoms characteristic of ovarian cancer to time of diagnosis, 11 months had elapsed, by which time the cancer had spread to surrounding organs. Her doctor came up with one inaccurate diagnosis after another. At one point he told her she had IBS, one of the illnesses mentioned under the CSSD definition. Under the CSSD criteria, she could have been hit with a psychiatric label at the 6 month point, given an anti-depressant and told to go home and forget about it (which in actuality is not all that different from what happened). Why did it take 11 months to get diagnosed? Lack of education for doctors.

Unfortunately, it seems to be the rule rather than the exception that when faced with an illness of unknown etiology, doctors tend to tell patients it’s all in their head, rather than admit they simply don’t know what’s wrong. If they at least would admit their ignorance, the patient might have a chance of finding someone who is knowledgeable and perhaps get some proper help. However, the creation of CSSD will only serve to reinforce this misguided behavior on the part of doctors and cause untold suffering for thousands of patients.

One last question: who will decide which patients fit the CSSD label? The treating physician? Or will psychiatrists put themselves in the position of deciding when an illness is all in one’s head? Do psychiatrists have sufficient clinical training and knowledge of all these illnesses to be able to decipher what is going on, when doctors who treat patients on a daily basis seem to lack these basic skills and knowledge?

I strongly urge you to reject the creation of this new mental “disorder”, and instead focus your resources on helping doctors to better serve their patients through education and fostering a willingness to admit when they don’t have all the answers.

Mary Barker

Submission by UK advocate, Peter Kemp 

DSM5

Complex Somatic Symptom Disorder is unmistakably intended to be a diagnosis of mental illness. Yet it risks enveloping patients with undiagnosed disease and injury, new and emerging human diseases and diseases lacking laboratory established biomarkers.

The proposed revision gives every appearance of having been designed for the specific purpose of including those with Chronic Fatigue Syndrome (CFS) which would clearly lead to mistreatment of patients.

Szasz (1973) writes: “…the physician confronted with a person without demonstrable bodily illness is often baffled: should he consider such a person a ‘patient’? Should he ‘treat’ him, and if so, for what? In the past, the physician tended to believe that such people ought to submit to the ministrations of either medicine or theology. Now he tends to believe that they ought to submit to the ministrations of either medicine or psychiatry.”

And: “What, then, should the physician do when confronted with a ‘patient’ without demonstrable bodily illness? How should he classify and treat him? From the standpoint of a dignified medical ethic – respecting equally the patient’s and the physician’s rights to self-definition and self-determination – the examiner may satisfy his need for the classification by categorizing his professional role or the result of his diagnostic interventions; but he should not impose a categorization on the patient against his will.”

Szasz makes an important point of ethics. If a physician does not know what is ailing a competent sick person with the right of self-determination, assigning a diagnosis is unethical unless the diagnosis is made with the agreement of the patient. This is particularly so because diagnosis is an inextricable aspect of treatment and may be expected to dictate or at least influence the ongoing investigation and treatment of the patient. Assigning a meaningless diagnosis made for the purposes of avoiding the physician’s discomfort at not being able to help or the patient’s disappointment at being left in uncertainty, would be unethical without patient and physician agreement.

Thus categorizing an illness in a way that would predictably be objected to by patients that would be affected by such categorization would also be unethical. The categorization of CFS as a Complex Somatic Symptom Disorder whether by design or accident, would be an insupportable move towards certainty and away from the ethical prosecution of medicine.

REFERENCE

Szasz, Thomas. 1973. The Manufacture of Madness. Paladin. Herts.

Submission by US patient advocate, Mary Schweitzer, PhD.

Submission to the Work Group for Somatic Symptom Disorders

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 and the World Health Organization.

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 it 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 “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 shriveled 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” (Irish immigrants) 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 the vast majority of doctors in the U.S. are ignorant of the large body of literature on the biomedical symptoms and causes of CFS and when they don’t actually harm their patients, they can’t help them. Too often they assume the problem is stress; too often they write a prescription for Prozac and send the patient away.

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 Munchausen’s Syndrome By Proxy (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 antibodies to 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.

I have objectively verifiable immune markers: 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. CMV and HHV-6 are active in my spinal fluid.

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 was below 15, low enough to be considered for permanent disability by SSA.

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.

I can’t see how that would benefit patients – but it certainly would help out insurance companies.

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, Ph.D. 

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