DSM-5 SSD submissions 2011

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Submissions by medical, allied health and other professional stakeholders

Submission by Dr Alan Gurwitt, M.D., President, Massachusetts CFIDS/ME & FM Association, Retired adult and child psychiatrist

RE: DSM5 and Myalgic Encephalopathy (also known as CFS)

There is great apprehension that the proven medical illness, Chronic Fatigue Syndrome (CFS), also better known as Myalgic Encephalopathy or Myalgic Encephalitis (ME) will again be mistakenly thrown into a psychiatric categorization by your revisions of somatic disorders. Great harm has been done for over 25 years by sloppy psychiatric diagnostic procedures and nosology. With an prevalence rate of 0.42 % of adults, this serious medical illness has been too often misdiagnosed. There is no excuse for the ignorance of the diagnostic criteria for ME/CFS (see the Canadian Consensus Criteria from 2003, currently being updated). Please pay attention to this issue.

Alan Gurwitt, M.D., Distinguished Fellow of the APA

Submission by Bill Goodin, M.D.

I am a psychiatrist who practice 32 years, developed CFIDS/FMS in 2004 and ultimately had to close my practice due to profoundly low energy.In 2005, I was fortunate to gain the help of Jacob Teitelbaum in Annapolis,MD which I kept until he left private practice in 2007. On his protocol I regained ~30% of my pre-illness energy level. I have attempted part-time work 8 different times, regressing energy-wise each time over a 3 month period. I now am under the care of Neil Nathan in Santa Rosa, CA, trying “new treatments”. I am using a methylation protocol & an amino acid neurotransmitter precursor protocol. Thyroid supplementation along with hydrocortisone & testosterone have helped stamina some. Basically, I am maintaining the 30-35% of my pre-illness energy level. I tested negative for XMRV Virus (serology & culture) via WPI Lab.

I maintain that an etiology & treatment will be found, but more quickly if CFIDS/FMS is not given a psychiatric diagnostic category. I re-entered my own psychotherapy with an esteemed psychiatrist early on in my illness, hoping I had a “depressive equivalent” or a treatable psychiatric disorder. After 6 months of psychotherapy, he recommended that I pursue rheumatology,  immunology,endocrinology & alternative medicine researchers at various medical schools & centers who were interested in CFIDS & FMS. Psychotherapy & antidepressant medication are usually helpful in these illnesses, but not because of a psychiatric disorder. Antidepressants help modulate pain. Psychotherapy helps in a supportive & insight gaining manner. CBT is helpful, but definitely not the answer to this medical illness.

It is my hope that this entry will be of encouragement to any who suffer CFIDS/ME/FMS.

Bill Goodin, M.D.

Submission by Richard A. Van Konynenburg, Ph.D.

Dear APA:

I have been conducting research and consulting on cases of what has been called myalgic encephalomyelitis/chronic fatigue syndrome for the past 15 years. As a result of this experience, there is no question in my mind that this disorder has an organic, physiological basis and is not a mental illness. While patients suffering from this disorder may indeed experience anxiety and major concern about their illness, and may devote full-time effort to attempting to regain their health, which appear to be the suggested criteria for the proposed “Complex Somatic Symptom Disorder,” it seems to me that these are perfectly normal responses to having an illness that is not well understood by the medical establishment and for which the suggested treatments are only cognitive behavioral therapy and antidepressants, which provide limited help at best. I suggest that a person who had ME/CFS and did not respond in some of these ways would truly be in need of psychiatric help. My concern is that this proposed new category of mental illness could very easily be applied to sufferers of ME/CFS, to their detriment. Once a patient is labeled as having a psychiatric disorder, physicians by and large cease to consider organic, physiological causes for their illness. While this may increase the number of office visits to psychiatrists, it would be a major disservice to these patients. Please reject this vaguely worded diagnosis.

Best regards,

Richard A. Van Konynenburg, Ph.D.

Independent Researcher and Consultant on Cases of
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Submission by Therese Duncan, J.D., CADCII, ICADC (US)

Dear Mmes. and Messrs.:

The Complex Somatic Symptom Disorder (CSSD) proposed for the DSM-V presumes to be a diagnosis when it is a dragnet for undiagnosed symptoms. As such, it would force clinicians to practice bad magic, for antidepressants and CBT used as treatment protocols for undiagnosed physical ailments would create an illusion of proper treatment and would add both injury and insult to illness.

Miriam-Webster defines science as follows: The intellectual and practical activity encompassing the systematic study of the structure and behavior of the physical and natural world through observation and experiment.

Best practices in behavioral science are derived from evidence-based treatment protocols which are designed using the results of scientific studies. If the studies have not been conducted, then the treatment protocols cannot be established, and the appropriate response of any ethical clinician in the case where symptoms cannot be properly catalogued based on science, is “I don’t know.”

As the Barker paper notes, the customary length of time for diagnosis by informed physicians of many illnesses that have verifiable symptoms exceeds six months. Uninformed physicians present a separate additional problem.

I recommend, first, that the Board abandon the CSSD concept due to the obvious inherent harm. Instead, a category of patient whose diagnosis is unknown, and not an unscientific “diagnosis,” may be created. The category will be useful for the ongoing scientific study of patients with undiagnosed ailments, in the hopes of discovering and rendering proper diagnoses, referral and treatment.

I recommend, second, that the Board create an emergent priority as part of the psychiatry paradigm. This priority would be the education of all physicians on the known data for physiological illness which in error is frequently misdiagnosed as psychosomatic. As the Barker paper states, “There are dozens of biomarkers for CFS/ME.” And yet how many CFS/ME patients are referred to psychiatrists because these biomarkers are widely unknown?

The CSSD “diagnosis” may look like a gift to baffled physicians from one narrow angle of tidiness. But it acts as a Trojan Horse for the sufferers of undiagnosed illness and must be scrapped. Ethics demands nothing short of science.

Thank you for the opportunity to be heard on this important matter.

Sincerely,

Therese Duncan, J.D., CADCII, ICADC

Submission by Angela Kennedy, sociology lecturer (UK)

I am writing to address the potential revision of the American Psychiatric Association’s (APA)’s Diagnostic and Statistical Manual for Mental Disorders (DSM-5), specifically related to the diagnoses that denote psychogenic explanations for somatic (physical) illnesses of uncertain aetiology, and their proposed reshuffling.

I write as a sociology lecturer and researcher, who as part of her research has been critically evaluating psychogenic explanations somatic (physical) illnesses of uncertain aetiology, and as a parent and carer of a woman who suffers from an organic illness that still is subject to uncertainties in knowledge of aetiology.

Psychiatry, and medicine generally, has historically been dogged by the fundamental problem (indeed, fallacy) of inserting a ‘god of the gaps’ theory into areas where medical knowledge about somatic processes is limited. This sadly has not changed just because medical knowledge has increased, especially as, any reasonable person would acknowledge, medical knowledge is not yet complete, and may never be: therefore gaps in knowledge remain, and unfortunately these are often filled, discursively, with psychogenic explanations.

In particular, the new categories of Complex Somatic Symptom Disorder (CSSD) and Simple Somatic Symptom Disorder (SSSD), and the diagnoses it may replace, result from a fallacy of assuming that, just because presenting somatic illnesses are not easily explained by immediately obvious organic processes, they are therefore ‘medically unexplained‘, and, by default, ‘psychogenic’ in nature. It denotes a fallacious belief in the doctor that an illness is not organic, but resulting from metaphysical processes based on abstract constructs (beliefs, lies, delusions). These metaphysical processes are conflated with confused beliefs that the patient is doing one or more of the following: malingering; imagining impairment that is not present; hypochondria (having abnormal or inappropriate chronic anxiety about one’s health); or an assumption of “mind over body”processes, denoting a belief that behavioural problems, negative attitudes or emotional tension cause the body to develop impairments, accompanied by a belief that one can think oneself better, actually reduce or eliminate physiological impairment, by the positive power of the mind.

Therefore, far from overcoming the problems of the concept and term of ‘medically unexplained’ illness, which I understand has been claimed as an advantage of the new diagnostic categories in the various editorials in psychological, psychiatric and medical journals, these proposed diagnoses will merely reify and re-jiggle the fallacious notions upon which they are based.

My concerns are that, as a result, these diagnostic categories will lead to greater misdiagnosis (even than is already unfortunately occurring) of organic illness as psychogenic, leading to psychogenic dismissal of illness symptoms and signs, both in patients given diagnoses denoting illnesses of uncertain aetiology (such as, for example, but not limited to, Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, or Fibromyalgia), and in patients with established ‘uncontested’ illnesses, such as cancer, AIDS and diabetes. They will lead to further psychogenic dismissal of somatic signs and symptoms, and an epistemic ‘laziness’ that will prevent doctors from working to elucidate and treat organic dysfunction that may be extremely disabling to a patient, placing that patient at risk of further harm or even death. They will also lead to increased stigmatising and other adverse effects of being assigned a psychiatric diagnosis, in this case based on a fallacy of reasoning. Viewing a patient through the prism of a belief they are psychogenically, not organically ill, leads to doctors and other mistaking a patient’s distress and other responses to the impact of organic illness (especially if difficult to diagnose) as causative of that illness, and indeed, all future illnesses that patient endures.

There is copious evidence that the whole concept of ‘somatoform disorders’ and their synonyms, signifying psychogenic explanations for illnesses of uncertain aetiology, have already led to these problems. The categories of CSSD and SSSD therefore will merely reify problematic and often dangerous medical practices that already exist.

Both the new proposals of CSSD and SSSD, and those diagnostic categories that they are proposed to replace, signify the problem as described by Thomas Szasz (1997:23)

“In the days of the Malleus, if the physician could find no evidence of natural illness, he was expected to find evidence of witchcraft: today, if he cannot diagnose organic illness, he is expected to diagnose mental illness.”

They may indeed fill “the discursive space left inadequately explained by medical accounts” (Newton, 1999: 244). But their usefulness in the filling of ‘discursive space’ of medicine, they are based on fallacious reasoning and cause iatrogenic effects.

While it is to be hoped that, in time, advances in psychiatric and medical reasoning will eventually render the current DSM categories, associated with default psychogenic explanations for illnesses of uncertain aetiology, defunct, the insertion of CSSD and SSSD into the new DSM is extremely worrying because those who propose these new diagnoses clearly believe their propositions already denote advances in psychiatric thinking, when they do not. It therefore means erroneous confidence in their use may well be high. Their insertion is also likely to facilitate an even greater risk of irrational ‘black-boxing’ of alleged but un-elucidated and therefore unsafely assumed ‘psychogenic’ processes, so that doctors would not be required to robustly defend the logic or rationality of their diagnosis, even to themselves, increasing the risk of misdiagnosis and its adverse effects.

These problems also apply to the proposal to re-brand “Conversion Disorder” as “Functional Neurological Disorder”. Here a field where knowledge remains relatively limited (neurology) is particularly at risk of psychogenic explanations by default in the wake of uncertainty in medical knowledge about neurological signs and symptoms. The use of the term ‘functional’ here- where one of the definitions of the term is “not due to discernible organic disease” according to the Oxford English Dictionary- means the bedrock of this diagnosis is uncertainty of aetiology leading to a fallacious default psychogenic diagnosis. Medical use of the term in this way is demonstrated by Stone et al (2005).

Please do not hesitate to contact me if you have any further questions about or need for clarification of the points I have made here.

Angela Kennedy

REFERENCES

Newton, T. ‘Stress Discourse and Individualization” in Feltham (1999) 241-251.

Stone, J. et al ‘Functional Symptoms in Neurology: Diagnosis and Management’ Advances in Clinical Neuroscience and Rehabilitation vol. 4 no. 6 (2005) pp 8-11.

Szasz, T. The Manufacture of Madness: a Comparative Study of the Inquisition and the Mental Health Movement (1997) Syracuse University Press, New York.

Submission by Dr John L Whiting, Specialist Physician in Internal Medicine and Infectious Diseases, Brisbane, Australia

CSSD – the creation of a new weapon, a new law!

Like the invention of the machine gun and its use in WWI – so many wasted peoples’ lives. The ones who pulled the trigger never met eye to eye with their so many victims. So easy for the trigger finger and also, so much unimaginable devastation. But what a wonder weapon of war: I believe that CSSD will be much the same as the machine gun to those who have created it. They will never be able to imagine the suffering that their pet ideology will have created, if they do not correct what they are making.

We can think of the definition of CSSD in other terms too: what of the rules that allowed doctors selections at ‘train terminals’ in various locations in Europe during WWII? Who saw what was really coming when each new law was ‘allowed’ in Germany prior to the war? The outcome was expedient efficiency, but who foresaw that? To add to each deceit prior to the war, we also saw these train station selections were made to appear so innocent to each group of newcomers, but in truth, they were not. CSSD is like a selection system: so innocent looking but in reality, so potentially dangerous!

The problem with the definition of CSSD is its ‘apparent’ vagueness. It is a weapon but not everyone sees it as such. We don’t like giving guns to babies, but I fear that those who know little about CFS/ME are like these babies. We do not know exactly who these childlike triggermen will be when they have their new toy to play with but we can imagine the consequences of their actions; and we can see the ultimate outcomes of the ‘indiscriminate’ selections that this CSSD ‘definition’ permits.

If we knew with certainty that the definition would be used intelligently, by the best, by those who genuinely cared for patients, we might feel more comfortable. And if we knew that if, by chance, an alternative diagnosis to CSSD was found, the diagnosis of CSSD could be removed without long term stigmatization, then perhaps we might feel even a bit more comfortable about CFFD.

But I fear that this will not be the case. When should there be a need to make a diagnosis of CSSD? This is the big question. We know that Holocaust victims somatise more often than say well balanced controls – but so what? Should they be outcasted once again? The reason for this new definition is not to re-stigmatise these unfortunate victims of the past. In today’s world, who will profit the most from this new weapon of mass destruction? Medical insurance companies perhaps? Surely, their hit men will enjoy their new found powers of selection. CBT is not the true rationale for diagnosing CSSD. CBT is simply a front. The real purpose for creating CSSD is for the ‘liquidation’ of CFS patients and similar undesirables. How can we allow such power to pass into the hands of those who are least likely to use it appropriately?

CFS/ME is a medical condition. Some patients with CFS/ME somatise, but so do patients distressed by many other medical conditions. How can this committee overgeneralise by stating that if somatisation is present amongst CFS/ME patients, then the condition as a whole is one of somatisation as well? Moreover, whilst psychiatry is an essential and noble profession, psychiatrists are usually the least qualified to make judgements on matters that are purely medical.

But who is the final arbiter? Who is the final authority to whom the DSM-5 committee for somatoform disorders answerable? If they are only answerable to themselves, heaven forbid!

Dr John L Whiting
Specialist Physician in Internal Medicine and Infectious Diseases
Brisbane, Australia

For submissions by patients and advocates go to Page 3

For submissions by professional bodies go to Page 4

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