DSM-5 SSD submissions 2012
Submissions by Patient and advocates
Submission from US patient 2
To the members of the DSM-5 Somatic Symptom Disorders Work Group:
As an American citizen and a person who has suffered from neuro-immune disease for 18 years, I’m writing to express my concern about your proposals for a new category, Somatic Symptom Disorder (SSD), in the next version of the Diagnostic and Statistical Manual of Mental Disorders (DSM).
Like any case definition of disease, a case definition for mental illness should be both sensitive and specific—i.e., it should correctly identify all the people who have the illness, while excluding those who don’t have it.
The SSD definition, as written, has an unacceptably low specificity by potentially folding in as many as one million Americans with the neuro-immune diseases myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Though thousands of studies support a biomedical basis for ME and CFS, the overly broad nature of SSD may lead clinicians to incorrectly apply it to people with ME and CFS. This primary or secondary diagnosis of mental illness may adversely affect the ability of PwME (People with ME) to receive appropriate medical care, disability benefits, and necessary social services such as subsidized housing and at-home health aides.
In particular, I am troubled by the SSD definition’s requirement that symptoms last at least six months, a phrasing that appears to be taken directly from the Centers for Disease Control 1994 definition of chronic fatigue syndrome. Is this overlap designed to facilitate re-diagnosing PwME with a psychiatric disorder? Furthermore, I am disturbed by the subjective nature of another criterion—that thoughts, feelings and behaviors about poor health be “excessive”. Who decides whether a patient’s reaction to illness and severe disability is “excessive”? Will the judgment be based upon objective blood tests, or will the opinion of a psychiatrist suffice?
While PwME are especially vulnerable to misdiagnosis with SSD, patients with other medical conditions—or even one symptom—may have SSD added on to their extant diagnoses. Indeed, your criteria are so loose that any person who enters a doctor’s office with any complaint is at risk of being labelled mentally ill.
I have followed the evolution of the SSD construct since 2010 through multiple drafts, and I have noticed that the definition has gotten broader and broader. Now, only one item is required to fulfill the “B” criterion—a decrease from previous drafts. The DSM-5 has come under fire from psychiatrists, psychologists and laypeople alike for being overly subjective and pathologizing normal behavior. While actualizing SSD will certainly bring more business and income to psychiatrists, it will only add to the public’s sense that DSM-5 has often dispensed with basic scientific principles.
Given the multiple problems with your Somatic Symptom Disorder definition, and the great potential for abusing it, I strongly urge you to eliminate this category from the Diagnostic and Statistical Manual-5. Thank you.
Sincerely,
United States ME Patient
Submission from UK citizen 1
Re: Somatic Symptom Disorder
Time is all that people have, and to waste someone’s time is to waste some of that person’s life.
People might expect that a group involved with the DSM would carefully avoid wasting the time of their fellow humans.
Having spent a great deal of my time reading the confused background and turgid arguments to this so-called diagnosis, I have wasted much time.
However, I have also been impelled to read a great deal of high quality work, and I am grateful to the working group for providing the stimulus.
I shall avoid a blow by blow account of what is so misleading and disingenuous about your arguments, as I understand that many other people have taken the time and trouble to do so.
Your so-called diagnosis appears to have been manufactured to “officially” capture ME and/or CFS as a mental disorder.
To some extent, that explains the flimsy arguments, the total lack of substance, the lack of rigour, the lack of any relevant expertise, and the lack of any convincing evidence.
In 2002, for the benefit of the insurance company UnumProvident, one of your members wrote that: “both State and private insurers pay people to remain ill“, in an article where he predicts a new so-called functional syndrome caused by “fear of terrorism” (1).
In 2011, that same member wrote that: “social and insurance policies may also exacerbate the problem. For example, the need to have a ‘physical’ cause for symptoms is often reinforced by the requirement of workplace and insurance companies which grant greater benefits for symptoms if physical causes can be identified” (2).
In 2007 Jonathan Rutherford explained some of the “logic” involved: “Provident introduced an aggressive system of ‘claims management’. Specific illnesses were targeted in order to discredit the legitimacy of claims. In the UK, two Woodstock participants, Professor Simon Wessely and Professor Michael Sharpe were working on reclassifying ME/CFS as a psychiatric disorder. A change in classification would trigger the twenty four month pay out limit on psychological claims and would save the industry millions of dollars. In 1997 Provident acquired Paul Revere, and then in 1999 merged with Unum under the name UnumProvident” (3).
One can well understand why Kroenke’s 2006 suggestion of a “physical symptom disorder” might not have gone down too well (4).
Of course this manufactured diagnosis should be removed from DSM.
That much is common sense.
However, if common sense is not to prevail, I would recommend that you re-name your disorder the “psychosomatic symptom disorder”, in order to avoid any future charges of dishonesty.
(1) UnumProvident: Trends in Health and Disability 2002 (pdf: LTD 507/5/2002).
(2) Barriers to improving treatment, Henningsen, Fazekas and Michael Sharpe in Medically Unexplained Symptoms, Somatisation and Bodily Distress, Developing Better Clinical Services, Edited by Creed, Henningsen & Fink, Cambridge University Press 2011
(3) New Labour and the end of welfare by Jonathan Rutherford 2007
(4) Physical symptom disorder: A simpler diagnostic category for somatization-spectrum conditions Kurt Kroenke Division of General Internal Medicine and Geriatrics, Indiana University School of Medicine, IN, USA Journal of Psychosomatic Research Volume 60, Issue 4 , Pages 335-339, April 2006
Additional material provided by respondent for Dx Revision Watch:
http://web.archive.org/web/20030126154618/http://www.unum.co.uk/downloads/CMOReport.PDF
Functional symptoms are not going to go away. They will be driven by factors such as work stress and disaffection, information about new illness from the media and the Internet and the persisting stigma of psychological problems. However, the form that they take is likely to continue to change. Although there are a limited number of symptoms that people can have, there are an almost infinite range of factors that these symptom can be attributed to. Such illness attributions tend to be to external factors and often those, which individuals feel fearful of, wronged by and which are outside their control. Possible new functional syndromes are likely to include those associated with pollution (chemical, biological and radiological) of the work place and work stress, and perhaps now in relation to “terrorism” and fear of terrorism.
A shift towards a more consumer-based approach to health is also likely to increase the prominence if not the prevalence of such syndromes as the authority of medicine to define what is a legitimate illness is diminished. Indeed, increasingly consumer oriented and privatised doctors will collude with the patient’s views that they have a disabling and permanent disease. In other words, it may be difficult for those who wish to champion rehabilitation and return to work to “hold the line” without seeming to be “anti-patient”.
Submission by Kati Debelic, Canadian patient
To whom it may concern.
I am a patient with Myalgic Encephalomyelitis and I am very concerned about your incoming DSM5 Revision in the light of this illness which has not received proper research funding throughout the years. In Canada, patients with ME have been funded at a rate of 6 cents per patients per year for the last 10 years.
The lack of research or proper research leads to the false conclusion that ME must be a psychiatric disorder, for instance being too concerned with body symptoms, or complex somatic disorder. Of course you can appropriately so be very concerned with body symptoms, like for a patient suffering a heart attack- this would be judged appropriate by most doctors. Patients with cancer would be also appropriately concerned with body symptoms.
When we come to ME, certain psychiatrists notably the ones in the UK refuse to believe that these symptoms are real. Biomarkers are just emerging now in this field, and it has been proved that patients with ME have viral reactivation, (just like patients with RA, MS and others) much decreased natural killer cell functions, abnormal aerobic metabolism proven by Dr Snell and Staci Stevens, and Light have shown that there are genes activation after exercise which is not happening with patients with MS and with depressed patients.
Moreover, a recent clinical trial from Norway has found that 2 ME patients out of 3 significantly improved after infusions of Rituximab compared to 13% of placebo control. This research shows that this is not a psychiatric illness, but possibly auto-immune.
More research is needed in the biomedical field and it is hope that with emerging biotechnologies like deep sequencing, causality of our illness can be found and appropriate treatments can be trialed and offered to patients.
It is extremely premature and harmful to label patients who have a real albeit neglected illness with a psychiatric diagnosis, and I urge you to reconsider these labels very, very carefully. There is no scientific methods in establishing these diagnosis, but in my opinion, these are being rehashed to serve the best interests of psychiatrists, disability and insurance companies and government entities. Such diagnosis should be researched tried and peer reviewed before being published.
I am urging you to change this course of action and delete “complex somatic disorder” from DSM-5
Kati Debelic, RN Canada and patient with ME from 2008, viral onset.
References:
Moderate Exercise Increases Expression for Sensory, Adrenergic, and Immune Genes in Chronic Fatigue Syndrome Patients But Not in Normal Subjects
Alan R. Light, Andrea T. White, Ronald W. Hughen, Kathleen C. LightThe journal of pain : official journal of the American Pain Society 1 October 2009 (volume 10 issue 10 Pages 1099-1112 DOI: 10.1016/j.jpain.2009.06.003)
Exercise Capacity and Immune Function in Male and Female Patients with Chronic Fatigue Syndrome (CFS)
CHRISTOPHER R. SNELL1, J. MARK VANNESS1, DAVID R. STRAYER2 and STACI R. STEVENS3
In Vivo March-April 2005 vol. 19 no. 2 387-390Myalgic encephalomyelitis: International Consensus Criteria
B. M. Carruthers1, M. I. van de Sande2, K. L. De Meirleir3, N. G. Klimas4, G. Broderick5, T. Mitchell6, D. Staines7,8, A. C. P. Powles9, N. Speight10, R. Vallings11, L. Bateman12,13, B. Baumgarten-Austrheim14, D. S. Bell15, N. Carlo-Stella16, J. Chia17,18, A. Darragh19, D. Jo20, D. Lewis21, A. R. Light22, S. Marshall-Gradisbik8, I. Mena23, J. A. Mikovits24, K. Miwa25, M. Murovska26, M. L. Pall27, S. Stevens28 http://onlinelibrary.wiley.com/doi/10.1111/jim.2011.270.issue-4/issuetoc
Submission from Suzy Chapman, UK advocate
For the attention of the Somatic Symptom Disorders Work Group: Chair Joel E. Dimsdale, M.D.Submitted by Suzy Chapman, advocate and parent/carer of young adult with chronic illness.Website owner of https://dxrevisionwatch.wordpress.com formerly http://dsm5watch.wordpress.comFull text in PDF:Chapman DSM-5 submission 2012
Submission from Judith M.L. Day, patient and advocate (1)
Just think about “Somatic Symptom Disorder” for a moment. You have physical symptoms that are lasting and distressing. You go to one doctor after another and have one test after another, which usually takes months, which is also lasting and distressing that show nothing. When the medical doctors can’t diagnose what is wrong, as they really don’t know about those medically unexplained illnesses like me/fm/mcs, even though, for many years, scientific research points to a true physiological illness, they write you off….
You are then told “you must be depressed,” even though you emphatically deny you are, and you are sent to the ultimate specialist who does no medical testing, who has no scientific evidence, and who has no personal contact with you before this visit, to know for sure if you are distressed and depressed because you are so physically ill, or if you are mentally ill because you are so distressed and depressed because of your undiagnosed illness.
Submission from Judith M.L. Day, patient and advocate (2)
May 29, 2012
DSM-5 Task Force
American Psychiatric Association
1000 Wilson Boulevard, Suite 1825
Arlington, VA 22209 U.S.A.Members of the DSM-5 Task Force:
Re: Proposed Changes to the 5th revision of the
Diagnostic and Statistical Manual of Mental Disorders (DSM)
As a person living with cfs.me/fm/mcs, I would like once more to personally submit my recommendations for the revisions that will be documented in DSM 5. I have studied DSM 4r and used the criteria in the courtroom when I tried to sue psychiatrists for not following that criterion when making their psychiatric diagnosis of me in 1995.
Please don’t add “somatoform disorder” when a patient’s symptoms are medically unexplained, just because a patient continues to complain and needs to be investigated. This is not a mental disorder! This is doing many patients an injustice. I know. I have listened to hundreds or them over the past fourteen years, since I have become a patient advocate.
At the bottom of most pages of the DSM 1VR, written under “Psychosis, etc,” in bold print is: if there is an underlying medical condition an episode of psychosis should not count in a diagnosis of bipolar disorder or schizophrenia. (I had a reaction to pseudoephedrine and prozac, which I should never have been prescribed as I was tired, not depressed, while physically ill with sinusitis and bronchitis and was misdiagnosed with the second most serious mental illness “bipolar disorder,” and kept in a psychiatric trap for over two years. Imagine being told by a psychiatrist “Sometimes you are depressed and don’t know you are.” I thought he knew what he was talking about and I took Prozac 10mg. I paid dearly for that mistake.
Because of my undiagnosed physiological condition of me.cfs/fm/mci, by the time Lithium and Epival were discontinued I had hypothyroidism, abnormal eegs (temporal lobe epilepsy) abnormal ekgs (ST abnormality), moderate to severe memory impairment, muscle weakness (dragging my left leg, morbidly fatigued, inability to breathe adequately while lying flat), muscle stiffness and pain to the point it took me over five years to recover my core body strength and health to pre 1995 days, or before this incorrect psychiatric diagnosis and maltreatment.
Due to these medically unexplained conditions that are becoming more common, psychiatrists have to be very careful with their psychiatric diagnosis, because after one is labeled by psychiatry, one loses everything and your life changes forever. I know mine did.
Having being diagnosed with a psychiatric illness and losing my credibility made getting appropriate medical care more difficult and resulted in harm that kept me from being adequately treated for years. The psychotropic medication exacerbated my symptoms, turned me into a zombie, and could have killed me, as I was so sensitive to Lithium and nobody paid attention to my symptoms. I was neurotoxic with normal blood levels!
Now Psychiatrists are even discussing among each other who is really responsible for monitoring physiological side effects of drugs that are prescribed, as people are on so many. We all know they certainly react with one another and may cause psychosis, due to neurotoxicity. That does not mean a person is suffering from a mental illness that needs a label and drug therapy for the rest of one’s days.
ME.CFS/FM/MCS are real physical illnesses and because they are not fully understood by the medical community, they should never be considered hypochondrias or somatoform, whether simple or complex, or any other mental illness to be added to DSM V. Individual drug sensitivity has to be taken very seriously as well. .
There is enough scientific evidence, through research now on those invisible illnesses like me.cfs/fm/mcs to properly diagnose people. If physicians would only open their minds, they would not ever have to refer those patients to psychiatry to be investigated for a diagnosis of a subjective mental illness, just because medicine cannot explain their symptoms and adverse drug reactions. This activity is cruel and their treatment of psychotropic drug therapy is making those patients worse, not better, and shortening their lives.
Finally, I have my book published called Judging Judi. I recommend this book for all medical and nursing personnel as it tells how not to treat the “supposed” mentally ill as more harm is done than good when psychotropic drugs are used and these physically ill patients are not monitored properly for neurotoxic side effects.
Sincerely,
Judith M.L. Day,
Director Atlantic Provinces
National ME/FM Network
Submission from Joss, UK patient
I am writing to voice my concerns concerning the proposed category of Somatic Symptom Disorder.
Theoreticians of illness classification such as yourselves should be aware of the actual harm that could be caused to real people should this category be included in the DSM.
I would like to focus your minds with a real world example of how such a label might cause actual harm:
In 1998 I hurt my back. A scan showed a herniated disc but no further action was considered necessary. For the next three years my life was devastated by pain, I had bedsores and was pissing myself in bed from being unable to move. I believe that this was not taken seriously because I already had a pre-existing diagnosis of ME/CFS. The disbelief around my ME/CFS had already caused me problems obtaining the necessary help from medical services.
I believe that doctors thought I was ‘catastrophising’ and that had the SSD label been available to them they would have been able to categorise me as having:
‘Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns’
and, further, apply the three following highly subjective statements to me:
(1) Disproportionate and persistent thoughts about the seriousness of one’s symptoms.
(2) Persistently high level of anxiety about health or symptoms
(3) Excessive time and energy devoted to these symptoms or health concerns
I had CBT via a pain clinic but things got progressively worse. The CBT was of no help because it can not mend discs. I was, I admit, by this time feeling a tad suicidal because nobody would listen to me or believe that things were as bad as they were.
In 2001 I called an ambulance and went to the emergency department. The doctor was fine until he consulted my notes and saw I had an ME/CFS diagnosis. I was given morphine and they wanted to send me home.
It was only by refusing to leave that I gained admission to the hospital where a further scan was undertaken and it was found that a piece of disc had got in to my spinal canal and was pressing on my spinal cord. The next day I was in surgery and told that I would have been paralysed for life without it.
I would like you to reflect on how much worse the situation might have been if I had also been labelled as having SSD and on what happens when the SSD label is wrongly applied.
If someone is very ill and in pain is it not normal to feel distressed? How much distress is too much? Who decides what the right amount of distress for any given situation is?
What does ‘disproportionate’ mean in such a situation?
Is feeling anxious about such things not simply a normal and sane reaction to such circumstances?
And as for ‘excessive time and energy’ – well being bedridden and unable to move for whatever reason makes it a little hard to think of much else for much of the time.
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, misuse and even abuse.
It could certainly lead to possible missed diagnosis should a patient be placed in the SSD group and then continually disbelieved because of the label and left with no hope of getting to the bottom of the problem. To leave people without hope can only be called cruel
I am concerned that many illnesses such as ME/CFS, fibromyalgia and pain syndromes, and back problems which are often hard to diagnose and treat and can be a considerable burden to those who have to live with them will get drawn into the SSD basket and that, once there, patients will lose all hope of receiving any appropriate bio-medical treatment.
I am sure you are aware that medicine does move forward and that many illnesses once defined as psychiatric or psychological or simply beyond the reach of scientific clarity 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.
Submission from Chris Douglas, UK patient
J 00 Somatic Symptom Disorder
In response to: J 00 Somatic Symptom Disorder
I write as a science post-grad and ex-statistician now unable to work due to chronic ill health. In June 2011, I registered my concerns about DSM-5 proposals to redefine ‘Somatoform Disorders’ (SD) as ‘Somatic Symptom Disorder’ (SSD) and ‘Complex Somatic Symptom Disorder’ (CSSD).
The main points of concern were, firstly, that the new definitions 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.
Secondly, the introduction of these classifications 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.
Twelve months later, the revised 2012 version of DSM-5 now proposes a single ‘Somatic Symptom Disorder’ (SSD) classification but has not addressed either of the two concerns above. In fact, the situation has been made worse: instead of two ‘B type’ symptoms being required to justify the SSD diagnosis, now only one is needed. This means that the threshold for SSD diagnosis has been lowered and so more, not less, people are at risk of being included in an increasingly heterogeneous and non-specific grouping.
To this point, it is worth noting that 15% of DSM-5’s own cancer study group met the criteria for SSD with one ‘B type’ symptom only, and a staggering 26% of the functional somatic group justified the SSD diagnosis on the same basis.
The frightening implication of these results is that a significant number of patients across a wide variety of purely physical illnesses who currently have no mental health record could find themselves with a psychiatric label as soon as the final version of DSM-5 is published.
The APA can not know the impact that this will have on the health and well-being of such (a large number of) patients and, in the absence of hard, robust evidence that proves no harm will be done, it would be unethical and unscientific to allow the criteria for SSD to be used in common practice.
Until evidence is available that proves conclusively that the SSD criteria can be applied objectively and without harm to patients, I would urge the APA to remove this classification altogether from DSM-5.
Submission from US Patient 1, to J 00 SSD and J 02 Conversion Disorder (FNSD)
To: DSM-5 Task Force, Somatic Symptom Disorders Work Group
From: _______
Re: Response on the Proposals for Somatic Symptom Disorder and Conversion Disorder
Date: June 12, 2012The DSM-5 Task Force has thus far failed to address the conceptual and practical problems inherent in DSM-IV somatoform disease constructs. Specifically, its proposals for Somatic Symptom Disorder and Conversion Disorder are actually more flawed than their equivalents in DSM-IV. The criteria for these two diagnoses rely excessively upon purely subjective judgments by clinicians and on the extent of a clinician’s awareness of known diseases, and lack the specificity required of valid diagnostic constructs.
To understand just how strongly subjectivity of clinical interpretation can impact diagnostic outcome when using somatoform disorder criteria on a disease with unknown etiology, it is instructive to consider in some detail Johnson et al’s “Assessing Somatization Disorder in Chronic Fatigue Syndrome”1, a study on the reliability of DSM-III-R somatization disorder (SD) criteria and related instruments when applied to patients with chronic fatigue syndrome (CFS). As the DSM-III-R SD diagnostic construct was less subjective and had greater specificity in terms of symptom presentation than the proposed SSD criteria, a careful examination of its flaws, as demonstrated by this study, offers a sobering perspective on real world application of SSD criteria.
CFS is a somatic disease of unestablished etiology; the United States Centers for Disease Control has stated that “Research shows that CFS is not a form of psychiatric illness” and that an essential criterion for its diagnosis is “severe chronic fatigue of 6 months or longer that is not explained by any medical or psychiatric diagnosis”. Nevertheless, in spite of such evidence, an opinion persists in the medical community that CFS is in some way a psychosomatic illness, an opinion which can easily influence clinicians in their diagnoses of patients who satisfy CFS criteria. Thus, as Johnson et al noted: “Whether or not symptoms of CFS are considered medically caused will strongly affect the incidence of SD within the CFS population…If the examiner recognizes that the patient’s CFS symptoms indicate a physical illness, the diagnosis of SD may not be made. Conversely, if the examiner does not consider CFS a medical illness, the patient’s symptom endorsement may lead to the diagnosis of SD.”
To begin with, Johnson et al discussed the problems with the DSM-III-R criteria for somatization disorder:
“According to DSM-III-R .. the diagnosis of somatization disorder (SD) requires a person to present with at least 13 symptoms for which no significant organic pathology can be found. The symptoms must have caused the person to take medication, to see a physician, or to have altered her/his lifestyle. The disorder begins before the age of 30 and has a chronic but fluctuating course. However, the diagnosis of SD is extremely problematic in terms of its validity because it involves a series of judgments that can be arbitrary and subjective […] Specifically, the interviewer must decide if the symptom reported is attributable to an identifiable medical illness. Although such judgments are extremely difficult to make uniformly, the influence of bias introduced by the interviewer’s orientation on the prevalence of SD has not been adequately addressed.”
They noted the high variation between the estimates of SD prevalence in CFS patient cohorts reported by previous studies and concluded that it was “in itself indicative of the problem in defining SD”. They further pointed out that “The difficulty in distinguishing among somatic symptoms that are psychiatric vs. organic in origin can result in overdiagnosis of SD in medical illness, particularly chronic illness”, as they had observed in several studies by other authors on somatization in CFS…
Read full text in PDF:
DSM-5 submission
Submission from UK patient and 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 SSD 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 SSD 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 perspective. 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 SSD (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 body¹ . 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 serious²; that it impacts profoundly on both their bodies and their cognitive abilities; that it may well shorten their lives considerably³; 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 high4; doctors are not infallible, and life is precious.
To the many doctors unfamiliar with, and untrained in, the biomedical aspects of ME – persuaded in part that this serious multisystem illness is slight by its unhelpful single-symptom synonym (‘chronic fatigue syndrome’), 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 inadvertently 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 SSD 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)
Also, Myalgic Encephalomyelitis: International Consensus Criteria, Carruthers et al (2011) http://www.ncbi.nlm.nih.gov/pubmed/21777306
[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 from Australian patient, Susanna Agardy
Submission to SSD Workgroup Concerning SSD Criteria
In the diagnosis of somatic disorder the emphasis is placed on perceived cognitive and emotional responses of patients to their physical symptoms and/or failure to be diagnosed. The physical symptoms are considered to be negligible. SSD can be a dangerously inappropriate diagnosis for patients with ME and other cases of missed diagnosis or undiagnosed medical conditions. In these cases patients are often diagnosed with a psychiatric disorder because they have a physical disorder – one for which there is no generally accepted diagnostic test.
The patient is actually displaying a well-adapted response in persistently seeking help for his/her symptoms. However, if the patient goes to the doctor too many times they can become inadvertently ensnared in psychiatry, depending on the doctor’s bias. As their physical problems are rationalized away and inappropriate treatments begin, the patient’s nightmare trip is on its way, as has happened for so many ME patients.
Dr Dimsdale’s statement that ‘…chronic fatigue is really almost a poster child for medically unexplained symptoms…’ is not reassuring for ME patients, since ME is mostly treated as synomymous with ‘chronic fatigue’ and lends itself too well to an SSD diagnosis.
What safeguards would be put in place with the proposed SSD criteria to ensure that significant physical disease does not remain undiagnosed? Past experience shows that once an SSD diagnosis is determined the door bangs behind the patient and there is little room for consideration of physical disease and a proper diagnosis. The patients’ credibility is also undermined and any new symptoms they develop can be easily folded into the supposed existing SSD.
Sophia Mirza, whose ME was treated as a psychosomatic condition, died as a result of her ME. Her post-mortem showed severe neurological disease. http://www.sophiaandme.org.uk/sophia%20&%20m.e.%20her%20story.htm . Other patients currently alive are showing very similar symptoms to Sophia’s. It is extraordinary that her results, the results from other patients’ post-mortems and numerous research studies have failed to prompt widespread questioning of the psychiatric treatment of this condition. This appears to suggest that psychiatry is more occupied with keeping the condition within its domain than getting an accurate diagnosis.
How does a practitioner know whether a patient’s thoughts are ‘disproportionate and persistent’ in relation to the seriousness of their symptoms if they have no knowledge about the condition which triggers these thoughts?
How can we be reassured that SSD is not ‘a disguise for ignorance and a fertile source of clinical error’ as Eliot Slater claimed about conversion disorders, etc? (Quoted in ‘Hysteria, medicine, psychiatry and misdiagnosis’ by Richard Webster http://www.richardwebster.net/000HysteriaOpening.pdf ).
Sophia was brutally removed from her home to be sectioned while being bedridden with ME. Carol Willesee, an Australian actor who suffered severe neurological symptoms and was variously diagnosed with conversion disorder and depression, turned out to have CJD. She died soon after her diagnosis. (‘All about my mother’
http://www.cjdsupport.org.au/docs/carol_willesee_story.pdf ).
A zealous application of psychiatry only added to the misery of these women. Their stories and other examples in Richard Webster’s article demonstrate that almost any condition can be diagnosed as psychosomatic.
In view of all the disastrous misdiagnoses of somatic psychiatry doctors and psychiatrists surely need to ask themselves why psychosomatic disorder is so easily made a default diagnosis.
The threat of a psychiatric diagnosis also puts less severely affected patients in a Catch 22 situation. (However, they are mostly unaware of this risk in advance.) Some years ago, long before being diagnosed with ME I persistently presented to health professionals with fatigue. It took at least two years for my thyroid deficiency to be tested for and discovered. The replacement therapy was successful for a short time, but was later overtaken by ME. Perhaps I should have been more persistent with my requests for testing, but under the proposed SSD criteria I could have been at some risk of being diagnosed with a psychosomatic condition instead.
It is difficult to discern the strategic purpose of incarcerating severely disabled patients who have been diagnosed with SSD in a psychiatric ward. Is punishment the purpose? It is not as if psychiatry offered a cure or guaranteed any improvement for such cases. Too often hospitalization and some enforced treatments such as Cognitive Behaviour Therapy and Exercise Therapy for ME have left patients in a much worse condition.
Rather than accepting adverse outcomes as a failure of diagnosis and treatment, psychiatrists attribute a willful refusal to get well to patients. Psychiatry is all too willing to attribute perverse motives to patients. The significance of physical symptoms is also misinterpreted: for example, if an ME patient is unable to walk, this is regarded as a behavioural choice. Psychiatry has required no evidence of itself for these preferred interpretations. There is no display of dispassionate, scientific assessment and no possibility of an alternative diagnosis or treatment is entertained in these cases. The patient is always judged to be in the wrong. Making these favoured interpretations help the practitioners perpetuate their own belief system but are devastating to the patients.
Can a patient be redeemed from this diagnosis? We have as yet seen no revocation of Sophia’s diagnosis following her post-mortem. Nor have we heard of an apology to her family. It seems that psychiatry has reserved for itself the right to break down the doors of severely ill, bedbound patients, as they did with Sophia, and treat them like criminals.
It seems contradictory that patients who can only lie in bed, too sick to do anything and can barely think, would meet Criteria B. It is hard to imagine an ME patient devoting ‘excessive energy’ to their symptoms when energy is the very thing they lack. They could only meet the criteria through some circular reasoning by somatic psychiatry whereby having ‘unexplained’ physical symptoms per se is taken as evidence of the cognitive or emotional symptoms in Criteria B.
Can patients who are not quite as severely affected and have given up talking to doctors about their concerns escape the diagnosis even as their physical condition is deteriorating?
An avowed aim of these criteria is to avoid dualism. In practice, all the weight is given to the influence of thought processes on physical symptoms. The dualism concern often results only in the denial of the existence of physical disease and its effects and is used to deprive patients of a proper medical diagnosis.
Psychiatrists must have observed by now that the diagnosis of SSD itself (or its variations) can have adverse effects on patients. Patients’ stress is increased as they are made to feel crazy and are left more alone than ever because of their unacknowledged physical problems. Every step should be taken to ensure that such a diagnosis does not become the handbook on how to invalidate patients and drive them to desperation, as well as worsening their health.
Submission from patient, Samuel Wales
To the DSM-5 Task Force and particularly to the members of the “Somatic Symptom Disorder Work Group”.
All I can do is repeat my points from previously, as they have not been addressed:
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
The Kafka Pandemic
http://thekafkapandemic.blogspot.com
Submission from US advocate, Mary Dimmock
To: DSM-5 Task Force, Somatic Symptom Disorders Work Group
From: Mary Dimmock
Subject: Response on the Proposal for Somatic Symptom Disorder
Date: June 2, 2012I am writing to voice concerns with the proposal for “Somatic Symptom Disorder” (SSD).
During the second review of the DSM-5, numerous individuals raised significant concerns for the potential misuse and misapplication of the “Complex Somatic Symptom Disorder” (CSSD) and the “Simple Somatic Symptom Disorder” (SSSD) categories. The primary concern raised was the use of subjective and difficult to measure criteria to determine that patients were excessively focused on their symptoms and health concerns. A secondary concern was with how such a diagnosis could affect patient treatment, especially with the APA finding that one of the best treatments for SSD is CBT for “the identification and modification of dysfunctional and maladaptive beliefs about symptoms and disease“ and the suggestion to “limit testing and procedures”(1).
The 2012 version combines CSSD and SSSD into SSD but does nothing to address the earlier concerns for the category to be misused. The lack of objective, reliable criteria for determining that a patient has a disproportionate focus on their health is an insurmountable fatal flaw that can only be remediated by abandoning SSD until objective, reliable criteria with sufficient independent validation are in place.
The misuse of SSD is a major concern for patients suffering from any disease. This proposal would effectively turn a patient’s justified concern for his or her physical health into a mental illness. This is appallingly bad health policy.
But this proposal is especially problematic for patients who suffer from diseases that are not well understood. An example is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a complex neuro-immunedisease, which is characterized by many of these somatic symptoms. Despite advances in understanding the biological pathologies behind ME/CFS, there are still many in the medical communitythat considers this disease to be ‘all in the patient’s head’. Combining this lack of physician understanding with the proposal’s lack of objective, reliable criteria will be disastrous for ME/CFS patients and could directly affect the types of testing and treatment provided to the patient and impact insurance payments. It could also cause a parent to be wrongfully accused of ‘maintaining’ their child’s ‘sick role behavior’.
I urge you to seriously reconsider removing SSD from DSM-5 until studies have demonstrated that it can be objectively, reliably applied.
Mary Dimmock
Reference
1. “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 ).
Submission from Lydia Hendry, UK patient
1: This diagnosis relies on circular logic, and thus should be entirely changed… frequently patients are diagnosed with “somatic” symptoms because they are merely “medically unknown” – for example a patient with persistant backache, which is an as yet unfound slow-growing cancerous tumour – and this logic allows any doctor to diagnose anything as J00 merely by saying that the symptoms are somatic.
In the given example, the high levels of pain associated would cause B to be true, and the long-term nature would cause C to be true – so a clinician would just have to decide that the pain was somatic and the patient will never be treated effectively. The same could be true for absolutely any long-term condition.
2: The actual meaning of this is far too vague, in actuality it has become: Critera A, B and C must be fulfilled in order to make a diagnosis
A. Something is wrong with the patient, but you don’t know what
B. The patient is more concerned about it than you are
C. Whatever is wrong, has been wrong for a whileFurthermore, there is no scientific evidence to show that such a thing as somatisation disorder exists – there are merely the presence of patience whose symptoms are currently medically unexplained. To allow them to be diagnosed as “somatising” and thus be forced down mental health routes, for problems which could well be physical, is highly dangerous. It is the same thing that happened with diseases such as MS, Polio and Parkinsons – patients maligned and mistreated because they were told they were somatising, when in fact they had real symptoms. This “disorder” should not be permitted to exist at all, there is no evidence for it.
Submission from Mary M. Schweitzer, Ph.D., US advocate and patient
Mary M. Schweitzer blogs at http://slightlyalive.blogspot.com/
Submission to the Work Group for Somatic Symptom Disorders
The new category of Somatic Symptom Disorder, or SSD, bears a remarkable 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 (Oxford), which omits the physical symptoms required of the CDC diagnoses, and includes concurrent major mood disorders (exclusionary in Holmes and Fukuda). They have long insisted that “CFS” is really a modern version of “neurasthenia”, which was removed from DSM a generation ago but is still diagnosed in the UK.
2. Earlier efforts to portray CFS as a somatisizing illness were foiled by requirements in the definition of somatisizing, such as the length of the illness (decades) and the absence of any gain. It strikes one as somewhat disingenuous to deliberately replace that category with another that can then be used to portray as psychological, a disease described as biomedical by the Chronic Fatigue Syndrome Advisory Committee of DHHS.
3. The APA has stated elsewhere that many of the changes in DSM-5 are intended to avoid gender biases in existing medical categories. Isn’t it strange that the proponents of the new category SSD have often stated 90 percent of victims of CFS (and SSD by definition) are female? Or that the proponents of renaming the disease “neurasthenia” are also proponents of “SSD”?
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 smaller numbers 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 SSD 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 new, serious causes.
Several private research initiatives in the U.S. are using systems analysis to pull together evidence about immune defects and active viruses (both opportunistic and reactivated) found in the patient population.
At this point I must admit that I have a personal interest in this issue. 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 the 37kDa Rnase-L defect, my natural killer cell function is 2%, and I have an abnormal cytokine pattern.
Perhaps that is why I suffer from recurring bouts of EBV, and have chronically activated cytomegalovirus (CMV), HHV-6 (Variant A), HHV-7, and three strains of Coxsackie B. HHV-6A and CMV (both known to cause encephalitis) were found to be active in my spinal fluid in a spinal tap in 2009, along with the presence there of the 37kDa Rnase-L. That doesn’t sound very psychogenic to me.
I have been sick since suffering a blackout in my office in 1994. When in relapse, I have ataxia, expressive aphasia, expressive dysphasia, short-term memory loss, disorientation, 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 right now. At my worst, I could not walk ten paces, nor could I even brush my own teeth. I used to be an avid skier, but the disease put me in a wheelchair. I have a Ph.D. in history from Johns Hopkins, but I could not read.
I have abnormal SPECT scans and my VO2 MAX score (or CPET) is so low, I would be granted long term disability by that measure alone. I could not even pass a simple Romberg test.
I have been helped greatly by a Phase III immune modulator, only to relapse when permission from FDA to have the drug was removed. I am back on it now, and I am improving again, despite the 100-mile commute by rail from my home in Delaware to New York City. That is why some of the symptoms mentioned above are in the past tense. Without the immune drug, within months I relapse back into a severe state of invalidism.
If you believe that significantly abnormal immune biomarkers, Coxsackie B, 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? Does psychiatry want to be the handmaiden for the insurance industry? Does psychiatry want to become the default option for “I just don’t know”?
These are the questions that the profession needs to answer before proceeding with plans for SSD.
[Note to readers: To read about the proposed psychiatric category of SSD for DSM-5, go to the following website: Somatic Symptom Disorder (SSD). Instructions for comments are on the bottom of the page. We have only until June 15, 2012, to leave a comment.]
Submission from Peter Kemp, UK advocate and patient
How people with M.E. and CFS (and other illnesses) could be misdiagnosed as Somatic Symptom Disorder using DSM-5
Misdiagnosis is a common occurrence by all accounts. Therefore medical definitions or criteria should not only assist diagnosis – they should positively aim to prevent or reduce misdiagnosis.
Somatic Symptom Disorder (SSD) as proposed for DSM-5 allows too many possibilities for misdiagnosis. Misdiagnosis that could have disastrous consequences. This is so readily foreseeable that this must be addressed.
Once a physician diagnoses SSD, they have effectively judged the patient incompetent to interpret their own symptoms. If the patient has an unrecognised disease that progresses, or develops a new disease and reports the new symptoms to the doctor, what will the doctor do? The patient is untrustworthy. The doctor is busy and has ‘real’ patients to treat.
It is inevitable that even patients that are correctly diagnosed with SSD will sooner or later present with actual physical disease. The diagnosis of SSD could predictably obstruct investigation and treatment of their disease. This obstruction could be directly attributed to the use of an SSD diagnosis.
SSD should not be included in DSM-5 unless specific guidance to prevent misdiagnosis are included and these have been proven effective.
Imagine a doctor with a patient presenting in the early stages of MS. MS can be difficult to diagnose. When Professor Poser reviewed 366 MS diagnoses made by board certified neurologists, he found that only 65% had been correctly diagnosed (http://www.cfids.org/archives/2000rr/2000-rr4-article03.asp ).
It can take years before the signs, symptoms and tests are clear enough to make a diagnosis (http://ms.about.com/popular.htm ). The symptoms of ‘pre-diagnosis’ MS can be very distressing and the lack of a laboratory test or firm diagnosis may add to a patient’s worries. The patient may try all sorts of strategies to try and find out about, and improve what is happening to them. They may appear to pester their GP, they may appear neurotic and irrational.
Now imagine that in accordance with DSM-5, a doctor gives them a diagnosis of the proposed SSD. The patient has an official diagnosis in their medical records that amounts to ‘hypochondriac’. What effect will that have on the patient’s chances of getting the necessary investigations as the disease progresses? How is it going to help them to cope with their distressing physical symptoms now they have been explained as psychosomatic? The time it will take for them to get a true diagnosis may be further prolonged, and the years spent waiting could be made even more harrowing because of inaccurate psychological labelling.
Therefore sensible doctors will avoid diagnosing SSD. Foolish doctors risk spending their time at professional disciplinary hearings and in court; and this still might not adequately reflect the amount of suffering their diagnosis of SSD could cause.
The rationale for SSD also states: “The proposed classification for Somatic Symptom Disorders deemphasizes the central role of medically unexplained symptoms. Instead, it defines disorders on the basis of positive symptoms (distressing somatic symptoms + excessive thoughts, feelings, and behaviors in response to these symptoms).”
I believe it safe to say that ‘positive symptoms’ does not mean ‘good symptoms’ or ‘symptoms with the right attitude’. I imagine it means definite, definable, testable and maybe even measurable. But when terms like ‘distressing’ and ‘excessive’ are used to measure symptoms, the definition is not a definition. It is not even a convincing concept.
The idea is right, to base the definition on signs and symptoms that are actually present, as long as these sufficiently differentiate the condition from other conditions and do not lead to too many misdiagnoses. Unfortunately, they would predictably fail to achieve this because the definition proposed is significantly subjective.
The ‘DSM-5 Proposed Revision’ could certainly misdiagnose M.E. This would be a serious matter as M.E. is classified by the WHO ICD as a neurological illness. A doctor whose diagnosis of SSD was contradicted by a doctor that diagnosed M.E could find themselves in an awkward legal situation. The implications to the proper care of a patient, due to misdiagnosing a serious neurological illness as a neurotic illness hardly bear thinking about. Hindering necessary investigations and treatment might only be a small part of the problems this might create.
The latest proposal states:
“Somatic Symptom Disorder
Criteria A, B, and C must all be fulfilled to make the diagnosis:”
“A. Somatic symptoms: One or more somatic symptoms that are distressing and/or result in significant disruption in daily life.”
The Myalgic Encephalomyelitis: International Consensus Criteria – states:
(http://www.meassociation.org.uk/?p=7173)“A patient will meet the criteria for post-exertional neuroimmune exhaustion (A), at least one symptom from three neurological impairment categories (B), at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and at least one symptom from energy metabolism/transport impairments (D).”
The Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS states:
(http://www.cfids-cab.org/MESA/ccpccd.pdf)“A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations; and adhere to item 7.”
Therefore every patient with M.E. or CFS or ME/CFS will present with ample distressing and disruptive symptoms to satisfy DSM-5 Somatic Symptom Disorder Part A.
“B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least one of the following must be present.
(1) Disproportionate and persistent thoughts about the seriousness of one’s symptoms.
(2) Persistently high level of anxiety about health or symptoms
(3) Excessive time and energy devoted to these symptoms or health concerns”The NICE Guidelines for CFS/ME state:
(http://www.nice.org.uk/nicemedia/live/11824/36191/36191.pdf )“People with mild CFS/ME are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.”
Therefore even the mildest form of CFS sees persons who have often greatly reduced or stopped socializing, hobbies, sports etc.; and spend much of the time formerly devoted to these pursuits in resting and recuperating their energy to continue working.
When this level of disruptive illness goes on for more than 6 months, people will naturally and rationally become worried. They will be fearful of what is happening and what is going to happen. They will be anxious about their responsibilities, their job, their family and friend connections – everything. They may quite naturally seek help from their GP. They may be given antidepressants, sleeping medications, pain killers, etc. All these combined with a chronic illness necessitate frequent visits to their GP. They may try alternative therapies (possibly after having found what their GP offered did not help them). They may alter their diet, take nutritional supplements, go for acupuncture, homeopathy or other type of therapy.
And here is the rub; if one does not believe they are actually physically ill, their ‘thoughts, feelings and behaviours’ will certainly appear ‘excessive’. This could apply not just to CFS, but many other high impact and distressing illnesses.
The ‘Rationale’ for SSD states: “Undifferentiated Somatoform Disorder has such a low threshold that it is applicable to a very large proportion of patients attending primary care. The same low threshold issue occurs with Somatoform Disorder NOS.” The proposed definition does not address this problem. It might actually make it worse. If doctors believe that SSD has a valid definition they may start actually using it – then God help us.
If a person with just ‘mild’ CFS is justified in being worried, justified in resting so they can keep working, justified in searching for something that will improve their health – then anyone with the illnesses mentioned could meet the criteria to satisfy DSM-5 Somatic Symptom Disorder Part B.
The only proviso is that to some extent this could depend on interpretation of the subjective aspects of part B (there may be more detailed explanations elsewhere – this essay is based on what is included here). What is ‘excessive’, ‘persistantly’, ‘disproportionate’, ‘seriousness’?
The same ‘Rationale’ for SSD remarks on: “The lack of positive psychological features in the definition”. Unfortunately the proposed criteria attempt to define “positive psychological features” based entirely upon a physician’s subjectivity. That is not, in any sense, a definition.
This is why I believe the circular-reasoning trap constructed with SSD makes it risible. They construct a concept for SSD. They construct criteria for the concept. Chicken-egg or egg-chicken, take your pick.
The problem with this approach is that it does not IDENTIFY the psychological condition they are trying to define. SSD cannot exist only by differentiating features, this is true. Yet differentiating is an essential step. SSD must discern from other anxiety or depressive disorders. It must be discern from normal or rational anxiety, whether that anxiety is acute, chronic or fluctuating. It must discern from anxiety or depressive disorders due to neurological illness or injury. It must discern from physical illness that has not yet been diagnosed, or from physical illness for which diagnosis is complex or often delayed. It must discern from new or emerging diseases. If SSD cannot discern from these, then misdiagnosis could be a common and predictable result.
The criteria should define the disorder but they don’t. They attempt to define the criteria. The disorder should inform the criteria, but it doesn’t. The disorder is lost in a confusion of subjective terms, ‘excessive’, ‘persistantly’, ‘disproportionate’, ‘seriousness’.
The only way it can work is if someone (and here’s another trap); someone who believes that SSD exists and is defined by the DSM, decides what ‘excessive’ and ‘disproportionate’ etc., mean. Then all they have to do, is reach exactly the same conclusion that every other physician using the DSM would reach in the same position. Bingo. A diagnosis that does not mean anything other than what the ‘diagnoser’ decides that it means. And they better hope they got it right, otherwise a good lawyer will wipe the floor with them.
“C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is persistent (typically >6 months).”
This is either synchronicity, or they got this direct from the NICE Guidelines for ‘CFS/ME’. The NICE Guidelines ‘Making a diagnosis’ state:
“The range of presenting symptoms is wide, and fatigue and pain may not always be the prominent disabling features at initial presentation.”
“Symptoms tend to vary in intensity and type over a period of weeks or months (and evolve into what is more clearly CFS/ME with time)”Mild CFS will satisfy DSM-5 Somatic Symptom Disorder Part C. Therefore every person with M.E. or CFS could get a diagnosis of SSD unless they can convince any psychiatrist they encounter that they are not ‘excessive’, ‘persistent’, ‘disproportionate’, or that they don’t believe they are seriously ill.
A serious anomaly might arise with SSD in both M.E. and CFS. These illnesses can start with only fatigue or just a few symptoms. Extreme fatigue and pain might be all that a patient reports. However, if the illness continues over years, some symptoms may improve whilst new ones appear. Problems such as sensory impairments, bladder and bowel problems, immune dysfunction, and a host of neurological symptoms (to name but a few) can develop.
Will the M.E. or CFS patient then be vulnerable to having their previous diagnosis ‘cancelled-out’ by a new diagnosis of SSD, because they developed too many symptoms and are worried about them?
The SSD development group have repeated previous flaws they identified as creating the need for new definitions. They have not defined anything. Yet there may be some positive outcome from their efforts. I imagine that some medical insurance company executives must be rubbing their hands together in glee,
For submissions by professional bodies go to Page 4
dx revision watch 