From Suzy Chapman for http://dsm5watch.wordpress.com
15 July 2011
Final day for submitting DSM-5 feedback
If you haven't already submitted a letter, this year, and if you are up =
to it, I urge you to register and submit feedback, today. The closing =
date has been extended by the APA to today, July 15.
=20
I am still collating submissions to DSM-5 on my website. If you have =
already submitted and would like a copy of your letter included on my =
site, please forward a copy to me.agenda@virgin.net stating how you =
would like to be styled. No email addresses will be published or made =
available to others.
Thanks to all those organizations and individuals who have already =
submitted or raised awareness.
Copies of this year's submissions, including the Coalition4ME's "Call to =
Action" resources and template letter, are being collated here:=20
http://tinyurl.com/DSM5submissions2011
-----------
Two of the latest submissions:
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 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
-----------
The two key PDF documents "Disorders Descriptions" and "Rationale", =
which expand on the Work Group's proposals are here:
http://tinyurl.com/SSD-Disorders-Description =20
http://tinyurl.com/SSD-Justification-of-Criteria=20
Register to submit feedback via the DSM-5 Development website here: =
http://tinyurl.com/Somatic-Symptom-Disorders
Once registered and logged in, leave comment on CSSD criteria here: =
http://tinyurl.com/DSM-5-CSSD
Suzy Chapman
_____________________
me.agenda@virgin.net
http://dsm5watch.wordpress.com
http://meagenda.wordpress.com
http://www.facebook.com/MEagenda
http://twitter.com/MEagenda
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