DSM-5 public review: CFIDS calls for input; Mary Schweitzer submission
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DSM-5 public review: CFIDS calls for input; Mary Schweitzer submission
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From Suzy Chapman
4 March 2010
DSM-5 public review process
The March issue of CFIDSLink-e-News reports that the CFIDS Association
is seeking input from outside experts:
Extract:
http://www.cfids.org/archives/2006-2010-cfidslink/march-2010.asp
"Advocacy Counts
"The Diagnostic and Statistical Manual for Mental Disorders (DSM) is being
revised by the American Psychiatric Association (APA). The proposed
revision, DSM5, has drawn media coverage and close scrutiny since its
release on Feb. 10. Creation of a new category called "Chronic Somatic
Symptoms Disorder" is of particular concern to CFS patients and
organizations. The Association is seeking input from outside experts and
will submit a review of the biological abnormalities in CFS to APA. The APA
will accept public comments until April 20."
Please note that the proposed new classification is "Complex Somatic
Symptom Disorder (CSSD)" and not "Chronic" as given above.
The proposal is that Somatoform Disorders, Psychological Factors Affecting
Medical Condition (PFAMC), and Factitious Disorders should be combined
under a common rubric entitled "Somatic Symptom Disorders" and for a new
classification "Complex Somatic Symptom Disorder (CSSD)."
The DSM-5 public review period runs from 10 February to 20 April, so there
are just over six weeks during which stakeholders in DSM-5 - members of the
public, patient representation organisations, professionals and other end
users can submit their responses.
Please take this opportunity to comment and to alert and encourage
professionals and international patient organisations to participate. Key
links are provided at the end of this mailing.
The following UK organisations have so far been silent on the DSM-5
proposals.
They are being contacted this week for position statements on whether they
intend to submit a response and if so, whether their responses will be
published:
Action for M.E., The ME Association, AYME, The Young ME Sufferers Trust,
The 25% M.E. Group, Invest in ME, ME Research UK.
I would welcome copies of submissions from any patient organisations,
professionals and advocates for publication on a dedicated page on my
website:
http://wp.me/PKrrB-AQ
The following is published with kind permission of Mary M. Schweitzer, PhD:
Submission to the Work Group for Somatic Symptom Disorders
The new category of Complex Somatic Symptom Disorder, or CSSD, bears a
disturbing resemblance to the CDC's Holmes (1988) and Fukuda (1994)
definitions of the disease Chronic Fatigue Syndrome (CFS). The requirement
that patients experience six months of debilitating fatigue is taken
straight from CDC's definitions. This development is disturbing for three
reasons:
1. For two decades, British psychiatrists Michael Sharpe, Peter White,
and Simon Wessely - all proponents of the ideology-driven "biopsychosocial"
school of medicine - have ignored the CDC's definition for one of their
own, which omits the physical symptoms required of the CDC diagnoses, and
includes concurrent major mood disorders (exclusionary in Holmes and
Fukuda). They have long insisted that "CFS" is really a modern version of
"neurasthenia", which was removed from DSM a generation ago but is still
diagnosed in the UK.
2. Earlier efforts to portray CFS as a somatisizing illness were foiled
by requirements in the definition of somatisizing, such as the length of
the illness (decades) and the absence of any gain. It strikes one as
somewhat disingenuous to deliberately replace that category with another
that can then be used to portray as psychological, a disease described as
biomedical by the Chronic Fatigue Syndrome Advisory Committee of DHHS.
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 is
strange that the proponents of the new category CSSD have often stated 90
percent of victims of CFS (and CSSD by distinction) are female?
At the end of the 1980s, when CDC adopted the name of "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 shrivelled
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" did not permit their daughters a secondary education, and
they enjoyed large families as opposed to the small number of children born
to the middle class of the "American race".
I have to say I never thought I would see that book cited as a reputable
source by a contemporary scholar, but both Wessely and the late Stephen
Straus of NIH used it frequently.
Adoption of CSSD will allow this bizarre nineteenth century view of the
way women's bodies work to return to DSM, albeit under a more modern name.
In England, the insistence that CFS is really neurasthenia has led to
cruel results, with women thrown into mental hospitals against their will.
CBT (to cure the patient of her "inappropriate illness beliefs") and GET
(to get her back into shape after she has allowed herself to become
deconditioned) are the only treatments recommended by British public
health.
The result is that patients with the most severe cases of this disease
are forced into hiding, bereft of all medical care whatsoever.
Adults in the U.S. have, in general, not been subjected to that level of
cruelty - although doctors ignorant of the large body of literature on the
biomedical symptoms and causes of CFS are inclined to throw SSRIs at
patients, whether it helps them or not.
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 MSBP (or its more recent
incarnation, Factitious Illness by Proxy) after hearing a lecture or
reading an article on the subject. The more the parents fight the
diagnosis, the more its proponents can claim it is true.
The phenomenon is reminiscent of the belief that autism is caused by
"cold mother syndrome", or multiple sclerosis really "hysterical
paralysis".
It is particularly ironic to see such a push towards psychologizing a
physical disorder at the very moment evidence points to a new, serious
cause.
In October 2009, an article published in "Science" demonstrated that 2/3
of a sample of patients diagnosed with CFS are victims of the third known
human retrovirus, XMRV.
I was in that study, and I have XMRV.
At this point I must admit that I have a personal interest in this issue.
But I have been fortunate; my university connections have allowed me to
participate in cutting edge studies. Let me share with you what scientists
have learned about CFS, using myself as the case study.
As mentioned, I have been diagnosed with the newly discovered retrovirus
XMRV, only the third known human retrovirus.
I also have the 37kDa Rnase-L defect, and my natural killer cell function
is 2%.
Perhaps that is why I suffer from recurring bouts of EBV, and have
chronically activated cytomegalovirus (CMV), HHV-6 (Variant A), HHV-7,
among other viruses.
I have been sick since suffering a blackout in my office in 1994. I have
ataxia, expressive aphasia, expressive dysphasia, short-term memory loss,
and profound confusion (I once poured a cup of coffee into a silverware
drawer convinced it was a cup). I suffer from constant severe pain behind
my eyes, in the back of my neck, and in the large muscles of my thighs and
upper arms. Even one flight of stairs is very difficult for me. When we go
places, we have to use a wheelchair. And I used to be an avid skier.
I cannot pass a simple Romberg test. I have abnormal SPECT scans and my
VO2 MAX score is 15.5, lower than would be expected of my 85-year-old
mother.
I have been helped greatly by an experimental immune modulator, only to
relapse when permission from FDA to have the drug was removed.
If you believe that a retrovirus, significantly abnormal immune
biomarkers, and herpes viruses known to cause encephalitis, meningitis,
myocarditis, and other serious diseases when active over a long period of
time - if you believe all of this can be resolved using talking therapy and
SSRIs, then proceed with your new category.
Neither could help me in the past - only pharmacological intervention
directed at the viruses and immune defects has improved my condition.
How many biomarkers and viruses must a patient have to be taken
seriously? If one is in constant pain, does it not make sense to worry
about pain? If one suffers from a significantly debilitating illness, does
it not make sense to be concerned about the state of your health?
This new category would place those sensible concerns in the realm of
abnormal anxiety dysfunction. Patients would be denied access to the
tests - and treatments - I have been fortunate to be able to have.
According to the CDC, at most, 15% of the 1 million adult patients with
CFS in the U.S. even have a diagnosis. Of those 150,000, only a handful
have had access to the care, testing, and treatment I have.
It is a Dickensian world, where the victims of this disease are relegated
to extreme poverty, no matter what their profession prior to the illness.
Who, then, would benefit from creating a psychological category for this
very biophysical disease?
This is a question that the profession needs to answer before proceeding
with plans for CSSD.
Mary M. Schweitzer, Ph.D.
-----------------------------------
To submit a comment, register here:
APA's new DSM-5 Development site:
http://www.dsm5.org/Pages/Default.aspx
You can also register via a link at the bottom of each proposal, for
example, at the bottom of this key page:
Complex Somatic symptom disorder (CSSD)
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368
Note that if you are viewing proposals from this page:
http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx
you won't see the page for:
"Psychological Factors Affecting Medical Condition"
This is one of the DSM-IV categories that the Work Group is proposing
should be combined with several other current categories under "Somatic
Symptom Disorders".
In order to view this page, the Proposed Revision, Rationale and other
Tabs, or if you wished to submit a comment specifically in relation to this
proposal, this is the URL:
316 Psychological Factors Affecting Medical Condition
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=387
There are two key PDF documents associated with proposals for the DSM
categories currently classified under "Somatoform Disorders". [See: 5]
These provide an overview of the new proposals and revisions and a
"Justification of Criteria" rationale document. I would recommend
downloading these.
Related information:
[1] APA's new DSM-5 Development webpages:
http://www.dsm5.org/Pages/Default.aspx
[2] Somatoform Disorders:
http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx
[3] Complex Somatic Symptom Disorder (CSSD)
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368
[4] Psychological Factors Affecting Medical Condition
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=387
[5] Key PDF documents:
PDF A] Somatic Symptom Disorders Introduction DRAFT 1/29/10
http://www.dsm5.org/Documents/Somatic/APA Somatic Symptom Disorders description January29 2010.pdf
PDF B] Justification of Criteria - Somatic Symptoms DRAFT 1/29/10
http://www.dsm5.org/Documents/Somatic/APA DSM Validity Propositions 1-29-2010.pdf
[6] For more information see my Dx Revision Watch site, DSM-5
proposals page:
http://wp.me/PKrrB-jZ
Suzy Chapman
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me.agenda@virgin.net
http://dxrevisionwatch.wordpress.com
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