6:16 p.m.
Dear Friends:
As you know, we are all concerned about the proposed DSM-5 manual manual of psychiatric
diagnoses by the American Psychiatric Association scheduled for release in 2013.
Our President, Margaret Parlor, has written the DSM-5 Task Force on behalf of the National
ME/FM Action Network and the ME/CFS community to place our voice on record and is shown
below.
As President, Dr. Fred Friedberg, of the IACFS/ME stated, it is important to let our
voices be heard as a classification of a psychiatric disorder for ME/CFS would be a
"major setback to our community in our ongoing efforts to legitimize and increase
recognition of the illness."
Lydia
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
For the attention of the Somatic Symptom Disorders Work Group :
The National ME/FM Action Network works on behalf of Canadians with Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia. Our organization was founded
in 1993 and has many accomplishments to its credit. A leading accomplishment was
spearheading the development of the Canadian Consensus diagnostic and treatment protocols
for ME/CFS and Fibromyalgia. These criteria are receiving strong international support.
Another major accomplishment was publishing statistics on these conditions. Our analysis,
based on a major Statistics Canada survey, showed that there were 628,500 Canadians
diagnosed with one or both of these conditions in 2005 and that they experienced high
degrees of disability, disadvantage and unmet needs in comparison with other chronic
illness cohorts.
Diagnostic criteria are very important. DMS-5 will be used to determine who qualify for
psychiatric services. Criteria are problematic if they result in false negatives (people
who do not qualify for services but who would benefit from them) or false positives
(people who qualify for services do not benefit from them). We are concerned the proposed
new category for Chronic Somatic Syndrome Disorder (CSSD) will result in an unacceptable
number of false positives in the ME/FM community.
A fundamental question is how psychiatry can help patients with ME/CFS and Fibromyalgia.
Some psychiatrists have proposed Cognitive Behaviour Therapy as a treatment for Chronic
Fatigue Syndrome. A recent UK study examined the benefits of CBT for patients with CFS.
Patient groups have pointed out numerous issues around the study design and how study
population was selected and would reject the study as badly flawed. However, even taking
the study at face value, the study showed that CBT was of minor benefit to patients, akin
to the benefits of CBT for other chronic illnesses. CBT does not get to the heart of the
illness. ME/CFS and Fibromyalgia are not psychiatric disorders.
Our position on the role of psychiatry is simple and clear. We think that psychiatry
should play the same role for ME/CFS and Fibromyalgia patients as it does for patients
with other chronic physical illnesses like cancer, diabetes or arthritis. Those patients
receive psychiatric support if and only if psychiatric issues are apparent after medical
and social supports in place. We would like to refer you to a document entitled
“Assessment and Treatment of Patients with ME/CFS; Clinical Guidelines for Psychiatrists”
by Dr. Eleanor Stein, a Canadian psychiatrist. This document describes an appropriate role
for psychiatrists in assessing and treating ME/CFS, respecting the reality of the
illness.
Over the years, we have heard many stories from patients with ME/CFS or Fibromyalgia who
went to a doctor for help only to be fobbed off to a psychiatrist because the family
doctor did not believe their symptoms or did not know how to help, rather than because the
patient needs psychiatric services. This situation does not help patients – it denies
their experiences, it undercuts their credibility and it distracts from their real issues.
This situation does not help psychiatry either as it is called upon to solve problems that
it cannot solve.
The new Complex Somatic Syndrome Disorder category could compound this situation. A
patient with ME/CFS or Fibromyalgia would get a diagnosis of CSSD if a doctor believes the
patient is overreacting to the illness, even if the patient is actually behaving very
rationally. The patient would be labelled with a undeserved, unhelpful and misleading
psychiatric label which would make dealing with the core health issues even more difficult
than they already are.
The CSSD category could be very harmful to patients with ME/CFS and Fibromyalgia. We ask
you to refrain from including CSSD in DMS-5 in the absence of protections to ensure that
patients with ME/CFS and Fibromyalgia do not receive false positive diagnoses.
Margaret Parlor
President
NATIONAL ME/FM ACTION NETWORK
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.com
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL
CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
For details on agendas and registration, please visit:
Member of www.iacfsme.org