October 29, 2009
=20
I would like to express my gratitude to those serving on the CFSAC, now and=
in=20
the past, who have given of their time and expertise. Despite your good wor=
k,=20
there has not been a written response from DHHS to a single recommendation =
of=20
this committee since 2003. This is unacceptable and must be changed. That =
said,=20
I give credit to those ex officio members who have acted courageously in mo=
ving=20
forward with recommendations from the CSFAC. For those of you who have done=
so,=20
I thank you.=20
=20
CFS is a physical disease, and we can identify, characterize, and measure i=
ts=20
most distinctive and disabling features. The gold standard in medicine is t=
o=20
identify and employ objective measures to evaluate disease and illness seve=
rity.=20
That is what we do in our laboratory, assess impairment in CFS. A medically=
=20
determinable impairment requires objective evidence. For example, we have=
=20
developed an objective serial cardiopulmonary exercise test protocol using =
AMA=20
guidelines that measures functional impairment as well as the metabolic,=20
cardiovascular and pulmonary systems both at rest and during exercise. The=
=20
protocol elicits and measures both fatigue and post-exertional malaise,=20
considered to be a hallmark symptom of CFS. By contrast, the CDC recommends=
the=20
use of self-report questionnaires to diagnose and quantify this illness.=20
Questionnaires simply do not provide the evidence required by Social Securi=
ty or=20
long term disability carriers to diagnose medical illness or to determine a=
=20
disability claim. That questionnaires have become the standard of diagnosis=
for=20
CFS at the CDC shows how little progress they have been made in the last 25=
=20
years in characterizing this disabling illness. =20
=20
The questionnaire approach to diagnosis in CFS at the CDC has also been=20
criticized by psychiatrist Eleanor Stein, the IACFS/ME Ambassador from Cana=
da.=20
As she was unable to speak today, she asked me to read the following statem=
ent,=20
=20
=E2=80=9CI would like to express my strong concern about the harm being don=
e by using=20
the 2005 empiric definition of CFS. This definition recommends diagnosing C=
FS=20
using 3 self-report questionnaires: 2 of the 3 are non specific and erroneo=
usly=20
include people with a wide variety of disorders including primary psychiatr=
ic=20
problems. It is obvious to me as a dedicated CFS clinician that I cannot us=
e the=20
Empiric Definition in good faith in my practice; I rely on the Fukuda and t=
he=20
Canadian Consensus definitions for diagnosis and all medical-legal issues. =
The=20
Empiric Definition has resulted in a dramatically increased prevalence in C=
FS in=20
the US. Studies by Jason et al have shown that this increased prevalence m=
ay be=20
due to the inclusion of persons with depression.=20
=20
Without a sensitive and specific case definition, how can future research h=
ope=20
to uncover the biomedical underpinnings of this disorder for the benefit of=
=20
those who suffer? It is my hope that the CFSAC will make a public statemen=
t=20
that the Empiric Criteria should not be used for either clinical care or=20
research and that until a better definition is created the Fukuda and/or=20
Canadian Consensus Definitions should be used.=E2=80=9D=20
=20
Given the lack of progress at CDC, the CFS Advisory Committee=E2=80=99s num=
ber one=20
recommendation from their last meeting was to, =E2=80=9Cestablish new leade=
rship at the=20
CDC for the CFS program.=E2=80=9D This recommendation was in concert with t=
hose made by=20
the IACFS/ME and CFIDS Association of America. Yet, this unified call for c=
hange=20
from the three most respected organizations in the field has gone unheeded.=
We=20
have objective measures. We have discernable physical characteristics. It =
is=20
well past time for the CDC to become responsive to the researchers, clinici=
ans=20
and patients who are united in their insistence on objective diagnostic cri=
teria=20
to characterize this disabling illness.=20
=20
=20
Respectfully,=20
=20
Staci R. Stevens, MA=20
Founding Executive Director=20
Pacific Fatigue Laboratory, University of the Pacific=20
IACFS/ME Board Member=20
=20
.
---------------------------------------------
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