Monday, November 2, 2009

Great deal, only for hostile doctors though


Anonymous said...

Chronic Fatigue Syndrome Education in the United States
Testimony for the Chronic Fatigue Syndrome Advisory Committee

October 30, 2009Chronic Fatigue Syndrome Education in the United States
Testimony for the Chronic Fatigue Syndrome Advisory Committee
October 30, 2009
Kenneth J. Friedman, Ph.D.
Treasurer of the International Association of Chronic Fatigue Syndrome/ME
Director of Public Policy for P.A.N.D.O.R.A., Inc.
Scientific Adviser to Lifelyme, Inc.
Board Member and Chair of the Medical Student Scholarship Committee, New Jersey
Chronic Fatigue Syndrome Association
Board Member, Vermont CFIDS Association

Good morning!

My name is Kenneth Friedman and I am a medical school professor.

I have been asked by the IACFS/ME to comment upon the status of Chronic Fatigue
Syndrome education in the United States.

Comments on The Academic, Medical School Environment

The Director of the Office of Ethics and Compliance of my employer has informed
me that my off-campus activities related to CFS which include: testifying
before this Committee, serving on this Committee, providing continuing medical
education courses, establishing medical student scholarships and assisting with
healthcare legislation are not part of my responsibilities as a University
Professor. I am told that I will be punished with a penalty as severe as
termination of my employment for these activities.

I am not a unique target. Colleague Ben Natelson has left the same school. A
different medical school has refused to permit access to their medical students
to discuss CFS or inform them of a medical student scholarship. A statewide
health care provider, with no physician capable of managing CFS patients refuses
to permit a CFS training session for their physicians. The failure of the CDC
to convince the medical-academic establishment of the legitimacy of CFS, and the
urgent need for its treatment, has created this environment.

Comments on Medical Student Education

High ranking officials of medical education have testified before this Committee
that they are powerless to control the curriculum of medical schools, and cannot
mandate the inclusion of Chronic Fatigue Syndrome in the medical school

Were the CDC to mandate the reporting of CFS to the Federal Government, as it
does for other illnesses, the National Board of Medical Examiners would have no
choice but to put CFS questions on the National Boards. If CFS questions were
to appear on National Board licensure examinations, medical schools would have
no choice but to include CFS in their curriculum.

I have appeared before this body on two separate occasions arguing for the use
of existing student programs within both the NIH and the CDC to rotate medical
students through NIH and CDC laboratories. I have pleaded for dialogue and
feedback on any of my proposals. I have heard nothing.

The only mechanism for medical student education for CFS is the medical student
scholarship programs run by patient advocate organizations. We now have
programs running in three states. How many scholarship programs must be mounted
by state patient advocate groups before the CDC mounts a single, national
medical student program?

Comments on Continuing Medical Education for Physicians

To my knowledge, the CDC�s on-line continuing medical education CFS course is
the only involvement of the federal government in healthcare provider education.
Does the CDC honestly believe that sitting in front of a computer screen for a
few hours will make a physician capable of diagnosing and treating CFS?

From the CFS Community's perspective, what is the impact of the on-line course
on diagnosis and treatment of CFS? From Vermont CFIDS: there is no increase in
the number of physicians who diagnose or treat CFS in this state. From NJCFSA:
the number of requests for physician referrals to our helpline has not

Anonymous said...


Comments on Chronic Fatigue Syndrome Educational Materials

In my opinion, all federal and private sector literature concerning Chronic
Fatigue Syndrome is out of date. There is no established mechanism for updating
health care provider literature. Of the available literature, the most
authoritative and accepted source of information on Chronic Fatigue Syndrome is
a physician�s diagnosis and treatment manual not produced by the Centers for
Disease Control, not produced by the National Institutes of Health, but produced
by the New Jersey Chronic Fatigue Syndrome Association: the Consensus Manual
for the Primary Care and Management of Chronic Fatigue Syndrome. I ask that
this Committee recommend to the U.S. Secretary of Health that a national
diagnosis and treatment manual for CFS be created, that a panel be formed to
write this manual, that the Department of Health and Human Services underwrite
the expense of producing and distributing this manual.

With regard to the recent, CDC �Spark Awareness� Campaign and the
accompanying �Physicians� Toolkit,� not one patient in the State of
Vermont ever saw the patient�s pamphlet. An incredible waste of money!


The only on-going educational programs for medical students and physicians that
involve human contact come from patient advocate groups.

Patient advocate groups are the current source of educational materials for CFS.
They rely on the assistance of academicians. If academicians are threatened
with termination of employment for participating in Chronic Fatigue Syndrome
education, there will be no educational programs.

I beg you to consider the magnitude of this problem.

I beg you to undertake a course of remedial action.


Anonymous said...

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