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>>>>> Help ME Circle <<<<
>>>> 4 November 2009 <<<<
Editorship : j.van.roijen@chello.nl
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Video casts from the Chronic Fatigue Syndrome
Advisory Committee Meeting at 29 and 30 October
2009 can be found at the website of the:
National Institutes of Health
Click left on the icon *Play Video* to see the
video.
Click right on the icon *Play Video* to save the
video to your pc.
You need to have Real Player installed on your pc,
which can be be downloaded (for free) at:
Chronic Fatigue Syndrome Advisory Committee
Meeting (CFSAC) - Day 1
Thursday, October 29, 2009
http://videocast.nih.gov/ram/fic103009.ram
Chronic Fatigue Syndrome Advisory Committee
Meeting (CFSAC) - Day 2
Friday, October 30, 2009
http://videocast.nih.gov/ram/fic103009.ram
~jan van roijen
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Chronic 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 curriculum.
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
diminished.
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!
Conclusions
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.
Thank-you!
[permission to repost and forward in its entirety]
~~~~~~
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