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Chronic Fatigue Syndrome Education in the United StatesTestimony for the Chronic Fatigue Syndrome Advisory CommitteeOctober 30, 2009Chronic Fatigue Syndrome Education in the United StatesTestimony for the Chronic Fatigue Syndrome Advisory CommitteeOctober 30, 2009Kenneth J. Friedman, Ph.D.Treasurer of the International Association of Chronic Fatigue Syndrome/MEDirector 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 JerseyChronic Fatigue Syndrome AssociationBoard Member, Vermont CFIDS AssociationGood 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 FatigueSyndrome education in the United States.Comments on The Academic, Medical School EnvironmentThe Director of the Office of Ethics and Compliance of my employer has informedme that my off-campus activities related to CFS which include: testifyingbefore this Committee, serving on this Committee, providing continuing medicaleducation courses, establishing medical student scholarships and assisting withhealthcare legislation are not part of my responsibilities as a UniversityProfessor. I am told that I will be punished with a penalty as severe astermination of my employment for these activities.I am not a unique target. Colleague Ben Natelson has left the same school. Adifferent medical school has refused to permit access to their medical studentsto discuss CFS or inform them of a medical student scholarship. A statewidehealth care provider, with no physician capable of managing CFS patients refusesto permit a CFS training session for their physicians. The failure of the CDCto convince the medical-academic establishment of the legitimacy of CFS, and theurgent need for its treatment, has created this environment.Comments on Medical Student EducationHigh ranking officials of medical education have testified before this Committeethat they are powerless to control the curriculum of medical schools, and cannotmandate the inclusion of Chronic Fatigue Syndrome in the medical schoolcurriculum.Were the CDC to mandate the reporting of CFS to the Federal Government, as itdoes for other illnesses, the National Board of Medical Examiners would have nochoice but to put CFS questions on the National Boards. If CFS questions wereto appear on National Board licensure examinations, medical schools would haveno choice but to include CFS in their curriculum.I have appeared before this body on two separate occasions arguing for the useof existing student programs within both the NIH and the CDC to rotate medicalstudents through NIH and CDC laboratories. I have pleaded for dialogue andfeedback on any of my proposals. I have heard nothing.The only mechanism for medical student education for CFS is the medical studentscholarship programs run by patient advocate organizations. We now haveprograms running in three states. How many scholarship programs must be mountedby state patient advocate groups before the CDC mounts a single, nationalmedical student program?Comments on Continuing Medical Education for PhysiciansTo my knowledge, the CDCï¿½s on-line continuing medical education CFS course isthe only involvement of the federal government in healthcare provider education.Does the CDC honestly believe that sitting in front of a computer screen for afew 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 courseon diagnosis and treatment of CFS? From Vermont CFIDS: there is no increase inthe number of physicians who diagnose or treat CFS in this state. From NJCFSA:the number of requests for physician referrals to our helpline has notdiminished.......
.....cont.Comments on Chronic Fatigue Syndrome Educational MaterialsIn my opinion, all federal and private sector literature concerning ChronicFatigue Syndrome is out of date. There is no established mechanism for updatinghealth care provider literature. Of the available literature, the mostauthoritative and accepted source of information on Chronic Fatigue Syndrome isa physicianï¿½s diagnosis and treatment manual not produced by the Centers forDisease Control, not produced by the National Institutes of Health, but producedby the New Jersey Chronic Fatigue Syndrome Association: the Consensus Manualfor the Primary Care and Management of Chronic Fatigue Syndrome. I ask thatthis Committee recommend to the U.S. Secretary of Health that a nationaldiagnosis and treatment manual for CFS be created, that a panel be formed towrite this manual, that the Department of Health and Human Services underwritethe expense of producing and distributing this manual.With regard to the recent, CDC ï¿½Spark Awarenessï¿½ Campaign and theaccompanying ï¿½Physiciansï¿½ Toolkit,ï¿½ not one patient in the State ofVermont ever saw the patientï¿½s pamphlet. An incredible waste of money!ConclusionsThe only on-going educational programs for medical students and physicians thatinvolve 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 threatenedwith termination of employment for participating in Chronic Fatigue Syndromeeducation, 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!
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