Friday, October 22, 2010

Testimony of Kenneth J. Friedman, Ph.D. Chronic Fatigue Syndrome Advisory Commit

Testimony of Kenneth J. Friedman, Ph.D.
Chronic Fatigue Syndrome Advisory Committee
October 14, 2010

My name is Kenneth J. Friedman.   I am the current Treasurer of the International Association for Chronic Fatigue Syndrome/ME and serve on the boards of the New Jersey Chronic Fatigue Syndrome Association, P.A.N.D.O.R.A, and the Vermont CFIDS Association.
Both I and the organizations for which I work are concerned by newspaper accounts of events surrounding the publications linking Chronic Fatigue Syndrome to XMRV and related viruses. 
Our first concern is generated by the New York Times interview of Dr. William Reeves subsequent to the initial publication of the joint findings of the Whittemore Peterson Institute, the Cleveland Clinic and the National Cancer Institute.1   It is not clear to us whether Dr. Reeves' expression of doubt regarding the validity of the published findings were his personal opinion or a representation of the sentiments of the agency for which he works.2   Our second concern is generated by the report in the Wall Street Journal3, that two research papers, one a study performed at the Centers for Disease Control which found no evidence of XMRV in the blood of CFS patients4, and a second study conducted by the Food and Drug Administration, the National Institutes of Health and Harvard Medical School which found evidence of murine leukemia virus in Chronic Fatigue Syndrome patients were both being withheld from publication by senior public health officials of the Department of Health and Human Services.
If these newspaper accounts are correct, we have the following concerns: 
 
1. While all federal employees have a right to express their personal opinions, they should refrain from doing so when they are being interviewed in their official capacities. 
2. Research programs run by the federal government are paid for by taxpayer dollars.  As such, it is the responsibility of those agencies to publish the results of such research programs promptly. 
3.  Results of research sponsored by the federal government should be published independently of the research findings of other institutions and agencies. 
4. Research studies and the publication of such studies, funded by taxpayer dollars, should not be delayed in publication in deference to divergent outcomes as alleged in the Wall Street Journal.3
Such behaviors are antithetical to the prescripts of science.  We have the expectation of prompt promulgation of peer reviewed research studies.  Censorship by the Department of Health and Human Services is inappropriate and not an option.
I respectfully request that this Committee fashion a recommendation to the U.S. Secretary of Health, affirming that from this day forward, the science conducted by any agency under her purview, and under the purview of her successors, will be conducted to the highest professional and ethical standards of science, and that the research results obtained in any one agency will be published independently of the results produced by any other agency.  The federal government, which invests heavily in the scientific enterprise, must manifest sufficient confidence in the scientific process to refrain from administrative interference. 
I respectfully remind this Committee that the federal government has previously strayed from its mission of dedicated research that benefits the Chronic Fatigue Syndrome Community6,7.  The lay press reports cited above suggest that the unfettered, apolitical, scientific, research investigation of Chronic Fatigue Syndrome has yet to be achieved. 
Senator Edward M. Kennedy stated in his tribute to his deceased brother, Robert F. Kennedy:   Few will have the greatness to bend history itself; but each of us can work to change a small portion of events, and in the total; of all those acts will be written the history of this generation.
Let each of us work to change a small portion of events so that our history will reflect altruism and integrity.
Thank-you for your attention.
1.  Lombardi, V.C., Ruscetti, F.W., Das Gupta, J., Pfost, M.A., Hagen, K.S., Peterson, D.L., Ruscetti, S.K., Bagni, R.K., Petrow-Sadowksi, C., Gold, B., Dean, M. Silverman, R.H. , Mikovitz, J.A. ( 2009) Science 326(5952):585-9.  Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. 
2.  Grady, Denise (October 12, 2009) The New York Times .  Is a Virus the Cause of Fatigue Syndrome?
3.  Marcus, A.D. (June 30, 2010) The Wall Street Journal.  Chronic-Fatigue Link to Virus Disputed.  One Research Group Finds Virus XMRV in the Blood of Syndrome Sufferers, One does not; Papers Held From Publication.
4.  Switzer, W.M., Jia, H, Hohn, O., Zheng, H., Tang, S., Shankar, A., Bannert, N, Simmons, G., Hendry, R.M., Falkenberg, V.R., Reeves, W.C., Heneine, W. (2010) Retrovirology  7:57.   Absence of evidence of xenotropic murine leukemia virus-related virus infection in persons with chronic fatigue syndrome and health controls in the United States.
5.  Lo, SC., Pripuzova, N., Li, B., Komaroff, A.L., Hung, G.C., Wang, R., Alter, H.J.  (August 23, 2010) Proceedings of the National Academy of Sciences 107(36):15874-9.  Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors.
6.  http://oslersweb.co/newsletter.htm  (October 9, 2010)
7.  Johnson, Hillary ( 2006 ) Osler's Web:  Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.  Backinprint.com, New York, New York
 

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