19 September 2010

Summary of Meeting with Patients and NIH Officials

On the 07 September 2010, prior to the commencement of the First International Workshop on XMRV, nine people with ME/CFS, and their families, met with highly regarded officials from the National Institutes of Health.  It appears that this is the first time such a meeting has taken place.

The officials from the NIH included:

Michael Gottesman, M.D.    Dr Gottesman is the chief of NCI's Laboratory of Cell Biology and Director of the NIH Office of Intramural Research.  Michael is known for identifying the human gene responsible for resistance of cancer cells to many of the most common anticancer drugs.

Paul Holtz, M.D.  Dr Holtz is the chief of the Arthritis and Rheumatism Branch at NIH. Paul is interested in myositis and other muscle diseases, including Pompe Syndrome, which continues to dominate his interest.

Roland Owens, Ph.D  Dr Owens is the Assistant Director of the NIH Office of Intramural Research and he is also chief of the Molecular Biology section in the Laboratory of Molecular and Cellular Biology in the National Institute of Diabetes and Digestive and Kidney Diseases at NIH.  Dr. Owens is a co-inventor on two patents involving AAV gene therapy applications.

The meeting was organized by ME/CFS patient Robert Miller.  Robert opened the session, which was originally scheduled for 30 minutes, but went for 1 hour, with his own testimony, which highlighted the two key issues which the majority of people with ME/CFS identify; the fostering of trust between patients and the medical community, and the need for more funding in the area of ME/CFS research.

During the question and answer period, Dr Gottesman explained that his department received 10% of the funding that was issued to the NIH.  The Office of Intramural Research was where internal research within the NIH took place, and that the associated funding was used to complete what he termed as 'higher risk' research.

It was discussed how patients were already looking at options for antiretroviral treatment and were on these drugs due to desperation.  Gottesman reiterated how dangerous it is for individuals to investigate and try antiretrovirals as clinical trials have yet to take place.

According to Rivika Solomon, who shared a transcript of the meeting, (link below), Patients and NIH officials plan to meet again in three months. If anyone has further information regarding this meeting, please don't hesitate to add comments, links or notes below.

Links: 

Transcript/notes from the meeting

References:

Just Garcia Hill (2010).  Owens, Roland, A., PhD.  Retrieved 19 September 2010 from: http://jgh.hunter.cuny.edu/index.php/component/content/article/6-biographies/95-owens-roland-a-phd.html?directory=18

National Institutes of Health (2010). The NIH Almanac - Historical Data. Retrieved 19 September 2010 from: http://www.nih.gov/about/almanac/historical/deputy_directors.htm#gottesman

National Institute of Arthritis and Musculoskeletal and Skin Disease (2010). Branch Overview: Paul Holtz.  Retrieved 19 September 2010 from: http://www.niams.nih.gov/Research/Ongoing_Research/Branch_Lab/report_individual.asp?id=569&Branch_LabID=25&email=plotzp

SUMMARY OF MEETING WITH NIH OFFICIALS AND CFS PATIENTS AND FAMILIES. SEPT 7, 2010. Retrieved 19 September 2010 from:  http://www.facebook.com/notes.php?id=663314516&notes_tab=app_2347471856#!/notes/jan-laverick/summary-of-meeting-with-nih-officials-and-cfs-patients-and-families-sept-7-2010/152105768147060

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