For those of us with Chronic Fatigue Syndrome, the recent conference held by the National Institutes of Health was a pretty big deal. On April 7 and 8, 2011, the NIH held a two day State of Knowledge workshop on CFS.
According to the NIH, the goal of the workshop was to bring together subject experts to discuss aspects of myalgic encephalomyelitis (ME) and CFS, and identify gaps in present knowledge and potential opportunities for future biomedical research.
The scientific team from the Whittemore Peterson Institute for Neuro Immune Disease was led by Judy Mikovits, Ph.D. Mikovits received her Ph.D. in Biochemistry and Molecular Biology at the National Cancer Institute in Frederick, Maryland. As a cell biologist, a molecular biologist and a virologist, Mikovits has researched the response of the immune system to retroviruses and herpes viruses.
At the NIH conference, Mikovits presented research findings as to how patients manufacture XMRV antibodies, and discussed the ways in which XMRV impacts the immune system. She endorsed the goal of finding ways to help those suffering from CFS with the data presently available.
John Coffin, Ph.D., was at the conference to present work from his lab and from the National Cancer Institute. Coffin was Director of the NCI's HIV Drug Resistance Program in 1997. He has served on several national committees, participating in the review and establishment of policies regarding retroviruses.
At the XMRV workshop, Coffin indicated that the retrovirus may have been inadvertently created in the lab. Research on the growth of human cancer tissue in mice may have tainted patient samples.
Coffin addressed tensions within the CFS community, where many of its members have been waiting for decades for any kind of breakthrough in CFS research. He reassured this community that the scientists were dedicated and conscientious in their search.
Moderating the proceedings at the NIH conference was Harvey Alter, one of the scientists who found retroviruses in people with Chronic Fatigue Syndrome. Alter joined the National Institutes of Health in 1961 as a clinical associate. He was involved in the detection of the hepatitis B virus, and led a project that would eventually reduce the risks of getting hepatitis through transfusion. He went on to facilitate blood donor screening which has since dramatically reduced transfusion-transmitted hepatitis.
Investigation concerning XMRV and CFS is ongoing. NCI is presently doing research on patients who were found to be XMRV-positive. Other research concerning the safety of the blood supply is looking into the possible presence of the retrovirus among people with CFS and a healthy control group.
Members of the CFS community who were hoping for decisive information and answers to the unrelenting conundrum of CFS may have been disappointed by the lack of consensus. But for many of us, the ongoing scientific research and discussion is refreshing and a reason to continue to hope, conflicting data and unanswered questions notwithstanding.
At NIH Chronic Fatigue Syndrome Conference, XMRV Debate Heats Up
XMRV at the NIH State Of Knowledge Workshop (SOK): The Mikovits - Coffin Debate
HIV Drug Resistance Program: John M. Coffin, Ph.D.
State of the Knowledge Workshop Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Research
NIH Clinical Center: Senior Staff: Harvey Alter, MD
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Four years ago, I found treatment that worked for me, and now I am making a comeback.
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