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Chronic Fatigue Syndrome: NIH Held State of Knowledge Workshop On CFS

By HERWriter
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Chronic Fatigue Syndrome related image Photo: Getty Images

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

Researcher Profiles

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.

http://www.ncubator.ca and http://ncubator.ca/blogger

Add a Comment2 Comments

EmpowHER Guest

I'd like to see more research conducted towards the latest findings, "Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome" This to me is a true tangible break through into something that could lead to some real answers into this rotten disease/problem!! This research paper was way too lengthy to include in this post but it's a must read and a must to pursue by all involved in genuinely wanting to crack this mystery!

Link to latest research findings: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017287

April 12, 2011 - 5:24pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Sorry here is a brief on this research article:
A new study shows that spinal fluid can be used to detect proteins that help distinguish patients with Lyme disease from those with chronic fatigue syndrome.

Since both the conditions can cause similar symptoms involve the central nervous system, this could be possible said research team, which was led by Dr. Steven E. Schutzer, of the University of Medicine and Dentistry of New Jersey and Richard D. Smith, of Pacific Northwest National Laboratory.

Until now there were no known biomarkers to distinguish between Lyme disease and CFS, nor strong evidence that the central nervous system was involved in the two conditions, the study authors noted.

For the study the team analyzed spinal fluid from 43 patients with chronic fatigue syndrome (CFS), 25 people who had been diagnosed with and treated for Lyme disease, but did not completely recover (neurologic post-treatment Lyme disease, or nPTLS), and 11 healthy people. They found a total of 738 proteins present only in the spinal fluid of CFS patients and 692 proteins found only in the spinal fluid of nPTLS patients. The findings are published online Feb. 23 in the journal PLoS One.

Schutzer said, “One next step will be to find the best biomarkers that will give conclusive diagnostic results… In addition, if a protein pathway is found to influence either disease, scientists could then develop treatments to target that particular pathway.” Smith added, “Newer techniques that are being developed by the team will allow researchers to dig even deeper and get more information for these and other neurologic diseases…These exciting findings are the tip of our research iceberg.”

April 12, 2011 - 5:36pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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