Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
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The CAA sent an email and posted to their Facebook page a message which mentioned a new Federal Task Force has been set up in regards to the XMRV/CFS findings published in Science.
"In recent weeks, the U.S. Department of Health and Human Services has formed an interagency task force that is meeting regularly to appropriately replicate the CFS studies, address validation studies, development of appropriate screening and diagnostic tests, and to address the safety of the blood supply. There has not yet been a formal statement from the Department about this interagency effort, but the National Cancer Institute (part of the National Institutes of Health) posted an informational question-and-answer page about XMRV on November 18, 2009. More information from the federal agencies is expected soon, especially on the topic of blood safety."
http://www.facebook.com/notes/the-cfids-association-of-america/cfidslink-extra-getting-right-and-giving-thanks/217326755538
In an effort to find out more information on this task force, a member of the Phoenix Rising Forums emailed Dr. Wanda Jones, Executive Secretary to the CFSAC, who replied with the following-
"FDA, NIH, CDC--the agencies responsible for blood safety, as well as several non-Federal groups. The team is drawn from the retrovirus expertise of the agencies. They are developing several "panels" of thousands of samples drawn from blood donors, from CFS patients, people with other diagnoses, etc. They are taking fresh as well as repository whole blood samples, not serum. They have standardized reagents, working with Judy Mikovits. The work is just beginning."
In subsequent messages, Dr. Jones added-
"BTW, I forgot to mention the non-Federal components are largely those of the longstanding, NHLBI-supported(National Heart Lung and Blood Institute) REDS(Recipient Epidemiology and Donor Evaluation) Study."
"It's a large group, I have no idea myself who all of them are; often 50 people on the conf calls. They are good scientists, among the best."
The REDS study, I believe and I could be wrong, is a group set up in response to the HIV/AIDS epidemic in an effort to track blood donors and recipients to keep track of possible transmission through the blood supply. They keep samples from blood donors and recipients to see if anyone became infected from blood transfusions. So there should be a readily available supply of pre- and post-transfusion samples which should indicate whether XMRV got transmitted through the blood supply. Posters on another forum also mentioned the CFIDS Association should be announcing further details in the coming weeks, possibly in deference to an official announcement from the federal agencies involved.
"In recent weeks, the U.S. Department of Health and Human Services has formed an interagency task force that is meeting regularly to appropriately replicate the CFS studies, address validation studies, development of appropriate screening and diagnostic tests, and to address the safety of the blood supply. There has not yet been a formal statement from the Department about this interagency effort, but the National Cancer Institute (part of the National Institutes of Health) posted an informational question-and-answer page about XMRV on November 18, 2009. More information from the federal agencies is expected soon, especially on the topic of blood safety."
http://www.facebook.com/notes/the-cfids-association-of-america/cfidslink-extra-getting-right-and-giving-thanks/217326755538
In an effort to find out more information on this task force, a member of the Phoenix Rising Forums emailed Dr. Wanda Jones, Executive Secretary to the CFSAC, who replied with the following-
"FDA, NIH, CDC--the agencies responsible for blood safety, as well as several non-Federal groups. The team is drawn from the retrovirus expertise of the agencies. They are developing several "panels" of thousands of samples drawn from blood donors, from CFS patients, people with other diagnoses, etc. They are taking fresh as well as repository whole blood samples, not serum. They have standardized reagents, working with Judy Mikovits. The work is just beginning."
In subsequent messages, Dr. Jones added-
"BTW, I forgot to mention the non-Federal components are largely those of the longstanding, NHLBI-supported(National Heart Lung and Blood Institute) REDS(Recipient Epidemiology and Donor Evaluation) Study."
"It's a large group, I have no idea myself who all of them are; often 50 people on the conf calls. They are good scientists, among the best."
The REDS study, I believe and I could be wrong, is a group set up in response to the HIV/AIDS epidemic in an effort to track blood donors and recipients to keep track of possible transmission through the blood supply. They keep samples from blood donors and recipients to see if anyone became infected from blood transfusions. So there should be a readily available supply of pre- and post-transfusion samples which should indicate whether XMRV got transmitted through the blood supply. Posters on another forum also mentioned the CFIDS Association should be announcing further details in the coming weeks, possibly in deference to an official announcement from the federal agencies involved.
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