CFSAC Meeting - Federal Response to XMRV

oerganix

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My email answered by Wanda Jones

I emailed her, saying thank you for the webcast and telling her that this is the first time in 27 years that I have felt like my government gave a damn about my suffering with this illness. This is what she replied:

"Thank you, Lilly. I'm hopeful I can shake some things loose; that's my history, and I don't plan to give up. You and many like you who take time to email keep me energized. Take care. Wanda"

Let's keep Ms. Jones and others energized by contacting them with praise when they do something good.
 

acer2000

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Underwhelming to say the least. Dr. Hanna gave the impression during the blood supply question that she was out of her depth. Heads were shaking in amazement in the WPI seats (Harvey, Annette, Dr. Ruscetti) when she stated we didn't have enough evidence yet to determine whether ME/CFS patients should give blood! Someone later pointed out that the National Cancer Institute stated that ME/CFS patients should not give blood!
I think the only common sense answer to this one is the same answer that should have been given to any CFS/FMS patient if they try to give blood - DON'T. Just because we "don't know" what causes this illness doesn't mean its not infectious. The best idea is to err on the side of caution and not give blood - regardless of what the cause ends up being. The same should be said for any illness of uncertain etiology such as MS, RA, Lupus, etc..

From the WPI facebook page (yeah I know) - http://www.facebook.com/note.php?note_id=165442553025 :

Xenotropic Murine LeukemiaVirus-Related Virus (XMRV)
Blood Safety and Availability
Office of Public Health and Science
Department of Health and Human Services (HHS)


Jerry A. Holmberg, PhD, SBB
October 30, 2009

The Office of Public Health and Science’s Blood Safety and Availability is aware of the recent literature suggesting linkage of chronic fatigue syndrome to a possible contagious rodent retrovirus, XMRV. XMRV has also been associated with an aggressive form of prostate cancer. Antibodies against the virus have been detected in 3.7% of healthy controls in a study of a small number of individuals. Currently there is no commercially available test for infection with XMRV. While there is no known association of CFS or prostate cancer with history of transfusion, the finding that the virus is associated with white blood cells has led some to question whether XMRV could be transmitted by transfusion and might therefore pose a threat to the health of blood recipients and potentially also transplant recipients.

The HHS Blood Safety Committee works with all the PHS agencies (i.e., CDC, FDA, HRSA, and NIH) to ensure the safety and availability of blood products as well as transplantation safety. Under the leadership of that committee, steps are being taken to investigate the blood safety threat from XMRV and the potentially protective role of white cell removal, which is performed on approximately 70% of blood. An interagency Emerging Infectious Diseases working group that reports to the Blood Safety Committee is currently assessing the literature on XMRV, conducting meetings with experts on this retrovirus, and interacting with groups that could study the question of blood safety. A report is expected within several weeks. In particular, the National Heart Lung and Blood Institute Retrovirus Epidemiology Donor Study-II (REDS-II) investigators are aware of the report in Science and are assessing the prevalence of XMRV in blood donors to determine whether studies aimed at evaluating transfusion-transmission rate are warranted using NHLBI’s repositories of donor and recipient blood samples.

HHS will remain vigilant in assessing the safety of the blood supply and developing interventions as appropriate.
 

Marylib

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A few weeks, huh?

A report from the Blood Safety People is due in a few WEEKS? How interesting and proactive of them.

I know this belongs back on the advocacy thread, but I really really want to get a bus load of people to a blood bank in DC. Soon. First we stop by the blood supply safety office, to let them know what we are doing. Then we tell the media. Then we go to the blood bank and insist that curtains be drawn before we donate. We take one video cam and reporter in with us and do a countdown before our possibly tainted XMRV drips into the national blood supply...Let's see if anyone tries to stops us. Either way, it will be great and will keep us in the news.

Marylib, armchair activist
 

citybug

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I think we've nobly kept our blood out of the supply because we knew it was something bad we had, even though no one else knew.
I think they'll find the 3.7% general population amount.
It's very encouraging that they are looking. Maybe we could do a poll?

http://www.iGive.com/WhittemorePeterson