Write to US Congress for Mandated funds for XMRV and CFS Research
It's not getting done by the CDC lets ask for Congressionally Mandated Research Funds. They have patient advocates on the review boards.
From Nancy Klimas http://aboutmecfs.org/Rsrch/XMRVKlimasII.aspx
You go to Congress, they can actually put aside money and there is one really important tool they have. There is something called the Office of Congressionally Mandated Research. This is an Army office. It comes out of the DOD budget, a very healthy budget one might say. The Office of Congressionally Mandated Research and that is absolutely the place where advocacy can put real committed dollars to an illness.
In fact my research right now is funded through the DOD (Department of Defense), Gulf War Illness, through the Office of Congressionally Mandated Research. They are wonderful people, they are very professional, they know how to do peer review properly, they know how to get money into the hands of people who will really spent it in a and boy do they watch how you spend it.
The Office of Congressionally Directed Medical Research Programs (CDMRP) is funded through the Department of Defense (DoD), via annual Congressional legislation known as the Defense Appropriations Act. For most programs, the DoD sends a multi-year budget request to Congress in the form of the President's Budget. However, dollars for the CDMRP are not considered part of the DoD's core mission, and are therefore not included in the DoD's requested budget. Rather, the dollars to fund CDMRP are added every year during the budget approval cycle by members of the House or Senate, in response to requests by consumer advocates and disease survivors.
For more information, contact the CDMRP staff, or see the FAQs on this website.
# Why is the Department of Defense involved in funding this kind of research?
In 1992, a highly visible lobbying campaign by grassroots advocacy organizations, primarily the National Breast Cancer Coalition, increased awareness among policymakers of the need to expand funding for breast cancer research. These consumer groups emphasized the need to fund research in ways that were different from those employed by traditional medical research organizations such as the National Institutes of Health. In response, the United States Congress allocated specific funds for breast cancer research in the Department of Defense appropriations budget. The Department of Defense was chosen because of its long history in performing medical research studies and because its administrative structure was designed for flexible and quick responses to changing needs and priorities. The success of this effort has resulted in an increase in the number of disease research programs for which Congress has mandated funding through the Department of Defense. As of 2009, many new programs have been added to CDMRP�s portfolio and include Peer Reviewed Cancer, Orthopedic, Spinal Cord and Lung Cancer.