Over the years, erring on the side of caution, many CFIDS/ME specialists have suggested that patients DO NOT give blood. Recently published research on the new XMRV retrovirus by the collaborative team from the Whittemore Peterson Institute (WPI) in Reno, NV, National Cancer Institute in Frederick, MD, and the Lerner Research Institute at the Cleveland Clinic Foundation in Cleveland, OH has brought the subject of blood donation to the foreground again. This study raises three major issues, as follows:

• Prevalence of this retrovirus will not be fully realized until the WPI study is replicated. The study cohort included a sampling of domestic and international samples, but it is still too early to know how widespread this virus is in CFIDS/ME patients and the general population.


• Transmission of this retrovirus is also not fully understood at this time. Preliminary findings (i.e. cell cultures) have shown that patient-derived XMRV is infectious and transmission from infusions of infected blood is thought to be possible. Dr. Daniel Peterson spoke about this study on behalf of the Whittemore Peterson Institute. On several occasions, he expressed concern about the safety of blood supply.


• Detection methods for XMRV must be standardized, immunological assays. Future research will be equivocal unless standard methods are consistently used in future studies. This point was emphasized by Dr. John Coffin, a Professor of Molecular Biology and Microbiology at Tufts University, Boston who had been invited to speak at the recent CFSAC meeting. Dr. Coffin provided a perspective on XMRV and other human retroviruses (i.e. HTLV and HIV) from his forty-plus years in retroviral research, on such points as characteristics and mutation rates of some of these viruses. What he found unique about XMRV was how relatively easy it was to isolate this live retrovirus in a high percentage of CFIDS patients. Again, this raises many questions and prompts the need for further research regarding the implications of this particular retrovirus. Dr. Coffin warned patients against rushing out and getting their blood tested for XMRV at random laboratories with unknown standards and methods.

Considering the status of the research and the questions that have been raised, the general recommendation is that patients with CFIDS/ME do not give blood.