Information provided to the ME Association by Dr Charles Lapp – Hunter Hopkins Centre, Charlotte, USA.
You have probably already heard that Dr. Dan Peterson and the Whittemore-Peterson Institute reported in Science ( Oct 2009 ) that 97% of blood specimens stored since the CFS outbreaks of 1984-1986 were positive for a new retrovirus called XMRV. This finding raised several questions: (1) Is this for real? (2) Does XMRV just like people with CFS or does it cause the illness? (3) And if it causes CFS, what drugs can treat it?
Sadly, subsequent studies have failed to confirm the association of XMRV with CFS (Erlwein, 2010; Groom, 2010, van Kuppeveld, 2010). Many argue that follow-up studies are tainted by the patient population studied and the methodologies used. For example, XMRV may only occur in a subgroup of severe CFS patients. Subjects from the Science paper had disabling fatigue, cognitive deficits, and reproducible immunological abnormalities (such as abnormalities of RNase L, low natural killer cell cytotoxicity, and elevated cytokines).
XMRV may also have a distinct geographical distribution. For example, in prostate cancer patients, XMRV has been detected in North America while not detected in European subjects. Two of the negative CFS studies were performed in the United Kingdom (Erlwein, 2010; Groom, 2010), where patient selection is different than in the USA.
Finally, the negative papers may have used diagnostic methods to detect XMRV that were either different or deficient.
To help resolve this quandary, a pharmaceutical company is planning a study that will evaluate CFS patients with characteristics similar to the Science paper. Ethics board approval is pending, but we expect this study to begin shortly.
Specimens for this study will be obtained through the SolveCFS BioBank initiated by the CFIDS Association based on referrals of patients who meet study criteria from Hunter-Hopkins Center as well as Drs. Klimas (Miami), Bateman (Salt Lake) and Gluckman (Philadelphia) in order to sample subjects from diverse geographic locations.
So far no one has been able to corroborate the Whittemore-Peterson results, but we remain hopeful that by choosing the right subjects and the right techniques, this planned study will be able to confirm Dr. Peterson’s findings. Then work can begin to understand how XMRV affects PWCs, and how we could possibly treat it.
ADDITIONAL INFORMATION RECEIVED FROM THE CFIDS ASSOCIATION OF AMERICA
March 31, 2010
We hope that you agree that adhering to protocols established for confidentiality, privacy and the ethical conduct of