CFIDS ASSOCIATION OF AMERICA COMMENDS AABB FOR ADDRESSING
PUBLIC HEALTH CONCERNS
International Organization Issues Guidelines for Blood Donations
By People With Chronic Fatigue Syndrome
The CFIDS Association of America commends the AABB (formerly the American Association of Blood Banking) for its actions to protect the safety of the nation’s blood supply by recommending that blood collectors actively discourage potential donors who have been diagnosed by a physician with chronic fatigue syndrome (CFS), chronic fatigue and immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (M.E.) from donating blood through the use of donor information materials made available at the donation site.
In a bulletin released today, June 18, 2010, to its member blood collection centers, the AABB recommends that blood collecting organizations make educational information available regarding the reasons why an individual diagnosed with CFS should not donate blood or blood components. The educational materials include a poster and handout for potential donors that requests that individuals diagnosed with CFS by their physician not donate blood.
These interim recommendations are made in response to the October 2009 publication of a paper in the journal Science that discovered xenotropic murine leukemia virus-related virus (XMRV), a retrovirus previously linked to prostate cancer, in 67 percent of 101 CFS patients and four percent of 218 healthy controls. The findings raised concerns about a possible role for XMRV in CFS. Several other infectious agents have been investigated in CFS, but no single causative agent has been identified.
While subsequent studies conducted in Europe have failed to detect XMRV in the blood of CFS patients, efforts to duplicate the findings of the original Science study and to develop reliable assays to detect XMRV are underway at several institutions in the United States and other countries.
“The CFIDS Association applauds the AABB for its leadership in responding to questions about the safety of the general blood supply,” says Kimberly McCleary, CFIDS Association president and CEO. “Our blood supply is dependent on donations from healthy volunteers. Given the concerns for patient health on both sides of the donation equation, the AABB’s guidance to blood collection center staff will ensure the integrity of that supply is maintained while more research is conducted into CFS and XMRV.”
Definitive answers to determine the level of risk of transmission of XMRV by individuals with CFS and, to a lesser extent, individuals who have or have had prostate cancer, are not yet available. In light of this knowledge gap, the Canadian Blood Services, Australian Red Cross and New Zealand Blood Services earlier this year announced changes in their respective blood donor deferral policies to indefinitely defer all potential donors who volunteer that they have a history of CFS in response to general health questioning. Individuals in these countries will be indefinitely deferred, regardless of whether or not they are experiencing CFS symptoms on the day they present for donation.
In May 2010, the U.S. Health and Human Services Chronic Fatigue Syndrome Advisory Committee (CFSAC) recommended to the Assistant Secretary of Health that blood collection facilities indefinitely defer donors with a history of, or with active, CFS through a donor screening question specifically for CFS.
“The CFIDS Association of America has explicitly advised patients against donating blood or organs for many years, a policy the board of directors reaffirmed in May following the CFSAC’s recommendation,” McCleary said. "At the same time, the most recent survey conducted by our organization shows that more than six percent of patients diagnosed with CFS have given blood at least one time following their diagnosis, underscoring the need for greater education and awareness."
The CFIDS Association's guidance to patients states:
The CFIDS Association of America reiterates its long-standing recommendation urging that individuals with CFS voluntarily not donate blood or organs. This recommendation is based on issues of blood donor safety and blood recipient safety. Research has demonstrated that orthostatic intolerance, low blood volume and infections are common in CFS. Until more is known about the role of various infectious agents in CFS, it is prudent for individuals with a past or present diagnosis of CFS to refrain from giving blood and donating organs to protect the safety of the blood and transplant organ supply for all recipients.
The AABB formed an Interorganizational Task Force on XMRV in December 2009. It is charged with reviewing the available data to assess and or mitigate the risk of XMRV transmission through blood and blood components and develop appropriate messages to donors, recipients and the public. The Task Force is comprised of representatives from the blood community; patient advocacy representatives, including McCleary; XMRV subject matter experts; and liaisons from government agencies. AABB's membership consists of nearly 2,000 institutions and 8,000 individuals in more than 80 countries.
More information about the CFIDS Association’s recommendations regarding CFS patients and blood donation is available at http://www.cfids.org/blood.asp. Information is also available in an XMRV Fact Sheet from the AABB.
This week, media outlets have reported on news of the forthcoming statement, blood safety issues and the status of research into XMRV. Recent coverage has been affirming of the reality and seriousness of CFS, while pointing to the need for more research. Reports published this week include:
Wall Street Journal Health Blog
"Chronic fatigue sufferers may be asked to avoid donating blood," Amy Dockser Marcus, (June 14, 2010)
Time.com Wellness Blog
"Giving blood: no gay men, chronic fatigue patients?" , Tiffany O'Callaghan (June 15, 2010)
"Controversy continues on whether XMRV retrovirus contributes to chronic fatigues syndrome," Kathleen Louden, (June 17, 2010)
An article published on June 8 in the Chicago Tribune, "Hope outrunning science on CFS," has been picked up by other large daily newspapers including the LA Times and the Seattle Times, as well as many other papers.