Guidance for Persons with ME/CFS for Safe Blood Donation

Since the latest news of the XMRV was announced, ME/CFS researchers, patients, and CFS organizations are trying to find out as much information as possible.  The CFIDS Association published the other day on Facebook regarding blood donation and organ donation with the latest XMRV news.  For years, organizations like the CFIDS Association has been warning us to not give blood or donate organs due to the fact that the cause of ME/CFS has been unknown.  In light of the latest XMRV news, they want to reiterate that information.  Here is what the CFIDS Association has to say about blood donation:

There are numerous medical reasons why people with CFS should not donate blood (medications, low blood volume, orthostatic intolerance, latent and reactivated viral infections, etc.). The CFIDS Association of America has long advised against CFS patients donating blood or making organ transplants. Commenting at the Oct. 29, 2009 meeting of the federal CFS Advisory Committee (CFSAC), Dr. Nancy Klimas, a renowned expert CFS clinician and researcher, asked that CFS patients not give blood to protect their own health and that of others. The National Cancer Institute has reinforced the need for CFS patients to refrain from making blood donations in its interim guidelines and more recent Q&A on XMRV.

Guidelines in the United Kingdom and other countries have restricted CFS patients from donating. While no formal policy exists in the U.S., eligibility criteria state that blood donors must be “healthy,” over age 16 and at least 110 pounds. “Healthy” is defined by the Red Cross as: “feeling well and able to perform normal activities. If you have a chronic condition such as diabetes or high blood pressure, ‘healthy’ also means that you are being treated and the condition is under control.” Taking various medications can also be a barrier to blood donation. The Food and Drug Administration (FDA) maintains a list of prohibited medications.

Following the October 2009 publication of research linking CFS to a retrovirus, XMRV, and a 4 percent XMRV-positive rate among healthy controls, concerns surfaced about the safety of the general blood supply. Dr. Jerry Holmberg of the Department of Health & Human Services (DHHS) Office of Public Health and Safety spoke at the Oct. 30 meeting of the CFSAC. Since that meeting, DHHS has formed the Blood XMRV Scientific Research Working Group to address these issues.

The United States’ blood supply is regulated by the Food and Drug Administration (FDA), but it is dependent on donations of blood from healthy volunteers collected at community blood centers, hospitals, by the Red Cross and, in some areas, for-profit entities. Blood is perishable and the need for blood donations is perpetual and increases in times of disaster and war. Although the safety of the blood supply relies on proper collection measures, including screening for health conditions at the time of donation through an interview and health history, tightly controlled testing measures further strengthen blood safety, even after it leaves the collection center.

According to the American Association of Blood Banks (AABB), after blood is drawn, it is tested for blood type (ABO) and RH type, as well as for any unexpected red blood cell antibodies that may cause problems for the recipient. Screening tests performed are listed below:

Hepatitis B surface antigen (HBsAg)

Hepatitis B core antibody (anti-HBc)

Hepatitis C virus antibody (anti-HCV)

HIV-1 and HIV-2 antibody (anti-HIV-1 and anti-HIV-2)

HTLV-I and HTLV-II antibody anti-HTLV-I and anti-HTLV-II)

Serologic test for syphilis

Nucleic acid amplification testing (NAT) for HIV-1 and HCV

NAT for West Nile virus (WNV) (this test is not required by FDA)

Antibody test for Trypanosoma cruzi, the agent of Chagas’ disease (this test is also not required by FDA)

If the test result from a donated unit of blood is abnormal for any of these disease markers, the unit is discarded and the donor is notified. The donor’s name is then added to a donor deferral list and is prohibited from donating blood indefinitely.

These guidelines are intended to help you make decisions about whether to donate blood and/or organs while more research is conducted that may lead to new restrictions. Staff or volunteers at local blood drives or collection centers are unlikely to be as informed as you are about the general health risks associated with CFS or XMRV, and you may have to decline participation more than once.

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