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ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

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PO Box 322,
Modbury North,
South Australia 5092

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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

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CFIDS Association commends AABB action on CFS

Tuesday 22 June 2010

CFIDS Association of AmericaFrom the CFIDS Association of America:

CFIDS Association of America commends AABB for addressing public health concerns

International Organization Issues Guidelines for Blood Donations By People With Chronic Fatigue Syndrome

CHARLOTTE (June 18, 2010) – 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) and 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 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.

"The CFIDS Association applauds the AABB for its leadership in responding to questions about the safety of the general blood supply," Kimberly McCleary, CFIDS Association president and CEO, said. "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."

These recommendations are being 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.

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.

In May 2010, the U.S. Health and Human Services Chronic Fatigue Syndrome Advisory Committee (CFSAC) recommended to the Assistant Secretary for 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.

More information about the CFIDS Association's recommendations regarding CFS patients and blood donation is available at http://www.cfids.org/blood.asp. A resource page with links to other information about XMRV is available on the Association's website at http://www.cfids.org/xmrv/default.asp. Links are updated regularly.

The AABB's statement about its bulletin is posted at http://www.aabb.org/pressroom/Pages/cfsrecommendation.aspx. Its XMRV Fact Sheet can be found at http://www.aabb.org/resources/bct/eid/Documents/xmrv factsheet.pdf. The AABB's membership consists of nearly 2,000 institutions and 8,000 individuals in more than 80 countries.

The above originally appeared here.

 


 

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