AABB "actively discourages" CFS blood donation in USA!!!

[V99]

http://www.aabb.org/pressroom/Pages/cfsrecommendation.aspx

Recommendation on Chronic Fatigue Syndrome and Blood Donation

The AABB Interorganizational Task Force on Xenotropic Murine Leukemia Virus-Related Virus reviewed the risk of transfusion transmission of XMRV by individuals with chronic fatigue syndrome (CFS). The task force presented its recommendations to the AABB Board of Directors, which approved an interim measure intended to prevent patients with a current or past diagnosis of CFS from donating blood or blood components.

AABB released an Association Bulletin today recommending that, as an interim measure until further definitive data are available, its member blood collectors, through the use of donor information materials available at the donation site, actively discourage potential donors who have been diagnosed by a physician with CFS [also known as chronic fatigue and immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (ME)] from donating blood or blood components.

The task force includes representatives from the blood community, patient advocacy representatives, XMRV subject matter experts and liaisons from several government agencies, including the Office of the Assistant Secretary for Health, the Centers for Disease Control and Prevention, the Food and Drug Administration and the National Institutes of Health.

AABB member institutions are required to follow all federal regulations regarding donor eligibility. At present, there are no specific regulations for deferral of individuals with diseases or syndromes that have been linked to XMRV.

AABB appreciates all individuals who want to donate blood but strongly urges that only those who are eligible and healthy do so.

Last updated: June 18, 2010

 

[V99]

http://www.facebook.com/notes/the-cfids-association-of-america/cfids-assn-commends-aabb-for-todays-action/442217155538

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/xmrvfactsheet.pdf. The AABB’s membership consists of nearly 2,000 institutions and 8,000 individuals in more than 80 countries.

 

[julius]

Fantastic!

 

[dancer]

Woo hoo!!! My hope it that this prompts primary care doctors to have new questions/interest/understanding of ME/CFS.

 

[shannah]

Finally! So this is our Friday afternoon announcement this month eh?

 

[SpecialK82]

Wow - thank God for great news today, let's hope this brings much need attention to CFS!

My husband will probably give blood in the next couple months - he will notice if any new questions are asked - I'll report back. :victory:

 

[V99]

Someone has alerted me that this is not a ban, but a recommendation not to donate. Sorry for the mix up.

AABB released an Association Bulletin today recommending that, as an interim measure until further definitive data are available, its member blood collectors, through the use of donor information materials available at the donation site, actively discourage potential donors who have been diagnosed by a physician with CFS [also known as chronic fatigue and immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (ME)] from donating blood or blood components.

 

[Rivotril]

but what is "actively discourage"?
its not a ban, but it's at least more than just a recommendation, like saying "please do not donate blood if you feel ill", because it implicates some activity by AABB to protect blood supply instead of just passively giving some advice.

 

[V99]

This is what confused me, what are they playing at. Do they think this is some game?

 

[julius]

Yeah, regardless of whether it's a ban or recommendation, it's good for us.

And it points in very positive directions also.

 

[jimbob]

it's a small win, but it is a win I guess. I would like to see something a little bigger come down the pike!!!

 

[V99]

Can someone change the title of the thread please.

 

[Lesley]

AABB member institutions are required to follow all federal regulations regarding donor eligibility. At present, there are no specific regulations for deferral of individuals with diseases or syndromes that have been linked to XMRV.

I believe that this means that they do not have the power to ban people without federal regulations to that effect. They are taking the strongest action they can on their own.

 

[julius]

I believe that this means that they do not have the power to ban people without federal regulations to that effect. They are taking the strongest action they can on their own.

Nice catch! So that answers that question.

But what about the Friday afternoon release?

 

[Cort]

AABB Discourages Blood Collection Groups from Taking CFS Patients Blood

http://www.aboutmecfs.org/Rsrch/XMRVBuzz.aspx

The AABB (American Association of Blood Banks) recommended today that CFS patients be discouraged from giving blood. This was expected given that a few days ago, Dr. Katz an executive vice president of the group, personally recommended that CFS patients not give blood. The AABB did not state that CFS patients not be allowed to give blood; that is apparently in the hands of the FDA, but they recommended that blood collecting organizations provide a poster and a handout that aggressively discourages people with CFS from giving blood. (The AABB is not a small group; their membership includes 2,000 organizations spread across 80 countries. Creating and distributing the materials to all the blood collection centers will obviously cost a nice chunk of money)

The Whittemore Peterson Institute, the CFSAC and the CFIDS Association of America all recommended recommended that CFS patients be not allowed to give blood. (Dr. Klimas has noted that CFS patients with their low blood volumes shouldn't give blood anyway ). A survey by the CFIDS Association indicating that at least 6% of people with CFS had donated since they became ill, undoubtedly helped AABB recognize the Blood Banks had a real problem. This move by the AABB brings the US a least partly into sync with other moves by Australia, New Zealand and Canada to eliminate the risk of cotaminating the blood supply with XMRV until more is definitively known about its incidence in CFS.

More Info: http://www.cfids.org/xmrv/aabb-statement-june10.asp

 

[V99]

It's here Cort http://www.forums.aboutmecfs.org/showthread.php?5752-AABB-blood-ban-in-USA!!!

Could you change the heading, as I originally thought it was a ban. My only excuse being, that it seems odd that it isn't.

 

[Cort]

I moved the thread to the Media Section because it was a press release - it looks OK now.

I guess the US is just very conservative - altho not nearly as conservative as the UK (or Germany or Spain or France, etc. )

 

[V99]

Is this the first time the AABB have actively discouraged donation?

 

[V99]

Yea, just to remind everyone, in the UK the Health Secretary said, "People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), are not able to donate blood until they have fully recovered. " 10th March 2010

 

[Forbin]

Seems like an update of Wikipedia (on XMRV and CFS/ME) should be in order...

[Update: Looks like someone already did it for the CFS page!]