CDC's Response to Question About Blood Donation, XMRV & CFS

ixchelkali

Senior Member
Messages
1,107
Likes
275
Location
Long Beach, CA
I recently sent the the CDC an e-mail inquiry about their XMRV Question & Answer webpage, specifically about the question "Should an individual with diagnosed chronic fatigue syndrome donate blood?" Here are my original e-mail to them and their reply:

My Question:
Regarding http://www.cdc.gov/ncidod/dhqp/bp_xmrv_qa.html#9



Now that the AABB has recommended that, as an interim measure until further definitive data are available, its member blood collectors "actively discourage potential donors who have been diagnosed by a physician with CFS" from donating blood, the CDC's Question and Answer About XMRV is no longer current.
  • Should an individual with diagnosed chronic fatigue syndrome donate blood?
  • At the present time, there are no specific recommendations to defer donors who have chronic fatigue syndrome.
I'm wondering when this will be updated?

CDC's Reply:
Thank you for your inquiry to CDC-INFO. We are sorry for the delay in responding to your email. A recent high volume of inquiries has slowed our response time. Your request for information on when the XMRV question regarding blood donation will be updated on the website was forwarded to subject matter experts within CDCs Division of Healthcare Quality and Promotion. We have provided you with their response below.

Thank you for clarification of your question. AABB's new recommendation for member blood centers does not constitute a blood donor "deferral". Our understanding is that blood donors will be given educational materials and discouraged from donating if they recall that their physicians have diagnosed them as having Chronic Fatigue Syndrome (CFS). There is currently no Food and Drug Administration (FDA) guidance concerning deferral of CFS patients, and AABB is not currently recommending that blood donors be asked if they have CFS. That being said, some blood centers on their own (apart from AABB standards/recommendations or FDA guidance) may put new deferral measures in place because of concern about a potentially infectious etiology of CFS.

We will consider a change to the website to clarify, and thank you for pointing it out.

Thank you for contacting CDC-INFO Contact Center. Please do not hesitate to call 1-800-CDC-INFO, e-mail cdcinfo@cdc.gov or visit http://www.cdc.gov if you have any additional questions.
 

CBS

Senior Member
Messages
1,513
Likes
849
AABB is not currently recommending that blood donors be asked if they have CFS
Is this true?

Here's the link to the AABB recommendation: http://www.aabb.org/pressroom/Pages/cfsrecommendation.aspx

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
The AABB "intends to prevent" CFS patients from donating.
Blood donation sites are to use "donor information materials" to "actively discourage" donations from CFS patients.
Blood donations sites must follow all Federal regulation
So far, there are no federal regulations specific to CFS

AABB is not currently recommending that blood donors be asked if they have CFS
Technically it's true we are not being asked if we have CFS but instead we're being told that if we have been diagnosed with CFS to not donate.
The last two bits don't tell me anything. What other guidelines do the donation sites typically to follow? Are there other rules they are required to follow?
 

julius

Watchoo lookin' at?
Messages
785
Likes
5
Location
Canada
I think they are saying that they should show the donor the material, and if the donor volunteers the information that they have CFS then they should be discouraged. But they are not asking the specific question "do you have CFS?"
 

ixchelkali

Senior Member
Messages
1,107
Likes
275
Location
Long Beach, CA
Yeah, the way the CDC put it, "blood donors will be given educational materials and discouraged from donating if they recall that their physicians have diagnosed them as having Chronic Fatigue Syndrome" doesn't sound much like actively discouraging people from donating. Waiting for them to mention it sounds distinctly passive, in fact.

I wonder whose version is closer to the true story? Was the AABB press release and/or recommendation just a feel-good PR bit? Or is the CDC reluctant to tell ME/CFS patients that they shouldn't donate blood because it might imply they are physically ill? Or both?

Meanwhile, I'm trying to picture an ME/CFS patient who doesn't recall being given that diagnosis? Like, "Oh yeah, it slipped my mind that I've been ill and in pain for 10 years." I know that I've got some memory impairments, but I'm reminded of that often enough that I'm not apt to forget!
 
Messages
1,471
Likes
5
Location
UK
The CDC are playing games with semantics. The fact that no one has changed this information on their website clearly demonstrates their disbelief in CFS, and any possible connection to a biological cause. There is no way they would not have known about AABB recommendation, or their current XMRV page. They are probably quaking in their boots right now. Serves them right, the ignorant fools.

I guess the CDC thinks you can look at someone and see if they have CFS. Yes, now what is it again, blue hair, red back, blond pigtails. Yes, lets rely on the patient population to protect the blood supply and their CDC asses.

Sorry CDC but your time is up.
 

ixchelkali

Senior Member
Messages
1,107
Likes
275
Location
Long Beach, CA
I wonder what they would do if we had a nationwide ME/CFS Day of Donation? LOL! I'm not suggesting it; it would backfire on us, but it's kind of annoying that they're relying on our integrity when they don't have the... er... guts to say what they think.
We can save that threat for when we want something REALLY big from them, like research funding or treatments.;)

I believe they're right about our integrity. Those of us who have this disease don't want to give it to others. But not all ME/CFS patients are tied into the patient groups for news. Some of them rely on sources like the CDC website, or on doctors who get their info from the CDC website. Probably the more seriously ill aren't donating blood, because they can barely get through their day. But some of the higher functioning patients, or those who have largely recovered, may still be trying to do their bit to help society by donating.

Meanwhile, until the research is published, the people in charge can avoid action, can avoid responsibility, by saying "we didn't know." As more lives are demolished.

I guess we'll just have to see what the FDA says when their study is published. Waiting, waiting, waiting...
 

Tammie

Senior Member
Messages
793
Likes
20
Location
Woodridge, IL
Meanwhile, I'm trying to picture an ME/CFS patient who doesn't recall being given that diagnosis? Like, "Oh yeah, it slipped my mind that I've been ill and in pain for 10 years." I know that I've got some memory impairments, but I'm reminded of that often enough that I'm not apt to forget!
Yeah, that phrase sure caught my attention, too.....if they recall - oh brother!
 

bullybeef

Senior Member
Messages
488
Likes
138
Location
North West, England, UK
This is becoming a running theme. Like here in the UK, people with ME are deferred but not publicly, or officially. They (the CDC & UK DOH etc) will not issue a statement of admission that ME is in all probability transmissible via blood transfusions. If they do, they a admitting mistakes have been made in the past.

Their sole purpose is the save face, and not to protect the blood supply.
 

justinreilly

Senior Member
Messages
2,498
Likes
1,225
Location
NYC (& RI)
Jerry Holmberg "the federal blood guy" already admitted at the May 2010 CFSAC meeting that XMRV is now in the blood supply. He volunteered something like "it would be foolish to think that XMRV is not in the blood supply".

The only explanation for the XMRV blood working group not recommending a ban on ME patients is (1) the group doesn't believe that XMRV is in ME more than normals or (2) the believe XMRV IS in ME but they are part of the cover up/ they care more about avoiding 'alarm' and questions in the short term than public health. Given the NIH/FDA findings, it has to be (2).

Apparently the working group has come under some strong influence- probably Reeves, Fauci, Hanna etc. insisting up to them it's all BS. This tactic has always worked for them so far. But now with the NIH/FDA study results, it's clear that it's gone beyond the blood working group having the wool pulled over their eyes by the usual criminals. It's clear the working group has always known about the conspiracy and supports it or they have been seriously threatened by Fauci, and who know who else, not to act.

The blood working group may be a weak point in the conspiracy though, as these people are, I'm sure, a lot less committed to it than the likes of Reeves and Fauci. I think we need to keep the pressure up on the group and it's upline chain of command and maybe someone will crack at somepoint and be a whistleblower (but i guess we should be careful what we wish for as we've already got an official 'whistleblower' in Reeves- what a travesty!) as more and more info comes out.