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Posted at 4:23 PM ET, 12/ 3/2010

Red Cross bars chronic fatigue patients from donating blood

By Rob Stein

The American Red Cross announced Friday that it is barring people with chronic fatigue syndrome from donating blood to reduce the risk of transmitting a virus that has been associated with the disease.

The virus is known as xenotropic murine leukemia virus-related virus or XMRV. Some studies have found that people with chronic fatigue syndrome are more likely to carry the virus. But it remains far from clear whether the virus causes the disease.

Nevertheless, the Red Cross decided to bar people with the syndrome from donating "in the interest of patient and donor safety," according to an announcement from the organization.


A man gives blood for the Red Cross. (James A. Parcell-For the Washington Post)

"There is currently insufficient data to conclude that XMRV is transmitted through blood transfusion. However, the National Heart, Lung and Blood Institute (NHLBI) Task force is conducting research to determine the frequency of the virus in the donor population, whether it is transfusion-transmitted, and whether recipients become infected and develop the disease," it said.

Another task force that reviews blood safety for an organization known as the AABB recommended in June that blood collecting organization "actively discourage potential donors who have ever been diagnosed by a physician with chronic fatigue syndrome ... or myalgic encephalomyelitis (ME), from donating blood or blood components. In addition, any donor with symptoms of CFS would be deferred if, on the day of donation, they respond negatively to the question, 'Are you feeling well today?' " the agency said.

The recommendation came after new research strengthened the possible connection between the virus and the syndrome.

"The Red Cross has implemented the AABB recommendations and has gone further to implement indefinite deferral for donors who reveal a history of a medical diagnosis of CFS," the statement said.

The Food and Drug Administration, which regulates blood safety, had no immediate comment on the decision. The agency is convening a panel of outside experts to review the issue later this month.

This post has been updated since it was first published.

By Rob Stein  | December 3, 2010; 4:23 PM ET
Categories:  Chronic Conditions, FDA, blood safety, red cross  
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Comments

I would like to thank the Washington Post for covering this most important decision today.
I believe that XMRV will turn out to be very much like the AIDS virus in terms of the blood supply and the step that the Red Cross took today may save many people from a life of misery. The next step will be making sure that there is no XMRV in the current blood supply, as it was shown to be present in the blood of prostate cancer, breast cancer and other neuroimmune diseases and well as up to 7% of otherwise healthy subjects. Again, thank you for doing your job and reporting on this most important subject.

Posted by: PatMayer | December 3, 2010 4:55 PM | Report abuse

Although much is made over the issue of donating blood just as important is the issue of organ donations.

Because viral loads can be "hidden" in organs even when not detectable in the blood, CFS patients should probably also refrain from donating their organs to anyone but researchers.

And this probably applies regardless of which virus or viruses actually precipitates or perpetuates this disease.

Posted by: KAL6196 | December 3, 2010 5:37 PM | Report abuse

Thank you Washington Post for covering this important topic. Now all we need is a good investigative journalist to open this story wide up. There's years and years and layers and layers of red tape, government neglect and denial, and much greed among insurers to keep this illness stuck in the psychiatric realm. It's been linked to a retrovirus as early as l99l. Someone needs to look into this. The way we've been treated is truly a crime. We have been completely let down by our healthcare system and the agencies set up to protect us. Thank you for getting the word out.

Posted by: hariram | December 3, 2010 5:54 PM | Report abuse

I don't understand this. I was diagnosed with CFIDS ten years ago, before any mention of XMRV, back when epstein barr was a suspect. Are all new patients being screened for XMRV? In other words, I think people like me know we had/have CFIDS but do not know if we have XMRV, and we do not know if it is mutually exclusive. I think this is a rush to judgement (unless someone can explain differently.)

Posted by: karamcguirk | December 3, 2010 6:05 PM | Report abuse

This Retrovirus family was first discovered in the mid 1980s by Drs. Elaine Defreitas, David Bell, and Paul Cheney.
The CDC damaged replication of their patented research and findings intentionally and then the NIH killed off all further funding for this type of research. See Hillary Johnson's book Osler's Web or read her blog with great details at www.oslersweb.com - The whole sorrdid history of what the CDC did to CFS research and this Retrovirus research is in Johnson's book and blog.

Had the CDC NOT damaged research it is possible that millions of people in the world would not have suffered from many diseases and cancers (including breast, prostate, lymphoma, leukemia,,etc) as well as ME/CFS/Fibromyalgia, MS, Autism and possibly other serious cancers and diseases.

Now the American public (and the world really) is finding out what the CDC has done for three decades to damage a group of very sick and disabled people. The CDC and other Federal organizations have done everything in their power to cover-up CFS and this Retrovirus family. But NO more.
They know it is in the blood supply and they must notify the public. However, the Feds are terrified that the public will panic and become enraged at what the CDC, NIH and other Federal health orgs have done to their own people.

Dr. Collins of NIH: WHat about those 40 other deliberate infections that took place during Tuskegee and its 40 year experiment?

CDC: WHY did you hide and cover-up this horrible disease, damage those sick, call them lazy/crazy and not provide any research aside from wasteful psychobabble from Emory University Mind-Body program and ABT Associates (they did bogus surveys at immense cost). What are you COVERING UP CDC and other Federal agencies???? WHAT?

Posted by: ProObama2008 | December 3, 2010 9:27 PM | Report abuse

In response to karamcguirk comment:
"I don't understand this. I was diagnosed with CFIDS ten years ago, before any mention of XMRV, back when epstein barr was a suspect. Are all new patients being screened for XMRV? In other words, I think people like me know we had/have CFIDS but do not know if we have XMRV, and we do not know if it is mutually exclusive. I think this is a rush to judgement (unless someone can explain differently.)"

I hope this helps:

New patients are not being routinely tested for XMRV yet as research is ongoing to find the most reliable means of testing for it - it is hard to find and research on macaque monkeys also showed it can migrate quickly from the blood to invade almost every organ in the body.

This is not a rush to judgement, rather a delayed precautionary measure, which should have been taken a year ago when the Lombardi et al paper was published in Science. They found XMRV in 67% of CFS samples, but over 95% when they later refined their tests for it, and 3.4% of healthy controls.

The NIH/FDA/Harvard team found evidence of MLVs (of which XMRV is a variant) in 86% of CFS samples and 7% of healthy controls, some of whom were blood donors, hence the urgency now for a screening tool for XMRV in the blood supply. Causality has yet to proven but the link is very strong and XMRV is being linked to cancers and other diseases aswell, so caution is highly justifiable.

This is a family of gamma retroviruses that writes itself into the DNA so once you have been infected you have it for life, but it may lie latent until activated/reactivated by another virus. So having Epstein Barr doesn't rule out that you may also be infected with XMRV, but having XMRV doesn't necessarily mean you are showing symptoms; like being being HIV positive without developing full-blown AIDS.

As others have said, the retroviral link with ME/CFS/CFIDS was first discovered nearly 20 years ago but quashed by the CDC, which again "failed" to find XMRV in its own study this year. They used different test protocols and patient cohorts so it was doomed to fail, as the CDCs own William Reeves had predicted it would.

People have so far been tested for XMRV either as part of a research study or have arranged to have the test done themselves. You can find out more at the website of The Whittemore Peterson Institute, a non-profit organisation devoted to finding cures for ME/CFS (CFIDS) and other neuro-immune diseases, which was involved with the XMRV study along with the National Cancer Insitute and the Cleveland Clinic.

Many thanks Rob and The Washington Post for a very clear report on this new development in the unfolding story of ME/CFS and XMRV.

Posted by: JBME | December 4, 2010 8:24 AM | Report abuse

Thanks for posting an article that might really upset the public, Rob. As a patient, we were advised not to give blood since the late 1980's because this disease had all the hallmarks of a retroviral infection. In 1991 we had pictures of the virus, yet the CDC shot it down, just like they did with the HIV virus. They are directly responsible for the contamination of the blood supply for years. Heads ought to roll; the CDC fought it with your money.

Posted by: Marty28 | December 4, 2010 8:58 PM | Report abuse

Note: this disease is not chronic fatigue, as shown in the headline of the article, so the general population does not need to worry. Fatigue is just a symptom that is found in most illnesses and overworked people. The Red Cross is referring to Chronic Fatigue SYNDROME, a neuroimmune disease known around the world for decades as M.E. (Myalgic Encephalomyelitis). The US government's Centers for Disease Control in 1988 tried to change the name to belittle the disease, just like they called AIDS "Gay Men's Disease", and the patients have fought those names ever since. The compromise name for CFS at the moment is ME/CFS. It is a severely debilitating disease, not just being sleepy. And it has recently been found to be highly associated with a retrovirus and a threat to the blood supply, thus the ban from the Red Cross.

Posted by: Marty28 | December 4, 2010 9:30 PM | Report abuse

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Posted by: ghdg91 | December 5, 2010 12:56 AM | Report abuse

Thanks for covering this important topic. Chronic fatigue syndrome - whatever its cause - derailed my career with a major advertising agency in 1987. I was 36. I'm concerned that unless someone provides in this venue and elsewhere a succinct and plausible explanation for the CDC's efforts to dismiss this as an imaginary illness, any statements about their attempts to do so will sound like paranoia. Can anyone provide this explanation?

Posted by: FlatteryOConnor | December 5, 2010 6:21 AM | Report abuse

Thanks for the interesting news about CFS and blood donation. I think the measures taken by the Red Cross could be inadequate to prevent the spread of XMRV and related retroviruses. In the UK people are banned from donating blood if they have ever had CFS - even if they appear to have recovered. The Chief Medical Officer Report says that CFS is often a relapsing, remitting illness. Asking potential donors how they feel 'today' could, at least in theory, allow infected blood into the donor supply.
I suspect that the Red Cross have tried to implement a response that seems to them to be proportional to the risk. But the risk is off the scale and proportionality is meaningless. If it is possible that XMRV and the related retroviruses can cause CFS and cancers then the viruses must be prevented from contaminating the blood supply. An outright ban, widely publicized and thoroughly implemented is the only safe course of action IMO.

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