The questions came up soon after the first study of XMRV in chronic fatigue syndrome -- should people with chronic fatigue syndrome give blood?
Canada says "no." Canadian Blood Services acknowledges that there's no conclusive link between the retrovirus and chronic fatigue syndrome, or any other disease for that matter, but the agency says it prefers to err on the side of caution. It's the first country to make this move.
I'm sure some of us are worried about a stigma that could arise from something like that, and I think it is a valid concern. However, it seems to me like a choice between being considered "crazy" and "infectious." Yeah, it's lousy either way, but at least people can't say you aren't sick and be afraid of catching it at the same time. That kind of stigma is bound to be the flip side of the condition being validated as an infectious viral disease.
Overall, though, I think the Canadian folks have probably made a wise decision. If research eventually finds XMRV doesn't cause disease, fine -- lift the restriction. If, however, future research shows a definite causal like to chronic fatigue syndrome, prostate cancer, or any other illnesses, how many people will the ban have protected? Hundreds? Thousands?
It's hard to quantify, but if the original research was right, about 3% of healthy people could carry XMRV. If 3% of blood recipients get tainted blood, they could then pass XMRV along to their children, sexual partners (according to preliminary transmission studies), and anyone who gets blood any of those people may donate down the road. We don't yet have the full picture of how XMRV is transmitted, so there may be other ways to spread it as well. Pretty soon, you're looking at a whole lot of people who are infected and could have the potential to develop something pretty nasty because of it.
XMRV is only the 3rd retrovirus to be conclusively identified in humans. The first was HIV. The second one, HTLV, is linked to leukemia and lymphoma. So out of 3 known retroviruses, we know 2 can be deadly. So far, XMRV is tentatively tied to 1 potentially fatal disease (prostate cancer) and 1 life-long debilitating illness (chronic fatigue syndrome). To me, it makes sense to keep XMRV from further contaminating the blood supply until we know more about it.
In the U.S., the group that assesses threats to the blood supply is called the AABB. It last met in August -- 2 months before the research linking XMRV to chronic fatigue syndrome was published. A Wall Street Journal article talked to an AABB committee member who said she'd give it a "yellow" threat designation, which is the groups' lowest ranking.
Taking the donation idea a step farther, one of my Twitter friends recently posted this:
"Changed my organ donor status coz didn't think it would be a good idea 2 put organs from someone with CFS into someone else."
Because I don't have chronic fatigue syndrome and research into XMRV in fibromyalgia is too miniscule to even be called preliminary, I'm not to the point of changing my organ-donor status. If I had chronic fatigue syndrome, though, I'd have to give it some serious thought. I certainly don't want to inflict illness upon anyone, especially when their health has already taken a serious beat-down.
What do you think? Do you think it's too early to worry about it, or should we err on the side of caution? Would you give blood or donate your organs, knowing about the possible XMRV connection to your illness? Leave your comments below!
- See the Wall Street Journal article on XMRV
- Read the AABB's XMRV Fact Sheet
UPDATE: In mid-April, New Zealand blood banks also announced a ban on blood donors with chronic fatigue syndrome. Australian officials announced they were looking into the potential risks.
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- XMRV & Chronic Fatigue Syndrome: What We Know So Far
- The XMRV Glossary
- How Do You Explain Chronic Fatigue Syndrome?
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Thanks so much for giving us the info about the Canadians’ decision. I stopped donating blood this year because I worried about potential transmission. It’s interesting that the local bloodbanl has also stopped calling me to request it.
Your thinkinng through the subject really helps. Thanks!
I have been getting loads of google alerts about this very thing. Although I do not disagree with what the Canadian government is trying to do – the way the media has been reporting this is terrible. There are phrases like “AIDS like virus” and “closely resembles the AIDS virus” out there. Irresponsible phrases like that in journalsim is what causes fear and panic. THAT is what makes me upset. I would be happy with something like “XMRV is a retrovirus. Other known human retroviruses are HIV 1 &2 and HTLV 1 &2″ It says the same thing in a more responsible way.
People who have ME/CFS or neuroimmune diseases of any type should never donate blood no matter if X is their problem or not. I would never donate blood being as sick as I have been in my life. I have had everything from crypto to babesiosis. I would never in a million years want anyone to be this sick.
I wonder how many doctors actually consider performing the test for XMRV to help rule out CFS or FM in America.
So we go from ” I think it’s all in your head” to ” Get away from me, I heard that’s just like AIDS” Crazy. I’ll take the stigma if an effective treatment comes along with it. After 6 years of CFIDS I know who my real friends are anyway.
As someone with significantly disabling CFS, I would refrain from blood donation until more is known about the potential association between XMRV and my condition.
However, I will retain my organ donor status as my organs (should they ever become available) may be the only compatible tissue available to a terminally ill patient.
What little we know of xmrv would suggest that it is not a cause of terminal illness in most of those infected.
If you have XMRV in your blood, you are at increased risk of dying just the way Rock Hudson died. Rock Hudson died from Kaposi’s sarcoma, which is a typical kind of cancer that you can die from when you have AIDS. What people of the general public do not realize yet is that the same kind of thing may happen when you are infected with both XMRV and KSHV/HHV-8. Not only people with CFS/ME, but also all their family members are at risk : they should at all times avoid getting an infection with KSHV/HHV-8. Frédéric Chopin may have died from the same disease as Rock Hudson : Kaposi’s sarcoma ! Frédéric Chopin due to XMRV, Rock Hudson due to HIV. HIV-1 is to AIDS, what XMRV is to CFS/ME : Rock Hudson is to AIDS and Kaposi’s sarcoma what Frédéric Chopin is to CFS/ME and Kaposi’s sarcoma. The Kaposi’s sarcoma-associated herpesvirus (KSHV), also called human herpesvirus 8 (HHV–8), has been found to be present in 50% of patients with CFS/ME. XMRV + KSHV/HHV-8 = Kaposi’s sarcoma. HIV-1 + KSHV/HHV-8 = Kaposi’s sarcoma. You do not need to have CFS/ME in order to die from Kaposi’s sarcoma : a co-infection of both XMRV and KSHV/HHV-8 may cause Kaposi’s sarcoma if left untreated ! Those with XMRV-induced CFS/ME will have at least a triple co-infection with [1] XMRV, [2] HHV-6A and [3] KSHV/HHV-8; and their non-CFS/ME family members may have a double co-infection with [1] XMRV, [2] KSHV/HHV-8. KSHV/HHV-8 may be transmitted from mother to child : vertical transmission of Kaposi’s sarcoma-associated herpesvirus (KSHV/HHV-8).
More than 10 years ago, after first and realizing they really had no idea what was causing it I asked someone from the Red Cross and was expecting to be told not to give blood. I was still hesitant though. Shortly afterward I was told that, no, I could not give blood but it was because I had been in England for several years during Mad Cow problems over there. If that were not the case I still think I would not give because the thought of giving this to someone else, even my worst enemy is more than I can contemplate. I also think that sounds much more likely than me passing Mad Cow on to someone.
I always warned the Red Cross about my illness before donating. I even remember that the CDC had said that people with CFID/FM should NOT donate blood or tissue about 15-20 years ago. However, the Red Cross always poo-poos those concerns and says it has no knowledge of a CDC warning against such things and so I occasinally donate.
It DOES bother me when I do. I, like another person who commented above, would hate to give to give this to someone who was already sick. However, a heart transplant patient once told me that he would risk CFID/FM a million times over to get his new heart.
So… what to do, what to do…
I wish there would be some firm decisions about it universally. I wish more money was put into CFIDS/FM research. I wish I knew what this was I had and I wish I knew if I could give it away in my blood. There’s so little else I can do these days, I thought giving blood was a way to help my community. I guess it’s not now.
I’ve never been able to give blood, even back when I was only diagnosed w/ fibro. As an R.N., it doesn’t make sense to compromise an already compromised body; i.e., you’re already fatigued…why give blood and get more fatigued? Now that I’ve been diagnosed w/ chronic fatigue/adrenal fatigue, which also includes hypovolemia (low blood volume) I wouldn’t dare donate.
I don’t donate because I take a number of medications that might have an adverse effect
on the sick or injured patient receiving the
blood. I would not want to compromise them
any further. I know someone who takes methotrex-
ate and other meds for M.S. and while I understand
her wanting to help, I don’t think that she should
be donating blood either. God bless those who
can and do donate tho.
I have fibro and have been told that I can’t give blood here in Australia
I still want to remain as an Organ Donor, because as a Recipient I KNOW I’d rather contract Fibromyalgia than die waiting for a Heart or a Kidney!
Well this makes alot of sense for years I swore my condition of Fibromyalgia and CFS was caused from the anaethesia used during my surgery in 1996, but now I may know why I developed the conditions…the blood used during my surgery. If the illness doesn’t kill you the cure will.
I have Fibromyalgia and Chronic Fatigue Syndrome. I would never wish this condition-disease to another human being. Although Canada may be causing a stigma to those that suffer, I think it should be happening here in the U.S. It’s better to be safe than sorry.
I stopped giving blood and my partner and I have been have safe sex just in case. If down the road we find out we can’t give it fine, no harm no foul.
For Lydia:
Unrelenting or constant stress is more likely to have caused your CFS/FM than a blood transfusion. Anything that makes you that sick could have started you down the road to these illnesses. To just blame it on a transfusion because you had one isn’t exactly based on fact.
As soon as I was diagnosed with CSF, I no longer signed as a blood donor on my driver’s license, nor did I give blood. I wouldn’t want to pass this hideous disease on to my worst enemy.
When I was diagnosed with CFIDS/FMS in ‘92 by an internist/Communicable Disease Specialist, he told me to never give blood. The last time I did was way before that & felt like I needed it more than any patient did because of the terrible fatigue/weakness afterwards.
Like so many others who have posted, I wouldn’t wish this condition on my worst enemy, but have to remind myself all the time that being alive beats the alternative, so I do understand why people who are dying would be willing to take the risk of this by receiving a donation from us eith by organ donations or blood.
I’m almost 64 & have had this for about 54 yrs. I never get used to the idea that my life is never my own, but ruled by some insidious conditon that nobody seems to understand. I just hope that in the very near future, answers will come our way to eradicate this & give us all a life back worth living. After losing loved ones to ca. etc., I know it beats dying, but it is truly SO hard to live with this.
Canada, New Zealand (but I have not confirmed this) and Australia have banned CFS blood donation. What we know of XMRV is that it infects all tissues within ten days of infection, based on animal studies. There are unconfirmed reports of XMRV transmission via blood transfusions, and this is how experimental animals are infected anyway. A really sick person who needs an organ is probably so sick that XMRV might kill them very very fast, or trigger another infection that does so. While the research is miniscule and unpublished in a serious paper yet, FM has a very high prevalence of XMRV. Like in CFS, anyone with FM should not be donating blood or organs. We will know much more in the months to come, it is safer to defer donation until after the science gives us definitive answers.
I beg to differ with Welland…I had 7 pints of blood after a MINOR hyserectomy, that went wrong. I was not under stress until after the surgery, near death and transfusions.
I have asked my Doctor more than once if he thought I could have gotten the CFS/FM from the blood I received. He said he couldn’t give me a difinitive answer. He also advised me not to give blood.
I have never been able to donate blood as I take several medicines that might create an adverse effect on the patient or injured receiving the blood. Being a patient of depression an anxiety I take several high dose medications. But thanks to Findrxonline I got guidance and consultation of renowned doctors and therapists which have assisted me in living a comparatively better life. Hope will be able to be a proud blood donor soon.
Just to update this thread, it was announced by the red cross Around Dec 3rd, 2010 that they will no longer accept donors who admitt to being diagnosed with fibro or cfs in the past. I recently gave blood and they have added screening questions and literature to their donor process. Cheers.