CFS sufferers and blood donation--Wall Street Journal blog
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bullybeef
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As I understand it, AIDS existed prior to HIV!! Also governments weren't unduly worried about AIDS until they discovered heterosexuals were contracting the disease after they received a blood transfusion. And it had an even more disparaging name than CFS, GRID - Gay Related Immune Disease! If AIDS hadn't been killing people so quickly, it may have been swept under the carpet in the same way ME has.
Yes, you're right Bullybeef. AIDS was ignored for a long time before suddenly becoming the media sensation of the 1980s. Governments have no worries about letting epidemics spread like mad while they faff around deciding what to do, i.e. deciding how to handle it without losing votes.
usedtobeperkytina
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Well, there are a couple of issues.
People are less afraid since they have been around HIV. But they will also remember the fear they felt before when there wasn't any treatment for HIV. But that fear was because there wasn't any treatment. Now there is.
And the fear was because people who caught it were dying within a couple of years of showing symptoms. Not the case with CFS, the world at large doesn't know CFS kills and they also don't think it is very disabling.
The biggest thing that will happen is people who are tired and have had a blood transfusion in the past will go to their doctors and ask to be tested. Plus, everyone who has fatigue (one of the most common complaints people have when they go to the doctor) will ask to be tested.
I just love the idea of these main street doctors who have paid little attention to CFS research and think it is just another form of depression or know it is biological but just don't want to deal with the hassle of a patient that never gets better and which you don't have any strong treatment to give them, suddenly with a flood of people asking "Do I have CFS? Will you test me for that virus I saw on the T.V. news the other night?"
Funny. I think a lot of doctors will be looking up stuff on the Internet. Kicking and screaming, they will come into our world. LOL
Going to tell my doctor that if she feels overwhelmed and needs some information, she can call me. LOL (Not really, she is pretty cool, but that might be going too far, even for her.)
Guys, the way I see this, we are going to be having a lot of fun.
Metaphorically speaking, right now, we are climbing the hill, "click, click, click" goes our roller coaster cars. We are about to top the crest. And then it is "Wheeeeee!" down the hill. We will be getting a whole bunch of studies published at the same time, and then the conference this fall. "Wheeeeee!"
Hold on. It's going to be quite a ride. Enjoy the anticipation and speculation and worry now, it is an important part of the ride.
Tina
People are less afraid since they have been around HIV. But they will also remember the fear they felt before when there wasn't any treatment for HIV. But that fear was because there wasn't any treatment. Now there is.
And the fear was because people who caught it were dying within a couple of years of showing symptoms. Not the case with CFS, the world at large doesn't know CFS kills and they also don't think it is very disabling.
The biggest thing that will happen is people who are tired and have had a blood transfusion in the past will go to their doctors and ask to be tested. Plus, everyone who has fatigue (one of the most common complaints people have when they go to the doctor) will ask to be tested.
I just love the idea of these main street doctors who have paid little attention to CFS research and think it is just another form of depression or know it is biological but just don't want to deal with the hassle of a patient that never gets better and which you don't have any strong treatment to give them, suddenly with a flood of people asking "Do I have CFS? Will you test me for that virus I saw on the T.V. news the other night?"
Funny. I think a lot of doctors will be looking up stuff on the Internet. Kicking and screaming, they will come into our world. LOL
Going to tell my doctor that if she feels overwhelmed and needs some information, she can call me. LOL (Not really, she is pretty cool, but that might be going too far, even for her.)
Guys, the way I see this, we are going to be having a lot of fun.
Metaphorically speaking, right now, we are climbing the hill, "click, click, click" goes our roller coaster cars. We are about to top the crest. And then it is "Wheeeeee!" down the hill. We will be getting a whole bunch of studies published at the same time, and then the conference this fall. "Wheeeeee!"
Hold on. It's going to be quite a ride. Enjoy the anticipation and speculation and worry now, it is an important part of the ride.
Tina
grant107
Jean
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Someone asked the question, who with cfs would donate blood. I was in remission for 5 years and in anticipation of surgery I gave blood to be saved for me. Giving blood caused be to go into a severe relapse. I didn't need the blood during surgery but I do not know what they did with my blood. They may have put it in the blood bank when I didn't need it. I am xmrv positive. So it could easily happen that our blood would be used.
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
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