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Blood Center halts donations from chronic fatigue sufferers

by TONYA MOSLEY / KING 5 News

Bio | Email | Follow: @TonyaMosley

KING5.com

Posted on December 10, 2010 at 5:51 PM

Updated Friday, Dec 10 at 6:17 PM

LACEY, Wash.- - During our interview, Shoiban McElwee struggles to stand up from the couch.

"Recently, I've been spending between 16 to 18 hours a day sleeping," says McElwee as she walks to the kitchen and carefully pours close to a dozen prescription pills and supplements. McElwee says she has chronic fatigue syndrome.

"Comparing this level of fatigue to tired is like comparing a lit match to a nuclear explosion," she says.

McElwee says after reading about the possible connection between the XMRV retrovirus and chronic fatigue syndrome, she had her doctor send a blood sample to be tested. Two days ago, she says her results came back positive.

"It's not like having a regular virus that comes and goes. A retrovirus comes and stays," said McElwee.

According to the Whittemore Peterson Institute in Nevada, 95 percent of chronic fatigue patients in a recent study also had the XMRV retrovirus.

"Some papers have associated this with both chronic fatigue syndrome and prostate cancer," says Dr. Thomas Price, medical director of the University of Washington blood program. Price goes on to say there have also been studies to refute these findings. "Nobody knows what the right answer is. The jury is still out on this."

Blood donation agencies like Puget Sound Blood Center, however, are not taking any chances.

"We have taken the precaution of those with the diagnosis of chronic fatigue syndrome not to donate blood," says CEO James Aubuchon.

For McElwee, who looks forward to being able to work, drive and paint again, this discovery may be the first step in treating what, up until now, has been an untreatable disease.

"For the first time in a long time we feel like we're being taken seriously. We feel like things are moving forward, but there's still a lot of work to do," she said.

Prostate cancer patients undergoing treatment are already barred from giving blood. Retroviruses are a class of viruses passed through bodily fluids like blood, unlike cold viruses which travel through the air.

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Comments: Displaying 1 - 15 of 21

speakthetruth said on December 12, 2010 at 4:24 PM

For the sake of those who are infected and symptomatic, shouldn't antiretroviral drugs be tried in a controlled study? If not, WHY NOT?

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evardsson said on December 12, 2010 at 12:57 PM

This story is seriously lacking in details. Like how the PSBC web site didn't reflect any change in policy until AFTER the story was filmed. Or like the fact that Japan has already begun testing their blood supply and found XMRV. Or why the new president of the AABB (who happens to be the CEO of the PSBC you interviewed) is not recommending that the blood supply be tested. Or why he seems to think that the "jury is still out" on the infectious nature of XMRV. Can he point to a single known retro-virus in mammals that A. is not infectious and/or B. does not cause illness? No. Retro-viruses are infectious, and cause illness. Knowing that CFS patients, prostate & breast cancer patients, as well as a percentage of healthy controls have tested positive for this retro-virus, failing to test the blood supply is essentially telling the public that the AABB's bottom-line is more important than their health. Follow the trail and make it public. "And the Band Played On" all over again ...

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gtothe3 said on December 11, 2010 at 7:27 PM

Thank you Tonya Mosley and King 5 News! Please keep us up to date on XMRV and it's link to disease such as ME/CFS, MS etc.. Perhaps you should investigate how the CDC has handled XMRV and ME/CFS!

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ravepuppyak said on December 11, 2010 at 2:21 PM

This was an awesome first step in reporting the issue. The story feels like it had more meat to it and got trimmed for time. Without the meat the public is not informed about the seriousness of the issues. Please do a follow up with more in depth information. how long has the XMRV retrovirus been in the blood supply? What are the figures on infection rates? whats the meat to go with the potatoes?

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phoebesnowden said on December 11, 2010 at 10:34 AM

Thanks so much for accurately covering this story. I am a long-time CFS sufferer and have never donated blood, but I know many many CFS patients who have, both because they were told by their physicians that they were not contagious and because the blood donation centers insisted that they could continue donating because CFS is not an exclusion. Then there is also the 4-7% of the healthy population infected with XMRV who don't even know it and are potential blood donors. Other countries have erred on the side of caution by banning CFS patients from blood donation until more is known, while our government is busy with spin control. I have recommended to friends and family that they bank their blood for surgeries until the blood supply is assuredly safe. Please continue to follow this story: the public has the right to know.

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shannah said on December 11, 2010 at 10:00 AM

Short and sweet - there's so much more to the story! And the Band Played On ...

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annefm said on December 11, 2010 at 9:55 AM

Thanks for having the courage to give some coverage. :) It's an important story. If you look at the history of CFS and how researchers in the past tried to get funding to explore a retrovirus link to this devastaing disease, you'll see how shockingly badly patients have been let down, by the CDC in particular, for decades. ...Only it's the entire populaion that's been let down isn't it. A retrovirus in the blood supply all this time. The implications of that are only just becoming clear.

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naoming said on December 11, 2010 at 1:59 AM

Omg. HALTS donations?! How long has this been in the blood supply? This is really freaky! I did a search on google and they're saying it causes all kinds of weird big diseases - and they say its called "XXMRV Associated Neuroimmune Disease." that's like HIV right? And a bigger question - if the U.S./Europe is already reporting that it's worried about the blood supply, why arn't other major networks covering the story? This is the first I had heard of it on a television network! I am really freaked out!

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dennishogan123 said on December 11, 2010 at 12:49 AM

As with HIV, it has taken a threat to the general population to make the government, the medical community and the media take the CFS illness seriously. -Dennis Hogan (disabled with CFS for 20 years)

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djburnham3yahoo said on December 11, 2010 at 12:45 AM

So much for it all being in our heads doc.....

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0r0b0r0s said on December 10, 2010 at 9:20 PM

very important issue but we desperately need more coverage on this one. This is a national pandemic along the scale of the HIV virus with governmental and pharmaceutical cover-ups bouncing off the walls. King5 would do well to get a solid jump on a very dirty issue impacting millions of people's lives which can - in fact - be transmitted to others unintentionally. The xmrv retrovirus is a suspected culprit in numerous other serious health issues - not just so-called ME/CFS which - afterall - is a derogatory spin-word intended to quash the real urgency going on here and make it look like some sort of laziness issue or something... Give it some thought folks...you can build on this and follow it through a long long way. You will be doing yourselves a huge favor not to mention the lives you may also be improving...possibly even saving by driving this issue home. Aside from a little expected heat from unexpected places it's a win-win situation all around. More coverage on this one NOW!!!

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creekfeet said on December 10, 2010 at 9:05 PM

Thanks for covering this story. ME/CFS patients and their friends and families the world over are already sharing this link and discussing the story, as we do every time there's coverage of the disease, new research, and progress in protecting the blood supply.

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rimlandfanwa said on December 10, 2010 at 8:52 PM

wrenavery- if you beleive you got sick from a blood transfusion, (and have proof of the transfusion) I would suggest you contact Whittemore Peterson Institute's s media person (on their website). They might be very interested in hearing from you.

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talkingfox said on December 10, 2010 at 8:18 PM

I want to know WHY there is any confusion as to XMRV as a threat. All other retroviruses that infect humans (HIV and HTLV) are pathogenic and blood borne. Gamma retroviruses (like XMRV ) cause disease in other mammals that they infect. There is no reason to believe that this one should be different

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xmrvpositive said on December 10, 2010 at 8:08 PM

Tonya Mosley, thank you for doing such a great job with this story. Please continue to report on the XMRV developments. For decades reporters have been portraying patients with ME/CFS as depressed, lazy,and hypochondriacal. Siobhan McElwee is a great example of how wrong those descriptors are. She is an amazing musician, artist, writer, and activist. We need clinical trials NOW so that brilliant artists like Siobhan can resume their life's work.

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wrenavery said on December 10, 2010 at 7:10 PM

Thank you for bringing this vital information to light. I've been ill for many years, and was a recipient of blood transfusions in 1980. I believe I passed this on to my youngest son, but can't find doctors who will test or are even familiar enough with CFS/ME/FM to want to treat it. The sad reality is that the XMRV retrovirus has been known to be around for nearly a century, and has not been tracked in the blood supply until now in the USA. Like HIV, the retrovirus can be passed to babies during pregnancy and during nursing. Please keep following this vitally important issue, so the public can become aware of the threat; and maybe, just maybe they will find a way to heal us.

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rimlandfanwa said on December 10, 2010 at 6:53 PM

Thank you Tonya Mosley for briging this important news to light. It sounds like the Puget Sound Blood Bank 's Medical Director- as well as their CEO/President (who is also in charge of the international blood supply??) need to go back to school- because neither are able to recognise that RETROVIRUSES are transmitted thru blood Imagine needing a blood tranfusion for a life saving surgery- only to find out you lived- but now you have got a retrovirus that causes Chronic Fatigue Immunodeficiency Syndrome? . I am reminded, back years ago, of a book by Randy Shilts- "And the Band Played On". Here we go again!!!! Whittemore Peterson Institute- honest research, there for US.

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khalyal said on December 10, 2010 at 6:42 PM

Thank you for running this story. XMRV needs more research, so that people with CFS can finally get treatment. Any attention brought to this is a big help.

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ricospetunia said on December 10, 2010 at 6:35 PM

I can't tell you how much I appreciate your reporting on this very important issue! CFS patients have waited far too long for recognition, proper medical care, and treatments. It's a shame that it's taken a threat to the world's blood supply in order for us to gain some attention. I look forward to more coverage of CFS and XMRV from King 5! CFS, 25 years Arlington, WA

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carlitosgonzalez said on December 10, 2010 at 6:17 PM

Thanks for reporting this! Already world wide these countries have banned CFS patients from donating blood: -Canada -Belgium -Malta -United Kingdom -Australia -New Zeland -Norway Please put pressure on the USA to ban blood donations from CFS patients. FDA estimated that one out of 14 people carries a MLV-XMRV retrovirus, therefore is plausible that is in the blood supply. XMRV has an envelope that is a neurotoxin and oncoprotein, and has been associated to breast cancer, prostate cancer, CFS, Autism, etc... The 14th of this month FDA meets to take a decission on this issue! That is next week! Media can really make things happen, please go for it, safety for ALL of us!

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talkingfox said on December 10, 2010 at 6:03 PM

Credit where it is due: The Lit match/Nuclear explosion metaphor was originally from Author (and CFS patient) Laura Hillenbrand. I want be sure she is credited for her powerful words Siobhan McElwee

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