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XMRV A Retrovirus With Implications
December 3, 2009 3:01 PM   Subscribe

People who suffer from chronic fatigue syndrome may have an answer as to why Nobody knows what causes CFS and fibromyalgia, for many years doctors poo-poohed the patient and sent them home with anti-anxiety drugs, but studies now show that there is a link to this retrovirus and these disorders. It's not in your head. Some studies earlier showed a link between prostate cancer and this virus, but the jury is still out on this. It's thought to be sexually transmitted via the blood, and actually binds with human DNA.
posted by ~Sushma~ (27 comments total) 23 users marked this as a favorite

 
It's thought to be sexually transmitted via the blood

What?
posted by squorch at 3:29 PM on December 3, 2009


You just haven't been doing it right.
posted by Sandor Clegane at 3:35 PM on December 3, 2009 [8 favorites]


Be wary of a number of the sources you'll find on this. By far the best online source is the place that supported the research that found XMRV The Whittemore Peterson Institute. (More on them here and lots more links .) The full article in Science reporting the WPI findings is reprinted here. The CDC's handling of this has been at best feeble, often incompetent, always half-hearted and at times malicious, as described here. (That article also mentions possible links to lymphoma, which have been more prevalent in recent literature I've seen.) This video is not a bad summary of the important points, all in more accessible language.

And please, for the love of all that's good in this world, wherever this research leads, spare the world half-baked opinion on this matter, here and elsewhere. A lot of people suffer immensely with this and there is a deplorable level of dismissal and venom aimed at them.
posted by el_lupino at 3:41 PM on December 3, 2009 [10 favorites]


Sorry, the third sentence there should have had this link to a further page at the WPI.
posted by el_lupino at 3:43 PM on December 3, 2009


Ahem... Credit where credit is due, el_lupino. It was Dr. Eric Klein and Dr. Robert Silverman of Cleveland Clinic who actually discovered XMRV, and published in 2006. And on that subject, this issue of Cleveland Clinic Urology and Kidney News has an interesting discussion of the subject. Go to the article entitled "XMRV is Found in Prostatic Secretions:
Evidence Suggests Sexual Transmission."
posted by Faze at 3:51 PM on December 3, 2009 [1 favorite]


Faze: Due credit, indeed. Should have specified the *new* link with XMRV. And no denying the link to prostate cancer, just noting recent upticks in lymphoma mentions.
posted by el_lupino at 3:53 PM on December 3, 2009


I have been following this rather sporadically since I first read about it a month ago (my father was diagnosed with CFS in the early 90s). One one hand, this whole thing is surprisingly similar - didn't we go through this last decade with Eppstein-Barr being the suspected virus? On the other hand... how do my family and I get tested for XMRV? Why do some patients with CFS symptoms not show signs of the virus (in their analogy, wouldn't that be like AIDS patients who don't have HIV?) Could a retrovirus (perhaps even this retrovirus) be responsible for other often-mocked disorders within my family with unknown causes, such as fibromyalgia?
posted by muddgirl at 4:12 PM on December 3, 2009


Anybody know anything about the allele referred to that's associated with XMRV infection? I was unaware of this previously, and it seems like as good a subject of research as the retrovirus (even though we all love a good epidemic).
posted by nathan v at 4:28 PM on December 3, 2009


I need to learn more about this "sexually transmitted" aspect. I want to tell my mom that daddy gave her an STD but I have to be sure (not sure how I got CFS when I'm a virgin, it was probably Jesus).
posted by Danila at 4:31 PM on December 3, 2009


Muddgirl: Yes, "Chronic Epstein Barr" was once thought to be a culprit. EBV, of course, turned out to be widespread in the general population (more than 95% of adults). XMRV, however, is found in only about 4% of the general population. The initial article in Science from the Whittemore Peterson Institute found XMRV DNA in the peripheral blood mononuclear cells of two-thirds of patients with ME/CFS. Subsequently, WPI has found XMRV antibodies in 95% of the ME/CFS patients studied. It is still possible that XMRV may simply be latching onto the compromised immune systems of people with ME/CFS (as was seen with Kaposi's Sarcoma in HIV patients), but if further research bears that high correlation out, that becomes increasingly unlikely.

There is a lot of good information on the WPI Q&A page, including about fibromyalgia.

XMRV testing is available: WPI has licensed the XMRV test to VIPDx. The test is $650.
posted by el_lupino at 4:48 PM on December 3, 2009 [1 favorite]


Oh, and a link for VIPDx.
posted by el_lupino at 4:49 PM on December 3, 2009


el_lupino, thank you for your compassion and great links. Kudos to you. I've been suffering from a very rare blood disorder MGUS/WM of which I do not fit into the box they have put me into. According to my IgM numbers, I shouldn't feel so horrible, but I do. My decline is evident in my medicine cabinet due to a DX of fibromyalgia, oddly enough concurrent with the cancer Dx. I'm just trying to put the pieces together, because my gut tells me both Dx are WRONG. This study is provocative and hopeful for patients like me that are square trying to fit into the round hole, and have heard others lamenting that their pain is psychosomatic. I signed up for the upcoming clinical trials for this.

Squorch-good catch (well I hope not anyway) on the STD. It has been compared to HIV, as you can't generally catch the virus via normal contact such as saliva, but by intimate contact that would involve sperm, blood and transfusions, essentially the same criteria that is accorded AIDS.

Keep 'em coming, this is the first glimmer of hope I've had in 48 months.
posted by ~Sushma~ at 5:46 PM on December 3, 2009 [1 favorite]


It's not in your head.

Not to be the drum major of the snark parade - but this kind of editorializing is generally frowned upon around here. If, in fact, the evidence validates your opinions and impressions of this new research I'm sure it'll come out in the wash. Metafilter is not your personal whetstone.
posted by Baby_Balrog at 7:11 PM on December 3, 2009 [1 favorite]


This proves correlation, but as any high school science whiz would ask, this doesn't necessarily prove causality, right? Although, the correlation is so high, that it sure kinda looks like it, but still, there *could* be another issue, and the virus itself is either harmless or harmful after-effect.

Just saying. Those with actual medical or epidemiological knowledge may flame me con gusto.

But fascinating nonetheless!
posted by xetere at 7:35 PM on December 3, 2009


xetere: No, you're right, and you'll find the expert voices saying that. It's still possible it's what they call a "passenger virus" that just leaps into an immune system that's weakened in just the right way, but wasn't what weakened it in the first place. It's one study, even if it's good science. But you can't even begin putting together an etiology without some correlation like that, and the hope is that this one is paydirt. It's a disease with notoriously little paydirt in the past.
posted by el_lupino at 8:42 PM on December 3, 2009 [1 favorite]


I was diagnosed with Fibromyalgia about four years ago. I trust my doctor and absolutely agree with him. It just sucks because Fibromyalgia is a disease that affects, primarily, older females. I'm a 20-something year old male. I was 24 when I was diagnosed with the illness.
So yeah. I could tell you that it's not in my head, but seriously, after that whole cheerleader flu shot thing, I'm a little afraid of how well my mind might be capable of convincing my body of things that might not be true. I didn't know anything about the disease until after I was diagnosed, but what I did find out only seemed to solidify the doc's opinion. My mom, her mom, my grandma, her mom, and nearly every other female in my family has been diagnosed with it at some point. My brother James, who is only 20, doesn't have health insurance so he hasn't been able to see a doctor yet, but I'm afraid for him; he already has many of the same symptoms that drove me to finally the a doctor in the first place.
A lifetime of looking forward to the many advances science comes up with in the field of pain medication though.
posted by Bageena at 8:43 PM on December 3, 2009


Sticking their DNA in your DNA is what retroviri do.

Well, it's actually you taking their RNA, making (let's call it their DNA but they don't really have any DNA of their own) and then sticking it into your DNA.

I wonder if it's like Hep B and C where the majority of the people exposed clear the virus with only a few becoming chronic carriers.
posted by Kid Charlemagne at 9:17 PM on December 3, 2009


A few videos and news articles of interest on the topic of the recent XMRV research and the connection with Chronic Fatigue Syndrome/ME

National Institutes of Health press release on XMRV

National Cancer Institute press release on XMRV

Youtube video of Dr. Dan Peterson, from the Whittemore Peterson Institute for Neuro Immune Disease, at the Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting October 29, 2009.

Youtube video of Dr. John Coffin, expert on retroviruses, Tufts University, Boston, at the Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting October 30, 2009.

Youtube video of Dr. Donnica Moore on ABC Good Morning America Health

Youtube video of Dr. Nancy Klimas on NBC Florida Today Nov. 13, 2009.

Annette Whittemore, president and founder of the Whittemore Peterson Institute and Judy Mikovits, Ph.D., director of research for WPI on Nevada Newsmakers Today from October 8, 2009. Video on Youtube

The New York Times has covered this story:

Virus Is Found in Many With Chronic Fatigue Syndrome

Is a Virus the Cause of Fatigue Syndrome?

A Case of Chronic Denial, editorial by Hillary Johnson, author of Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.

Expert Answers on Chronic Fatigue Syndrome.

Dr. Mehmet Oz had Dr. Donnica Moore on his show that aired December 3, 2009. A video of the segment is not yet available, however they have published good information on the show's web site: What is Chronic Fatigue Syndrome and How is XMRV Related?

It is very interesting research, and I suspect we all will be hearing a lot about this discovery in the months to come. As a matter of fact, last month, November 11, 2009, 75 researchers met at the Cleveland Clinic:
Cleveland Clinic conference puts spotlight on XMRV link with chronic fatigue syndrome
posted by lucysun at 10:08 PM on December 3, 2009 [5 favorites]


Not to be the drum major of the snark parade - but this kind of editorializing is generally frowned upon around here. If, in fact, the evidence validates your opinions and impressions of this new research I'm sure it'll come out in the wash. Metafilter is not your personal whetstone.

Oh come on. A single 'editorializing' sentence in a post rarely gets called out, unless people disagree with it. The posts that fail are ones that are entirely "editorialized", first person, calls to action, etc.
posted by delmoi at 1:29 AM on December 4, 2009 [1 favorite]


It's not so much editorializing as correcting the long standing that CFS is a mental health problem rather than a physical one.
posted by Lentrohamsanin at 4:59 AM on December 4, 2009 [2 favorites]


Quote Baby_Balrog: -Not to be the drum major of the snark parade - but this kind of editorializing is generally frowned upon around here. If, in fact, the evidence validates your opinions and impressions of this new research I'm sure it'll come out in the wash. Metafilter is not your personal whetstone.

This is my first accepted post cut me a break . This is a THINKTANK, so what if it's used for avaricious purpose? Would a contributor publish something here without having an interest, even a casual one for the subject matter? Link to the hard and fast rules please so I dare not under-intellectualize the audience. I think the inherent question remains: did this post bring value?
posted by ~Sushma~ at 7:18 AM on December 4, 2009


One one hand, this whole thing is surprisingly similar - didn't we go through this last decade with Eppstein-Barr being the suspected virus?

Yes, but that's a feature, not a bug.

There were a lot of markers in patients with CFS/ME that indicated a chronic viral infection (enlarged spleen, for example). They tested patients for common viruses and found that lots of them had Epstein-Barr virus, so some hypothesized that that was the culprit.

Well, as it turned out, it wasn't--most adults in the industrialized world have Epstein-Barr virus floating around in them. Right church, wrong pew, it seems. The error in identifying the specific virus doesn't necessarily detract from the "chronic viral infection" hypothesis.

I do have a bit of a dog in this fight myself, as someone with a different chronic viral infection (coxsackievirus), which has made the past 10-ish years of my life fairly challenging at times.
posted by Sidhedevil at 8:00 AM on December 4, 2009


I guess in my case I'm not skeptical that the cause is retroviral (that actually makes a lot of common sense to me, considering my father's symptoms). I'm just afraid of the backlash if this research can't be replicated and it turns into another weapon for internet wonks to throw in my face when I make the apparently-controversial claim that my father is very sick despite nearly a decade of both medical and psychological intervention.
posted by muddgirl at 8:09 AM on December 4, 2009 [1 favorite]


Wow, it's "nearly two decades" at this point.
posted by muddgirl at 8:13 AM on December 4, 2009


el_lupino: "This video is not a bad summary of the important points, all in more accessible language"

Yeah, but looking at that ABC Host lady creeped me out to the point where I can't go outside any more. Plus Dr. Moore said "suck-ceptible".
posted by sneebler at 8:37 AM on December 4, 2009


Thanks for this post, I had no idea! Any steps toward a cure or even effective treatment would be wonderful; I'm 33 but am taking 6 different meds daily (2 of which are controlled substances; one other pill has a withdrawal syndrome said to be worse than heroin) and am sick of living like a brittle old man - not that I'm expecting a magic bullet, but more light can't hurt, and any destigmatization would be wonderful!
posted by jtron at 11:07 AM on December 4, 2009


The segment about XMRV with Dr. Donnica Moore on Dr. Oz's show is now available on Youtube.
posted by lucysun at 7:28 PM on December 6, 2009


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