Virus linked to both chronic fatigue syndrome and prostate cancer

wow! This is really interesting. It's pretty hard to fulfill Koch's postulates when the disease in question is species - specific (deliberately re-infecting a human with a purified organism, just to see if they get sick, isn't considered good practice); I wonder if there are mice (or if we can make GE mice) that would be vulnerable to this virus.

I wish everyone would quit using this statement in relation to CFS/CFIDS: "Its very existence is questioned by many..."

Who are the many? If you are not willing to quote from their published scientific articles, why would you give them this credit in your article? The somatic theory is old news still propagated by a few die-hards. Citing this archaic bias without scientific support weakens your otherwise good interpretation of this very big news for sufferers.

You clearly state "People who have the condition have abnormal immune systems that seem to be permanently activated, but that lack the normal complement of defensive "natural killer cells". They're also more likely to have faulty version of an antiviral protein called RNaseL. just as infected prostate cancer patients are."

Hmm, sound like childhood trauma to you? Come on, this is a science blog. Why introduce an unsupported controversy?

I don't hear you saying that many still believe prostate cancer is caused by not having enough sex (a widely believed myth). We know what causes prostate cancer now, and soon, very soon hopefully, we will know what causes CFS.
- 20 year sufferer

Diana I've chopped out the offending bits of the intro.

From an "end-user" point of view:
I was diagnosed w/ Epstein - Barr Virus in college ('88), then, the term became CFS. Without a doubt I have a weird immune system, as I had confirmed Chicken Pox 3 times as a kid and still have very high levels of CMV and Epstein Barr and CRP. Whenever something is going around, I am the last to catch it, although I can feel my body "fighting" it off. Then, sadly, I succumb, and it takes me such a long time to get better. Other people get sick right away, but then get better right away. Without a doubt, I suffer from extreme fatigue. I had pretty good luck deciding that I refused to have CFS when in college, since the prognosis was so poor. Denial & ephedra then anti-depressants & adderall, etc. helped me make it through each day. However, as I turn 40, I have decided to try to pursue a definitive diagnosis. The whole autoimmune diagnostic process is a NIGHTMARE -- do I need a rheumatologist, a neurologist, etc.

Research like this is great, but we also really need a better diagnostic process. While the somatic theory may be "old news", I think most people w/ autoimmune issues are made to feel like complete hypochondriacs during the long path to an accurate diagnosis. I know how daunted I have felt, and I have great health insurance. Strangely, diagnosing my DOG w/ Myasthenia Gravis was a fast & relatively easy process for the Veterinary Neurologist, yet it took over a year for a friend's father to be correctly diagnosed w/ MG vs. the stroke they originally suspected. It's very, very frustrating, so I am very glad to hear that researchers are working on it.

If this turns out to be true, what would the treatment be, and does it exist now?

Could you please explain how this type of retroviruses are transmitted?
We know how HIV is transmitted (!), but what about this xenotropic MulV-related virus?
In other words, since our daughter was diagnosed with CFS 2 years ago, should we take precautions to ensure that her siblings do not fall prey to the same horrible disease? And I do mean horrible. This has been a nightmare and I cannot even imagine having 2 children with the same disease.
Any advice?

Thanks for writing about this and acting on Diana's comment. It's interesting how almost every news article on the subject of CFS has to lead in with mentioning that many doctors don't believe it's real. It gives those people an affirmation that it's still okay to not believe it.
Unfortunately, it's really not just a few die-hards but still the vast majority of doctors who have probably not read anything substantial or recent on the subject.

There have also been studies about people recalling false information as true, especially with repetition:

Helping patients separate true health information from false
http://www.boston.com/jobs/healthcare/oncall/articles/2008/02/28/in_oth…

So perhaps writers can make a difference.

Anne V - there is some information about how this XMRV virus is transmitted on the Whittemore Peterson Institute website here, http://www.wpinstitute.org/xmrv/xmrv_qa.html
hth

OMG! I totally alerted my oncolgist to expect a flood of calls in the next few weeks.

Later, I may be able to say something more coherent.

I sit here numb. Not only do I have fibromyalgia and chronic fatigue, but my dear husband had radiation for prostate cancer and his PSA is rising again. I have suffered over 20 years and this is real HOPE for a cure.

This illness has taken my whole life since 15 years old. The suicide rate in cfs is 9 times the average due to the lack of care and downright cruelty cfs patients encounter from others on a daily basis.

There has been very little research into the physical side of cfs for a long time. This discovery comes from a group funded by sick people and their families.
There have been lots of small studies funded by cfs sufferers and their families but almost no major research funding except to psychiatrists. We are told that those small studies don't count because they are not big enough etc but we cant afford big studies and they know it.
One Study showing high levels of choline in the brains of cfs patients years ago. Highly significant but unrecognized becuse you need a bigger study which costs money and that money is been given to psychiatrists not mediacal researchers.
So they keep telling us we don't have proof unless we have a larger study to prove the smaller studies. But they wont give us money for the larger studies.
The bulk of reseach funding has been lining the pockets of physiatrists and the reasons for this may well lie with the health insurance industry in the United States. If cfs is not provable and therefore claims are hard to get, then their shareholders will get bigger returns and fat corporate cats will get fatter while destitute abused cfs patients will commit suicide and these guys don't care about anything but themselves and more money for themselves.

I am in pain every damned day and often its unbearable but I have no choice but to endure it. Then you have to put up with being treated like a bludger if you are lucky enough to receive a medical benefit which is not enough to live independently on. Somehow in an age where as a woman I could claim much higher benefits as a single parent than I can as an invalid people think I would go to the trouble of inventing an illness to claim the invalids benefit. I have no children because Iâm too sick to go out and meet anyone and certainly too ill to have a child. I donât have any life at all and people keep telling me to take up some sort of charity work etc. Well I would if I was physically able. They seem to think I just don't want to go out etc when the fact is its incredibly hard for me just to get to the supermarket and doing my housework often makes me so ill Iâm bedridden for days. I fought hard for years to get myself a home and lost it when I became so ill I couldnât eat anything at all. Its a long story b ut the cruelty others inflicted on me because of the propaganda surrounding this disease has left me broke and much sicker and most often miserable.
Yes I went through all my money trying to get well. So many of us do this. Why would patients spend 100's of thousands of dollars of their own money trying to recover from malingering. Why would they spend that money on supplements doctors etc etc if they wanted to malinger. Surely they would be better off spending their dough on a long holiday rather than trying various expensive solutions out of their own funds.

Right now all I can eat is meat and salad vegetables everything else makes me incredibly ill. If I eat anything with carbohydrates in it my pain levels go up exponentially and I start passing large clumps of white cells in my urine. My legs start to swell up also. The only remedies that are keeping me going are oil of oregano, small doses of zinc picolinate and iron supplements. The muscle aches and symptoms are often much worse than severe flu. It feels like I've been poisoned if I eat anything that disagrees with me. Its amazing Im still here but hereâs hoping after 33years there might be some relief or at least some kindness and care. I've had mostly derision so far. Tears used to be a private daily occurrence untill I got to the stage where crying would make me so much worse I had to block all my emotions to stop myslf being completely bedridden. Its often just so hard to get out of bed through the pain I can only liken it to the time I had to dress to go to hospital when I passed kidney stones. Thatâs how hard it is sometimes just to get to the shops and get food. But you have to cover it up because when people see how sick you are they are even nastier. This is how these assholes who have spread misinformation about this condition have affected my life for years. Their cruelty has killed probably thousands of CFS sufferers who have committed suicide.
They have inflicted misery on sooo may sick people they deserve to suffer a little.
Sorry Im bitter but the truth is just soo many people arenât very nice under their daily facade and you certainly see that a lot unless you are surrounded by the other type of person and these rare kind people do exist. I know if I ever do get better I will chose friends from the latter group and wont bother with the bulk of people many of whom can pretend to be nice people when it suits them. But you have to look hard at people and test them out a little. Some people have very good fakes at sincerity and but why would I want fake sincerity. I think though that sick women and maybe some sick men are mistreated even when there is a diagnosis. I spoke with a woman who had cancer and her (male) doctor told her that her husband would put up with it for a few months then leave which is apparently more common than not. And thatâs exactly what happened. Her husband dumped her because she was sick. Most women with multiple sclerosis are also abandoned by their husbands. Not all but the majority so what does that say about love. Is there such a thing. I guess the men or women who donât dump their sick partners do love them. The others I donât know?

Meanwhile there's a war on over getting mention of this into the Wikipedia article. People keep adding it, and WP regulars keep deleting it. One annotation they deleted noted that a more reliable detection method found XMRV in 95% of CFS sufferers, not just "two thirds", vs. less than 4% in others.

I second both eloquent posts from Diana (2) and M (7).

Having been decimated by CFS for almost a decade, brushed off by doctors for years with dismissive referrals to (useless) psychotherapy or (damaging) psychiatric meds, and basically left to rot, this news first left me in tears of relief - finally, finally, they are finding the cause of this wretched disease, thank God.

But after the tears, I'm angry. It is unconscionable that CFS patients have been abandoned as psychiatric cases for decades (and once you get branded as a psychiatric patient, God help you, an instant license for prejudice and scorn from doctors, nurses and medical staff), when not only is this a real physical disease, but now we are learning that it's a disease with an alarmingly high risk for cancer. This level of medical negligence is sickening.

I don't ever want to read another blustering science journalist carry on about putative controversy over the existence of CFS. Even the lead article in Science couldn't resist this ugly indulgence: "As if chronic fatigue syndrome (CFS) hasn't caused enough brawls..." (Sam Keen, 215). Enough!

When I explained to a new acquaintance that I had CFS, she had the solution. She also suffered from CFS, she said. But she solved it by taking a long, long hike in the park adjacent to her home every day when her husband came home form work. I should do the same. Well.....if I could take a daily long hike, I wouldn't have CFS, would I?

Unfortunately, I doubt if the identification of this virus means a cure. It doesn't even mean that a cause has been found. But gee, it does mean validation for those of us who have been told mostly that we should get over it, & if we can't to go into therapy.

I have had cfs for the past 3 years. The doctors all said there was nothing effective to treat it. However, I did end up trying a Chinese doctor. I've been going to him for 2 years, and I'm happy to say its working!! I am much better and now have hope of recovery. If you've lost hope, I would recommend trying out a Chinese doctor for acupuncture and herbs. It may take a few years of treatment to recover, but if you find the right doctor, it will heal you. Unfortunately there are some Chinese doctors out there unfamiliar with cfs and therefore unable to treat it effectively. You will want to find someone who specializes in it. There are a few such doctors in the Bay Area, California.

M wrote: It's interesting how almost every news article on the subject of CFS has to lead in with mentioning that many doctors don't believe it's real. It gives those people an affirmation that it's still okay to not believe it.

Similarly, the media clings to "Yuppie flu", although this last couple of years we are also seeing "...which used to be known as Yuppie flu". Perhaps journalists think this shift will be welcomed but it just serves to perpetuate its use. Why is it that so many journalists and sub editors are unwilling to let go of this trite and insulting phrase?

A plea to any journalists reading this site: if you wouldn't resort to groaners like "experts say..." or "leading scientists warn..." or using "toddler" for any child under five or "plucky grandma" for women over 47, then please resist the urge to drag out "Yuppie flu" and "Yuppie flu campaigners". The media created this damaging label in the 80s; we look to the media to bury it.

This XMRV info seems interesting but not groundbreaking, Many viruses are suspected to cause CFS, except in mild cases - Ask or demand from your MD treatment with antiviral meds and maybe IVIG. medical community just try the antivirals and throw in some immune support for good measure - end the suffering of million!!!

People with CFS keep educating yourself -Search on google "cause of CFS", "treatment for CFIDS","Viral Induced Fatigue" . See www.HHV-6foundation.org for one, look for studies at Stanford and other successful with strong anti-virals. Educated and advocate find a way to keep hope alive

I was reluctantly diagnosed with CFS by my doctor since, as he put it, he didn't believe in the disease. He felt I was actually suffering from depression. Well, I think both were true. I had been in a deteriorating condition for 6 months- dragging my sorry butt around as I ran a large (understaffed) branch for Citibank that was open 6 days a week, worked excessive hours, and I had a 1 year old, 2.5 year old and a 4.5 year old- the two youngest didn't sleep through the night. I got to the point that I couldn't think straight, truly felt I was babbling when I talked because I couldn't keep the thread of conversation in mind, at night couldn't find where I had parked my car that morning- every day. I had to nap the second I got home and on weekends. When driving, my eyes were rolling in my head. I would contract any illness that was around and get it worse and it would linger longer. The Epstein- Barr titer showed I had an acute infection, totally off the charts. My doctor didn't think it mattered- he said "Some call this the Yuppie Flu which means you can only afford to catch it if you are affluent- other people ignore it and go to work." This was in 1999. I kept up my demanding schedule until I finally collapsed and was out of work for 5 weeks. At that point, at 5'9" I weighed only 104 pounds. I thought I was dying. As to being depressed- of course I was- try pushing yourself that hard for that many months when you are seriously incapacitated. Every day at work I accomplished less and couldn't catch up, the laundry was undone, and each day I awoke with a nauseating migraine. For me to even take a long walk, I would collapse and sleep for hours. Years later I learned by reading Wikipedia that I probably had Mono. Even being told that much would have made me feel so much better. Also I would have known to go on bed rest instead of desperately trying to not give in. I believe I became that much sicker because I was not advised to rest when the problem first manifested itself. After 5 years of struggling to cover all my bases as the breadwinner, mother, I came down with yet another illness- labrynthitis of the inner ear, which causes vertigo and an "at sea" feeling. I only mention this minor illness because the doctor prescribed an anti-viral famocyclovir- after about 5 days, I was surprised to realize I felt generally much better, was not always waking up with a migraine. I felt like the permanent fog I had been living in began to lift. After 2 weeks I was substantially better than I had been in 5 years. It seemed to me that the anti-viral may have worked on clearing the CFS as well. I continued to improve gradually, and had to slowly work my way back to exercising. I consider myself recovered from CFS, however if I push myself too hard physically, I can go into a tail spin for a couple of days. I am also off the SSRIs and have gained back 35 pounds (OK, perhaps didn't need the last five lbs.) I feel pretty good now. But some anger lingers because I know I suffered unnecessarily: lacking a diagnosis that my doctor believed in, I was ignored medically. I was sent for psychological counseling instead. I did not only my best, but was over-performing, considering the horrible way I felt each day, but my husband, my mother, brothers all believed it was "all in my head" thanks to the doctor- even though I looked like hell, or as I was told "death warmed over." Being a CPA, graduate student, Executive VP when this struck- I was very ambitious- it made it all so much worse to suddenly be seen as someone who was not keeping up and treated like I "wanted to be a sick person" and was a little bit crazy. It was a bad bad 5 year nightmare for me. I fervently hope this virus discovery will ultimately provide an effective treatment regime for current CFS patients. And yes, I will feel vindicated.

Thank you Ed for the link to the Whittemore Peterson Institute! I was able to forward it to all our friends who were asking whether we had read the news about the XMRV virus.

One more note: our daughter was diagnosed with CFS at the end of a thourough elimination process that included dozens of tests and visits to several specialists.
The list included evaluations by *2* psychiatrists, one of them an expert on somatization. Both of them agreed that our daughter was mentally healthy. The somatization expert even commented on how positive and upbeat she was about a disease that was so clearly physically debilitating.
So it seems that it is possible to find (in the US at least) psychiatrists who accept the reality of CFS as a disease with no mental cause.
In our daughter's case, Chinese medicine did not help, but sacrocranial therapy is slowly bringing back most of her energy:-)
Thank you again for your article!!
Anne