XMRV - the third infectious human retrovirus

By Rick Jelliffe
December 1, 2009 | Comments: 16

I had missed the big news last month, with the publication in Science of Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome.

Updated: see Mouse hanging by thread

Two quite good non-technical news reports are here. Also here.

XMRV is xenotropic murine leukemia virus-related virus and is related to a mouse retrovirus that causes cancers. It does not seem to be airborn, and presumably can be spread by fluids, but does not seem to be as virulent as HIV. (However, in an interview with Dr Klimas on YouTube, who has both HIV and CFS patients, she mentioned that she would prefer having HIV to CFS, since HIV treatment is so successful.) It seems that there needs to be some other immunological trigger for CFS, and that the retro-virus has active and inactive phases like HIV.

The other known infectious human retrovirus are HIV (which causes AIDS) and HTLV-1 and 2 (which cause T-Cell Lymphoma and T-Cell Leukemia.) The exact connection between XMVR and CFS is not clear yet, but the research was prompted when XMRV was discovered in some prostate cancer patients with similar symptoms. There are a raft of other hitherto somewhat mysterious diseases which this may impact.

The original Science article found 4% XMRV infection in the control population (320 people, surprisingly high) and 67% from the 101-person CFS-diagnosed population (68 people). Subsequent to the Science article, very fast, other tests have been developed (anti-body) and it seems that 99 out of 101 have markers for XMRV. Very high. (A subsequent small independent study of 20 people also found significant numbers, so it is looking very promising indeed.)

For the latest updates, see YouTube! WPI's Dr Peterson has some testimony (to CFSAC to some committee on it: starting here. (The second clip is particularly interesting, I thought.)

In one of the interesting comments along the way was how many more people are infected, devastatingly, with CFS compared to all the fuss with H1N1: but H1N1 has had so much attention in the media. Swine Flu is scarier than Mouse Virus perhaps. According to Wikipedia, CFS is found in 4 out of 1000 Americans, and only 5 to 10 % fully recover, but figures of a million CFS sufferers are also sometimes quoted. I once talked to a lady whose husband had his first attack while surfing: just keeled over from sudden fatigue and had to be rescued!

What is particularly heartening about this XMRV discovery is that it opens the door for treatment, whether it is a cause or a symptom. And a more merciful attitude by people who may have thought (as was the case in the 50s, 60s and 70s, but even recently) that CFS was a primarily a mental issue or malingering. And more hope for CFS sufferers.


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16 Comments

Good article! I've been suffering with CFS/ME for 23 years, and I can tell you that it's a mental issue is still prevalent, both in medical circles and in society in general. So I am particularly heartened to see your article with real facts. Thank you.

Arabella: My pleasure. I wept when I saw one of the videos.

I remember a doctor discussing the link between the heliobacter bacterium and peptic ulcers: for years everyone said they were caused by 'stress' and acid. And that was not very helpful, because our medicine knows about fractures and infections and neurotransmitters, but not much about stress.

But Warren and Marshall's patient work, hard science, produced convincing results. And it turned out that peptic ulcers were not the result of some unique quasi-mental problem which didn't really fit, but just another bug.

Obviously a retrovirus is not just another bug, but thanks to all the HIV research into retroviruses, it looks like we have many labs and specialist scientists who suddenly find themselves with skills to address the CFS epidemic.

Pace yourself!

I'd just like to add that even if someone's symptoms of fatigue were a mental issue that would be no cause for judgementalism.

In any case, pace yourself is generally sound advice.

Sean: I couldn't agree more. I hope no reader got that idea!

Nobody with CFS judges people who have psychogenic fatigue, but when you get lumped in with people who have fatigue as a result of depression, anxiety disorders, PTSD, etc. and you don't have any of those but instead have an organic disease process such as this XMRV retrovirus and are recommended psychiatric treatments such as Cognitive Behavior Therapy and Graded Exercise Therapy as your primary mode of treatment with biomedical treatments being withheld as a result of ignorant or intellectually dishonest psychiatrists and psychologists who have extensive ties to the medical insurance industry, which saves untold amounts of money by not having to pay disability for people with CFS due to them classifying it as a behavorial disorder, it adds needed context to why people with CFS are so against having a psychiatric label applied to them.

It also has nothing to do with 'Cartesian dualism' but rather basic medical classification. These same dishonest psychs would have it that neurology and psychology were joined together, but just because something happens in the brain doesn't mean it happens in the psyche.

John: I don't know anything much about the US medical system, but if that is the way it operates, it sounds like it has not served CFS people well. Is this the kind of broken behaviour that will be addressed in health reforms currently under discussion?

My dear old Dad is a doctor (GP), and I have heard him remark that one problem with the US system is over-specialization and a lack of generalist supervision: you go to a psych*ist and you will get treated for psychological or psychiatric disorders. You go to a physiotherapist, and you will get treated by physiotherapy.

Interestingly, he recalls when he was in medical school in the late 1940s that they mentioned '50 years ago, there were lots of people with this mysterious disease neurasthenia or "the vapours" but we just don't see it now.' When you look at the symptoms of neurasthenia, it is not hard to think it is a CFS misclassified in Victorian times as a mental illness. If that is true, then perhaps CFS has periodic epidemics?

So the misdiagnosis and mistreatment by professionals has happened even in countries and times without the US-style connection between doctors and the medical insurance industry. It may be more of a factor in the US, but not the only one.

How is this for a dismissive treatment for CFS?: "I think you may have some kind of allergy. Why don't you try moving to a different country and see if it goes away?" It happened.

Hey guys, thanks so much for posting this, esp. the link to the videos.

I have reposted an article at http://soaringhorse.blogspot.com/2009/12/xmrv-third-infectious-human-retrovirus.html with links to the complete video presentation.

My interest is the possible connection between XMRV, CFS, and Autism. Could be significant, certainly worth keeping an eye on. Would explain a lot.

cheers!

Malcolm: My pleasure.

I almost fell over when the word autism was mentioned so tantalizingly in passing too: I have two nephews who are Aspies. Was it just a slip of the tongue? But if we don't want to get too far ahead of ourselves with XMRV and CFS merely on an initial study, we doubly don't for other conditions whose cause is unclear, where there isn't even a study.

I want to thank you for a sober and intelligent synopsis of the news about XMRV.

I have recurring Epstein-Barr, Cytomegalovirus, HHV-6 (Variant A), and HHV-7 - at the least. My natural killer cell function is 2% and I have the 37 kDa Rnase-L defect. I have constant pain behind my eyes and in the back of my neck, frequent headaches, and pain in my disobedient thighs (I am losing the ability to walk - I can only shuffle with assistance). I have trouble understanding what I read, although I used to be a college professor who read and wrote for a living. I was helped substantially by the experimental drug Ampligen, which the FDA took away from me in Feb 2008 for reasons of its own - hence the downward spiral into my current situation (third time) and it will continue downhill if we don't find something to stop it.

I have not been tested for XMRV but my markers make me a likely candidate.

I wanted to correct a misperception from one of the comments: British psychiatrists, not American, convinced that "CFS" was neurasthenia (the vapors - and with no irony), have captured British public health. They believe that the disease is caused by "inappropriate illness beliefs" - the patient just thinks she's sick, or, perhaps having once been sick with perhaps mono, she has continued to behave as if she were sick to the point what appears to be illness is really deconditioning. All she needs is ten weeks of Cognitive Behaviour Therapy (CBT) to realize she isn't really sick, plus ten weeks of Graded Exercise Therapy (GET) to get her back in shape.

The main problem is that CBT and GET have failed to help patients with mild cases of CFS, and positively harmed those with serious cases (up to 30% of those who complete the program are made worse off).

But the "NICE" Guidelines, which dictate what is and is not permitted in British medicine, allow only CBT and GET as therapies, leaving the rest of the population of patients with this disease bereft of any care.

The CDC insists that the testing I have had is inappropriate for "CFS," so I have had to pay for them - each in the neighborhood of $500-750 apiece, including the XMRV test. When on Ampligen, I could walk and drive and read a book - wonderful to be so normal, although any infection could still send me into a 3-week tailspin - but I had to pay $20,000/year for the privilege.

Few can afford that. We're making do, but frankly few could even make do and afford that. Since most of the severely ill live on less than $20,000 a year, both testing and treatment become a moot point.

So the same outcome is achieved on both sides of the Atlantic - public health supports only CBT and GET; the US CDC lists specifically the tests a CFS patient should not get (everything I have), and the only pharmaceutical that targets my biomarker is frozen by FDA - I can get testing only by paying cash, and at the moment can't even pay cash to get the treatment - not because it has any adverse effects to speak of (a lot tamer than antivirals) - but because the FDA isn't convinced it "works".

Actually it all comes down to paperwork, as near as I can figure.

But perhaps this will change if XMRV gets the chance to be examined dispassionately.

In the meantime, I thank you again for your intelligent essay.

Charlotte: Your nightmare is unthinkable, and it is much more common than people think. And CFS (Chronic Fatigue Syndrome) sufferers in remission must always have the dread of a recurrence at the back of their minds too. I hope you are finding ways to keep cheerful and in company.

Yes, it seems that in the UK the theory that Royal Free disease was a mass hysteria, because it mainly affected single women and no organic cause could be found, has inflicted a severe toll on suffers lives. (At least in Victorian times 'female hysteria' was treated with some ...err... imagination.)

Imagine telling someone with AIDS that their problem was mental... Maybe there needs to be another name with a stricter test for CFS, so that at least those in severe crisis can get access to treatment.

I don't think the general population has any idea of the extent of the epidemic, how bad CFS can be when severe, and how long it can take for a CFS person to recuperate to a functional level again. And I think it may be disguised in many other countries. For example, when I read the reports of Japanese Hikikomori, it looks like what a CFS sufferer might be labelled as having: psychologising a physical complaint.

I do want to defend CBT (Cognitive Behavioural Therapy) and exercise programs (e.g. GET = Graded Exercise Therapy) however, in their place: any chronic debilitation disease can make us need better thought strategies and physical therapy, and we need to be open to what small comfort they may provide. And sometimes they can be life-changing and wonderful, in the way that having a cat can be therapeutic too. But just because CBT and physio may be useful for living with CFS, it does not mean that CFS is caused mentally or by poor conditioning or acquired pet deficiency...that is the illogical step that some people make. A CBT program that helps cope with unhelpful behaviours is good; a CBT program that tries to cure a physical ailment is dumb voodoo: you may as well be trying to drain off the 'bad blood'.

And I do understand that an evidence-based medical system will want the organic cause explained, and that any medicine subsidy system (private or public) will want good evidence before providing expensive drugs. And that doctors rely on their training which probably didn't include CFS. We have been in the wrong place and the wrong time, but if we fight enough we have the chance of being in the right place at the right time!

I have found some very bad doctors, but I have also found very good doctors, so I don't think it is useful to make too many generalizations. In Australia, I'd always say that if your doctor is a CFS sceptic and you have CFS, then you need to find a more competent doctor.

Unfortunately, this rule does not apply to policy-makers. I think this is something where the biggest hope for us is for researchers and professors to lobby the political overseers of the health bodies.

Hi all. I feel for you and your struggle as I have heard over and over from the CFS friends and I too live it. Except the poor UK folks... they seem to have it really bad. I am Canadian and I have at least secured a diagnosis and am on a disability pension. I am really hopeful about the XMRV future prospects.

That being said I do want to tell you that I have had huge symptom relief from extreme diet changes. They are difficult but the really help. I have found the alternatives to be good enough now to enjoy. If food I have eaten has been contaminated with food I am intolerant of my legs and arms don't work very well and I shuffle. I hate that. If you want information of the diet changes I made feel free to email me and I will try my best to help you.

All the best

Bert

Bert: Food intolerance and allergies are a bore, aren't they! I am sure many of my readers, including those without CFS, have some experience of it directly or through a loved one.

If your diet changes are simple to describe and not a commercial plug, feel free to mention them in a follow-up comment here. CFS sufferers are notoriously 'somatically focussed' but such a focus is an entirely rational and appropriate response, it seems to me, though it may be tedious for doctors who may be tragically aware they have little real to offer.

A lot of people don't realize they are lactose intolerant for example: there are lactic acid tablets you can take that help digest that.

My mother had an interesting food allergy for a period: she became allergic to beef and exhibited the symptoms of a heart attack. Years later, it has come out that this allergy is a reaction of a particular tick bite, which she had had.

I gather that the current treatments for CFS are mainly based on treating the symptoms not the cause: obvious since both the cause and its complications are obscure. So I think your strategy of concentrating on the symptoms and what is fixable sounds good.

Hello All; The CFS, ME, Fibro diagnosis has been a 10 year journey of pain, frustration and wondering why I cannot beat this devil into the ground. Diet, exercise, mental rebouting and changing everything to reduce the effects is much like a giant battle on the football field. The hardest and most destructive is the medical and society at large attitude of "blame" on the recipient of this disease. Looking well by no means provides a true portrait of the internal battle, nor do past activities, education, and expectation change the path of debilitation when the retrovirus decdes to increase it viral load.
I refuse all medication which are randomly reccommended, eat only fish, vegatables, fruit and rice and soya products. Best practice concept has been an assault on any real cognitive dynamic thought processing in medicine and driven by cost saving and ease of practice. In reality the real cost of this approach has required increased monies as the test done and general fritzing around does not address the problem. I avoid medical care wherever possible and sit and wait out the exacerbations, sometimes, not sure that I will get through it. What I need when in these situation is IV fluid which I am not offered nor allowed to tell the ER Doc's. It is just too exhausting to go through "the conversation" with a medical system trained to blame.
Good for all you people who write well and on your own discover and deal with this "new friend" attached to your DNA. Perhaps, the compendiums of information from you and support groups will provide a free education to medics and insurors such that we can get some relief mentally and physically. Moving out of the "neurasthenic" concept is critical to the world at large such that causal functions of the XMRV virus is understood.
Thinking of you all, Ruth

Ruth: Yes, it is frustrating when one's body is out of whack. (But we all will have to face that with aging, ultimately, I guess.)

CFS seems a great opportunity for buying snake oil.

So I am in your court, where I would not rush out to try every (or any) random pill. However, it seems to me that CFS, since it is just over the frontier of where there is reliable or highly effective evidence-based treatment, is exactly the condition where people in need may have no choice but to try unorthodox or experimental treatments, as long as they can afford them and the treatments pass basic plausibility tests.

I am pretty dubious about the effectiveness of folk/traditional medicines when there is effective evidence-based treatments, but that is not where CFS is at, so I would never sneer at people trying assertively to get their lives back under control by any plausible means they can lay their hands on: getting better is one of the proper vocations of the sick, after all.

[CAVEAT: I am not a doctor.] There are basic things that every CFS sufferer has to do, it seems to me: get enough sleep; pace their activities; get good food; avoid employment with fixed hours, workloads and deadlines; live within your means; be strong and insensitive against guilt, worry, accusations, helplessness, victim-mentality and abandonment, no matter how provoked; avoid invalidism by keeping active and engaged in the world to the extent possible (CBT and light exercise are obviously some use here, to give the devil his due); don't let the CFS disguise other conditions (e.g. chronic tonsillitis) which it may indeed make less tolerable; try to be loving and other-focused; try to be happy. None that is really satisfactory, but it is not condescending to have this pointed out to us, as we wait for fortune to smile on science.

My own intuition is that CFS may turn out to be a family of related conditions with a range of typical complications and intensities: just as there is HIV1 and HIV2, there may be multiple retroviruses at work, perhaps carried on different vectors. Who knows? As of the start of 2010, it is still too early to tell: but it seems to me that CFS research has been characterized by interesting breakthroughs that go no-where or cannot be replicated, which itself indicates to me that we just don't know where to draw the boundaries between complications and their agent(s).

As I mentioned before, I think a theory that CFS is caused by some bug(s) (post-viral, retroviral, whatever) has a basic plausibility in that when there is a choice between some handwaving explanation (e.g. mental stress of an unknown type) and a bug, I think the Heliobacter experience should incline us towards looking for a bug. (Which is not to discount complications of neurology, psychology or any other body system.)

The symptons of CFS are very similar to peroneoplastic syndrome. Is there a link between the two?
For what is worth, the diseases are definately bug-based, and I hope that the science that treats the disease is developed soon.

Tom: I am not a medical expert, so I don't know.

Doctors do often give the diagnosis of CFS when nothing else has worked. But there is plenty of scope for someone to have CFS plus something else like peronoeplastic syndrome which does indeed have several similar symptoms (the biggy of fatigability not being one of the ones given in Wikipedia however.) You don't want something like a peronoeplastic syndrome diagnostically masked by too exclusive a focus on CFS, I expect. (Let alone anxiety, chronic tonsilitus, being run-down from a hidden abcess or many other common things that would need addressing regardless of CFS.)

A good doctor once told me, half joking, that the thing he used to diagnose CFS was whether the patient came in with an obsessive list of symptoms and possible causes! That this may be tedious for the poor suffering doctor should be little concern for the poor suffering patient: boo hoo, the doctor is being paid, after all. :-)

But, outside medical consultations, I think any chronic sufferer of an illness may need internal resolve against a too obsessive somatic focus, even though is a natural reaction to pain. (I am sure most people have come across the "make your disability your friend" approach of acceptance and rising above the problem, sometimes also called "embrace and ignore". It is the opposite of denial and the opposite of obsession.) Anxiety is a real curse, and an extra burden that CFS sufferers don't need.

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