A much-anticipated paper on the potential role of retroviruses in chronic fatigue syndrome (CFS) just came out in The Proceedings of the National Academy of Sciences. Before it was published, many people had speculated that this work would “confirm” the XMRV-CFS link. It does not. However, it does provide more evidence that people with CFS may be more likely than the general population to harbor murine-like retroviruses.
As a Science news article covering the new work explains:
Part of the problem, skeptics say, is that the researchers didn’t exactly replicate the Science paper. XMRV is a so-called xenotropic murine virus, which means it can no longer enter mouse cells but can infect cells of other species. (Murine means “from mice.”) The researchers in the PNAS paper say the viral sequences they find are more diverse than that and resemble more closely the so-called polytropic viruses, which is why they adopted the term MLV-related virus, for murine leukemia virus. “Let’s be clear: This is another virus. They did not confirm [Mikovits's] results,” says retrovirologist Myra McClure of ICL, a co-author of one of the four negative studies.
Still, “in the grand scheme of things,” the viral sequence found in the PNAS paper closely resembles those of XMRV, says Celia Witten, the director of FDA’s Office of Cellular, Tissue and Gene Therapies, who was not an author of the paper herself but spoke on Lo’s behalf. Witten adds that the data “support” the Science paper. Mikovits — who is “delighted” by the new paper — says the difference is not important. In as-yet-unpublished results, her group finds more genetic diversity in the virus as well, she says.
So now we have two studies suggesting a correlation between CFS and murine-like retroviral infection, four studies finding no evidence of these murine-like viruses in any humans, and the newest results suggesting that we’re not dealing with a single virus at all, but perhaps a whole family of them. Interestingly, the two studies that did detect murine-like viruses in CFS found them in both CFS patients and healthy controls – they’re just much more frequent in the CFS patients. Similarly clear-as-mud data sets have now accumulated for prostate cancer, both claiming and denying a link between that disease and murine-like viruses.
This raises a whole passel of new questions. Are we simply awash in murine retroviruses, which can start opportunistic infections in humans who are already sick with other diseases? Do any of these viruses actually cause any disease? And if 3-6% of the healthy population really is walking around with these viruses in them, is there any point in restricting blood donations from CFS patients?
I think its best to stop CFS patients donating blood anyway. At least you can eliminate them. Once we have an official test, then we can deal with everyone else. Lets keep the spread of this disease down (If it is causing disease) I wouldn’t wish it upon anyone.
According to Lo (FDA) the paper does support the findings of the Lombardi et al. study. It is quiet clear that what is now needed is funding. Lets get on with finding out how to find these viruses consistently, and work out what is happening in the bodies of CFS patients.
This group of patients need a break. They have waited too long for the majority of the medical profession to look upon them with anything more than disdain. It is time to treat this disease seriously, to take on board what we do know biologically about it, and how it perhaps fits together with these retroviruses.
I am hopeful for the first time in 17 years that we will learn something that will be beneficial to patients, and create actual treatments. No more excuses.
It’s just nice to see some real science being done on CFS, a diagnosis which has led to many patients symptoms being presumed to be psycho-somatic and denied adequate medical care or investigation.
Living with an illness as disabling as CFS would be difficult enough without having the added hard-ship of a disinterested medical community treating you as if you were mentally disturbed without their being any positive evidence that this was the case.
It would have been immoral for doctors to treat a CFS patient with anti-viral drugs without their being clear evidence of viral infection. It is equally immoral for doctors to treat their patients, and encourage others to treat their patients, as if they were psychologically ill without there being clear evidence of psychological illness.
It is a shame that ‘skeptics’ who have been critical of those jumping to viral conclusions about the nature of CFS have not also been more critical of the long history of unfounded psycho-somatic quackery which has engulfed CFS too.
Honestly, regardless of whether xmrv causes cfs or not, they should ban cfs patients from donating blood. CFS is a disease of unknown etiology. That means at some point in the future, when the etiology is found it could be infectious. There are more than enough healthy people who could donate blood. There is no need to take it from people who are known to be ill. Even if we don’t yet know what is making them ill. Not to mention the first question on the blood screening survey is something to the effect of “have you felt ill within the last few weeks?”. Seeing as cfs patients never feel well, they should be already disqualified indirectly based on that question.
To quote Dr. Lucinda Bateman, a clinician and CFS researcher, we learn something new from every study that comes out. Eventually, this process will lead to some definitive answers and treatment. It’s just really hard to wait when one is in pain every single day without relief.
In 1987 Joan Irvine got ME/CFIDS from a blood transfusion and Reeves at the CDC admitted in a letter in 1992 that “ongoing research indicates” it might be caused by an “infectious agent”. He later denied that by phone.
A copy of Reeves’ letter can be seen here: http://www.cfs-news.org/joan.htm
In 1996 on Prime Time Live, Dr.Phillip Lee, Assistant Secretary of Health, in effect, disputed Reeves’ statements, pointing out he believes there “are cluster [CFIDS] outbreads” and that he would guess the disease “is caused by a retrovirus or some type of virus.”
http://www.youtube.com/watch?v=sjVsSbmiTZg&p=152940443D9A57C4&playnext=1&index=51
Dr McClure did her quick and dirty study at the request of one of UK’s quack psychiatrists who wanted to blow viral research out of the water as fast as possible. She said she was “1000% sure” there was no XMRV in UK, yet about 60% of UK patients who got tested privately came up positive, using the earlier, less accurate test.
HIV has been found to be more than one virus as well. I doubt anyone would advocate that HIV shouldn’t be eliminated from the blood supply simply because a certain percentage of people already have it and we don’t really know yet how HIV causes AIDS.
As researcher and clinician Dr Klimas says, a person with CFS is sicker than her AIDS patients are except in the last few weeks of their lives. She would rather have HIV/AIDS than CFS.
The point, then, would be to lessen the chance for the terrible suffering, disability and even death that comes from having CFS.
There are still AIDS denialists but the best scientists are not deterred from looking for cures and treatment. CFS patients deserve no less and the public deserves to be protected from any retrovirus that causes neuroimmune disease and cancers.
WPI has researched what it would take to remove these viruses from the blood supply and found a solution, one already in use in Europe. The only question that remains is, will the US health establish put it to use.
Alan, you say, “Before it was published, many people had speculated that this work would ‘confirm’ the XMRV-CFS link. It does not.”
However, during the press conference today, Dr. Alter said that the paper “confirms the findings of Whittemore-Peterson Institute” and that it is “highly confirmatory of their work.”
“And if 3-6% of the healthy population really is walking around with these viruses in them, is there any point in restricting blood donations from CFS patients?”
Are you serious? Isn’t that exactly what several government funded task forces are trying to discern? What about all of the neurological diseases and immune dysfunction we suffer from with little understanding of their true etiology?
Over the course of a lifetime, what percentage of people will eventually contract MS, Parkinsons, ALS, Alzhiener’s, or other forms of dementia (not to mention cancer – See Eric Klein’s presentation, Is Prostate Cancer an infectious Disease? – http://webcasts.prous.com/AUA2010/html/1-en/template.aspx?section=7&p=7,11872).
What if we find that 3-6% is actually a very conservative number? MLV’s are known to cause cancer and neurological disease. And what if you were in need of a transfusion (with the very high likelihood that your systemic resources were already severely taxed)?
I sincerely hope that scientists with a higher level of intellectual curiosity are hard at work on this very question.
> And if 3-6% of the healthy population really is walking around with these viruses in them, is there any point in restricting blood donations from CFS patients?
That’s an amazing thing to say, when HIV’s “transmission probabilities per act vary from γ=0.0001 to 0.0014 in US and European studies of discordant couples [refs] [...] However, higher transmission probabilities (γ=0.056-0.100 per act) have been reported among men who had contacts with prostitutes in Thailand [ref] and Kenya[ref].”
In contrast the transmission efficiency of HIV by transfusion is 90-100%, and the adult point prevalence of having ever been transfused is around 20%.
Most likely, you were simply unaware of the above figures until now; if so you ought to revise.
I would advise readers that the transmission figures quoted above are, like everything in science, less than 100% certain to be true. Also, y = 0.001 = 0.1%, *not* 0.001%.
Of course if you (in Europe or the USA) incognizantly have sex with someone HIV+ for a year, say 100 times in the year, then the risk would be much higher than 0.01% to 0.14%. However, it would not be 100 * 0.0014 = 0.14 = 14%, but rather something somewhat lower, but probably not too much lower. Is there a math jock in the house?
> Interestingly, the two studies that did detect murine-like viruses in CFS found them in both CFS patients and healthy controls – they’re just much more frequent in the CFS patients.
IMO it is objectively mistaken to present this as ‘interesting’ or significantly contributory to unclarity. Those with background in infectious diseases or parasite evolution know that ~33% of pathogenic agents commonly cause asymptomatic infections; and in many agents asymptomatic infections are much more common than symptomatic ones. There’s H. pylori (vis-a-vis both pyloric ulcer and stomach cancer), hep C, tuberculosis, EBV (I’m mostly referring to Burkitt’s lymphoma, but initial infection with EBV need not cause mononucleosis either), HPV, SARS, Strep pyogenes, tertiary syphilis, HTLV, C-diff, HSV-1 & -2, poliovirus, trichomoniasis, Chlamydia trachomatis, C. pneumoniae, babesiosis, Mycoplasma pneumoniae.
> many people had speculated that this work would “confirm” the XMRV-CFS link. It does not.
Any intent to support this against the contrary opinion of the rather formidable Dr Alter (who, granted, is party to the dispute)? Of course we know that Dr Myra McClure (also party to the dispute) is on your side, but it would appear that you are presenting an open controversy as if it were closed, without stating why you believe that it can be closed.
A couple of clarifications. First, what I meant about the blood supply is that if 3-6% of it is already infected with murine-like retroviruses, does restricting donations from CFS patients really have much impact on the overall risk to the supply? Even if the most liberal prevalence figures are correct, I would think CFS patients would represent a tiny proportion of the total blood donor pool (particularly if we assume that a lot of them aren’t going to feel up to donating a pint of blood). Having said that, I can see both sides of the issue – it’s good for blood banks to exercise an abundance of caution. I was really just putting that out there as a discussion point.
Second, yes, I fully understand the concept of asymptomatic carriers. Nonetheless, it’s interesting to me that there are potentially millions of people walking around with murine-like retroviruses in their bloodstreams, apparently feeling no ill effects from them. It’s one of many recent lines of evidence that viruses are much more widespread and diverse than anyone had previously appreciated.
Finally, I am absolutely not presenting an open controversy as if it were closed. Quite the opposite. I think it’s wide open. My whole point was that this latest publication raises many more questions that we need to explore.
Then why restrict anyone? If HIV accounts for so little, why bother when XMRV is out there in such large numbers.
HTLV also has a similar pattern. With lots of asymptomatic carriers.
Well as the psychosocial proponents of CFS often state, ‘fatigue’ is one of the most common complaints seen in general medical practices, accounting for some 40% of all visits, if I remember correctly. In fact, there has long existed a feud between CFS patients and these individuals, since CFS patients believe their illness to be a distinct biological entity and the psychosocial lobby believing CFS merely to be an extreme end of the spectrum of general fatigue. Could the difference between MLV’s potentially causing CFS and not be reliant on some other co-pathogen(s)? I think Dr. Jose Montoya of Stanford has said that he often sees people come in with CFS who have recently experienced a herpes infection. After several years of gradually and progressively getting sicker, I contracted herpes in Nov. ’03 (go me! ;)), had my first and only outbreak in spring ’04, and rapidly went from about 40-50% functionality down to around 15% (from which point I have again gradually progressed to single digit functionality) within the timeframe of about a month or so. Alternatively, enteroviruses have been suspected as having a primary role in epidemic ME (later to be watered down and re-named CFS) since the Los Angeles County Hospital outbreak in the 1930′s.
It would be an interesting finding indeed if the psych lobby’s theory was correct after all, but not for the reasons they suspected!
What absolutely blows Me away is how many patients I’ve met where the spouses and or children are sick . If that doesn’t ring Infectious I don’t know what does! Someone seriously needs to look at the BS studies done by the CDC and do them again with real CCC patients not BS Georgia cohorts . Testing all family members and close contacts . This virus could truly be wreaking havoc on immune systems not just in CFS population but like you said the blood supply . I think further info will come to light this is a trigger for disease . I’ve met 5 woman now that say their husbands were well and Now are sick with the same symptoms. Men and children are affected by this disease. This isn’t a womans hysteria disease this is a debilitating life altering disease affecting Families!!! Not one member but multiple . Can you think of another disease quite like this that’s acquired. I can it’s called AIDS!!!.