Tuesday, October 27, 2009

XMRV and XAND - Are We Jumping the Gun?

Well, well, well. As you probably all know, earlier this month, it was announced that a new virus has been found in a large percentage of the CFS population. It has been named XMRV, for Xenotropic Murine leukemia Virus-related virus and "is one of three infectious retroviruses known to infect humans." (For more info see: http://www.codiagnostics.com/XMRV/faq.php )

Okay, so I can see why that is a big deal. CFS being linked to a virus of the same sort that causes AIDS, a retrovirus. Granted, that is news. But how big is it? And what does it mean?

In the past 24 hours it has been announced that there is now a test available for XMRV.

It costs a mere $399.00 US, and is not likely to be covered by insurance. Still, very exciting, right?

Well, I thought so, but after reading all the FAQ on Cooperative Diagnostics website (see link above) I have to ask, "Why?"

It seems to me that getting that test now would be nothing but a waste of money. Why?
Well there are a few reasons.

First, XMRV has NOT been proven to be the cause of CFS. The same thing has been presumed to be true in the past for Enteroviruses, Cytomegalovirus, HHV6, and Epstein Barr.

This makes me feel like the CFS community is being exploited, yet again, with hopes for not just with the hope of a surefire, scientifically proven diagnostic test, but a cure, even though the FAQs on Cooperative Diagnostic's website is careful to cover their backs, the propaganda they are building around all this seems aimed at toying with the vulnerabilities of a group of very sick people looking for a shred of hope to hang onto, despite the number of disappointments and dead ends of the past 20 years.

I'm not saying that the XMRV is absolutely NOT that hope, but I do believe that it is far too early to be dangling the type of promise that the researchers seem to be holding out at the moment.

I know this all too well, personally. I was very excited when I first read the news. And, ironically, the specialist who is treating me for CFS had just prescribed me an AIDS/Hepatitis medication. To my chagrin, it is not covered by my insurance...I searched for programs to reduce the price, and as I have in the past, discovered once again that if you have AIDS in this country, you will be taken care of. There are all kinds of organizations, some even government subsidized to take care of anything an AIDS patient could need, from medication, to food, and housing. That's right. I discovered that if I were an AIDS patient, I'd be so much better off than what I am, as a CFS patient. Therefore it came as just validation when I came across the NY Times article where Dr. Nancy Klimas states that if she had to choose, she would choose to be an AIDS patient over a CFS patient. (http://www.nytimes.com/2009/10/21/opinion/21johnson.html?pagewanted=2)

It is one thing for this group of researchers to release this information, or rather, release information about the potential of the research they are doing, but quite another for the lab to release a test. To me, releasing a test that does nothing but prove someone has a virus that may only hypothetically cause CFS is as bad as any of the quacks out there selling their protocols, herbs, and "promising" treatments to the desperate masses with illnesses such as CFS and Fibromyalgia. Especially at $399! Why would anyone thinking logically shell out so much money for a test that is not going to help them in the least, at least, not at that moment?!? The only reason I can think of, is what I've already mentioned. That their emotions have overtaken logic, because their weaknesses are being played upon by yet another money-making entity disguised as a helping hand. (I mean, come on, they've gone ahead and created a whole new name for a group of diseases,[XAND] just on the basis of this research? Am I missing something?)

So I don't mean to be a killjoy, but I'd like to remind everyone to exercise caution, and not get their hopes up -- just yet. Yes, this could be big. It could mean that it will be accepted that we have a serious illness caused by virus of the same caliber as the one that causes AIDS, and that very soon all our suffering and struggle will be validated and there will be a definitive, widely accepted and scientifically indisputable way to prove we are as sick as we have been saying all these years. People will take us seriously, we won't have to defend ourselves against doubt, Disability Insurance will be granted to those who need it without having to jump through years of bureaucratic hoops, and best of all, people will start to care, and research will move forward to find a solution for us to take back our lives, if not be cured. OR it could prove to be just another opportunistic infection, one more medication to take, one more hope dashed.

As for me, I'm not losing hope, but I'll not be taken advantage of again or have my hopes raised until they should be.


  1. I don't think it's right to pit ourselves against AIDS patients. Yes, we with CFS may be suffering just as much or more as those with AIDS--except in the final stages of AIDS. And AIDS is pretty much always fatal, plus it's highly contagious, so that's why so much funding goes into it. Many diseases go underfunded and undernoticed. That's why it's important that we advocate for ourselves, as you are doing here.

    I don't think I'd pay for the test until it's a better test and I'm convinced that the general population does not also have it. When they first tested, about 60% of those with CFS had it; when they did different tests it was 99%. But I haven't heard about them using those additional tests on a control group of non-sick people. I think we possibly are jumping the gun. We should be lobbying to get insurers and Medicare to pay for the test. But if someone has the money then they are free to spend it however they wish IMHO; I'd be curious to know if I have this virus. My "CFS" is really Lyme but I guess it is also CFS and I don't know where misdiagnosed Lyme people fall into the XMRV thing.

  2. I agree, about not pitting ourselves against AIDS patients; of course, I will admit it's probably my own angry helplessness showing through, as I've watched nearly a decade of my life slip though my hands while I sit in limbo trying to get/stay well enough to come out of the sometime downhill slide, sometime holding pattern my life has become.
    I guess it's more about the unfairness of society not recognizing these illnesses as serious as they are. But...life's not fair, right?
    Oh, I'd definitely be curious to know if I had the virus, if I didn't have to pay for the test, I'd get it in a second, lol. But then, I can see how easily people can spend thousands, up to millions on promising treatments, going through their savings and all that, so I am very weary of companies offering something that is not going to help. Yet. If they do end up proving XMRV is the cause of these diseases, as you said, I hope insurance, public and private, will cover it. If not, I guess I'll have someone new to rage against, lol.

  3. XMRV is the cause. in three months, the in vitro studies will be done and they will have an idea of which drugs we can try. this is real. preliminary results are already coming out of other labs and they are replicating the findings. i just hope the drugs are obtainable for the average joe.


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