Melissa
Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
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updated February 27, 2012
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Melissa
Kaplan's |
Xenotropic Murine Leukemia Retrovirus-related Virus (XMRV)
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| God Bless the Internet which makes it ever so much more difficult for research--especially independently funded research--to be buried merely because it makes others look bad. Like, the researchers at the CDC who kept spending 'our' money (funds allocated by Congress specifically for research into the cause and treatment of Chronic Fatigue Syndrome [CFS]) on either trying to prove CFS was just depression or on pet projects having nothing to do with CFS. What follows are links to several articles and interesting inteviews about the recently published finding about the high incidence of XMRV in people meeting the clinical diagnosis of CFS, and my take on the finding, compiled from some posts I sent off to some email lists I'm on. Most Current XMRV Information (2010) Some of you may have heard about the U.K. studis that claimed to replicate the Mikovitz protocols and failed to find any XMRV. The following articles explain why they failed. [Apparently, the word "replicate" means something different in British English than it does in American English, at least when it comes to "replicate" being used by British researchers looking at "XMRV". ] The Second
U.K. "Study": WPI
Response to Second UK study (WPI, 02/18/2010) Second XMRV Negative Study …Still In Search of a Proper and Robust Replication Study (CAA) The Frist U.K. "Study": Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome XMRV Negative Results Emphasize Need for Robust Replication Study (CAA) Official Statement from the Whittemore Peterson Institute Regarding UK Study (PDF from WPI) Dr.
Judy Mikovits' Seminar on XMRV
The Original XMRV Links From October 2009 Whittemore Peterson Institute Scientists Discover Significant link between XMRV and ME/CFS, WPI (.pdf) Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome (4 KB) and Supporting Materials (3 MB), Science, Lombardi et al., 326 (5952): 585. (PDFs downloaded from ScienceMag.org) A Case of Chronic Denial, Hillary Johnson, NY Times Now we can get down to business, David Bell MD XMRV Associated with CFS, Gordon Medical Associates Is Autism Associated with a Viral Infection?, David Kirby, HuffingtonPost Retrovirus Might Be Culprit in Chronic Fatigue Syndrome, Nathan Seppa, ScienceNews
Video Interviews Mikovits & Whittmore Interview: Part 1, Part 2 Nancy
Klimas Considers XMRV and CFS: Chronic Fatigue Syndrome Advisory Committee (CFSAC)'s October 2009 was the first meeting to be videocast live. The vidcast files for the two days are available in the NIH Video Archives (Day 1; Day 2). If you don't want to play the entire day, ou can see excerpts of all the talks at CFSKnowledgeCenter.ning.com. If you would like to see just Dr. Dan Peterson's talk, here it is, in three parts, each about 10 minutes in length: Part 1, Part 2, Part 3 On Saturday, February 20, 2010, Drs. Paul Cheney and Judy Mikovits will be holding a free live web broadcast via speaker phones to answer questions on XMRV and CFS, at 2:00 EST (11 AM Pacific Time).
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Take on What Finding XMRV Means In The Whole Big Picture For those who aren't familiar with the CFS- and Lyme disease-related acronyms, here's what they mean: IAIYH = it's all in your head; TBD = tickborne diseases; CMV = cytomegalyvirus; EBV = Epstein-Barr virus. I. Having a day or two to digest this information, I thought I'd come and throw down my wet blanket... I think there's no reason for people to be scrambling to get tested until there is a definitive determination on what test(s) are needed and which lab should be used...and there's no point in racing out to get tested if there is at this time no treatment. Getting treated, whatever the treatment ends up being (to date, Retroviridae require 3 to 4 drugs to hit all the lifecycles of the retroviruses and their transcription processes that are nestled away inside of cells), may help some people a lot. But, for those of us who have been sick for a very long time, who have multiple primary and opportunistic infections going on (TBD, CMV, EBV, etc.), and whose bodies have already sustained a lot of damage from the years of illness and systemic dysregulation and dysfunction, I suspect treating XMRV will peel off a layer, but won't lead to a full recovery, and probably not even a 80-90+% recovery to pre-onset status for the majority of us. If treatment will help stop further damage from occurring, and peel off a layer of illness/infection that results in a reduction in overall stress and inflammation levels, our bodies will have a better chance at fighting off all the other crap they have to deal with, and so treatment may be worth it. Once the researchers have a chance to replicate the WPI study, and then start throwing existing drugs and new chemical compounds at this particular retrovirus in test tubes and petri dishes, something that may take years, well, that means widespread mainstream treatment for XMRV isn't something we're likely to see anytime soon. What the XMRV finding does do is shut up some of those idjits out there who still equate CFS with IAIYH (take that, Dean Edell! And up your culturally commentating retrovirass, Elaine Showalter!) with hysteria, factitious disorder (aka Munchausen's), and overprivileged white women's midlife crisis whining. What would be very interesting is if the researchers behind all this were able to follow the healthy control subjects in whom they found the XMRV, to check in with them over the next 10-20 years to see if they get sick, and if so, what type of illnesses. It might help with the figuring out the chicken-egg aspect of this: is it the cause of CFS, or a pre-disposing factor, or, like so many of the infections we fight, an organism that is always present but in very low numbers (sub-sub-clinical), unless something happens in the body to alter the balance of power, enabling a highly opportunistic organism the room to increase its population and expand its territory. Anyway, as interesting and exciting as this finding is, I for one (in case you couldn't tell ;) will not be holding my breath in expectation that an affordable (or covered by Medicare or any other insurance) test will soon be available, nor that effective treatment will follow shortly on the heels of finalizing the test protocols.
II. My one big concern with all this hype is that it is going to screw those of us already on SSI, SSDI, or LTD with CFS as a disabling illness, and make it that much more difficult for people applying for these types of disability benefits. At least, for a while, until the hype dies down, just so long as "XMVR test result" doesn't get added to the "proof of CFS" checklist these companies and agencies use. While the determination of whether or not someone is too disabled to work anywhere (essentially), applications are rejected if the applicant is not expected to be disabled for more than 6 months (at least in the case of SSI and SSDI). That's why it's tough to get disability for Lyme disease--because the ISDA says "you're cured with 3 weeks of antibiotics and if you're still sick, you're crazy/malingering/it ain't Lyme". If some flunkionary whose job depends on not approving as many disability applications as possible hears only RETROVIRUS HIV DRUGS TREATMENT, or insists the applicant provide the test results for an as yet unavailable test for an organism that may not even BE the cause of CFS, that many more sick people are going to be put through the wringer, getting sicker and broker as they fight to get approved. I can see a similar problem when review time rolls around for those of us already getting disability "for" CFS. (if SSA is true to form, I should be receiving my review forms later this month.) As some have pointed out, XMRV is just another in a long line of "causes". In 1988, when my dad got sick with EBV in his grief after my mom died, TIME magazine had an article about CFS and the presumption that it was caused by EBV. (My dad got better, and at 86 years of age, still walks a couple of miles every day, then works out on resistance machines and with free weights, still hearty and relatively hale despite a round with colon cancer 12 years ago, knee replacement 7 years ago, and aortic valve replacment last year. Me? Not so much the hearty or hale after I got sick in 1990.) I (well, my blood) was part of research being done by a Japanese researcher back in 1991 who was looking at a spumavirus as the "cause" of CFS. Then there was cytomegalyvirus. And low blood volume. And orthostatic intolerance / postural hypotension ("cure CFS with Florinef!"). And mycoplasma ("cure CFS with doxycycline!"). And Chiari syndrome ("cure CFS/FM with surgical correction of the posterior fossa!"). And mercury ("cure CFS by removing all your amalgam fillings!"). And, now, XMRV. If it is anything like the HIV retrovirus, those who go for treatment will embark on a life-long regimen of 3-4 drugs, 'cocktails' whose components will change over time, just as the current HIV treatment guidelines do (last updated in November 2008). If XMVR is like HIV and other Retroviridae, it cannot be eradicated. Check out the current HIV guidelines at the NIH site; page forward to page 25. XMRV is bad news for the IAIYH crowd. For those of us with CFS, it's just...news. Nicer news than we've had in a while, but just news to those of us whose lives, brains and bodies have been ravaged by this syndrome for one or more decades...
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http://www.anapsid.org/cnd/xmrv/incex.html
© 1994-2012 Melissa Kaplan or as otherwise noted by other authors of articles on this site
