The Umph to Act: Getting Press Coverage for XMRV and ME/CFS

The ME/CFS activist community is working nobly on Many Fronts.  One of the numerous big needs is getting more and better press coverage, both for XMRV and ME/CFS.  I think part of that effort should be seeking the interest of individual journalists.  Larry and I are focusing on Amy Goodman, host of Democracy Now! because we know and love the show and because Amy gives substantial coverage to stories, particularly on social-justice issues.  With conventional news outlets, one often needs to have some THING you’re doing to get the interest of the journalists.  With Democracy Now!, I think our story itself has a real chance of being compelling.

Last Fall, Larry wrote a letter to Democracy Now! about XMRV and ME/CFS, and I followed up with this cartoon plus a page of contact resources.  I plan to keep updating Democracy Now! as things unfold.  Persistence is key.  I hope other people will also write to Democracy Now! and will identify other journalists whose beat fits our story.  Anybody care to join me, either pursuing Democracy Now! or another journalist/outlet?

Click image to enlarge.

Bugging Francis Collins Some More

Well, you’ve convinced me.  The positive comments on my first activist cartoons faxed to Francis Collins, director of the NIH, turned me around and decided me on sending more.

Click on image to see larger; click again on image that comes up to see nice and large.

I know I’ve had a lot of ME/CFS/XMRV activism posts lately, which may not be as interesting to some people, but it feels like we’re at a critical moment.  There’s a possibility that something may really change . . . and we have to do what we can to make sure it does.

Image reposted May 28, 2011.

XMRV, ME/CFS: Cover the Story!

Another guest post by Larry Gilman.  (Don’t worry, the next one will be by Priscilla!)

Democracy Now! is a superb, 1-hour, daily news program that typically gives substantial coverage to stories and lets people talk at length about their knowledge, rather than deliver a few soundbites.  What follows is the text of a story idea Priscilla and I just sent to the staff.  It would probably help if other people also expressed to Democracy Now! their belief that this story needs coverage: the link is here. — Larry

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Dear Democracy Now!,

I’d like to alert you to a story idea.

It’s a mixture of recent science news, US government malfeasance and indifference dating back to the 1980s, and the possibility that an infectious, disease-causing retrovirus (or group of closely-related retroviruses) has established itself in 3–9% of the US population partly due to that malfeasance and indifference.

The latest round of the story began with the publication in the prestigious journal Science of an article announcing an association between a recently-discovered retrovirus, XMRV (only the third known infectious retrovirus in humans, HIV being the most famous) and “chronic fatigue syndrome” (CFS, more recently acknowledged by the less trivial-sounding term “myalgic encephalomyelitis/CFS” by a group at the National Institutes of Health (NIH); see under “Name Change” here).  Full Science article here.  Note the hair-raising last sentence: “several million Americans may be infected with a retrovirus of as yet unknown pathogenic potential.”

This was especially newsworthy because the US Centers for Disease Control (CDC) has been doing its best to deny a physical, as opposed to psychiatric, cause — most especially to deny the possibility of an infectious cause — for ME/CFS since the 1980s.

The story even got coverage in some mainstream media (e.g., here and here).  A number of “negative studies” have since failed to confirm the Science results (indeed, in what is perhaps a sign of methodological problems, most have failed to find the new retrovirus in anybody at all), but a study by NIH scientists has confirmed them.  Scientific debate continues. 

The history of ME/CFS and of the CDC’s role in doing as little as possible about the disease started in the 1980s.  Federal investigators have found that the CDC funneled millions of bucks allotted for CFS to other purposes: “However, in 1999, the Inspector General of HHS reported that CDC had expended $8.8 million on activities unrelated to CFS and $4.1 million on inadequately documented indirect costs—as much as half of the funds the committees recommended for CFS” (quoting a GAO report).

The authority on all this history (and an ideal guest for any piece you might do) is Hillary Johnson, author of the book Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (1995, 2006).  Her NYT op-ed on the CDC’s awful history on this subject is here.  Johnson’s work triggered the federal investigations of the CDC mentioned above.  Her website is http://www.oslersweb.com/.  There she publishes the text, obtained I believe through FOIA, of a letter posted on a CDC bulletin board in the late 80s mocking CFS patients.

What’s the ongoing story?  The NIH and CDC are still not allocating sufficient funds to this disease, which afflicts at least a million Americans according to the CDC itself (prevalence estimate here).  The NIH is spending no more in 2010 on ME/CFS than it is on studying hay fever (by its own estimate)!  In 2010, hay fever got $1 million of ARRA money through the NIH, but ME/CFS a whopping $0 (same source).  And this for a disorder, ME/CFS, conservatively estimated to cost the US economy $20 billion per year  — not to mention untold suffering.  It has been said that “this is a disease that erases lives.”  And leading retrovirologist Dr. John Coffin has warned that “the momentum on [XMRV research] will tend to run out after a bit without additional money being put into this at some level or another.”

Pretty freakin’ scandalous.

One of the scientists who did the research that broke in Science a year ago is Dr. Judy Mikovitz, who is eminently interviewable.  She can be contacted through the Whittemore-Peterson Institute — the small, privately-funded foundation that did the breakthrough work that the NIH and CDC have failed to do for 25 years and that was published in Science in 2009. 

So —  I hope you will agree that there is tremendous need for more coverage of this amazing story. 

In any case, I remain profoundly grateful to the whole Democracy Now! team for all your work. 

Sincerely,

Larry Gilman

The Tuskegee Mentality: Condemning Antiretroviral Treatment for ME/CFS

Guest post by Larry Gilman.

In the latest issue of The Journal of Infectious Diseases, Drs. M. Kearney and F. Maldarelli (K&M) have “strong words,” as Paul Sax puts it, for doctors prescribing antiretrovirals for XMRV/MLV-positive ME/CFS patients.  K&M write:

At this time, such an approach is premature and medically indefensible outside the secure oversight of a well‐controlled clinical trial. “Real world” coping with severe diseases like chronic fatigue syndrome and prostate cancer creates understandable desperation on the part of patients, caregivers, and health care professionals. Such pressures are not justification for testing of therapies in an uncontrolled manner. Indeed, because they are of no help whatsoever to other patients, physicians, pharmaceutical companies, or regulatory agencies, such uncontrolled therapy works directly against the goal of providing effective therapy to the million or more individuals experiencing these serious conditions.

Unfortunately, this righteous reprimand is riddled with fallacies.

(1) Off-label prescription of drugs (prescription for conditions not named in FDA approvals) is legal and common. One can slight such usage as “uncontrolled” — and it is, in the rarified sense that it is not overseen by an Institutional Review Board (as it would be in a research trial) — but it is not necessarily unreasonable, unethical, or ineffective.

(2) It is also normal to prescribe therapies despite uncertainty about whether they will work for a given patient.  Even approved treatments always carry some burden of uncertainty.  It is clearly defensible to attempt any therapy for any patient if an informed judgment has been made jointly by patient and doctor that the likely benefits outweigh the risks.  K&M, in condemning ad hoc treatment of retrovirus-positive ME/CFS with antiretrovirals found effective in vitro, imply that flawed risk-benefit judgments are being made.  But in which cases?  Flawed how?  They haven’t said.  Nor, so far as I know, has any other critic of these efforts.

(3) Observations of statistically insignificant numbers of patients (e.g., clinical experience, pilot studies) often inform the design of large, rigorous studies.  Far from preventing or impeding scientific studies, small-scale experience commonly stimulates them.  Every rigorous study begins with an educated guess; clinical experience with small numbers is often part of the education.  Researchers should try to learn from the nonsystematic but clinically reasonable use of antiretrovirals with ME/CFS, not shame it out of existence.

(4)  It is not true that ad hoc treatment of a few patients with particularly dire ME/CFS outside of randomized, controlled clinical trials “works directly against the goal of providing effectual therapy” to other patients.  The number of patients receiving ad hoc treatment — even if it grew to the tens of thousands, which it seems unlikely to do — is far too small to impede the conduct, now or later, of large, strictly designed trials, which have an ME/CFS population of at least a million (judging by CDC studies) to draw from in the US alone.  K&M do not say how, they think, scattered ad hoc efforts will impede research — and I don’t think they can. The vanishingly tiny fraction of ME/CFS patients that receives antiretroviral treatment will simply be excluded from studies using such drugs, with no harm done.

(5)  Most seriously, K&M—like other critics of ad hoc treatment — seem to me to confound research ethics with clinical ethics.  Researchers are obliged to gather the most objective, accurate scientific knowledge they can while doing, so far as is humanly possible, no harm: clinicians are obliged to do all the good they can for the people in their care, period.  In the clinic, only the individual patient’s well-being, not the advancement of science, may be consulted.  The patient has a right to demand, and the doctor a duty to provide, any treatment that in their joint judgement may improve the patient’s overall condition.  Far from being obligatory, it is forbidden for a doctor to consider the advancement of science in deciding whether to withhold any reasonable therapy from a patient who wants it.  The idea that patients must—or even may—be denied treatment in order to advance science is nothing short of a Tuskegee mentality.  Thus, even if it were true that ad hoc antiretroviral treatments are somehow impeding rigorous research (which they aren’t), it would still be unethical to urge the blanket denial of such treatments for the sake of the research.

Strong words, yes—for radically wrongheaded condemnation of the treatments now being attempted. 

The ethical shoe is really on the other foot.  Doctors prescribing antiretrovirals for retrovirus-positive ME/CFS are making a reasonable attempt to help very sick patients.  Those who argue that doctors should never do any such thing because it might somehow (how?) slow the gathering of scientific knowledge show a disturbing tendency to view patients as a source of scientific information, rather than as people deserving the best care possible—even in the midst of uncertainty.

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My essay comparing the recent controversy over XMRV/MLV to an earlier controversy in bioscience, the maize transgene flap, is here.  I blog sporadically on science-related issues here.  Professional website here, religion-and-science blog here. 

Dear Mr. Francis Collins

Here’s the cartoon I faxed to Francis Collins, Director of the NIH, as part of the Time for Action campaign to get public officials serious about ME/CFS:

(Click once on each image to view larger.)

Based on the response, the organizers deemed the campaign a rapid success and called it off, asking everyone to send one final Thank You.  

I may draw those cartoons yet, though; this is just the beginning.

A bonus for me was discovering faxing cartoons as an accessible form of activism!

Thoughts in the Middle of the Night: Trying to Get Tested for XMRV

This audio runs a little over three minutes.

Sweet Vindication: NIH/FDA Study Confirms Retroviral Infection (XMRV and MLV-related) in CFS

I took a quick break from my blogging break for this one . . .

Monday was a heady, exhausting day, with the long-awaited NIH/FDA study coming out mid-afternoon.  I cartooned all afternoon in my head, then managed to get this one out on Tuesday:  [click on image to enlarge]

Tuesday, Wednesday, Thursday, blogs of my fellow invalids were notably quiet, with a few putting up a notice of the new article and apologies for being flattened beyond saying more. 

Still Waiting

NOTE:  If you don’t know what this is about, follow this link for a rundown.

End of June, word was that scientists at NIH had confirmed the Science study linking XMRV with CFS.  I was eager but cautious.

Then Health and Human Services decided to hold the paper, along with a CDC paper which had come to the opposite conclusion, because the two did not agree.  I was mad.

Soon the CDC paper was released.  And I felt a little crazy.

What could I do but wait for the NIH paper to come out too?  Weeks blew by.

Feigned indifference now relieves me of perpetual expectation.

But that could change any day.

Happy XMRV news on its way...

In case you haven't heard, word is that NIH and the FDA have confirmed the original Science article which found an association between chronic fatigue syndrome and the newly identified retrovirus called XMRV. But, alas, the news is not really out until it's out.  And so far it isn't really out.

All This Has Happened Before: the XMRV/CFS Imbroglio, Act II

NOTE:  This is a guest post by my husband, Larry Gilman, and also appears on his blog, No Longer by Thinking.

The now-famous 2009 Science paper by Lombardi and colleagues [1] showing a strong correlation between the human retrovirus XMRV and chronic fatigue syndrome (CFS) did not parachute into the middle of nowhere. As Hilary Johnson’s Osler’s Web recounts, feelings have been running high on this subject since the 1980s. Careers have been devoted—especially, but not only, in the United Kingdom—to the idea that CFS is not a physical disorder but a psychological one. The Science paper was bound to be unpleasant reading for anyone who had treated scores of CFS patients on the psychological theory and put their professional credibility on the line to defend that theory.

Opponents of physical-cause theories of CFS were therefore cheered by the appearance in January, 2010 of an article appearing to refute the Science piece. The new article, “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome,” by Erlwein et al., [2] was hailed as showing that the Science piece was a false alarm: “Scientists’ claim to have found the cause of [CFS] is ‘premature’,” headlined The Independent, a British newspaper. [3] Nothing to see here, folks—it’s all over—move along, move along.

But as the Cylons repeat so annoyingly on Battlestar Galactica, “All this has happened before; all this will happen again.” Indeed it has, and indeed it will. Consider a recent case involving another highly charged subject, genetic engineering of crops.

Act I: Threatening Breakthrough

In 2001, David Quist and Ignacio Chapela of U.C. Berkeley announced in Nature that transgenes—chunks of DNA artificially transferred from one species to another—had been found in traditional maize landraces in central Mexico. [4] (A “landrace” is any locally-adapted domestic plant breed.) The study seemed to show that modified genes could spread uncontrollably in the real world, as opponents of genetic engineering had always warned. If so, transgenes might threaten the character or continuance of the Mexican maize landraces, altering the Mexican diet and the global fate of corn itself. As Quist and Chapela put it,

Concerns have been raised about the potential effects of transgenic introductions on the genetic diversity of crop landraces and wild relatives in areas of crop origin and diversification, as this diversity is considered essential for global food security. Direct effects on non-target species and the possibility of unintentionally transferring traits of ecological relevance onto landraces and wild relatives have also been sources of concern.

Act II: Triumphant Counter-Study

Genetically modified corn is big business: 25% of the world’s corn, including 80% of US corn, is genetically modified. [5] It is therefore not surprising that the 2001 paper was intensely attacked for minor methodological flaws. Under pressure, Nature took the unprecedented step of publishing a quasi-retraction (not approved by the authors, Quist and Chapela) stating that “the evidence available is not sufficient to justify the publication of the original paper.” [6]

The debunking process seemed complete in 2005, when a paper in the Proceedings of the National Academy of Sciences reported finding not a single transgene in thousands of maize samples from the same parts of Mexico examined by Quist and Chapela: zero, repeat, zero transgenes in 153,746 sampled seeds. [7]

In certain quarters, the relief was palpable. The zero result was taken as grounds not for questioning the second study but for scolding the first. In a 2006 review [8] of the preceding decade’s nine worst “biotech gaffes,” the editor of Nature Biotechnology spanked Quist and Chapela for being partly “culpable for lukewarm public acceptance and stigmatization of transgenic crop technology.” That’s right, culpable as in deserving of blame. “With so many of the groups ideologically opposed to transgenic crops able to exploit the media, scare the public and perpetuate myths and conspiracy theories about genetic engineering over the Internet,” the editor harrumphed, “prestigious journals [e.g., Nature] should be aware of the long-lasting damage resulting from their willingness to widely publicize results that may be contentious or equivocal.” The maize-transgene scare had “certainly contributed to the decline of European agbiotech.” Very, very naughty.

In the backlash against the original article the academic career of one of its authors, Chapela, was almost destroyed by denial of tenure, but he won in court. [9]

Act III: Vindication

In late 2008, a paper in the journal Molecular Ecology [10] vindicated Quist and Chapela on the basis of tens of thousands of Mexican maize samples. Once again, transgenes had been found in Mexican corn landraces. What is more, the authors of the new study explained exactly why different studies had been getting different answers and explained the false-negative results of the 2005 Proceedings of the National Academy of Sciences paper in detail. Even the lead author of that 2005 paper, invited to comment in the same issue of the journal, sportingly pronounced the new piece “a very good study.”

It does not appear, however, that the editor of Nature Biotechnology ever retracted his attacks on Quist and Chapela’s integrity. Indeed, I know of no apology or retraction from anyone who had accused Quist and Chapela of bad science.

Observations

The parallels of the Mexican transgene saga to the XMRV saga are striking: In Act I upsetting primary science appears and solemn warnings against taking a single study too seriously are issued. In Act II, a single study offering to overturn the original is hailed with relief and trumpets. In Act III, the primary science is vindicated—at least, it was with the maize transgenes. There has been no vindicating third act yet for the XMRV/CFS theory, but there are at least three reasons to bet on one.

First, getting a zero result where multiple, independent previous studies have got a nonzero result should be a red flag with any new XMRV study, just as it should have been during the Great Mexican Maize Mystery. Zero? Are you sure you’ve taken the lens cap off the camera?

Second, both zero-result studies—the maize study and the UK XMRV study—used tests for the presence of the target gene or virus different from those used in the studies they challenged. In the case of the maize transgenes, this turned out to be the crux of the problem. Whittemore Peterson states that “the recent study published in the U.K. . . . used non-validated PCR and whole blood PCR assays.” [11] Moreover, the UK study did not select candidates for study using the Science study’s standard, thus producing a twofold apples-and-oranges problem.

Third, the UK XMRV study was rushed through peer review in a few days, according to the Whittemore Peterson Institute. [12] [PS: Actually, as a friendly commenter points out, this is according to the online journal where the piece was published: here’s a screen shot from the source:]

Science is done by human beings, not gods or robots. Its glory is that its method of community-scale, independent checking and criticism almost always enables the production of increasingly accurate knowledge, over time, by a group of people—scientists—who are not increasingly wise or perfect. But in the short term, especially where powerful economic and other interests are involved, the data that some people want to see have a tendency to appear—or the data they do not want to see may be long delayed by diversion of funding and other tactics. Reality wins in the end, but the end may be a while in coming.

Extraordinary claims do require extraordinary evidence, and it is easy to be jerked around by a single paper here and a single paper there. But in the case of the XMRV imbroglio, my money is on the Whittemore Peterson people, who have clearly done the more thorough work. In any case, more studies are under way, and if they are of adequate quality, they will settle this dispute—scientifically.

Unfortunately, that will not necessarily settle the dispute altogether. To answer any scientific question in a way that some people strongly dislike seems to automatically give birth to a new form of denialism. Evolution and global warming already have millions of entrenched, unconvincable unbelievers: is XMRV next?

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REFERENCES

Note: I will e-mail copies of the subscription-required articles to anyone who asks me (Larry) for them: lnpgilman [ a t ] wildblue [ d o t ] net

Note:

1. http://www.cfids-cab.org/MESA/Lombardi.pdf

2. http://www.plosone.org/doi/pone.0008519

3. http://www.independent.co.uk/news/science/scientists-claim-to-have-found-the-cause-of-me-is-premature-1859003.html

4. Quist, David and Ignacio H. Chapela, “Transgenic DNA introgressed into traditional maize landraces in Oaxaca, Mexico.” Nature, 414 (Nov. 29, 2001), 541–543.

5. http://www.gmo-compass.org/eng/agri_biotechnology/gmo_planting/341.genetically_modified_maize_global_area_under_cultivation.html

6. http://www.nature.com/nature/journal/v416/n6881/full/nature738.html

7. Ortiz-Garcia, S., et al., “Absence of detectable transgenes in local landraces of maize in Oaxaca, Mexico (2003–2004).” Proceedings of the National Academy of Sciences, 102(33), August 30, 2005, 12338–12343. Available at http://www.pnas.org/content/102/35/12338.full.pdf.

8. http://www.nature.com/nbt/journal/v24/n3/full/nbt0306-270.html

9. http://www.counterpunch.org/tonak06262004.html

10. Piñero-Nelson A., et al., “Transgenes in Mexican maize: molecular evidence and methodological considerations for GMO detection in landrace populations,” Molecular Ecology (2009) 18, 750–761.

11. http://www.wpinstitute.org/news/docs/WPI_pressrel_011410.pdf

12. http://www.wpinstitute.org/news/docs/WPI_Erlwein_010610.pdf

Fund the Research

The XMRV and other research of the Whittemore Peterson Institute is creating the possibility of radical change for lots of people like me.   There really needs to be substantial, well-administered funding from the feds for study of XMRV and of the neuroimmune disease now absurdly called "chronic fatigue syndrome".  So far that isn't happening.  So, friends, family, passersby: Donate if you can!

 

I know, I know, XMRV has not been proven yet to cause disease, and my cartoon kinda assumes it does.  That's cartooning; reality must be simplified.

Waiting in Limboland with XMRV

A subset of sick people round the globe are in an odd state just now.  We have this tantalizing bit of new information, that a newly-identified retrovirus is showing up in a high percentage of very sick people with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).  But it is just one published study (Lombardi et al., "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome," Science [Sciencexpress, online], Oct. 8, 2009), and everybody knows scientific certainty and causal linkage require more than one study.  So we’re waiting.
 
I’ve calmed myself down partly through mental exhaustion.  I just have to.  And I’ve been lulling my mind with the thought of January.  I’ll expect something more by January.  More information by January.  January.  Don’t worry, Priscilla, January is coming.  I have no particular reason to expect anything in January; it’s just far enough away to be reasonable (as opposed to tomorrow) and close enough to be comforting (as opposed to 2020).  My mind can curl around the thought, settle down, and purr.  January, yes. 

And I gather things are moving fast.  I don’t think Judy Mikovits, director of research at the Whittemore Peterson Institute (which conducted the original study linking XMRV and ME/CFS), was waiting for the article in Science to come out before continuing her work.  So we might hear something more from her team, in the form of published findings, soon . . . say, by January.  In the meantime, I’ve been looking around for good criticism of their study.  If there are problems with it I want to know about them.  A false hope is of no use to me.  So far I haven’t found any telling critiques.  Among the people who are equipped to understand the science, there have been a few turf-defending weenies whose peevish remarks were easily answered, but I have not been able to find any substantive criticism.   Mostly there’s only the sound of shoes tapping on the linoleum, as scientists head back to their labs to see what they can find.  That’s what we need.  If it’s going to be refuted, it will be refuted from the laboratory stool, not the library armchair.

It has been interesting, though, to try to find some legitimate criticism.  One of the most common objections is, “We’ve been through this before with other microbes.”  I thought something similar when I first heard of the finding.  I thought I would file it away and wait and see what happened.  A related dismissal has issued from Dr. Jacob Teitelbaum, who wrote a useful book with an offensive title, From Fatigued to Fantastic (which my Larry calls From Fucked to Fucktastic).  He has immediately incorporated the news into the model of CFS he’s already using: there are many factors in CFS, including lots of viruses, treating infections is already part of my protocol, this is just another infection, it will be good to treat it too.  Like almost all the other critics I’ve read, Dr. Teitelbaum opinionates freely without addressing the specific research findings.  The technical term for this is “hand waving.”  The term for the work of Dr. Mikovitz and her colleagues is “science.” 

Science runs on numbers.  Scientists love numbers so much they even use numbers to talk about their numbers. 

The frequencies of CFS cases vs. healthy controls that were positive and negative for XMRV sequences were used to calculate a Pearson [chi-square] value of 154 (two-tailed P value of 8.1 × 10^–35). These data yield an odds ratio of 54.1 (95% confidence interval of 23.8–122), suggesting a non-random association with XMRV and CFS patients.

Here’s an abbreviated version of the statistics tutorial that my Larry gave me.  (I hope any real statisticians who wander by have someone handy to catch them if they faint.)  Let’s just take the P value.  The P value is a statistical expression of the strength of the null hypothesis.  The null hypothesis says there isn’t actually any difference between whatever two things you’re trying to compare: null.  In this case, we’re comparing rates at which XMRV DNA is isolated from blood of CFS patients versus healthy controls.  The P value is a number between 0 and 1, 1 being absolute victory for the null hypothesis, 0 being absolute defeat.  The convention is to reject the null hypothesis if your P value is less than .05 or .01.  I guess there are slightly different conventions, but we’ll go with .01 because we like rigor. 

The P value for this comparison of infection rates in CFS patients and healthy controls is 8.1 × 10^–35.  Powers of 10 are used in science to compactly express very large and very small numbers. In this case it’s a very small number.  That 10^–35 means you take the decimal point in 8.1 and move it 35 times to the left, adding 34 leading zeros.  That’s a very small number.  It’s a whole lot smaller than .01.   The number “.01” is one one-hundredth; 8.1 × 10^–35 is just a tiny bit bigger than a trillionth of a trillionth of a trillionth.  It suggests, it indeed suggests, “a non-random association between XMRV and the CFS patient population.” Larry said that statement was the driest humor he had ever read.

If any other studies of viral or bacterial infections in CFS patients have had this kind of statistical strength in their findings, I’d like to know about it.  But I don’t think they have.   All those other viruses and bacteria are common in the general population and easy candidates for opportunistic infection.  This one, so far as we know, is not. 

The results of this study, this new research, are uncertain, but they’re also unprecedented.

XMRV

So, wow—I mean, wow!  So, there’s this virus, a retrovirus to be specific, called XMRV—“xenotropic murine leukemia virus-related virus”—that was only identified in the last few years, and just super-recently, researchers with the Whittemore Peterson Institute for Neuroimmune Disease (my new heart-throb) have detected this virus in—well, lots of people with myalgic encephalomyelitis/chronic fatigue syndrome.  The study is published in Science—super-duper prestigious—go, go! 

I’ve never had that diagnosis, but looking at the diagnostic criteria on the Whittemore Peterson Institute’s website, it’s the best description of my whole problem I’ve ever seen.  These are the Canadian diagnostic criteria.  (Kisses to Canada.)  Most descriptions I see as I look around list “chronic sore throat” prominently and don’t mention autonomic dysfunction at all or often even pain.  No wonder I haven’t thought this was a very relevant category for me.  (Though I have doubted sometimes as I have encountered people very similar to me with the diagnosis.) The CDC criteria also come nowhere near encompassing my situation.  I haven't pushed for an encompassing diagnosis before because the available ones didn't seem very useful.  I'm hoping this news will change the picture.  Maybe, ME/CFS will get a better name too.

For me, the big wowser here is not only a possible viral cause for my trouble, but also the news that a diagnostic description that truly fits me exists at all.  And not only that, but there are people using that description as a basis for serious research. 

Here is another run-down on the news, which I thought informative.

(The original technical article from Science can be downloaded here.)