Saturday, November 13, 2010

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
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  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. 
Larry Gilman


  1. What a great letter to DEMOCRACY NOW! Larry, you have inspired me. I doubt I can come near yours, but I'm going to send a letter too.

    Patricia Carter
    XMRV+, 24 years ME

  2. Priscilla --- you and Larry rock. :)


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