1970: In the British Medical Journal, psychiatrists Colin McEvedy and A.W. Beard categorize ME/CFS outbreaks as mass hysteria. Many patients and physicians write letters refuting the authors' hypothesis.
1986: As reported by Hillary Johnson, Dr. Stephen Straus, then head of CFS research at the NIH, theorizes to fellow physicians about CFS: "Maybe these are the individuals who... don't want to drive their BMW unless they feel up to it, and they need our help to get behind the wheel."
1994: Dr. Stephen Straus, then head of CFS research at the NIH, launches a CFS workshop with a slide of a Victorian woodcut of a woman recumbent on a couch with her hand clasping her forehead, as chronicled by Hillary Johnson in Osler's Web.
1996: In 1996, Primetime Live television correspondent Dr. Nancy Snyderman interviews Dr. Philip Lee, then Assistant Secretary of Health. The exchange, emphasis added:
PL: Do we have clusters of cases? Oh yes, I do.
NS: Dr. Reeves [then head of CFS research at the CDC] told the producer for this piece that in fact the Lake Tahoe "cluster"didn't exist and the people living there are hysterical.
PL: Well again, that's his view.
NS: But he's a scientist at the CDC; he's responsible for investigating these kinds of things.
PL: The CDC did investigate that. They reached certain conclusions, which many people disagree with.
NS: Do you believe it's a virus?
PL: I really don't know, I mean….
NS: If you had to take….
PL: Well I would guess….
NS: An academic hunch….
PL: Well I would say it would be a retrovirus or a virus, I would think so.
NS: Lee says the government is making progress. But Hillary Johnson, whose book [Osler’s Web, the exploration of the ME/CFS epidemic and the government’s apparent disinterest in dealing with it] is being released today, remains unconvinced:
HJ: I think it's one of the most incredible medical stories of our century and it's going to be very, very hard for the government to change its position on this disease. I mean to have to sort of call up the American public and say, hey, you know that disease that we've been calling chronic fatigue syndrome for the last ten years, well guess what, it's really something far more serious and it's transmissible and we made a mistake in [Lake] Tahoe and we've been making a mistake ever since.
2006: A group of American researchers at the Cleveland Clinic discovers a new human retrovirus in men with a virulent form of prostate cancer. They christen the retrovirus XMRV, which stands for xenotropic murine leukemia virus-related virus. There are only two other known human retroviruses: HIV and HTLV. XMRV is closely related to a mouse retrovirus. The last retrovirus to jump species was HIV—from monkeys to humans.
- The retrovirus XMRV in 67 percent of 101 patients.
- The study also finds XMRV in 3.7 percent of apparently healthy controls, which would translate to 10 million Americans. In contrast, 1 million Americans live with HIV/AIDS.
June 2010: The Food and Drug Administration and the National Institutes of Health conduct an XMRV study that reportedly finds XMRV in 80 percent of patients with ME/CFS—up from the 67 percent found in the October 2009 Science study. In addition the FDA/NIH study reportedly finds 3 to 7 percent of apparently healthy controls are XMRV positive as well, raising concerns about the safety of the blood supply.
This article, “A Commotion in the Blood,” is copyright CFS Central 2010. All Rights Reserved. You may quote up to 150 words from this article as long as you indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is by Mindy Kitei for CFS Central. You may not reprint more than 150 words from this article on blogs, forums, websites or any other online or print venue. Instead, refer readers to this blog to read the article.
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