Tuesday, September 7, 2010

XMRV Conference, Day 1

Head of the NIH Dr. Francis Collins opened the conference with a cautiously optimistic talk.  His take on XMRV and related MLVs combined "some skepticism" (largely due to the negative XMRV studies) with "enormous medical importance," if the positive papers win out.  As for the FDA/NIH/Harvard paper, Collins said that "differences might matter," referring to that study's findings of four XMRV-related MLVs in CFS patients and controls versus Dr. Judy Mikovits's XMRV finding.  Most importantly, he said a NIAID "multi-center study" on XMRV and related MLVs will be done and that he and NIAID Director Tony Fauci had discussed it.  Collins closed by saying it was a "very exciting time" and expected "great things" to come out of the discovery. 

Some of the information at today's conference was material from papers already published, and some came from papers not yet published that the researchers don't want out until they are published.  Frustrating to say the least--but none of today's findings were revelatory.  But tomorrow is another day.   I'll know more about what I can and can't report tomorrow. 

Dr. Ila Singh told me that she'll submit her autopsy study in a couple of months, and will submit her CFS study probably by the end of the year.  She wouldn't say what her findings are, but she has a very lovely smile.   

Dr. John Coffin was marvelous, talking a mile a minute--so fast that after a while you realize there's no way you'll ever be able to write as fast as he can speak. 

I chatted briefly with longtime CFS and HIV physician Dr. Nancy Klimas, who gave a word of caution about CFS patients using antiretrovirals, as they're known to mess with the cells' mitochondria. 

One light moment that had most everyone laughing came when one of the presenters, Dr. Ikeda, calmly bemoaned that the mice he used in his experiments were very aggressive, lightning quick, with the troublesome signature of "pretending to be dead when handled."

More to come.

Saturday, September 4, 2010


The XMRV conference at the National Institutes of Health (NIH) in Bethesda, Maryland, is days away.

Most of you are familiar with the lineup of speakers by now, including Drs. Judy Mikovits, Shyh-Ching Lo, Frank Ruscetti, Eric Klein, Robert Silverman, John Coffin, Sam Chow, Ila Singh, Kate Bishop, Brigitte Huber and Bill Switzer. 

Getting up to speed on the rules and regs at the NIH, I learned from the agency's website that conference attendees are forbidden to bring explosives, open containers of alcohol and archery equipment.  Supply your own joke here.

I look forward to reporting what I learn.

Monday, August 30, 2010


Susan Douglas, the British producer of the upcoming feature documentary What About ME?, told CFS Central that the filmmakers are seeking one- to two-minute clips from ME/CFS patients—“not prettied up, but as they are.”  Douglas wants to form a video community of patients to garner sources for the film and to get patients communicating with each other.

Annette Whittemore co-founded the Whittemore Peterson Institute and funded research into the retrovirus XMRV to help her daughter Andrea, who has lived with ME/CFS for 20 years.  Douglas’s film chronicles their story.  “It’s the story of what love can do,” explains Douglas, “woven through the world of suffering with ME/CFS.”

XMRV is the spine of the film.  The documentary will also examine the attitudes of governments, the medical profession and sufferers in Great Britain and the U.S.   “As it is a documentary, there will be elements of the story still unknown to us, as they unfold in front of our eyes, but I do promise you a very human drama, that is based on total truth, and an eye opener for the planet,” Douglas says.
Directed by British filmmaker Geoffrey Smith, best known for his award-winning documentary The English Surgeon, the film will be released in 2011.  A DVD is also planned, as are sales to television and cable channels, as well as online virals.  For more information on submitting clips and donating to the film, click here.  To read an earlier CFS Central article on What About ME?, click here.

Friday, August 27, 2010


The Dream Cast

Ixchelkali's comment about awaiting the ME/CFS mini series back on the June 20th post got me thinking:  Who should play the key roles in the ME/CFS saga from the 1984 outbreak in Incline Village, Nevada, to the present?  What's the dream cast?

Sometimes the physical similarities to the actual person drew me to a particular actor.  The energy of other actors dovetailed with that of the real-life people they would portray.  Some of these actors are so versatile—Peter Sarsgaard, Edward Norton, Phillip Seymour Hoffman, Patricia Clarkson, Laura Linney, Sissy Spacek, James Cromwell, I could go on—that they're well suited to more than one role.  Zeligs that they are, Sean Penn, Tom Wilkinson and Chris Cooper could play any of the male roles.

As long as we're dreaming, the mini series would be written by Eric Roth and Michael Mann (The Insider) or Matthew Weiner (Mad Men) or Ted Tally (The Silence of the Lambs), produced by Tom Hanks and directed by any of the following: Ron Howard (Frost/Nixon), Michael Mann (The Insider), Doug Liman (the Bourne films), Luc Besson (La Femme Nikita, The Professional), Martin Scorsese (The Departed; Goodfellas), Florian Henckel von Donnersmarck (The Lives of Others), Jonathan Demme (The Silence of the Lambs), Christopher Nolan (Inception; The Dark Knight), or Roger Spottiswoode (And the Band Played On).

Besides being a science writer, I've served as a TV editor and film critic, so this assignment was especially fun and a break from the usual. After this news-heavy week, a casual Friday seemed long overdue. Please submit your casting suggestions as well.

Dr. Elaine DeFreitas (a former researcher at the Wistar Institute who discovered evidence of a retrovirus in ME/CFS patients in 1991)
Edie Falco
Illeana Douglas
Cher (if she were 20 years younger)

Dr. Paul Cheney (who, along with Dr. Daniel Peterson, reported an outbreak of ME/CFS in Incline Village, NV, to the CDC in 1984)
Edward Norton
Ralph Fiennes 

Dr. Daniel Peterson (co-founder of the Whittemore Peterson Institute and co-author of the Science paper linking XMRV to ME/CFS)
Colin Firth
Peter Krause
Campbell Scott
Peter Sarsgaard
Josh Brolin

Dr. David Bell (ME/CFS physician who reported an ME/CFS outbreak in Lyndonville, NY, to the CDC in 1985)
Philip Seymour Hoffman
Richard Dreyfuss

Dr. Stephen Straus (head of CFS research at the NIH until his death) 

Dr. William Reeves (chief of CFS research at the CDC for 20 years)
Jeremy Irons
Stanley Tucci

Hillary Johnson (author of Osler's Web)

Marc Iverson (founder of the CFIDS Association)
Matt Ross

Kim Kenney McCleary (CEO of the CFIDS Association)

Dr. Anthony Fauci (director of the National Institute of Allergy and Infectious Disease) 

Dr. Nancy Klimas (HIV and ME/CFS physician)
Dr. Anthony Komaroff (Harvard ME/CFS physician and co-author of the FDA/NIH/Harvard MLV paper)

Congressman Jerrold Nadler (who spearheaded the 1996 congressional investigation into the CDC misappropriation of CFS-allocated funds)
James Gandolfini

Dr. Simon Wessely (a well-known British psychiatrist who has long held that ME/CFS is a psychiatric illness)
Ben Kingsley

Dr. William Carter (inventor of the experimental HIV and ME/CFS drug, Ampligen)

Nancy Kaiser (Patient 00, the first person to take Ampligen for ME/CFS)
Judith Ivey

Dr. Kenny de Meirleir (Belgium ME/CFS scientist)

Dr. Lucinda Bateman (ME/CFS physician)
Allison Janney 

Dr. Myra McClure (retrovirologist on the first British XMRV study)
Tilda Swinton

Andrea Whittemore (ME/CFS patient and daughter of Annette Whittemore)
Amanda Seyfried
Keri Russell
Michelle Williams
Evan Rachel Wood
Sarah Polley
Deborah Ann Woll
Dakota Fanning
(the early years)
Sofia Vassilieva (the early years)

Annette Whittemore (co-founder of the Whittemore Peterson Institute and mother of Andrea Whittemore)
Vera Farmiga
Susan Sarandon

Dr. Judy Mikovits (retrovirologist and principal investigator of the first XMRV study in ME/CFS patients)
Frances McDormand

Dr. Leonard Jason (ME/CFS researcher)

Dr. Wanda Jones (deputy assistant secretary for Women's Health in HHS) 
Angela Lansbury (15 years ago)
Betty White (15 years ago)

William Switzer (principal investigator of the CDC XMRV study)
Dr. Eric Klein (Cleveland Clinic urological surgeon and coauthor of the first XMRV study linking XMRV to prostate cancer)
Tom Wilkinson  

Dr. Robert Silverman (Cleveland Clinic researcher and coauthor of the first paper linking XMRV to prostate cancer)

Dr. Ila Singh (XMRV researcher)

Dr. Randy Schekman (editor-in-chief, Proceedings of the National Academy of Sciences)
Ron Rifkin

Dr. Harvey Alter (NIH scientist and coauthor of the FDA/NIH/Harvard MLV study)

Dr. Shyh-Ching Lo (FDA scientist and coauthor of the FDA/NIH/Harvard MLV study)