Thursday, September 29, 2011


BFFs Dr. Jay Levy and Dr. Daniel Peterson have penned a disappointing, ho-hum retread of the ME saga—you know, the serious disease that no one takes seriously?—in tomorrow’s LA Times.  There's Levy’s worn-out theory about immune reactivation as the culprit (presumably perpetrated by Levy’s mysterious hit-and-run virus), and the multiple-cause hypothesis, which is often proposed when the actual cause isn’t known. The duo even suggest a better name for CFS:  CFIDS!  Uh, gentlemen, didn’t we try that once before?

There’s some weird distancing in the article when it comes to the XMRV Science paper, on which Peterson was a coauthor: “The most dramatic example [of theorized causation] came two years ago when a group of researchers reported finding a mouse-related virus called XMRV, a pathogen in the same family as HIV, which causes AIDS. They believed they had identified this virus in the blood of a several patients with chronic fatigue syndrome, raising the hopes of patients everywhere.”

The op-ed piece finishes with the patients being frustrated and more research dollars being needed—fair enough, except that had I read the article knowing nothing about ME, I wouldn't think the disease was particularly serious, but I would think that the patients were kinda whiny. 

It’s one thing when Amy Dockser Marcus of the Wall Street Journal dashes off this kind of piece—she doesn’t see patients all day every day.  But why would Dan Peterson, who understands this disease in every pore of his being, present ME this way?  Why not talk about the patients in wheelchairs, the ones with heart failure and seizures, the ones who can’t stand up, the ones who are too weak to wash their hair or walk to the mailbox, and the ones who have lost their lives to this disease, so the public and researchers can begin to grasp just how disabling ME can be? Why not tell the truth?

Thursday, September 22, 2011


Anyone at the Ottawa ME/CFS conference who wants to share any news, please send it to: or just post a comment the usual way in this post on Blogger. As short as a Tweet, as long as a page.  Thanks. 

Wednesday, September 21, 2011


Tomorrow Science will publish the Phase III study by the Blood Working Group, which includes scientists at the Whittemore Peterson Institute, the Food and Drug Administration, the National Cancer Institute, the Centers for Disease Control, and the commercial labs Abbott and Gen-Probe.  

Tomorrow at 3 p.m. EST, ScienceLive, a weekly live chat hosted by Science's Martin Enserink, will delve into "the science and controversy surrounding Chronic Fatigue Syndrome," explained the show's producer Daniel Strain in an email.  Those interested in participating in the show can click here and post questions to guests Dr. Michael Busch of the Blood Research Institute in San Francisco and Dr. Jay Levy of University of California at San Francisco. Levy's XMRV study didn't find the retrovirus.

The Blood Working Group Phase III study examined whole blood, PBMC’s (peripheral blood mononuclear cells, which are cells with a nucleus, key players in the immune response), and serology (antibody testing). They looked at the blood of ME/CFS patients who were positive in the Lombardi and Lo papers, as well as pedigreed negative control donor samples and spiked positives.  Several samples from about 70 different subjects were tested using at least 15 different assays.

Dr. Michael Busch's Institute oversaw the study and broke the labs' codes.  In an August interview with CFS Central, Busch said, "Our Phase IV and other planned studies of donor and recipient infection are contingent on results from Phase III documenting reproducible and specific detection of virus/antibody." In other words, if Phase III is negative, there won't be a Phase IV.

Sunday, September 11, 2011


Of Bats and Pigs and the CDC

Contagion is the new virus thriller from director Steven Soderbergh about MEV-1, a vicious, spanking-new hybrid virus—part bat, part pig—that spreads worldwide like the flu and is often fatal within a few days, usually after the victims spike a high fever, then experience seizures and, finally, frothing at the mouth. The film spans more than four months, and once the virus invades the HIV/AIDS population, it becomes even more virulent. 

The fast-paced movie makes coughing scarier than Kathy Bates in Misery and sports a great cast.  Gwyneth Paltrow is pale, wan patient zero in the U.S., having been infected on a business trip to Hong Kong; Matt Damon is well cast as her beleaguered husband; Kate Winslet and Marion Cotillard portray dedicated epidemiologists; Laurence Fishburne imbues his role of the hardworking Centers for Disease Control deputy director with gravitas; Jennifer Ehle plays a fearless CDC vaccine researcher and the film’s number-one heroine; Elliott Gould has fun as an intrepid non-government scientist defying CDC orders; and Jude Law sinks his teeth into the juicy role of an unscrupulous blogger who sets the world into an early panic and screams “Print media is dying” to a newspaper editor who won’t give him an assignment. Later, when the number of unique visitors to "Truth Serum Now"his doom-and-gloom blog of fake cures and misinformationexceeds the mounting death toll, he becomes positively gleeful.

As MEV-1 and panic spread, food becomes scarce, stores are looted and fires set, streets and airports empty out, and undertakers won’t bury the dead as Earth morphs into a gigantic ghost town. To increase their chances of survival, people don masks and gloves and practice what’s called “social distancing” while CDC scientists risk their lives in a race to come up with an effective vaccine.  Oddly no politicians weigh in during the movie, and the President is soon whisked to a secure underground bunker; that's the last time he's mentioned.  Contagion is all about weary scientists who spout phrases like "chimeric," "revert to wild type" and "attenuated."

The film’s only obvious misstep is the disappearance of Marion Cotillard’s character.  She's kidnapped by Chinese who claim first dibs on a vaccine for their nearly wiped-out village—and use her for collateral.  But so much is happening round the globe that when the film finally pivots back to Cotillard, someone in the audience called out:  “I thought she was dead already.” 

Contagion effectively pieces together the casual connections of the first victims.  Even more satisfying is witnessing how the two virus halves first met.  Both are the most gratifying and eerie aha! moments since the critical instant in The Sixth Sense when you realize that Bruce Willis’s character has been dead for most of the movie.  

Why am I giving a mini review of Contagion on CFS Central?  

  1. Is it because I snickered and threw popcorn at the screen every time another brave government official appeared?

  1. Is it because I wondered how the CDC’s Beth Unger would fare in the role Jennifer Ehle played? See photos, below.

  1. Is it because another worldwide plague is already here and it’s not MEV-1, but rather ME?

  1. Is it because I’m wondering where the heck are all the intrepid non-government researchers like Elliott Gould’s character, who’d defy government orders for the sake of mankind?

  1. Is it because the film gives bloggers a bad name?

  1. Is it because the scientist that Kate Winslet portrays believably utters the word “fomite”?

  1. Is it because a frightened big brown bat flew inside my house during hurricane Irene, and I had bacon in the refrigerator? 

  1. Is it because what’s missing in the film is a cameo from British psychiatrist Simon Wessely in which he’d call MEV-1 a biosocial construct and complain that MEV-afflicted patients were sending him nasty emails and trying to breathe on him?

  1. Is it because the film mentions Dr. Barry Marshall, who drank a Petri dish of H. pylori in 1984 because he was convinced the bacterium caused ulcers, but nobody believed him?

  1. Is it because Jude Law’s character, Alan Krumwiede—pronounced “Crum-weedy,” in the most hyperbolic illustration of nominative determinism ever—bemoans the pathetic lack of information on the CDC website? 

All of the above are true, except for number one: I don’t like popcorn.

Postscript: Patient advocate Lilly Meeham emailed that virus hunter Dr. Ian Lipkin, who's overseeing the big XMRV study, served as an adviser to Contagion.  In fact, Elliott Gould's character is based on Lipkin!  Thank you, Lilly.  Lipkin explained in an interview that MEV-1 is not that big a stretch from the truth and is similar to the Nipah virus, which was discovered during an encephalitis outbreak in Malaysia among Chinese pig farmers. "The pigs had been infected by bats," Lipkin said.  "In outbreaks in Bangladesh where people don't farm pigs, the virus went directly from bats to man via palm sap collected in trees and sold as a beverage. What was different in Bangladesh is that there were reports of human-to-human transmission."

            Ehle                                   Unger