Fallout From Fatigue Syndrome Retraction Is Wide

David Calvert/AP Images, via Associated Press

DASHED HOPES Before a legal showdown, a finding from Dr. Judy Mikovits at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., gave hope to desperate patients.

By DAVID TULLER

When scientists reported in 2009 that a little-known mouse retrovirus was present in a large number of people with chronic fatigue syndrome, suggesting a possible cause of the condition, the news made international headlines. For patients desperate for answers, many of them severely disabled for years, the finding from an obscure research center, the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., seemed a godsend.

Dr. Judy A. Mikovits outside the Whittemore Peterson Institute for Neuro-Immune Disease last year in Reno, Nev.

“I remember reading it and going, ‘Bingo, this is it!’ ” said Heidi Bauer, 42, a mother of triplets in Huntington, Md., who has had chronic fatigue syndrome since her 20s. “I thought it was going to mean treatment, that I was going to be able to play with my kids and be the kind of mom I wanted to be.”

Patients showered praise on the lead researcher, Dr. Judy Mikovits, a former scientist at the National Cancer Institute. They sent donations large and small to the institute, founded by Harvey and Annette Whittemore, a wealthy and politically well-connected Nevada couple seeking to help their daughter, who had the illness.

In hopes of treating their condition, some patients even began taking antiretroviral drugs used to treat H.I.V., a retrovirus related to the murine leukemia viruses suddenly suspected of involvement in chronic fatigue syndrome.

More recently, however, the hopes of these patients have suffered an extraordinary battering. In a scientific reversal as dramatic and strange as any in recent memory, the finding has been officially discredited; a string of subsequent studies failed to confirm it, and most scientists have attributed the initial results to laboratory contamination. In late December, the original paper, published in the journal Science, and one other study that appeared to support it were retracted within days of each other.

As the published evidence for the hypothesis fell apart, a legal melodrama erupted, dismaying and demoralizing patients and many members of the scientific community. Dr. Mikovits was even briefly jailed in California on charges of theft made by the institute.

“I’m stunned that it’s come to this point,” said Fred Friedberg, a professor at Stony Brook University Medical Center and president of the International Association for C.F.S./M.E., a scientific organization. “This is a really sad unraveling of something that was perhaps going to generate a whole new direction in this illness.”  MORE