“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.”
Despite the controversy, Dr. Mikovits is now supervising some lab work as part of a large government-sponsored study being spearheaded by Dr. Ian Lipkin, a leading Columbia University virologist. The study was established before the two retractions to examine the possible link between chronic fatigue syndrome and mouse retroviruses. Dr. Mikovits still hopes to replicate her original results, and many patients continue to believe fervently in her hypothesis; study results are expected early this year.
She did not respond to requests for comment.
An estimated one million people in the United States suffer from chronic fatigue syndrome, which is characterized by profound exhaustion, a prolonged loss of energy following minimal exertion, swollen lymph nodes, sore throat, cognitive dysfunction and other symptoms. Experts now generally believe that one or more infectious agents, or perhaps exposure to toxins, set off a persistent, hyperactive immune response — the likely cause of many of the symptoms.
Although the Centers for Disease Control and Prevention first investigated the illness in the mid-1980s, the agency has not been able to find a cause, identify any biomarkers or diagnostic tests, or develop effective treatments. Patients have long accused the mainstream medical and scientific community of neglect and abandonment. Many say that the C.D.C. has largely treated their disease as a psychological or stress-related condition.
A 2010 paper from the agency, for example, galled patients with the conclusion that they suffer disproportionately from “paranoid, schizoid, avoidant, obsessive-compulsive and depressive personality disorders.”
Dr. Mikovits’s research, done with collaborators from such prestigious organizations as the National Cancer Institute and the Cleveland Clinic, seemed to vindicate the concerns of many with the condition. The scientists said they had found that 67 percent of patients sampled were infected with a mouse virus called XMRV, compared with 4 percent of the controls.
“If for years you’ve been told that your illness is all in your head and then you’re being told, ‘Look, we found something concrete and very substantial,’ then of course there will be rallying behind that,” said Rivka Solomon, 49, a Massachusetts playwright who has been largely homebound with the syndrome for more than 20 years.
The publication of Dr. Mikovits’s work brought immediate attention, much of it unflattering. Other scientists soon published studies challenging the findings, and Science issued first a statement of concern and then a partial retraction of the original study.
Even as her work was publicly debated, the blunt and feisty Dr. Mikovits raised eyebrows among other scientists for stating at conferences that murine leukemia viruses could be related to autism. Perhaps more disconcerting, a commercial lab associated with the Whittemore Peterson Institute began marketing screening tests for XMRV, the hypothesized cause of chronic fatigue syndrome, costing hundreds of dollars. The business enraged many patients once they realized the results might be meaningless.
Amid mounting concerns, Dr. Mikovits left her position as research director at the institute in a dispute over management practices and control over research materials. The institute sued her, accusing her of stealing notebooks and other proprietary items. Dr. Mikovits was arrested in Southern California, where she lives, and jailed for several days, charged with being a fugitive from justice.
After her split with the institute, Dr. Mikovits denied having the missing laboratory materials. But a lab employee, Max Pfost, said in an affidavit that he took items at her request, stashing notebooks in his mother’s garage in Sparks, Nev., before turning them over to Dr. Mikovits.
At one point, “Mikovits informed me that she was hiding out on a boat to avoid being served with papers from W.P.I.,” Mr. Pfost said in the affidavit. Some lab items have since been returned.
In December, a judge ruled against her in the civil case. The criminal case is pending; another hearing in the civil case is in late February. But in late January, the Whittemores were themselves accused of embezzling millions of dollars in a lawsuit filed by partners in Mr. Whittemore’s real estate business.
The Whittemores, who have countersued, maintain their innocence of the embezzling charges, and Annette Whittemore stated in an e-mail that institute research continues.
The events of the past couple of years, though disheartening to chronic fatigue syndrome patients, may have a silver lining: Research into the disease, much of it privately financed, is ratcheting up.
A new research and treatment center has been created at Mount Sinai Hospital in New York. The Hutchins Family Foundation is investing $10 million in the Chronic Fatigue Initiative, an effort to find causes and treatments that has recruited top researchers from Columbia, Harvard, Duke and other institutions.
“The disease had languished in the background at N.I.H. and C.D.C., and other scientists had not been paying much attention to it,” said John Coffin, a professor of molecular biology at Tufts University. “This has brought it back into attention.”
Dr. Coffin, who at first supported the mouse retrovirus theory but later disputed it, noted that the illness “does seem to have characteristics that would suggest infectious origins” and that other retroviruses could be involved.
Despite the personal and professional setbacks for Dr. Mikovits, many patients, like Ms. Solomon, continue to believe that a retrovirus is causing their illness.
“But even if the retroviral research does not pan out, her work, and the publicity it has brought to our illness, has forever changed the landscape,” said Ms. Solomon.