So when Whittemore opened her institute, many patients saw it as their hope for salvation. Whittemore used her own wealth (reportedly contributing $5 million initially) and connections (raising $10 million from the state of Nevada, and $1.4 million from patients and other private donors) to fund research that would be free of the federal government’s apparent bias toward psychiatric explanations. Eventually, the NIH got behind Whittemore’s effort, too, supplying a $1.5 million grant for her institute’s CFS research.
Just a few years after its founding, the retrovirus finding seemed to justify all the high hopes. Because retroviruses can spread through blood transfusions, the risk to the general public was obvious. CFS was catapulted out of the backwaters of science and into the land of big money.
When other groups’ first attempts to replicate Mikovits’ finding failed, some patients waited for more rigorous studies, but some rallied harder to defend Mikovits, sending money from their disability checks to support the institute. (A few were said to have levied death threats against scientists who questioned the retroviral link.) Mikovits was deluged with emails from patients expressing their desperation for a cure, proclaiming her a hero and pledging to stand by her no matter what. And Mikovits herself combatively defended her result. She even fanned the skepticism by making wildly irresponsible claims, tying the retrovirus to autism, Parkinson’s disease, MS, Lou Gehrig's disease, and dementia. The Whittemores also went way beyond the evidence, selling an unvalidated XMRV test to patients for around $500 apiece through a separate lab that they owned.
Eventually, though, major studies came in showing that the infectious agent she'd discovered was almost certainly a laboratory contaminant and not the cause of CFS at all. And that turned out to be only the beginning of the bad news for Mikovits and the institute. The commercial lab stopped selling its XMRV test, but it had taken many thousands of dollars from patients for an illegitimate test. Questions emerged about whether Mikovits had faked data in her Science paper. Whittemore fired Mikovits in a dispute over who controlled her lab samples, putting into limbo the institute's $1.5 million grant, for which she is the principal investigator. Soon after, Mikovits’ former research assistant said that he had secreted critical lab notebooks out of the building to her and the WPI pressed charges against her for theft, leading to her manacled appearance in a California courtroom. She is now out on bail and the notebooks have been returned.
How did this once-promising effort to understand and treat CFS go so far off the rails? The intoxicating effect of being lauded as the sole defender of the theory that might rescue more than a million desperately ill Americans probably contributed. Some CFS patients felt so mistreated that for them, Mikovits wasn’t just a researcher whose theory wasn’t yet validated; she was their redeemer. For those patients, the legitimacy of the retrovirus research became conflated with public acceptance of CFS as a “real” disease. Their fervor may well have fueled that of both Mikovits and the institute, leaving each feeling that they were the only ones left standing up for patients and supercharging their initial enthusiasm for the work into self-righteous certainty. For now, it’s unclear whether Mikovits is a fraud; an overambitious, careless, and irresponsible scientist; or just a researcher who temporarily lost all perspective. But it’s easy to imagine how her sense of obligation to produce results quickly for desperate patients, and the polarized atmosphere around CFS research, could have greased the slide she and the institute took from cautious science into reckless overreaching.
The failings of Mikovits, Whittemore, or the patients who trusted them aren’t the point, though. With a disease this debilitating and marginalized, some patients are bound to make leaps of faith; some researchers might start to believe their own press; and a mother may overextend herself in her quest to save her child. But the alienation of the patient community only arose because of the mishandling of CFS by the public agencies. The best way to avoid this kind of fiasco would be for researchers and public health officials to follow their obligation to protect public health, be faithful to the science from the beginning, and fund and pursue the many promising avenues for research on CFS that have recently emerged.
Remarkably, despite the minimal funding, such avenues have emerged. Researchers are making progress toward developing a test that could definitively determine who has the disease and who doesn’t—by using either proteins in spinal fluid or alterations in gene expression after exercise. Such “biomarkers” for CFS would show whether CFS is a single disease or a cluster of related ones. An experimental drug treatment has been remarkably effective and has provided evidence that CFS is an autoimmune disease, opening a whole new area of treatment possibilities. These scientists aren’t selling testing kits or making dramatic statements about their devotion to their patients. They’re just doing their jobs. And they need a lot more government support in getting them done.