In a statement, an NIH spokesperson said, “NIH funding decisions are based on public health needs, scientific merit, scientific opportunities, portfolio balance, and budgetary considerations, among other factors. Unfortunately, in challenging budget times, NIH turns away many potentially meritorious research applications that cover numerous diseases.”
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After two years, Vastag’s illness was starting to make D.C.’s 35-degree winter days feel like they were sub-zero. With his body no longer able to regulate its own temperature, he took to wearing three pairs of socks and thermal underwear whenever he stepped outside, which was rarely. Maybe somewhere warmer and less stressful would bring, if not recovery, at least a nicer sickness, he thought. Through an online support group, he learned of a small community of other chronic-fatigue patients living on the Hawaiian Island of Kauai. A year ago, he packed up his apartment and moved there, too.
Vastag’s medical leave at the Post ran out in January. (“An extraordinarily long period of time for them to wait,” he said, appreciatively.) He’s currently applying for both private and public disability benefits, living on savings and help from his family in the meantime. His disability insurer, Prudential, has been denying his claims, he says, contending that his medical tests don’t prove that he has chronic fatigue syndrome. In a statement, a spokesperson for the insurer said, “Prudential respects the privacy of our policyholders, and, therefore, we do not comment on individual claims. The company's practice is to evaluate all claims in accordance with the terms of the applicable group insurance policy.”
Vastag’s condition hasn’t improved much since his move to Hawaii, but because the weather is nicer, his spirits are a little higher. He sits in his yard and listens to audiobooks—it’s hard to focus on text—and though swimming and hiking are out of the question, he ventures to the beach every once in awhile. Recently, he started dating a woman who also suffers from the disease. “We do nothing together, all the time,” he said.
After his letter was published in the Post, Vastag heard through the grapevine that the NIH was holding meetings about chronic fatigue syndrome—a sign the agency might be taking the disease more seriously. (The NIH did not confirm or deny these meetings, but did say that “there are ongoing internal discussions about recommendations made by the Institute of Medicine report.”)
Meanwhile, in August, the agency awarded a $766,000 grant to the renowned “virus hunter” W. Ian Lipkin, director of the Center for Infection and Immunity at Columbia University. Lipkin is using the money to investigate the role of viruses, bacteria, and fungi in the immune response of chronic-fatigue patients.
Lipkin was helped along by a $220,000 donation from a crowdfund called the Microbe Discovery Project, which had been set up by Vanessa Li before she died. Li launched the effort after having been misdiagnosed by nearly 30 doctors, and she worked on it for over a year with other chronic-fatigue patients around the world.