Private funds helped push Chronic Fatigue research

A rack of test tubes

TEXT OF STORY

Bill Radke: And, while the Department of Education was handing out money today, another part of the federal government was thinking of taking its money back. Yesterday, a federal judge issued a temporary injunction that blocks federal financing for embryonic stem cell research. The ruling could jeopardize more than $100 million in government funding -- leaving researchers to rely on private money.

And private money is where this next story comes in. There was news today that a virus similar to HIV might cause Chronic Fatigue Syndrome. That finding could transform how the disease is treated and viewed, and it came courtesy of private individuals with deep pockets.

From our Marketplace Health Desk at WHYY, Gregory Warner reports.


Gregory Warner: Wilhelmina Jenkins was on the verge of finishing her doctoral degree in physics when she came down with Chronic Fatigue Syndrome -- what the media was then calling "yuppie flu."

Wilhelmina Jenkins: I lost a lot of cognitive ability I couldn't really understand my own research. So I would look at my own notes and not know what I had done before.

Doctors weren't much help, and neither were federal agencies that fund scientific research.

Jenkins: Science is hard. It takes time. We weren't expecting miracles; we were expecting our government to take this seriously and we did not get it.

In the end, the funds came from another source. Private grants kept researchers going. A foundation in Reno, Nev., funded by the parents of a girl with the disease, was the first to trace a connection between Chronic Fatigue Syndrome and a class of virus similar to HIV. That finding was reinforced by a study released this week by the National Academy of Sciences. It could lead to treatment with drugs used to treat HIV.

Margaret Anderson: So you suddenly have a pathway, and you have an audience.

Margaret Anderson runs Faster Cures. It helps family foundations take a more active role in medical research, rather than just writing a check.

Anderson: More often than not people realize, once they are diagnosed as a patient, that there's no cures in the cupboard.

She says private funds still account for only around 5 percent of total research dollars. But families can steer scientific collaboration, drive public attention and keep studies going until they're far enough along for a big drug company to pay attention.

In Philadelphia, I'm Gregory Warner for Marketplace.

About the author

Gregory Warner is a senior reporter covering the economics and business of healthcare for the entire Marketplace portfolio.

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