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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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Like others who have commented, my life was inalterably changed in 1990 when I mysteriously came down with CFIDS. I struggled to continue to work and to support myself until 2001 when the neurological and physical problems became so severe that I had to quit work and go on disablilty. I went from a 6 figure income to being on government assistance. I too was profoundly frustated in the early years at the CDC and the NIH's totally callous attitude about the seriousness of this illness.
Because I had always been such a go- getter in my work and my life my friends and family were always very supportive even if they couldn't understand what was going on.
As others have commented, think of the money that my illness has cost society! For years I held out hope of a cure or at least adequate treatment. Now at the age of 62 I have accepted that I will never be free of this monster that controls my life. What a waste!

hey sara how can i get in touch with you? so many americans today are dealing with chronic illnesses from these new designer diseases and doctors would rather stick a psychiatric label on the patient rather then use a bit of common sense. we should all band together and fight bureocratic road blocks and poor policy making by heads of the agencies entrusted with the health and welfare of america. if we don't demand better we won't get better. lyme disease, gwf, morgellons disease, and more are all being swept under the rug. people need to stand together and take back the power we have relinquished to the gov't. my email address is kelly_pickens@hotmail.com

It's 26 years since this catastrophic illness punched permanently into what was my very productive and active life.
I was 16 and I went in a matter of weeks from being a high achieving student who contributed to my community and worked two part time jobs to a shadow of my former self.
In 1993 Dr Cheney described this illness as AIDS like, and resembling MS in some ways. He appealed to the "powers that be" - those who decide where funding is allocated - to support more biomedical investigation. He wasn't the only one.
In the decades of neglect, decades spent funding a psychiatric approach to "treating" idiopathic chronic fatigue (not even Chronic Fatigue Syndrome), useless, nonsensical studies and programmes a la the likes of Simon Wessley and Bill Reeves, we have been deteriorating. And worse than that - we have potentially been infecting others, and contaminating the blood supply. Some of us have had children who turn out to suffer from the same devastating disease.
Thank God for Annette Whittemore, Judy Mikovits and ALL those wonderful hard working people at the Whittemore Peterson Institute.

The US government has for decades ignored this very serious, very disabling illness. Only now that privately funded research has discovered a link between chronic fatigue syndrome and an infectious retrovirus have some government agencies begun to take notice. And the media have failed us, too, often deriding patients with chronic fatigue syndrome as being malingerers or, at best, suffering from some sort of psychosomatic disorder. Our illness keeps many of us bed-ridden and out of sight, unable to stage awareness campaigns and the like. But in recent years we have been on the internet, in online support groups, keeping ourselves informed, and interacting with one another from our own homes and bedrooms.

I have suffered from ME/CFS for more than 23 years. The tax money dedicated to study this disease was misspent by the CDC and our government ignored my suffering and the deaths of my friends from this awful disease. Then the Whittemore Peterson Institute, started by the mother of a girl who got ME/CFS when she was 12, came along and did what the US government and our so-called patient "advocacy" organization, CFIDS Assn of America, had not done in 25 years. The discovered a retrovirus, XMRV and linked it to ME/CFS. This was done with private funding, but if we want real hope for solving this disease, we need goverment funding; i.e., we must have NIH grants to the Whittemore Peterson Institute. My government has failed me for 25 years. Now it is time to correct that by funding WPI research.

Patricia Carter
www.mecfsforums.com

I believe some of the folks you are talking about have fibromyalgia/chronic fatigue. I have had it for about 20 years, my mother did, some of her cousins, sisters. For more answers yet look up on the web Dr. Teitelbaum a major researcher in this field. see marketplace.publicradio.org and see private funds helped push chronic fatigue research.

As a CFS patient for 15 years, it is encouraging to know that research is advancing. I am, however, concerned that they are linking this disease to HIV-like viruses. We have suffered enough with the stigmas of having an "imaginary disease," being "crazy, lazy or just not willing to work." It is a difficult life and will, no doubt, become even more difficult once the "naysayers" get wind of this.

You really need to give credit where credit is due. The name of the foundation which found the virus that was replicated by the FDA is the Whittemore-Peterson Institute, the mother's name is Annette Whittemore, and the daughter with the illness is named Andrea.
It is because of the dedication of Dr. Judy Mikovits and her team of scientists, along with the persistence of Annette Whittemore, that we are finally on the road to finding the answers.

We need government funding for research into this illness, not just drug companies taking notice. Currently about $5/patient is spent by the government each year. This illness puts young people on permanent disability. I was one of them. I have been on disability since 1991. Consider the lost income involved in not working for 20 years. Consider how much the government has had to pay me and its loss of the income taxes I could have been paying in that time. That doesn't even take into account how miserable I have felt for 33 years, just the money involved.

The PNAS study is very disturbing. With 7% of donating, healthy controls the numbers translates to about 20 million health people that are carriers for this virus. Rest assured that this virus and its mutations are indeed in the blood supply and have been for over 25 years - back to the mid 1980's at least when the Incline Village Cluster hit and the CDC decided to destroy any real research on the Defreitas/Cheney/Bell Retrovirus study that was published in PNAS in 1991. The CDC went out of their way to damage any further Retrovirus research, destroyed the career and health of Dr. Elaine Defreitas, and may well have damaged critical research on not only CFS/ME, but also other diseases (MS, Austism, other autoimmune disorders) and cancers. It is already know that this virus causes an aggressive form of Prostate cancer, and it is highly suspected that the virus also causes the leukemias, lymphomas, breast cancers, heart disease issues that are in significantly higher numbers in the CFS/ME sick.
There must be a full Federal/Congressional investigation into the CDC for the damage done by them on critical retrovirus research for the last 25 years. Something is wrong here and it must come out.
Major federal funding for research and clinical trials must also start and with large amounts of money. Remember, not only will CFS/ME benefit BUT ALSO other diseases and cancers. I would expect that when the public understand the whole sordid story of the damage done by the CDC to kill off retrovirus research 25 years ago, that there will indeed be prison sentences for those involved.
I have had severe CFIDS and FM for 16 years. I still sleep between 12 and 18 hours a day. I leave the house once to twice a week and am a prisoner in my own bed and home. This is not a life - and there are millions of others just like me with the severe neurological issues (NO short term memory at all), extreme pain, sleep disorders including a narcoleptic-like sleep disorder that knocks me out cold during the day, and other typical CFS health problems.
Contact me. My story is much like the rest of the millions of CFS sick. We live in our own personal hell.

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