The president responded, “Although I have heard of chronic fatigue syndrome, I don’t have any expertise in it. … What I promise I will do when I get back is I will have the National Institutes of Health explain to me what they are doing, and to see if they can do more on this particular issue.”
This summer the president followed up on that request with a letter, and earlier this month Department of Health and Human Services Secretary Kathleen Sebelius acknowledged that the administration was closely monitoring progress on CFS. The NIH told the president that annual research funding had increased in the past few years, but at just $6.1 million, the number remains scandalously minuscule compared with similarly devastating diseases.
That’s just one of the many stories readers shared with me after I told the story of my battle with CFS on this site three weeks ago. One was from Valerie Free, a Canadian woman who has suffered from CFS since 1990. She only considers herself about 30% or 40% functional, but she has spent much of the energy she does have in the last three years researching and writing a book on CFS that is part memoir and part history.
The history of the illness, which is believed to have begun in North America in 1984 (and in the U.K. as far back as the 1930s), may be short on length, but it is long on pain and tragedy. That tragedy has been measured in millions of lives barely lived, millions in misappropriated funds and, in some cases, horrific and inhumane treatment of patients. Despite widespread cynicism about the progress of CFS research, Obama’s letter was, by most accounts, an unequivocal bright spot. According to Free, that April day was the first time a sitting U.S. president had publicly uttered the words “chronic fatigue syndrome.”
Some 900,000 Americans suffer from CFS, according to the Centers for Disease Control and Prevention, or about one in every 340 people. This number is slightly less than the HIV rate, and about three times the rate of MS. Yet the NIH funding for CFS is just 1.25% that for MS.
This week I completed my sixth year of contending with the devastating, incurable illness. Unlike most patients’ experiences, however, mine has been very blessed. I manage my situation through shots, supplements and IVs, not altogether different from how people manage diabetes. Yet while I measure my success in being able to run four miles every other day, 95% of CFS sufferers would love simply to have the strength to leave their homes every other day.
Readers were quick to point out that the convergence of fortune that gives me a life is impossible for most CFS patients. The Fibro and Fatigue Clinics from which I (quite literally) sustain my life-force are expensive and are not covered by insurance. I can thank my two wonderfully supportive parents for a lifetime of hard work and frugality that now underwrites my recovery.
Readers from other countries cried out, “Send Dr. Teitelbaum here!” That sentiment is all too real. There are only 12 of these clinics in the U.S and only a very small handful abroad. For 17 million CFS patients worldwide who don’t live within driving distance of a treatment facility, recovery is obviously very limited. The lack of these clinics abroad is the single greatest impediment to my goal of becoming a foreign correspondent covering wars and revolutions abroad.
Third, not every CFS sufferer responds the way I do to Teitelbaum’s treatments. Each CFS case is distinct, and there is no one-size-fits-all approach that works with every person. Many bodies simply cannot tolerate the treatments. I’ve seen patients holding trash cans as they received treatments, just not knowing the moment when they would vomit from the infusion. One of my best friends, a CFS patient who didn’t benefit from Teitelbaum’s treatments, undertook an odyssey from California through Georgia, Belgium and eventually Israel in search of a treatment and, consequently, a life. Most CFS patients are adults caring for children, and could never undertake such a comprehensive quest.
The National Institutes of Health must dramatically increase funding to discover a bio-marker common to every CFS patient. With better understanding of the illness, insurance companies are more likely to cover existing treatments, drug companies will be more likely to experiment with new treatments and the FDA will be more likely to approve them. Only through continued advocacy and research can the scandal of so many lives neglected be finally remedied.
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