LLEWELLYN KING: A young man, a big disease, a big idea
We expect big ideas to come from young people in computers, social networking and music. In medicine, less so.
So meet Ryan Prior, age 23, of Atlanta, Ga. He suffers from a little understood but ghastly disease of the immune system known in the United States as Chronic Fatigue Syndrome (CFS), and in the rest of the world as Myalgic Encephalomyelitis (ME).
The disease is mostly incurable; affects men and women, but more women than men are recorded; and the Centers for Disease Control (CDC) in Atlanta says there are 1 million victims in the United States and 17 million worldwide.
Its impact is horrific; confiscating lives, wrecking homes, sundering love affairs and grinding down caregivers and families.
For the most part, the sick are sick until they die. Some are bedridden for years. Advocacy groups say suicide is high. I have received many letters from patients who say they can’t take the pain, the helplessness and the stigma any longer, and beg for a quick release.
Despite all this, the disease gets short shrift from the National Institutes of Health and the CDC, although patients say they get a better hearing at the Food and Drug Administration.
Enter the over-achieving young patient, Ryan Prior. His story begins on Oct. 22, 2006. Like many victims he knows exactly when he was felled, when normal life had to be abandoned. He entered a dark world where good times are marked in hours; where bad times are days, weeks or months in darkened, silent rooms.
Prior was student president at Warner Robins High School in Warner Robins, Ga. (about 90 miles south of Atlanta), captain of the cross-country team and was taking three advanced placement courses. “My goal was to attend Duke University or West Point with the ultimate goal of becoming an Army Ranger,” he said.
By Nov. 15, 2006, Prior had to quit school. Under a Georgia plan for educating sick students, “my physics teacher taught me heat transfer while I was lying on the couch,” he said. But he slept through calculus.
Ryan still hoped to make it as an athlete. During a brief respite, he was back on his soccer varsity squad. But it was a disaster. He had been put on a drug that provided a short energy boost.
“I went to a practice and played for about five minutes. I did OK for the first minute. After five minutes, I realized I had to stagger off the field as soon as possible. If I didn’t get off voluntarily, I knew I would have to be carried off soon after.”
After seeing 15 doctors, who knew little or nothing about the disease, Prior found one who has helped him. Now, he says, he functions 90 percent of the time if he takes 15 to 20 pills a day and avoids overdoing it. Ultimately, he graduated Phi Beta Kappa from the University of Georgia.
But it’s the almost complete ignorance of CFS by most doctors that has set Prior on his big-idea project. He is making a documentary film about the disease with young filmmakers, and with a $12,000 budget.
He hopes the film will lead to $50,000 in funding to create “an eight-week summer fellowship program” for medical students, between their first and second years, to study with recognized experts in CFS. They would, according to Prior, provide each student with a stipend of $5,000 for the eight weeks.
Prior has compiled a list of nine doctors or clinics pre-eminent in the field who he believes would accept the fellows. The end result: a flow of young doctors with knowledge of CFS and new ideas.
I can attest that this is desperately needed. As far as I have been able to determine there are many states, including West Virginia and Rhode Island, where there are no doctors with specialized knowledge of the disease. One woman travels from Delaware to Manhattan for treatment with Dr. Derek Enlander, and many have moved to Nevada to be near Dr. Dan Peterson in Incline Village and the Whittemore-Peterson Clinic in Reno.
If Prior’s plan works, it may lead to a much larger training effort in the United States and across the world.
“The message is simple: American history has progressed in a logical line from women’s rights, through civil rights, then to gay rights,” Prior says, adding, “Medical history has a similar process of ridicule, repression and ultimate acceptance: MS, AIDS, and now we want CFS to be the next step.”