Tom Kindlon, six feet tall and bulky, can only stand up for half a minute before dizziness and balance problems force him back down. He has a round face, wire-rimmed glasses, an engaging smile, and beard scruff. Direct light hurts his eyes. He wears a baseball cap to shield them.
Kindlon, 43, still lives with his parents in the two-story, four-bedroom house where he grew up. His mum, Vera, is his primary caretaker. He remains close with his three younger siblings— Ali, 40, and twins David and Deirdre, who are 35. All live nearby and help out when needed.
For the last 15 years, Kindlon has harnessed his limited energy for what he perceives as his primary mission: reviewing, and responding to, the literature on the illness. He has published more than a dozen peer-reviewed letters in scientific publications and regularly posts on the public forums and “rapid response” sections of journal websites, politely debating, dissecting and debunking questionable research claims.
“I haven’t read a fiction book in 20 years,” he noted, during a series of conversations ranging across Skype, Facebook, Twitter, and e-mail. “I need to be blinkered in what I do and don’t read, to concentrate and use my mental energy for this material.”
As a teenager, Kindlon loved playing rugby, cricket, tennis and soccer. When he was 16, he spent five days in western Ireland on a hiking and sailing trip with high school classmates. It was February, damp and chilly, and he was already suffering from a cold or some other bug; back in Dublin, he felt worse and stayed home for several days.
When he returned to school, he discovered something weird: After a round of sports, he now experienced muscle pains and a paralyzing exhaustion unlike anything he’d previously encountered. “I’d be totally whacked by the end of the day,” he recalled.
He saw a physiotherapist and then an orthopedic surgeon, who told him to exercise more. He tried swimming, but that also left him depleted. In 1991, despite his health struggles, he entered Trinity College. He slogged through two years of math studies but suffered more and more from problems with memory and concentration. “I was forgetting things, making silly errors,” he said.
Toward the end of the second year, he could no longer hold a pen in his hand. He developed tendonitis, first in one arm, then in the other. When he drove, pushing the pedals caused severe ankle pain. “Everything was magnified now,” he said. “I was just breaking down.” He took a leave from Trinity. His health continued to slide.