Working late, I email Tom Kindlon at 12.15 a.m. about an interview concerning the debilitating condition he has suffered from for 11 years, ME (myalgic encephalitis), also known as chronic fatigue syndrome (CFS). His email reply bounces back at 1.10 a.m., I respond, and at 1.45 a.m. he replies a second time. He too is burning the midnight oil.
Tom helps his mother Vera run the ME/CFS Association from the home they share, informing others about a disease with no known cause and no proven treatment that may spontaneously disappear - or last a lifetime. Tom's is an extreme case; most newly diagnosed sufferers recover within two years.
When we eventually speak for a pre-arranged half-hour telephone interview, Tom turns out to be an articulate young man. When I ask him about his nightowl habits, he explains that "sleep reversal" is a classic symptom of ME. While after a late night I'll rise at 7 a.m. to get the children up and off to school, Tom will remain in bed until noon and will go to sleep again at 3 or 4 a.m.
Taking tricyclic antidepressants has improved his sleep pattern. At one stage, his regular bed-time was 6 a.m. When he rises, he sits in front of a light box to prevent SAD (seasonal affective disorder) caused by living in darkness. His body temperature has remained below 97F for the past six years. "I wear lots of T-shirts and two woolly jumpers as well as a coat and a cap (which also doubles to keep out the overhead lights) in the house to keep warm all year around," he says.
Tom (27) experienced the first symptoms of ME when he was 16 years old, after a bout of flu. At the time, he played rugby for Belvedere and enjoyed cricket, tennis and cross-country running. He participated in the Young Scientists' competition three times, winning once, and belonged to Mensa.
Advised to cut back on sports due to his fatigue, he focused on academic life and did well at Trinity College Dublin until, at 21, he was forced to give up his studies in mathematics after his hands clawed up in pain during his second-year exams. After a month, he followed advice to exercise more, but this gave him severe muscle pain which eventually required 100 sessions of physiotherapy. If he tried to walk he developed shin splints, and the pedals in the car were painful to push.
Eventually, his GP recommended him to Prof Austin Darragh in the Blackrock Clinic. Learning that he was a classic case of ME was "a great relief", says Tom. "It was much harder psychologically when I did not know what was wrong with me. Once I knew other people who had it and started reading about it, it was a great comfort," he says. Tom has since learned that overdoing it can prolong the course of ME. He is convinced that exercising during the early years of his illness caused his condition to become so entrenched that he cannot watch a sitcom without losing concentration, cannot read a book and sometimes garbles his words.
Yet he remains motivated and keeps up with the latest research about ME via the Internet. One study compared the mental toll of ME to mild Alzheimer's disease, Tom tells me. Another found that people with ME have same quality of life as people with AIDS two months before they die. Tom has to ration and prioritise his energy expenditure, so he rarely leaves the house except for essential travel to doctors and when he does he needs a wheelchair. He can walk the 15 yards to the car but after that he's wrecked. His bedroom and bathroom are downstairs, to spare him the exertions of the staircase, which could send him into relapse.
His social contact is limited to one dinner with friends per month, although he has 19-year-old twin siblings living at home who bring friends and life into the house. Other than that, he is confined to phone calls and the Internet, both of which must be carefully rationed to half-hour spells, followed by complete rest. This he achieves through progressive muscular relaxation, a form of meditation. If Tom overdoes it on one day, he pays for it the next. "It's like having the flu and a hangover and feeling like you just ran five miles - all at once."
For years, ME was thought to be a psychiatric condition, until enough evidence emerged to justify its classification by the World Health Organisation as a neurological disorder. According to a reliable review of the literature by the National Institutes for Health in the US, "several different routes to chronic fatigue syndrome may exist. In some people, a persistent viral infection may provoke ME/CFS symptoms, and virologists continue to explore this possibility. Vulnerability to CFS may be associated with a subtle immune system defect. It also appears likely, however, that CFS involves interactions between the immune and central nervous systems, interactions about which relatively little is now known."
As he waits for a cure, Tom spends his precious moments of energy informing others about ME, which gives him a sense of fulfilment. In his enthusiasm, he stays on the telephone with me for an hour - longer than the half-hour we had agreed. After warning him a few times when we reach the half-hour mark, I eventually force a goodbye for the sake of Tom's health.
The next day he emails me: "You were right, I did overdo it with the interview. That's what's so hard with the illness - it's hard to know when one has overdone it. My glands (lymph nodes) are now swollen in my neck, I have a sore throat, headache and am finding it difficult to keep my eyes open to do this. Hopefully, if I have longer rest periods tomorrow and the next day, and shorter periods of activity, I should be feeling a bit better in a day or two."
As part of ME Awareness Week (May 8th-14th) Prof Austin Darragh will give a free public lecture on ME this evening at 8pm at the Royal Dublin Hotel, O'Connell Street, Dublin.