Humans of ME/CFS
In 1983, at 22 years old, I was diagnosed with spondylolysis and spent 11 months in a back brace. After a few months, I began having bouts of fever, sore throat, diarrhea, bronchial and sinus infection. Because the back brace limited my physical activity, my doctors believe this to be some form of metabolic/immune system adjustment to a more sedentary lifestyle. After a year, it was evident that no such adjustment was going to happen. I was spending about a week of every month bedridden and most of my remaining time managing intense muscle pain, fatigue and brain fog. I consulted dozens of health providers to no avail. Many were troubled by their inability to understand why I was experiencing these symptoms. Some were dismissive. One explained that I was malingering and referred me to a psychiatrist. In 1987, I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) by Dr. Anthony Komaroff.
I served as librarian and telephone counselor for the Massachusetts CFIDS Association for several years following my diagnosis. I continued to work full-time, married and had children, struggling constantly to manage the effects of my symptoms on our family life and in my work. We lived through hundreds of crashes, made accommodations in every aspect of our lives and simply trudged through the day to day, fighting off the despair for lack of any effective treatment. Between 1998 and 2000, my symptoms became milder and the need for bedrest less frequent. Eventually, my family and I began to talk about the illness in the past tense. Bewildered yet grateful, it would remain a mystery how, after 17 years, it just went away.
Twelve years later, in 2012, it returned following a bout of pneumonia. Now in 2015, at 55 years old, the physical and cognitive challenges are more debilitating than they were in my youth. I am able to work only part time, and this consumes most of my energy. I’ve stopped all community and social activity, devoting what energy I have to my wife and children. My wife, who has retired, spends most of her time managing our family affairs and helping me manage my medical care. I am fortunate to have a team of healthcare providers that communicate with one another and are committed to my care. The research of the past decade has helped me identify promising options for symptom relief and to pursue diagnostic and treatment methods accordingly. This has been expensive and arduous, but has delivered benefits and helped me to remain functional and optimistic. Areas of specialty involved in my care include internal medicine, chiropractic, cardiopulmonology, psychiatry, immunology, infectious disease, gastroenterology, environmental medicine, neurology and genetics.
My treatment protocol is designed to address mitochondrial myopathy, dysautonomia (disordered ventilatory control, preload failure and orthostatic intolerance), sleep-disordered breathing, sinusitis and cognitive dysfunction. These diagnoses are all believed to be manifestations of ME/CFS.