ME/CFS Alert

Dear Friend, We all know the joy of opening a gift: something special from someone who cares about us. For sufferers of Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome, that feeling of joy -- and hope -- comes from opening a ME/CFS Alert video on YouTube. I created ME/CFS Alert, a YouTube channel, in 2011 with the aim of comforting the sick, educating the doctors, and shaming the government into providing more research funding for ME, a lingering, life-robbing disease. The channel was an outgrowth of a few newspaper columns I wrote on ME, after learning that a friend, Deborah Waroff, with whom I had lost contact, had been stricken with it. She went from being a busy Wall Street analyst, world traveler and athlete to being bedridden, sometimes for long periods, in her darkened Manhattan apartment. While writing about ME, I learned that there is no standard diagnosis or treatment for ME, few doctors know anything about it because medical schools don’t offer courses on it. Yet ME afflicts about 1 million people in the United States, and 17 million worldwide. It afflicts more women than men; and, most horribly, it afflicts children, stunting their lives. Patients live like prisoners who have committed no crime but have been handed life sentences without parole. Lifelong, they will suffer from any number of these symptoms: sensitivity to light, sound and odors; head and other body aches and dysphasia. But, first and foremost, exhaustion. What would be a regular amount of physical exertion for a well person -- walking a city block to a grocery store, attending a high-school or college class, going to the movies with a friend, making a meal at home -- can cause a person with ME to collapse and have to spend days in bed. But the rest will not refresh. Take these two patients: One young man, who was afflicted while attending Stanford University, has been stretched out on a bed in his parents’ home for years, his eyes covered with a black mask, and only able to communicate with his parents by a sensor attached to one of his fingers. Why him? Or why another young, married man, who loved hiking and being outdoors, has had to spend stretches of his life in a darkened closet? ME can empty victims lives of family members, friends, lovers and work. With no support, some are driven to suicide. I have been able with the help of donations on GoFundMe, a crowd-funding site, to make 105 episodes of ME/CFS Alert on YouTube. In these episodes we interview patients, caregivers, advocates, doctors and researchers. They are a gift of recognition and support of this brave community: You are not alone on this dreadful journey to a cure. I care and others do too. Just as my columns did, the ME/CFS Alert videos elicit an outpouring of gratitude from viewers. I have never received response like that of ME patients and their caregivers in the six decades that I have been a journalist. This may be my most important work. Here is a comment a viewer, Christine from San Diego, posted after watching Episode #98, my interview with Dr. David Systrom of Boston’s Brigham and Women’s Hospital: “God bless you. I’ve been suffering for 23 years. I’m in the U.S. and have been through hell with the medical field out here. I am literally crying while listening to this. This gives me hope because although there may never be a cure in my lifetime, I am 53, this may help others in the future. I have been bedridden for most of this year. Thank you so much for making this information available.” I ask for your help to make these videos -- these gifts of comfort and hope. Please use this link to donate to the ME/CFS Alert on YouTube campaign on GoFundMe: https://www.gofundme.com/MECFSAlert