Media attention brings long-sought recognition to sufferers
I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome in 1986. I was lucky to have seen a knowledgeable doctor and luckier still to have had the best medical care available for the past 37 years. As reporter Amanda Gokee explains in the article “New light on a hidden struggle: Overlooked chronic fatigue sufferers hope to benefit from medical focus on long COVID” (Page A1, June 1), most people with this illness go undiagnosed for years, sometimes decades. The Massachusetts ME/CFS and FM Association has been supporting individuals with ME/CFS and fibromyalgia and their families for almost 40 years. Our communications network has grown from roughly 4,000 people in 2019 to more than 10,000, due largely to long COVID.
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It is no exaggeration to say that the Globe’s decision to publish this article on the front page of the paper has brought tears of joy to thousands of people who have suffered in silence for decades and never imagined this day of recognition would come.
Phil Chernin
Brookline
The writer is copresident of the Massachusetts ME/CFS and FM Association.
The after-effects of even a simple errand can be severe and last for days
Re “Low-income people fear high-cost change” (Page A1, June 3): Susan Buck, a woman living with multiple disabilities including chronic fatigue, was interviewed for your story on how the deal to raise the federal debt ceiling could affect key social programs. Many online readers took issue with the idea that chronic fatigue is a real disability. They also suggested that Buck could work a paying job, based on photos of her in her garden.
I would like to offer my perspective on what it’s like living with myalgic encephalomyelitis. It’s an incurable neurological disease that affects most of the systems in the body. Although the disease comes with dozens of symptoms, one of its hallmarks is post-exertional malaise. This means that the patient feels worse after almost any physical, emotional, or cognitive effort. The effects can last for days.
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My condition is severe but, like Buck, I can garden. I planted a rose bush recently. It’s just that after an hour of gardening, I was dizzy, nauseated, hurting, and faint. I dragged myself back into the house and slept for three hours midday. Other things that cause my body to shut down include buying groceries and cooking dinner.
A 2015 study found that the quality of life for people with myalgic encephalomyelitis was worse than that of people with any of the other 17 medical conditions studied, including stroke, heart attack, and cancer. Consider that and then ask yourself if you can really tell that a person can work for a living just because she’s able to hold a pot of marigolds for the time it takes someone to shoot a photo.
Amanda Mathiesen
Arlington
