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Wed Feb 14, 2018, 01:37 PM

The Fight that Follows Pain and Prejudice-Myalgic Encephalomyelitis (ME), a disease often called CFS

The Fight that Follows Pain and Prejudice

More than four decades ago, while a high school junior in Columbus, Indiana, I decided I wanted to run track. But I was told that girls were not allowed to compete in sports. Angry and confused—why can’t girls do sports?—I fought for and eventually won the right to start a women’s track team.
That was the start of a lifelong dedication to women’s rights—a dedication that recently found me marching with half-a-million women and men at the second Women’s March Los Angeles. Each step across the uneven pavement of downtown Los Angeles was a victory. Each step a fight. Each step filled with pride—as a woman, as an advocate and as victor over my illness. And I was proud to march with my two feminist sons.

Carol with her two sons at the Los Angles Women’s March.

Thirty years ago, I was bedridden due to Myalgic Encephalomyelitis (ME), a disease often called Chronic Fatigue Syndrome (CFS). That is why I feel blessed today to have a dream job: President and CEO of the Solve ME/CFS Initiative, which is fighting to find treatment and a cure for this disease.
ME/CFS is a chronic, complex, multi-systemic disease that profoundly limits the health and productivity of patients. This disease has long been misunderstood, derided and ignored. Many patients are simply not believed to be sick, despite debilitating symptoms that include profound exhaustion without an attributable cause, exacerbated by activity; severe headache and debilitating joint, muscle and lymph node pain; diminished ability in concentration and information processing and extreme sensitivity to light and sound that can require complete sensory deprivation. Recently, Ms. featured this disease in a story, remarking that “women suffering from chronic fatigue syndrome remain undiagnosed and untreated, for a tangle of reasons with sexism at the core.”

ME has no known causes. It can be fatal. There is no cure or FDA-approved treatments. And it affects so many people, an estimated 80 percent of whom are women. Yet federal and private research funding for this severe disease is shockingly low. “I have to say, there’s a gender thing,” Dr. Nancy Klimas, Nova Southeastern University, told Ms. “Three hundred thousand people, mostly men [with Gulf War Illness], are as sick as 1 million people, mostly women [with ME]. And they have 10 times the research budget. What’s that about?”

I cannot separate my work for women and my work to find treatments and cures for ME/CFS. To this day, doctors roll their eyes at me when I tell them of this illness. And millions of woman who suffer from invisible illnesses, who continue to be dismissed, disbelieved about the experience of their own bodies, will nod with understanding at my own dismissal by doctors—and say “Me Too.” If you suspect you know someone with ME or have it yourself, go to solvecfs.org and sign up to get information. Contact your member of congress to ask that ME/CFS is eligible for congressionally directed medical research funding for ME. Fund our organization’s work. And when you hear ME/CFS stigmatized or dismissed—“I’m tired, too! Get over it!”—speak up and talk back!

This disease is a women’s issue. The time to fight for women with ME who have been dismissed and ignored is now.


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