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.

Carol Head is the president and CEO of Solve ME/CFS Initiative and a life-long, fierce advocate for women and girls who has worked at the grassroots level, served on several national boards to empower women and founded WomensEnews. In January 2017, she was honored to be recognized by O, The Oprah Magazine as a 2017 Health Hero—one of 14 visionaries who are healing bodies, minds, and communities.

Comments

  1. Thank you Carol and SMCI for fighting for the millions missing due to the brutal disease ME. Thank you for speaking for those individuals who are unable.

  2. Erik Johnson says:

    34 years ago a “mystery illness” struck the town of Incline Village, Nevada.
    The CDC was called to investigate, but couldn’t figure it out.
    Baffled, they created a research instrument, a “new syndrome” to study it.
    Despite the fame of this syndrome, no CFS researchers and no CFS advocacy organizations
    came back to find out what happened.

    I find this to be a very strange way to raise “awareness” when the obvious goal is to make sure
    that the original CFS is never solved.
    As a survivor of that incident, I strongly feel that the scientific method has been completely abandoned.

    • Richard Dietzel says:

      “I find this to be a very strange way to raise “awareness” when the obvious goal is to make sure
      that the original CFS is never solved.” Why say this? What is the value of not solving it? What are you saying about all th epeople involved, are they evil, part of a consiracy?

      FYI- my diagnosis wasin October of 1985 so not a newbie.

  3. I’m glad to see more publicity about this disease, and I wish that it included the use of a new and more accurate name for it:

    ‘The Institute of Medicine (IOM) in the United States proposed Systemic Exertion Intolerance Disease (SEID) as the new name for ME/CFS in their consensus report published in February, 2015. The IOM proposed the name change because of concerns around the current stigma associated with the term “Chronic Fatigue Syndrome,” and because of the subsequent failure by a large segment of the medical community to acknowledge that people suffering with this condition are dealing with a real disease. So, it could be said the goal of the name change was to convince the medical community to look at this disease with fresh, unbiased eyes. “Systemic” acknowledges that this is a disease that affects multiple body systems and “exertion intolerance” names what the IOM is defining as the central feature of the disease. The IOM has stated unequivocally that SEID is a distinct disease, that people suffering with this disease need to be taken seriously, and that research efforts need to be supported to find a cure. However, the name is at odds with what the rest of the world calls this disease and still defines it by its symptoms rather than its underlying pathophysiology.’

    https://kindredspirit.co.uk/chronic-fatigue-syndrome/

  4. Heidi Cook says:

    Thank you for your dedication!

  5. Phyllis Griffiths says:

    The more good exposure of the plight of the millions of people stricken with ME and CFS who have been abused and abandoned by the global medical community. Maybe it’s because most of us are “only” women, maybe there is something darker than that going on, I do not know. What I do know is that I have been waiting 45+ years to get my life back, and weep as I see friends and acquaintances continue to suffer and die from the complications of this terrible disease.

  6. Thank you Ms. Magazine for highlighting an exceptional person who is fighting the good fight! Too many of us can totally relate to Carol Head’s experience with the debilitating illness, ME/CFS and the continued lack of medical support. Carol gives a voice to those of us too sick to speak up for ourselves. Surely, modern medicine will wake up and take notice of the ME/CFS patients nationwide and acknowledge their life-altering disease. It is difficult to advocate from a bed. Thank you Carol for your invaluable work. As Carol herself would say, “Onward!”

  7. Dear warrior,
    Thank you so much for fighting this battle for so many of us it means so much to me to know that there are women out there courageous enough to stand strong and fight against the misogynist males.
    I have dealt with so much discrimination simply because I am a woman and then I have the benefit of Faking Health with good makeup I have dealt with severe discrimination by law enforcement lawyers judges and just women even.
    It’s a struggle enough to be sick then to have to be victimized and felt so degraded and disrespected by so many because they cannot comprehend what struggles people with chronic fatigue syndrome go through when you say the word cancer to someone lots of descriptions run through someone’s mind but when you say chronic fatigue syndrome people just think you’re tired all the time they don’t understand the severity of the symptoms and the variability from day-to-day and not knowing and not even having proper Medical Care.
    Raising awareness has been a struggle as so many people don’t even want to hear about it not even my family my sister gets more compassion for her broken knee then I do for having chronic fatigue syndrome as well as other autoimmune diseases.
    I hope that one day one day soon in my lifetime this condition is exposed for the intense suffering that it causes on all levels!

  8. Thank you for all your hard work, Carol! Thanks for getting the word out! A true champ!

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