The women’s rights community is beginning to pay attention to Myalgic Encephalomyelitis (ME) as one of many diseases in which sexism has played a role in the disbelief, misdiagnosing and mistreatment of patients. (ME affects men, women and children but 75 percent are women.)
The National Organization for Women (NOW) held a panel discussion about gender bias in medicine that focused on the health crisis of ME at its 2018 conference that was held earlier this month. (#MEAction member Terri Wilder had submitted an abstract to host the panel, which was accepted.)
The panel included three women with ME and members of #MEAction: co-founder Jennifer Brea, New York activist Terri Wilder and Ashanti Daniel who worked as a full-time nurse before getting ME. The panel also featured writer Maya Dusenbery who wrote a detailed chapter about the history and issues surrounding ME in her book, “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed and Sick.”
“Attending the NOW conference was a great opportunity to raise awareness about ME,” said Terri Wilder. “It was a captive audience. We should take every opportunity to talk about our disease as it can only help our movement. Not only should we be speaking at women’s conferences but men’s conferences, pediatric conferences, and adolescent conferences!”
Terri said that people in the audience were shocked and dismayed to hear about the dismissal and mistreatment of people with ME.
Maya Dusenbery said she was thrilled at the opportunity to make the case that the neglect of ME, and other conditions affecting large numbers of women, should be embraced as an urgent feminist issue.
“While there is obviously a long and vibrant tradition of feminist critiques of medicine, these issues haven’t been as front-and-center in the online feminist revival of the last decade or so,” Maya said. “I feel hopeful that we’re starting to see a shift. I’m optimistic that as more millennial women start to have more health problems and come up against gender bias in the exam room, we will demand big and radical changes to a system that is failing so many of us.”
Ashanti Daniel reflects on the toll it took to participate at the conference.
“I have been terribly ill since the conference but it was worth the sacrifice,” Ashanti said. “I anticipated the payback but did not expect it to be this bad. If I knew ahead of time that I would be suffering this much with PEM from speaking at the conference, I would have still gone to give my speech in a heartbeat. It was so important! We need as many able-bodied people as possible to not only learn about ME, but also help us create change.”
The Open Medicine Foundation was also present with a table at the conference, staffed by ME activist Bobbi Ausubel, whose daughter, Rivka, has had ME for 28 years.
Resolution for ME
At the conference, NOW adopted a resolution for diseases and conditions affecting large numbers of women, including auto-immune illnesses, myalgic encephalomyelitis, fibromyalgia, Lyme, endometriosis, migraine headache and others. Bobbi Ausubel drafted the resolution, which NOW edited and approved.
The resolution resolves that NOW educate its members and raise awareness about these conditions; that its chapters reach out to federal agencies such as the NIH and CDC to urge an increase in funding for research, and to educate scientists and medical professionals; and that NOW encourage its members to raise congressional awareness about the lack of funding for these diseases and conditions.
Recognition for ME Activist
#MEAction co-founder and Executive Director, Jennifer Brea, was awarded the Victoria J. Mastrobuono Award for Women in Health for her work with #MEAction, and her documentary film Unrest. This award is given annually to a physician, researcher, health advocate or a person who has made a significant contribution to health. ME researcher and doctor, Nancy Klimas, MD, received the Mastrobuono Award at a NOW conference in 2011.
Watch the Panel Discussion
Listen below as Terri Wilder introduces the panelists and provides context for the discussion: “Killing Me Softly – Gender Bias in Medicine Denies Women’s Health Needs.” And, listen to Ashanti Daniel describe her experience with ME.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the