Myalgic Encephalomyelitis (M.E.) is one of many chronic diseases that are widely misunderstood and frequently misrepresented in mainstream media and medical literature. That’s why it’s so important for members of the M.E. community to control the narrative by sharing our own experiences with this disease.
Our Humans of M.E. (HoME) campaign, a takeoff of the popular “Humans of New York” photoblog and Facebook page, was created to show the faces and stories of those suffering from M.E. and help increase awareness of the disease.
In honor of Chronic Disease Day, we invite you to read the stories of other community members and to tell the story of your M.E. experience in our archive, Humans of M.E.
Did you know that your story can also influence the trajectory of M.E. research?
M.E. journalist Cort Johnson recently wrote about the impact of your stories on M.E. research in Health Rising. Solve M.E. Ramsay Award researcher (and person with M.E.) Dr. Camille Birch used the stories found in Humans of M.E. to inform her current study with Dr. Liz Worthey of the ways in which “genetic mutations in ME/CFS might be altering metabolic pathways and causing an ‘unstable cellular energy state’ in ME/CFS.”
“When the [research] group searched for rare or unique gene mutations…each person had an average of 14 rare or unique gene mutations…The fact that most of the rare gene mutations were unique to each patient presented problems. Determining which ones might be causing ME/CFS required an unusual kind of digging. It was time for Birch to get personal.
After taking notes on 60 of the 120 stories of ME/CFS presented on the Solve ME/CFS Initiative’s website, she realized that ME/CFS was more heterogeneous than she’d known. A variety of potential subsets jumped out at her – each of which could have a different molecular basis.”
To learn more about their study of genetic mutations in M.E., watch Dr. Birch’s webinar here: