"I started working with MassME/CFS as a volunteer in 2022 after learning about their work during my thesis research into patient advocacy and education organizations." I didn't know much about ME/CFS until a friend in college told me about her struggles after contracting Lyme disease - although she recovered from her initial infection, she continued to deal with lingering symptoms. Soon after, I enrolled in a course at Mt. Holyoke College that dedicated a unit to complex chronic diseases and why they were so challenging for both patients and physicians. Mostly, we discussed how conditions like ME/CFS, chronic Lyme disease (CLD), or post-treatment Lyme disease syndrome (PTLDS), and fibromyalgia were diagnoses of exclusion and left patients in a battle to validate their illness experience. I was intrigued with the implications of this distinction for patients and soon after attended a screening at my own alma mater, Hampshire College, of the documentary Unrest hosted by MassME/CFS. There, a member of the association, Rivka Solomon, led a panel discussion of the film alongside Dr. Darren Lynch (MD), a local physician who treated patients with ME/CFS, and Ronald Davis (PhD), a prominent researcher whose own son had ME/CFS. My curiosity was ignited and by the time I was a rising senior, I chose to focus my thesis on this set of contested, chronic illnesses. I was driven to learn more about the history of the disease, and surprised to know it had so many other names in the past. Evolving from the times of hysteria and neurasthenia, it seemed this was not a new phenomenon as I had once naively thought.
To read the rest of Helen's story, click here.
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