- Last Updated: 06 June 2023 06 June 2023
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.
I interviewed students on my college campus who had these conditions to learn how their life course was impacted by their illness, and what struggles or triumphs they had with physicians, family, and friends. This ethnographic work painted the same picture as much of the sociological data - that patients struggled to find treatment and empathetic physicians while having to change much of their lives to accommodate their symptoms and fluctuating capabilities. As I concluded my thesis, I hoped that the gradual changes in the medical and scientific research fields would lead to better outcomes for patients and an improved understanding among the public.
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 joined the Sunday Conversations team where we coordinate and run the monthly talks held over Zoom. I am lucky to work with such a great group of people here and although I am one of the people ‘behind the scenes’, I am always taking away new insights as a person who is not a caregiver or a patient myself.
It’s really rewarding to see so many attendees engage with the presenters and hear what they have taken away from the events themselves. I’m grateful for the opportunity to grow in my understanding of ME/CFS from both speakers and participants, and excited to continue working with the team to make the Sunday Conversations a platform for these much needed conversations!