Notes on lobbying Congress for ME/CFS funding

On March 6, I accompanied the irrepressible Emily Taylor of the Solve ME/CFS Initiative to lobby members of Congress. Specifically, we urged them to add ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome) to a list of diseases eligible for research funding from the Department of Defense. This post contains some reflections on the experience.

Emily enlisted me to fill in for an injured colleague. Probably this was because I had vast one day of experience lobbying and I live a few blocks from the Capitol. Oh, and I’ve been sick since 2010, so I could serve as “poster child.”

This brings me to my first note: my main role was to describe my suffering in dramatic terms. In contrast, my inclination is to think of myself as an analytical expert, and, furthermore, I prefer to not drag listeners through the details of my degradation. Yet it became clear that the staffers needed to hear firsthand about the crawling, the running out of groceries, the ruined career, etc., to understand and feel the gravity of the illness. (Okay, I left out the details of the IBS.)

A related point is that it’s quite stressful for me to talk about such intimate details because the recitation, especially in that context, forced me to shine a spotlight on my ruination in a way that I generally avoid. I might sweep a searchlight across the topic now and then, but I now believe that the unexamined life is sometimes underrated. The emotional stress of the four appointments with congressional staff members  was equivalent to performing too much physical activity. My usual symptoms worsened immediately, and post-exertional malaise (PEM) followed a day later.

My second note is that the process feels like the Hunger Games for diseases: “Fund research for us instead of them – we deserve it more than they do!”

My third note is the best: the staffers are so nice! Regardless of their actual opinions, they treated me with great sympathy. Beyond that, I noticed that one staffer seemed surprised when I described ME/CFS as “stigmatized.” Perhaps younger people (which most staffers are) haven’t heard the derisive comments that have shaped older people’s prejudices. That’s reason for optimism!