On Thursday, Feb. 23, I attended a packed town hall meeting in Northampton, Massachusetts with my U.S. senator, Ed Markey (D-MA). Around 1,400 constituents were present in both the main auditorium and the overflow room where the event was live streamed. I was one of the few who got to ask a question. I asked about ME, of course.
The Daily Hampshire Gazette covered the town hall meeting.
Earlier, Senator Markey spoke about his wife, a doctor who used to work at the National Institute of Health (NIH), and also about his staff. I have three PhDs on my staff, he proudly told the room. A perfect segue to my question.
Because I’ve been so weak, I worried about speaking up. What would it do to my heart rate? Would my brain fog allow me to think on my feet? Would the stress of it all cause a relapse? I pleaded with my husband to ask the question instead of me. Twice. Twice he encouraged me to do it myself.
Seconds before my turn came, I silently handed a young woman I did not know my iPhone and motioned for her to videotape. She nodded yes.
The mike was handed to me. I nervously stood up from my wheelchair and told the Senator I had been voting for him for about 30 years. Then I sat back down and launched in. I begged him (yes, begged) to advocate for us at the NIH with Dr. Collins. ME needs more respect and funding, I said. I asked if our ME community could meet with his PhDs. (“Done, done!” he declared, interrupting me.) And finally I said we needed a legislator-champion who will fight for us on Capitol Hill. Markey’s response: My staff will call you, and, “I will be your advocate for more research for your disease.” The hall erupted in applause.
Post-game assessment: My wording was not perfect. I was not as clear as I would have liked, thanks to nervousness coupled with omni-present brain fog, but still this promise of help from Senator Markey is key. #MEAction, the ME US Working Group and Solve ME/CFS congressional teams have been searching for a champion to fight for us on Capitol Hill. Could Senator Markey be that champion we are looking for? I hope so.
In the meantime, let’s thank Senator Markey for stating publicly he will advocate for our community. This thank-you should happen right away. It will serve as positive pressure on him to keep his word, and maybe encourage him to send a higher level staffer to the meeting ME advocates will hold with his staff.
Send your thanks via:
Phone (best option): 202-224-2742
Website contact form: www.markey.senate.gov/contact (zip code required) (non-Massachusetts residents can also use this form)
“Thank you for promising in Northampton to advocate for M.E. Millions of disabled Americans with M.E. need a champion on Capitol Hill.” And then add anything else you wish to say. If you are a Massachusetts resident definitely state that.
KRISTINE NILSEN OMA Kristine Nilsen Oma is a dancer and choreographer living in Norway. She has ME, and though it has been difficult, she has found innovative ways to continue to perform her art. Now that the world understands creating art on Zoom or Youtube Live in ways that they did not in the