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.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the