Congressmen Jim McGovern (D-Massachusetts) and Jamie Raskin (D-Maryland) visited with researchers studying ME/CFS (myaglic encephalomyelitis/chronic fatigue syndrome) and Long Covid (LC) at the University of Massachusetts Chan Medical School in Worcester, Massachusetts on June 1, 2022.
This exciting visit was organized by the Selin Lab at UMass and ME advocate Rivka Solomon, in conjunction with the Massachusetts ME/CFS & FM Association. Fourteen people attended this private meeting, both virtually and in-person.
First, Rivka gave an overview of the illnesses. Then Massachusetts residents Jehan Keziere and Netia McCray shared moving personal stories about living with ME and LC. They called for more clinical and research help. Viral immunologist Liisa Selin, MD, PhD, shared about the cutting-edge research her lab is conducting, with her colleague Anna Gil, PhD. After, Hayla K. Sluss, PhD, a UMass researcher studying mechanisms of ME, shared the challenges of being a caregiver for a child with ME. All agreed about the need for more clinical and research help.
Next, the members of Congress asked questions and expressed keen interest in supporting both the patients and the researchers. UMass is located in Representative McGovern's congressional district, so he pointedly asked: “How can I help? What is the next step?” Together, the participants discussed possible ideas.
Later, McGovern's staffer said everyone was happy with the meeting. That was wonderful to hear, because a good, ongoing relationship with Congressman McGovern could help both the people living with these highly disabling illnesses, and also the researchers studying them.
Media attended and we are hopeful something may soon be published.
More photos of the event by Andy Joliat:
https://thefamilyalbum.pixieset.com/umassmedschandcongressmen/ PIN 6188