- Last Updated: 31 December 2018 31 December 2018
We have exciting news this month about advocacy, events and changes to our association board. First, thanks to persistent advocacy by the ME/CFS community, 42 Members of Congress signed a letter to Health and Human Services in support of people with ME/CFS. Second, we are in the planning stages of an educational event on January 15th at the Mass General Hospital Institute of Health Professions that is a required course for their 600 students, and also open to the public so you can invite your health care providers. Third, we have several new board members and new officers who are eager to guide our association into the future. Details about these items are below, but first a gentle reminder. December is the only time of the year that we send fundraising appeals. If you have already donated, you have our deepest appreciation. If not, and you want to support our activities in advocacy, education and patient services, please give today!
Holiday Advocacy Victory: 42 Members of Congress Sign on to Support People with ME/CFS
Thanks to another strong turnout from the ME/CFS advocacy community, 14 Senators and 28 Congressional Representatives joined together to sign this bipartisan letter to the U.S. Department of Health and Human Services (HHS) in support of people with ME/CFS. The bicameral letter was sponsored by Senator Ed Markey (MA) in the Senate and Congresswoman Anna Eshoo (CA-18) in the House of Representatives. The letter was drafted as an urgent response to the sudden termination of the Chronic Fatigue Syndrome Advisory Committee (CFSAC). The letter does the following:
(1) States that more must be done by HHS to address ME/CFS needs,
(2) Describes the challenges we face,
(3) Requests that HHS explain how it will fill the gap left by the September 2018 dissolution of CFSAC,
(4) Poses detailed questions regarding the ME/CFS activities and plans of the National Institutes of Health and Centers for Disease Control, and
(5) Requests a formal response from HHS by January 12, 2019.
In the Massachusetts delegation, this letter was signed by:
Rep. Katherine Clark, @RepKClark
The letter with the full list of signers can be found here. If your Member of Congress is listed, please thank them for their support! You can sign our ME/CFS Community thank you card here. Please also consider thanking them on social media. Member twitter handles and Facebook pages are listed above. If your members of Congress are not listed, please reach out to their offices and ask why they did not sign and what we can do to obtain their support next time. This month’s joint action on Capitol Hill was executed as a partnership among #MEAction, the Solve ME/CFS Initiative, and the Massachusetts ME/CFS & FM Association.
Announcement: Educational Event for Health Care Providers on January 15th, 2019 - Open to the public!
Come learn about the "millions missing," those living with the debilitating disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which disables 1-2.5 million Americans.
Massachusetts General Hospital Institute of Health Professions
invites the public, healthcare providers and researchers to the
2019 Ann W. Caldwell President’s Lecture: Interprofessional Rounds
Program moderator: Ronald G Tompkins, MD, ScD
Director, MGH Center for Surgery, Innovation & Bioengineering
Tues., Jan.15, 5:30–7:00 p.m (doors open 5 pm)
Blackman Auditorium, 342 Huntington Ave (Ell Hall), Boston
This year’s topic is “Invisible Disability: Providing Compassionate Care for a Person with ME/CFS.” Join us for an excerpt of the Sundance award-winning film UNREST, chronicling the hidden lives of patients, followed by a discussion with an MGH researcher, a healthcare provider and patient advocates. This program will inspire you to bring a new awareness about ME/CFS back to your clinical practice. Learn more about this event here.
Updates on the Board of Directors
We are delighted to welcome four new members to the Association board: Ruth Walton, Phil Chernin, Carol Isaacson Barash and Pat Woods. Ruth and Pat are nurses, and all four have a personal connection to ME/CFS and extensive experience with advocacy, as well as experience on the boards of other non-profits. Four board members are continuing, including Charmian Proskauer (former President), Bob Bodio, Ann Bodio and myself. We also elected new officers. I am President, Ruth is Vice President, Phil is Treasurer and Charmian is Clerk.
We spent time in the fall thinking about how to structure our board and association so that operational tasks do not fall entirely on the shoulders of a few people, a situation that was causing burnout and preventing the board from focusing on larger issues of governance and policy. Going forward, the board will be conducting a strategic planning exercise to refine our vision and plan how we can continue to grow in a sustainable manner in response to increasing requests for our participation in advocacy efforts (such as the letter to HHS) and educational events (such as the MGH event in January), as well as ongoing requests for patient services. Meanwhile, we are actively looking for volunteers who can take on operational duties, such as planning events, organizing advocacy efforts, writing the newsletter, updating the website, assisting with patient services and many more. If you want to volunteer, please let us know, either by responding to this email or through the Contact Us form on our website.
Wishing you all the best in the New Year,
Leah Williams, Association President