2018-12 December Newsletter

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Last Updated: 31 December 2018 31 December 2018

Dear Friends,

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:

Senator Edward J. Markey, @SenMarkey, www.facebook.com/EdJMarkey

Senator Elizabeth Warren, @SenWarren, www.facebook.com/senatorelizabethwarren

Rep. Katherine Clark, @RepKClark

Rep. Jim McGovern, @RepMcGovern, www.facebook.com/RepJimMcGovern

Rep. Joseph P. Kennedy, III, @RepJoeKennedy, www.facebook.com/CongressmanJoeKennedyIII

Rep. Stephen F. Lynch, @RepStephenLynch, www.facebook.com/repstephenlynch

Rep. Seth Moulton, @teammoulton, www.facebook.com/RepMoulton

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)
Northeastern University
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

New videos are posted!

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Last Updated: 03 December 2018 03 December 2018

Not able to attend recent screenings of Unrest in Massachusetts?

Videos (opening remarks and panel discussion) from these events are now posted.

Video from Boston University (Boston, October 2018)

Video from Cooley Dickinson Hospital (Northampton, May 2018)

Video from Massachusetts State House (Boston, April 2018)

Video from Massachusetts Department of Public Health (Boston, March 2018)

Video from Regent Theatre (Arlington MA, Nov. 2017)

ME/CFS educational events - Fall 2018

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Last Updated: 03 December 2018 03 December 2018

Get details of all ME/CFS educational events Fall 2018 in Massachusetts.

• September 12 – Massachusetts General Hospital, Boston, MA. Sponsored by the Russell Museum.
• October 10 – Tsai Performance Center, Boston University, Boston, MA. Sponsored by Sargent College Alumni Association. Video.
• October 16 – Geisel School of Medicine at Dartmouth, Hanover, NH.
• October 30 – Northeastern University School Health Academy, N.U. School of Nursing, Burlington, MA. Contact hours credit for nurses and Professional Development Points for school professionals. More information.
• November 3 – "How Investigative Journalism Succeeds in a Hostile Medical Environment: A Conversation with David Tuller," Mass ME/CFS Annual Meeting and Conference, Newton Wellesley Hospital, Newton, MA.

“My Medical Insurance Story” Survey – summary of results

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Last Updated: 08 June 2018 08 June 2018

We conducted a short 5-question survey during the month of April, 2018, and publicized it within the U.S. ME/CFS community. We asked respondents to briefly describe their experience with their (U.S.) commercial health insurance provider, identify the insurance provider, and rate their overall experience on a scale of 1 to 5 from very positive to very negative. We also asked if they had received a diagnosis of ME, CFS, or ME/CFS. We received 187 responses. Results were tallied by hand. 95% of respondents had a diagnosis of ME/CFS, or ME/CFS. 22% reported very positive or positive experiences, 16% neutral, and 62% negative or very negative.

Read more: “My Medical Insurance Story” Survey – summary of results