Association News & Events
- Last Updated: 05 December 2017 05 December 2017
Our special showing of the Sundance award-winning documentary, UNREST, by Jennifer Brea on Sunday, November 12, 2017 at the Regent Theatre in Arlington, MA was a huge success, thanks to our many volunteers who organized the event, our many co-sponsors who promoted the event, and the more than 360 people who attended, including many health care professionals and researchers.
- The event was packed! The UNREST production team believes our event was the most well-attended community-organized screening of Unrest ever held in the country.
- Support from Elected Officials: The joint statement of support from the entire Massachusetts Congressional Delegation, read aloud at the event, will be a role model for other states to follow. We hope you and your friends will sign this digital "Thank you" card to the MA Congressional Delegation (click the button "ADD Kudo/Image/Video.")
- Panel/Video: Our panel moderator, Deborah Becker, WBUR (NPR’s Boston station) senior correspondent/host, and our panelists, Mary Dimmock (ME Advocate), Michael VanElzakker (ME Researcher), Kiki Zeldes (ME Patient and Women’s Health Advocate) and Lisa Hall (Healthcare Professional), did a wonderful job sharing their perspectives and fielding audience questions for 45 minutes. Video of the opening remarks, panel discussion and audience Q&A is now online to share with others. This awareness-raising video is available to be shown on local cable TV stations in New England and the entire US. If you can help by asking your local cable station to air it, please contact us.
- 19 co-sponsoring organizations: Government, healthcare, academic, disability, ME/CFS, religious, arts, and women's organizations co-sponsored our event (all are listed here). They included the MA Department of Public Health and the Division of Women's Health at Brigham and Women's Hospital. This was the most diversely-sponsored ME/CFS event ever held.
UNREST is a moving and beautiful film and an excellent way to raise awareness about this devastating disease that impacts an estimated 28,000 people in Massachusetts and 1 to 2.5 million in the US. We invite you to help us continue to raise awareness about ME/CFS in the medical and healthcare community. Are you available to discuss bringing UNREST to your institution? If so, please contact us.
New Guide: Additionally check out this MEAction Best Practices Guide for how to organize larger, impactful UNREST events. They used our successful event as their case study.
- Last Updated: 08 December 2016 08 December 2016
The video of "ME/CFS: A Surge of Interest and Knowledge", the lecture by Dr. Anthony Komaroff, Harvard Medical School Professor, Clinician and Researcher, presented to Massachusetts CFIDS/ME & FM Association on Nov. 5, 2016, is now posted.
The lecture is 63 minutes.
The Q&A is 34 minutes.
- Last Updated: 07 January 2016 07 January 2016
Our Association has been invited to nominate a representative to the Technical Development Workgroup, sponsored by the Centers for Disease Control and Prevention, ME/CFS program. Our nominee, a patient and Board member, not only has a background in public health but will also bring the patient's voice to this project. This project will begin shortly and is expected to terminate sometime in 2017.
- Last Updated: 03 April 2016 03 April 2016
Up to 60% of Fibromyalgia patients in some studies show evidence of Small Fiber Polyneuropathy (SFPN), a condition which shares many symptoms with Fibromyalgia and which may be treatable. Dr. Khosro Farhad spoke about this topic and reviewed recent research on SFPN at a public talk sponsored by the Massachusetts CFIDS/ME & FM Association on Nov. 14, 2015 at Newton-Wellesley Hospital, Newton, Massachusetts.
- Video of the talk is posted here and video of the Q&A is posted here.
- Dr. Farhad's slides are posted here.
- The chart for diagnosing Fibromyalgia according to the 2011 criteria from the American College of Rheumatology is posted here.
- A list of blood and other test to consider for diagnosing Small Fiber Polyneuropathy is posted here.
Disclaimer: There materials are provided only for convenience so that you can print them out and take them to discuss with your health care provider.
Please note this correction from Dr. Farhad: "When I spoke about the diagnosis of fibromyalgia based on American College of Rheumatology criteria, there was a mistake in my explanation. The patients need to answer “yes” to the first question and “no” to the second question in the third box [questions 4 and 5, see slide 3]. I mentioned patients should answer yes to both questions, which is not correct."