- Last Updated: 30 March 2018 30 March 2018
So much news to share!
Jen Brea’s film Unrest has made a big splash and has greatly advanced public awareness of ME/CFS! We decided to build on this momentum by arranging a series of screenings of Unrest throughout Massachusetts this year, to follow on from our very successful public screening at the Regent Theatre in Arlington last fall. These new events will reach diverse audiences, and most will have educational programs attached. Some are open to the public, and you are welcome to attend if you can.
Besides raising public awareness with these events, we also are focusing on bringing information to patients, health care providers, and researchers. Our goal to improve access to treatment for patients by creating a wider pool of knowledgeable providers, and to establish a community of researchers in Massachusetts.
Our Association has made a significant financial investment to hold these events, but we feel that this is the best use of our resources to carry out our mission at this moment in time. Besides “our” events, there are quite a few additional events taking place that are not organized or sponsored by us, though in some cases we are supporting them with information tables and publicity.
Here’s the list of events MassCFIDS is organizing/sponsoring this spring:
• March 27 – Massachusetts Department of Public Health.
• April 5 – Wellesley College. Open to the public.
• April 12 - Brandeis University. Open to the public.
• April 24 – Massachusetts State House
We are also in discussions with other institutions and groups to schedule more events.
Here are some of the Unrest events in metro Boston and beyond that are not directly organized by us.
•Jan 24 – Somerville Theatre. Public screening; film introduction and information table.
•Jan 31 – MGH Martinos Center (organized by Mike VanElzakker). For MGH staff/public.
•March 22 – Emerson College, hosted by Reel Abilities, a disability film festival. Open to the public. Registration Strongly Recommended at: www.reelboston.org
•March 26 – Harvard Medical School, Open to the public.
•March 28 – Brattle Theater. Sponsored by MIT Media Lab. Open to the public.
•June 8 and 9 – Pothole Pictures, Shelburne Falls Cinema, Shelburne Falls, MA. Unrest film and panel after the June 9 showing. Open to the public.
Thank Dr. Al DeMaria for hosting our screening at the Massachusetts Department of Public Health!
Dr. DeMaria, Medical Director of the Bureau of Infectious Disease in the Massachusetts Department of Public Health and State Epidemiologist, was our host for this highly successful event that raised awareness among all Public Health employees (including all school nurses) in Massachusetts. When a state agency promotes awareness of ME/CFS it is a Big Deal! Add your “kudo” to the card!
Things you can do
We want to hear about your experience dealing with medical insurers.
This relates to commercial medical insurance (e.g. Blue Cross/Blue Shield, United Health Care, Aetna, etc.) NOT Medicare or your state’s Medicaid program or any type of disability insurance. Do you have a story, positive or negative, about getting coverage for medical care or drugs related to your ME/CFS? If so, we would like to hear from you via this brief survey Responses can be anonymous, but if you are willing to be contacted by us later for more detail, please provide contact information (this is optional). This survey is open to anyone in the U.S. (any state) who is covered by a commercial medical insurer.
An opportunity to help.
We don’t often ask for donations to support other organizations, in fact, this might be the first time. Long time patient/advocate, author, and Association member Erica Verrillo has established a new non-profit which fills a long-need gap for a patient services group with a national reach. “The American ME and CFS Society (AAMES) is dedicated to serving the needs of patients and caregivers through support, advocacy, and education. We seek to channel patient perspectives to government agencies, committees and initiatives, and to unify the ME and CFS community by pursuing the common goals of expanding research, increasing knowledge about treating the disease, and educating health care professionals to help them make a timely diagnosis and alleviate the suffering of patients.”
In this fund-raiser, AAMES is raising money to provide crisis support directly to patients, who often have acute financial needs. This is a service that patients have often asked our Association to establish, but unfortunately, we do not have the capability or funds to provide this.
If AAMES can raise $3000 by May 11, it will be eligible for a $25,000 grant. This amount would help many patients. If you can donate even a small amount to AAMES’ crisis fund, you will be helping a fellow patient at a time of great need.
Save the date - Second Annual Community Symposium on the Molecular Basis of ME/CFS
Sponsored by Open Medicine Foundation
Chronic Fatigue Syndrome Research Center at Stanford University
Saturday, September 29, 2018
NIH Telebriefing audio and transcript
The audio recording and transcript of the March 7th telebriefing are now available on the Events page of the NIH ME/CFS website.
Keynote speaker was Dr. Ian Lipkin.