In this issue, we have an invitation to an Open Medicine Foundation event on June 8th, a summary of our successful Boston Millions Missing event, exciting news about the US Senate Resolution in support of ME/CFS awareness, and two dates to mark on your calendar (a CDC ME/CFS stakeholder call on June 3rd and our annual event on October 26th).
The Open Medicine Foundation (OMF) will hold its inaugural Harvard ME/CFS Collaboration Public Symposium: Finding Clarity on Saturday, June 8th from 1 to 4 pm in Assembly Row AMC Theater 12 (395 Artisan Way, Somerville, Massachusetts). This free public event will introduce the OMF-funded Harvard ME/CFS Collaboration at Harvard Affiliated Hospitals, which includes 30 researchers, and will feature presentations by co-directors Ronald G. Tompkins, MD, ScD, and Wenzhong Xiao, PhD. Please come and meet the researchers and the OMF team. Space is limited so please register now. Parking is available in the garage next door and the theater is three blocks from the Assembly T Station on the Orange Line. We are looking for several volunteers to help with this event. If you are interested, please contact our Volunteer Coordinator, Alyssa-Rae McGinn at alyssarae dot mcginn at gmail dot com.
Written by Susanna Kittredge, Lead Organizer
It was a beautiful sunny day on Boston Common as about sixty ME patients, family members, friends, and allies gathered to share their stories and raise awareness about an illness that affects tens of millions of people across the globe (see more pictures here). Organized by a handful of dedicated Massachusetts ME/CFS & FM Association (MassME) board members and volunteers, this was the largest Boston #MillionsMissing event yet. The Common's Liberty Mall was decorated with clotheslines displaying the stories of dozens of patients missing from their day-to day lives, while others were represented by shoes and signs lining the eastern edge of the mall. Volunteers strolled the perimeter, handing out information to curious passers-by.
Speakers included researcher Dr. Michael VanElzakker who described the ME/CFS collaborative research happening at Massachusetts General Hospital and the Harvard affiliated hospitals. Former MassME president Charmian Proskauer shared her personal story of supporting a loved one with ME and promoted some of MassME's educational programs. Bob Robitaille, whose adult daughter has severe ME, gave an update on MassME's work with congressional representatives, including Senator Ed Markey, who has been a champion for ME. Several patients shared their personal stories including the difficulty of getting diagnosed and the simultaneous relief and despair they felt on finally learning that yes, they really did have a bona fide, diagnosable illness, but no, there was no cure. Others described the heart-wrenching challenges of parenting with ME. Many speakers reiterated the need for healthy advocates and volunteers; ME patients and their caregivers have become outspoken activists out of necessity, but it is neither fair nor feasible for them to bear the burden alone. Finally, patient and organizer Claudia Carrera expressed her anger and disappointment with NIH director Francis Collins' broken promises of timely research funding for ME/CFS. Carrera called on advocates to answer #MEAction's calls for civil disobedience in pursuit of justice for people with ME everywhere. In honor of Mother's Day, Carrera then lead the crowd in chants of "ME research funding now!/Bring our missing children back!"
As always, #Millions Missing was bittersweet. It is always so inspiring to see this vibrant, loving community come together to support each other. But we still have a long way to go to get the support we deserve from our government and the community at large.
Many people contributed to the success of this event, but I especially want to give a shout-out to the following members of the organizing committee (in alphabetical order): Jim Ampe, Susan Buckley, Cecilia and Claudia Carrera, Jeanne Gose, Jennifer Lynch, Alyssa-Rae McGinn, Charmian Proskauer, Rivka Solomon, and Leah Williams. Thanks also to all our speakers, especially those who shared their personal stories.
Last week, Senators Ed Markey of Massachusetts and Susan Collins of Maine introduced a bi-partisan Senate Resolution entitled “Supporting the goals of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day.” Developing this resolution was a multi-year collaborative effort between Solve ME, #MEAction and the Massachusetts ME/CFS & FM Association. The resolution supports the goals of ME/CFS Awareness Day and affirms the support of the US to more research and better awareness. You can read the full text here. Senator Elizabeth Warren has also signed on as a co-sponsor. The resolution is expected to pass this week. A similar resolution will be introduced in the US House of Representatives soon. Keep an eye out for an advocacy alert about contacting your Representative to support it.
CDC will hold an ME/CFS Stakeholder Engagement and Communication call on Monday, June 3rd, 2019 from 3 to 4 pm (EDT). Dr. Beth Unger will present updates from the CDC and Dr. Alison Bested will give a presentation about pacing. The last 15 minutes is reserved for questions from the community. You can join by phone by calling 1-888-790-3359 and entering the participant code 4299828. Or you can join a webinar format at https://adobeconnect.cdc.gov/r7s9zv5127w6/.
Dr. Michael VanElzakker is the featured speaker at our annual event on Saturday, October 26th, 1-4 pm at Newton-Wellesley Hospital. We will have a brief business meeting for the association, including electing new members of the board of directors. If you are interested in serving on the board, please let us know through the Contact Us form on the website. We are looking specifically for someone to be Clerk and someone to be Treasurer. If you have relevant skills and time to donate to a worthy organization, please let us know! After the business meeting, Dr. VanElzakker will talk about his brain imaging research and answer questions from the audience. This event is an excellent way to meet fellow members of our community -- we hope to see you there.
We are always in search of more people to help with our activities. We particularly need assistance with organizing events, revamping our website, and maintaining our database. If you would like to volunteer, please let us know through the Contact Us form on our website. Or join our next volunteer phone call on Monday, May 20th at 12 noon (dial 712-775-8962, then enter 698-286). And, of course, we always welcome financial support for our activities in advocacy, education and patient services.
Leah Williams, Association President