- Last Updated: 19 December 2020 19 December 2020
In this month's newsletter: our annual funds appeal, a holiday concert, the Art Share Event Gallery, a new writing group, a new research organization, a reminder of where to find the videos from our annual event, and our upcoming support groups. Read on for details.
We need your help to continue supporting people with ME/CFS and FM in Massachusetts and beyond. We had a busy 2020 building our support group program and improving our provider referral process, among other projects, and we have big plans for 2021. You can read all the details here. All of our funding comes from individual donations and any amount will help. Please support us by becoming a member or donating now! If you have already donated, thank you.
Holiday Concert Sunday, December 27th, 3 PM!
Join us for a "Beethoven in C" Holiday Benefit Concert live-streamed in support of the Open Medicine Foundation, Harvard ME/CFS Collaboration and Massachusetts ME/CFS & FM Association on Sunday, December 27th, 3 PM (EST). Come enjoy the music and the holiday spirit. Register here.
Art Share Event Gallery!
Check out the November and December submissions to our Art Share Event! Thank you to our volunteers for sending their heartfelt paintings and poetry. This event is ongoing -- it is not too late to send your original artwork around the theme of ME/CFS, FM, or chronic illness. We welcome paintings, poetry, photographs, music, fiction, and any other creative work, from volunteers, members, caregivers, and artists. You don’t have to be a professional artist to submit! Send your submissions to Loryn, our Volunteer Coordinator, at volunteer at massmecfs dot org.
New Writing Group
#MEAction is partnering with longtime ME advocate and mother of a pwME, Bobbi Ausubel, to host a brand new writing group for people with ME, Writing From Our ME Lives. This group is for people with ME who are interested in writing stories, tales, poems, essays, songs, and diaries. The writing can be fiction, non-fiction, and even whimsical. The group meets every Thursday at 11 AM (PST)/2 PM (EST). You can RSVP here. Or contact Bobbi at bobbi dot advocate at meaction dot net with any questions.
New Research Organization
We are excited to learn about a new nonprofit called PolyBio that was just founded by our close allies Dr. Michael VanElzakker and Dr. Amy Proal, along with geneticist Kris Fobes. The mission of PolyBio is to conceptualize and coordinate research projects and then raise the funds needed to launch those projects. Mike, Amy, and Kris have many truly fascinating ideas for how complex chronic conditions such as ME/CFS and fibromyalgia can be studied. They have an abundance of connections in the science world, and have found that whenever they talk about these chronic illnesses, their fellow scientists are fascinated and open to studying patients - they just need pilot funding. PolyBio is a way to make these ideas into reality. Visit www.polybio.org to learn more. Mike gave the keynote talk at our 2019 Annual Meeting -- watch the video here.
MassME 2020 Annual Meeting Videos Available on YouTube
Speaking of videos, you can now watch the videos from this year's annual meeting on YouTube. A huge thank you to our partners at the Open Medicine Foundation (OMF) and to Drs. Tompkins, Systrom and Felsenstein for generously sharing their time and expertise.
Support Groups on Zoom!
Open Discussion Support Groups: Join us for general discussion.
Saturday, December 19th, 10:30 AM (EST). Register here.
Sunday, December 20th, 5:00 PM (EST). Register here.
Sunday, December 27th, 5:00 PM (EST). Register here.
Questions? Comments? Need assistance? Email Jeanne Perrin, Support Group Coordinator, at supportgroups at massmecfs dot org or Direct Message (DM) her on Slack.
Volunteer with Us!
We need your help to provide patient services, update our social media, plan our next event, and advocate for more research funding, among many projects. If you want to volunteer, please send an email to Loryn, our Volunteer Coordinator, at volunteer at massmecfs dot org or let us know through the Contact Us form on our website.
On a personal note, this is my last newsletter as Association President. I have come to the end of my two year term and I'm passing the baton to the next president, Phil Chernin. I won't disappear, though. I will remain on the board as Past President and continue to write the newsletter. It has been a pleasure leading this organization of inspiring and dedicated people. Keep up the good work.
Leah Williams, Association President