- Last Updated: 19 December 2020 19 December 2020
In this month's newsletter: our first ever Art Share Event, a presentation on NIH research, new continuing medical education courses to share with your providers, links to the videos of our annual meeting, a reminder to contact your US Representative about HR7057, and our upcoming support groups. Read on for details.
Announcing our First Art Share Event!
Do you have original artwork around the theme of ME/CFS, FM, or chronic illness? Share it with us for a chance to be featured in our newsletter and on our social media platforms. 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.
Presentation on NIH Research, Wednesday, December 2nd, 1 PM (EST)
The first paper from the National Institutes of Health’s intramural post-infectious ME/CFS study has been published: “Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)” in Frontiers in Neurology. Post-exertional malaise, also known as PEM, is considered the “hallmark” symptom of ME/CFS and this important paper identified differences in PEM symptoms, especially PEM caused by exercise, for the first time! Join lead author Barbara Stussman and co-author Dr. Brian Walitt of the NIH in a conversation about these important findings and their impact on the next chapter of ME/CFS research. The conversation is hosted by Solve ME/CFS Initiative. Register here.
New Continuing Medical Education Courses!
Workwell Foundation and MedBridge have partnered to provide accredited online courses on the topic of ME/CFS for rehabilitation professionals including physical, occupational and speech therapists as well as nurses and other health care providers. The courses are presented by Todd Davenport DPT, Mark VanNess PhD and Staci Stevens MA, who are leading experts in the field. More information here.
Dysautonomia International and Nova Southeastern University invite you to a virtual Continuing Medical Education (CME) Workshop on Saturday, December 5, 2020. This virtual event is open to medical professionals, students, patients & caregivers. CME credit is available for physicians. Advanced registration is required. Limited spaces are available. Register here. The workshop costs $20 for patients/caregivers and $40 for professionals who want CME credits.
MassME Annual Meeting Videos Available on YouTube
If you missed it in real time, you can now watch the videos from our annual meeting on YouTube. A huge thank you to our partners at Open Medicine Foundation (OMF) and to Drs. Tompkins, Systrom and Felsenstein for generously sharing their time and expertise.
US House Legislation for ME/CFS Research, H.R. 7057
Ask your US Representative to co-sponsor H.R. 7057! Introduced by Rep. Jamie Raskin (D, Maryland), The Understanding COVID-19 Subsets and ME/CFS Act (H.R. 7057), will authorize a $60 million ($15 million/year over 4 years) program expansion for ME/CFS research at the National Institutes of Health (NIH) and expand public and medical ME/CFS education initiatives. The bill currently has 51 co-sponsors, including Rep. McGovern and Rep. Lynch in Massachusetts (see the full list here). Please ask your US Representative to join them. You can use this form to quickly contact your Representative.
Support Groups on Zoom!
If you want to join our support groups, sign up to receive our newsletter by email. Registration links are sent at the beginning of each month.
Open Discussion Support Group: Saturday, November 21st, 10:30 AM (EST)
Join us for open discussion.
Research Club: Sunday, November 22nd, 5:00 PM (EST)
Roshan Kumar, PhD, will discuss recent studies looking at abnormalities in metabolism in people with ME (pwME). Metabolic processes digest food, produce energy and repair cells. What are researchers finding about how specific metabolic pathways are functioning in pwME?
Do-It-Yourself (DIY) Support Group Continues: Sunday, November 29th, 5:00 PM (EST)
This is the fourth in a four-part series, presented by a person with ME/CFS, on navigating tests and treatments, and on how to work with doctors to get help.
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. Our next volunteer meeting is Saturday, December 12th at noon. Let us know if you want to join the meeting.
Leah Williams, Association President