- Last Updated: 17 April 2021 17 April 2021
In this month's newsletter:
- Community Appreciation Event, April 29, 7 PM (ET)
- US ME/CFS Clinician Coalition Recommendations
- International ME/CFS Awareness Day, May 12
- CDC Stakeholder Call, May 13, 3 PM (ET)
- MGH Research Study Seeking Participants
- Volunteer Spotlight
- Support Groups in April
Community Appreciation Event!
You are invited to an online event celebrating our community! It will be an evening of fun, music, stories, information and inspiration! Meet others in our community, hear from one or two special guests, and find out what’s going on at MassME. Enjoy live music by Will Baird. Thursday, April 29, 7 PM ET. All are welcome! Register here.
ME/CFS Clinician Coalition Recommendations
The US ME/CFS Clinician Coalition has released two new documents, geared for general practice health care providers, that summarize their recommendations for testing and treatment. These are companions to the Clinician Coalition's overview on diagnosing ME/CFS.
Mark Your Calendar: International ME/CFS Awareness Day
MassME is celebrating May 12th, International ME/CFS Awareness Day, with a concert presented by the New View Saxophone Quartet on Saturday, May 15th! Stay tuned for more details!
#MEAction is organizing a whole week of virtual Millions Missing events, with the main event on May 12th from 12-2 PM (PT)/3-5 PM (ET). You can see the schedule here. Check out their toolkit for participating on May 12th or for planning your own local event.
Mark Your Calendar: CDC ME/CFS Stakeholder Engagement and Communication Call
CDC is hosting their next Stakeholder Engagement and Communication Conference Call on Thursday, May 13 at 3 PM (ET). Beth Unger will give an update on CDC activities and Dane Cook will discuss exercise testing in the Multi-site Clinicial Assessment of ME/CFS (MCAM) study. No need to pre-register. Join the zoom call by clicking here or calling 1-669-254-5252.
Research Study Seeking Participants
Researchers at MGH are recruiting ME/CFS patients and their healthy family members for a study using dual MR-PET (magnetic resonance/positron emission tomography) scans to measure inflammation in the brain. If you have a healthy family member who is interested in participating in research, please contact PSLaraMejia at mgh dot harvard dot edu.
We are delighted to have Candace Sommer-Van Auken on our team of new volunteers! Candace’s technology background has been invaluable as she helps update and modernize the MassME website.
Candace has a rare disease (idiopathic anaphylaxis) and she has learned a tremendous amount about her condition and how to deal with it by volunteering with the Mast Cell Diseases Society. Candace’s wife is a pwME and nowadays Candace is spending her time volunteering with MassME.
Here’s a fun fact about Candace: She plays a variety of instruments “badly.” They include an English concertina, a Hayden Duet concertina, a Roland V-accordion, a Yamaha digital guitar, and more keyboards than any one person should own. We are so lucky to have Candace and look forward to perhaps even hearing Candace play one day-even if it’s bad! Thank you, Candace!
Support Groups on Zoom!
Research Club: Sunday, April 18, 5:00 PM (ET). Register here. Janet Mullington, Professor of Neurology, Harvard Medical School will give a presentation on "Sleep deficiency and fatigue, a role in ME/CFS?" and answer questions.
Housing Discussion Support Group, Wednesday, April 21, 3:00 PM (ET). Register here.
DIY Club: Sunday, April 25, 5:00 PM (ET). Register here. Join our ongoing discussion of how to use a systematic approach to improve our physical well-being. This month's topic is sleep.
Questions? Comments? Need assistance? Email Jeanne Perrin, Support Group Coordinator, at supportgroups at massmecfs dot org or Direct Message (DM) her on Slack.
You Can Help Us!
Volunteer! Do you have web skills? Can you edit a video? Do you have fundraising experience? Do you want to help plan our next event? We have lots of projects and even if you only have an hour or two a month, we would love your help. Contact Loryn, our Volunteer Coordinator, at volunteer at massmecfs dot org.
Support our Work! We welcome financial donations to help us support people with ME/CFS and FM, and now Long COVID. All of our funding comes from individual donations and any amount will help. Please support us by becoming a member or donating now!