- Last Updated: 19 April 2020 19 April 2020
In this month's newsletter, information about Advocacy Day (April 21), new support groups (April 25 and 26) and Millions Missing (May 12), links to support services, and an ME/CFS specific request for proposals from NIH. Read on for all the details.
Advocacy Day is this week! April 21, 2020
ME/CFS Advocacy Day is taking place on Tuesday, April 21. If you registered with Solve ME/CFS Initiative (SMCI) to participate, you will have received emails with your schedule. 29 advocates from Massachusetts registered! This is almost three times as many as were able to travel to Washington, DC last year. More than 340 advocates registered nationwide and almost 300 meetings have been scheduled.
If you didn't register for Advocacy Day, you can still participate in advocacy events this week. Check out SMCI's Action Kit with links to generate emails and social media posts, or use the more detailed Tweet-DC-Advocate Handbook to create your own social media posts.
Monday, April 20, 1- 2:30 pm Eastern Time: 2nd Annual EmPOWER M.E. Roundtable “Navigating Public and Private Disability Insurance with ME/CFS" sponsored by the Bateman-Horne Center and Kantor and Kantor, LLP.
Sunday, April 19 - Sunday, April 26: Instagram stories -- share a snapshot of your life with ME/CFS.
Wednesday, April 22: Tweet-a-thanks -- Tweet your US Senators and US Representative to thank them for meeting with us.
Thursday, April 23: Can you hear M.E. now? -- Call your US Senators and US Representative and ask for their support on the SMCI recommendations.
Friday, April 24: Facebook Flood -- Post ME/CFS information, thank Congress for meeting with us, ask for their support.
New MassME/CFS & FM Support Groups!
Were you able to attend any of our recent regional groups on Zoom? If so, thank you for your participation. It was wonderful to meet so many of you!
We are offering two Zoom support groups the last weekend in April. We will meet for an hour on Saturday, April 25th at 11am and on Sunday, April 26th at 5pm. We will introduce ourselves, talk about group opportunities, and use break-out sessions in Zoom to get more closely acquainted. Please keep a lookout for Zoom invites this week. You are welcome to attend one or both sessions.
If you have any questions or comments about support groups, or need help with Slack or Zoom, please don’t hesitate to email Jeanne, support group coordinator, at supportgroups at massmecfs dot org.
And, if you haven’t filled out our survey yet, please take a couple of minutes to do so.
Millions Missing is May 12, 2020
Millions Missing, MEAction's visibility event, will be virtual this year, due to the coronavirus outbreak. Last year, we had a rousing event on Boston Common with more than sixty volunteers in red T-shirts, marching and carrying signs. Please join us as we plan and execute this year's event -- bold ideas welcome! Send an email to volunteer at massmecfs dot org to get involved.
Information about Support Resources during Covid-19
The AMMES (American ME and CFS Society) Financial Crisis Fund can provide a small, one time grant for financial emergencies (e.g., imminent eviction). Thanks to a generous donation, they have money earmarked for Massachusetts residents.
Several Massachusetts farms and organizations are delivering produce/groceries: Massachusetts Food Delivery (anywhere in MA), Sunderland Farm Collaborative (delivery or pickup in Western MA), Farmers to You (delivery or pickup in the Boston Metropolitan Area). The food is not cheap, but is excellent quality and you are supporting local farms and businesses. If you receive SNAP benefits, ask about discounts.
Mutual Aid Societies: Many local mutual aid societies have sprung up to match volunteers with people in need. Google "mutual aid" plus the name of your town. Or try these listings for Western MA, Western MA, statewide MA, or nationwide mutual aid groups.
Free, online daily mindfulness practice through the Center for Mindfulness and Compassion at Cambridge Health Alliance. Our very own Yasemin Isler is one of the instructors.
NIH Releases ME/CFS Specific Requests for Proposals
NIH just released two requests for proposals dedicated to ME/CFS! No funding is set aside, but this is a sign of progress. Pass this along to any researchers that you know.
- PAR-20-165, Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R01 Clinical Trials Not Allowed)
- PAR-20-168, Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R21 Clinical Trials Not Allowed)
Volunteer with Us!
Can you help with our activities? Join us to plan the Millions Missing event on May 12th, or provide patient services, or update our social media, among many projects. Join our next volunteer phone call on Saturday, May 16th at 12 noon (Video & audio: https://zoom.us/j/395006189; Audio only:+1 720 707 2699 US, Meeting ID: 395 006 189). Or let us know by responding to this email or through the Contact Us form on our website. And, of course, we always welcome financial support for our work to improve health care and support services for people affected by ME/CFS and FM.
Leah Williams, Association President