In this month's newsletter, a recap of Advocacy Day and Millions Missing, information about support groups (May 24 and 31) and more small group meetings, and Charmian Proskauer featured on White House Chronicle. Read on for all the details.
Advocacy Day on April 21, 2020 was a resounding success, even though it was conducted entirely by telephone, thanks to incredible organizing by the Solve ME/CFS Initiative (SMCI). ME/CFS Advocates from 47 states met with 251 congressional offices to raise awareness about ME/CFS and to highlight the possibility that the COVID-19 pandemic may cause a surge of post-viral ME/CFS-like disease with long term consequences. The advantage of having a virtual Advocacy Day was that many more people were able to participate -- we had 28 advocates from MA on the phone, compared to 12 advocates in person last year. One exciting outcome of Advocacy Day is that Senator Markey (D-MA) has agreed to lead our effort to get funding for ME/CFS research into the next COVID-19 package.
Millions Missing, #MEAction's visibility event, took place on May 12th, International ME/CFS Awareness Day (and Florence Nightingales's birthday). It was online this year, due to the COVID-19 pandemic, and brought together people with ME/CFS and their allies all over the world. You can watch the inspiring and thoughtful US speakers here and the UK speakers here.
Have you attended any of our new support group meetings on Zoom? If so, thanks so much. Your presence is a very real and appreciated contribution to our community. Announcements and zoom links for the following month’s meetings will be emailed at the end of each month to attendees. Information is also posted in Slack. We are currently hosting a monthly meeting on Saturday at 10:30 am ET and a weekly meeting on Sunday at 5:00 pm ET. More groups will start soon.
The newsletter, which generally goes out near the middle of the month, includes links for the remaining Zoom groups for the month. For the remainder of May, the link is:
May 24, 2020 5:00 PM Eastern Time (US and Canada)
May 31, 2020 5:00 PM Eastern Time (US and Canada)
***If the link does not work, please paste the link into your browser. Once you register, you will receive both call-in and online information.***
For any questions/comments about support groups, or help with Slack or Zoom, contact Jeanne, support group coordinator, at supportgroups at massmecfs dot org. And, if you haven’t filled out our survey and would like to do so, it takes about 5 minutes. This survey helps us gauge interest in different types of groups. Thanks!
Although we are the Massachusetts ME/CFS & FM Association, we have a large number of members and friends from outside Massachusetts – other states in the U.S., as well as other countries. Since many of you live in states close to MA, we decided to offer a special opportunity for you to get to know one another. These meetings will focus on how our activities can touch our members and friends beyond Massachusetts, and everyone is welcome.
We will host Zoom gatherings for Northern New England (ME, NH, VT) and for Southern New England (RI, CT) and New York at the end of May. If you live in one of these states, you are specially invited! If you live anywhere, and you haven’t yet attended one of the group get-acquainted sessions and would like to do so, you are also invited to come to either one of these meetings.
Here are the links to register:
Friday, May 29 4 -5 p.m., Northern NE (ME, NH, VT) but open to anyone
Sunday, May 31, 2-3 p.m., Southern NE (RI, CT) and NY but open to anyone
We’ll do brief introductions, hear a short presentation on the new MassME strategic plan, and have time for questions and general discussion.
Our very own Charmian Proskauer, Past President and current Board Member, was featured on the April 23, 2020 issue of the White House Chronicle, Llewellyn King's weekly PBS program about news and public affairs. Charmian's interview begins around minute 17 and she talks about our association's efforts to help people with ME/CFS & FM during the COVID-19 pandemic.
Can you help with our activities? Join us to provide patient services, or update our social media, or plan our next event, or advocate for more research funding, among many projects. Join our next volunteer phone call on Saturday, June 20th 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 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