In this month's newsletter, an announcement about new MassME/CFS & FM groups, information about Advocacy Day (April 21, now virtual) and Millions Missing (May 12, now virtual), a survey on durable medical equipment from BCIL, an opportunity to tell your story to American Portrait 2020, and some information resources about coronavirus. Read on for all the details.
We now offer two new online support groups, using Slack, a web-based chat platform:
We will soon be launching two other support groups, using Slack and live, virtual meetings on Zoom:
Training and guidance will be available for learning how to use Slack and Zoom. To participate in any of these groups, please email supportgroups at massmecfs dot org.
If you have not yet filled out our survey about new groups, please take a few minutes to do so. Thanks!
You are invited to a small group online meeting with some of your neighbors! Although these are online meetings, we hope you will choose one near where you live so you can get to know and chat with people who live in your area, much as you would if the gatherings were in person. We were planning these gatherings of neighbors before the coronavirus hit, and we think it's even more important now to interact with others, especially those who face some of the same challenges that we do.
So let's get together for an hour of restful conversation! There will be time to introduce ourselves, talk about what's on our minds, and see a brief presentation from MassME/CFS & FM about our new plans to support you better, and get your feedback. There's also some information about our Community Day in late October in partnership with the Open Medicine Foundation, which we are hoping will be an actual in-person gathering.
Watch for an email in a week or so that will announce the meetings and provide details on how to register.
The 2020 National Solve M.E. Advocacy Summit in Washington DC, sponsored by Solve ME/CFS Initiative (SMCI), is moving online due to the coronavirus outbreak. The main event, ME/CFS Advocacy Day on Capitol Hill, will still take place on Tuesday, April 21, 2020 via online and phone connections. If you already registered for Advocacy Day in Washington DC, you will need to re-register here by March 27th. And if you were not able to travel, you can now participate remotely. Please register today. Advocacy training will also be online -- check the SMCI Advocacy 2020 website for updates. Please let us know at advocacy at massmecfs dot org if you register. We want to have a big showing for a small state again this year -- last year we visited all 11 offices in our congressional delegation. We are still looking for constituents of US Representatives Neal, Moulton, Keating or Trahan to join us on April 21!
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. Or join our next volunteer phone call on Saturday, April 18th at 12 noon (Video & audio: https://zoom.us/j/395006189; Audio only:+1 720 707 2699 US, Meeting ID: 395 006 189).
From Eviva Kahne at the Boston Center for Independent Living (BCIL): BCIL and the Disability Policy Consortium are starting a grassroots campaign to improve consumer experience with Durable Medical Equipment (DME). DME includes any equipment used in daily life and independence. We are particularly focused on wheelchairs and absorbency products; however, if you use any DME, we want to hear from you! This includes wheelchairs but also walkers, hospital beds, commodes, shower chairs, nebulizers, absorbency products, etc. MassHealth is setting up two committees to address problems with DME. Our next step is to talk to people from the community, hear their stories, and organize for a system that actually works for consumers. The interview and discussion would take between 30 minutes and an hour. Any and all information can remain anonymous, if you’d like, and we only want you to share as much as you feel comfortable sharing.
Please call 617-338-6665 ext.270 or email ekahne at bostoncil dot org if you are interested in being interviewed or involved, or if you have any questions.
World-renowned documentary filmmaker Ken Burns wants you to be a part of PBS American Portrait 2020. PBS American Portrait is asking you, and people all over the country, to submit your individual stories by responding to one of a number of thought provoking prompts. Prompts include "Most days I feel...", "I never expected...", "My greatest challenge is..." and "You don't know what it's like to..." We can all finish those prompts with stories that need to be heard.
Sensible advice from Jenni Spotila about A New Virus and ME.
Advice from Dr. Asaf Bitton, executive director of Ariadne Labs, on social distancing to keep yourself and others safe.
Can you help with our activities? Join us to plan the Millions Missing event, or provide patient services, or update our social media, among many projects. Join our next volunteer phone call on Saturday, April 18th 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.
Leah Williams, Association President