- Last Updated: 27 May 2021 27 May 2021
In this month's newsletter:
- MEAction Chronic Disease Symptom Survey
- Media Success!
- Advocacy Day Recap
- March/April Artshare
- Essay on Music and ME
- Jazz Concert Video
- Support Groups in May
- May is International ME/CFS Awareness Month - Please Support Us
Chronic Disease Symptom Survey from MEAction
The Symptom Cluster Characterization in Complex Chronic Disease (SC4D) is a survey-based study to probe more deeply into ME/CFS, Long COVID, POTS (postural orthostatic tachycardia syndrome), hEDS (hypermobile Ehlers-Danlos syndrome), and MCAS (mast cell activation syndrome). You can sign up here to be a part of this brand new study that will give researchers and clinicians insight into complex chronic diseases. Learn more here.
MassME member Rivka Solomon had two media successes regarding ME/CFS, 1) a PBS NewsHour 4-minute video about advocating for people with chronic diseases (viewership of 1.1 million and 115k additional views afterwards on social media), and 2) a Washington Post essay about engaging with her synagogue during the pandemic. Thank you, Rivka, for your incredible advocacy and publicity skills.
Advocacy Day Recap
Solve ME/CFS Initiative organized another very successful (virtual) Advocacy Day on Capitol Hill. More than 50 pwME (people with ME) and allies from Massachusetts met with all 9 MA Congressional Representatives and both MA Senators. Thanks to everyone who shared their stories and helped raise awareness. And kudos to Solve for organizing the largest Advocacy Day so far, with more than 680 participants nationwide and more than 330 meetings. If you are interested in more advocacy actions, please contact Bob Robitaille, our Advocacy Coordinator, at advocacy at massmecfs dot org.
Check out this fantastic art by members of our community! If you would like to share an original poem, essay, photo, drawing, painting, piece of fabric art, etc., please send an email to Loryn, our Volunteer Coordinator, at volunteer at massmecfs dot org.
Essay on Music and ME
For your reading pleasure, here is a beautifully written essay by Matt Lazell-Fairman about the music of John Prine and how it has helped him accept life with ME.
In case you missed it, or just want to hear this wonderful music again, here's the link to the recording of Saturday afternoon's jazz saxophone quartet concert (you do not need a Facebook account to access this recording):
Thank you for your interest and support! And thank you to the New View Saxophone Quartet for providing this gift of music for us!
Support Groups on Zoom!
Housing Discussion Support Group: May 19, 2021 3:00 PM (ET). Register here: https://us02web.zoom.us/meeting/register/tZAtfuGrqT4iGND_0U5u0XYyi3znZpXCMsJy. This is a working/discussion support group. Attendees problem-solve and screen share info.
Research Club: Sunday, May 23, 2021 5:00 PM (ET). Register here: https://us02web.zoom.us/meeting/register/tZYud-6qrzwpEtG_RbFuyLAwIsNCKtOHN3m3
"Are stealth infections causing chronic illness?" The Research Club presents Steven E. Phillips, MD, a specialist in managing zoonotic infections, including Lyme, bartonellosis, babesiosis, and other vector-borne diseases. Dr. Phillips has been in private practice in CT since 1996, where he has treated more than 20,000 of the most complex patients from approximately 20 countries. Dr Phillips is a patient himself. After the presentation, there will be Q&A time.
Due to Memorial Day Weekend, there will not be a DIY (Do it Yourself) Club Support Group in May.
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!
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. Join our next volunteer meeting on Saturday, June 12 from 12 noon to 1 PM (ET). Contact Loryn, our Volunteer Coordinator, at volunteer at massmecfs dot org.
New patients have questions…long-time patients need to connect with others and learn more…applying for disability is discouraging…COVID long-haulers are reaching out...everyone needs knowledgeable doctors….
MassME has made significant investments this year in our Information and Referrals and Support Group programs. Interest and demand for these services is growing rapidly, both from within Massachusetts and from other states across the country (and even from other countries!). We are providing hundreds of individuals with services that make their everyday lives better.
We are asking now for your help to keep these programs in place and to meet the growing need. Please support this work by contributing today in honor of International ME/CFS Awareness Month – your generous gifts will ensure that we can continue to provide immediate help and hope to so many.
Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.