In this month's newsletter: video of a Round Table with Senator Ed Markey, announcing a Congressional Briefing, a limited number of free IACFS/ME 2020 Conference registrations for our members, some important new publications, a volunteer spotlight, and support groups. Read on for details.
MassME Advocates Rivka Solomon, Claudia Carrera and Jemel Aguilar, plus Advocate Ashanti Daniel, sat down with Senator Ed Markey on July 23, 2020 to discuss ME/CFS Health Justice. They talked about the impact of ME/CFS on their lives, the need for more research funding and more knowledgeable clinicians, and the terrifying surge in survivors of COVID-19 displaying ME/CFS-like symptoms. Watch the video here.
The Bipartisan Congressional Women’s Caucus is hosting a virtual public Round Table on COVID-19 and Women’s Health, focusing on ME/CFS and Migraine, this Wednesday, August 12th at 2:30 PM EDT. The event will be moderated by Jedediah Bila, two-time Emmy-nominated TV co-host of FOX News Channel's FOX & Friends Weekend. Register here.
We are offering 20 free registrations to the IACFS/ME Conference (Friday, August 21, 10 AM - 3:30 PM EDT) to our members who might find the $50 registration fee a financial hardship. This offer is first-come, first-serve and on the honor system for financial need. Please send an email to membership at massmecfs dot org if you are interested. If you have already registered for the conference, send a copy of the confirmation. If you are not already a member, join now! (Receiving this newsletter does not automatically make you a member of the Association.)
Special Issue of Work: The journal Work has published a special issue focused on ME/CFS that features research, recommendations and commentary on how the disease impacts people and their ability to function. The special issue was edited by Amy Mooney, MS OTR/L. Authors and co-authors include well-known researchers, clinicians and advocates. It's very exciting to see a special issue devoted to ME/CFS.
Updated Clinician Coalition Handout: The US ME/CFS Clinician Coalition has released an updated version of their handout on the basics of diagnosing and treating ME/CFS. This is similar to the previous version, but includes more detail on the symptoms, a cleaned up list of alternative diagnoses and co-morbidities, and some additional references including the ME-ICC. The goal of the handout is to provide a concise, easily digestible summary of the most important information about ME/CFS in order to help clinicians diagnose and manage the disease.
This month, we want to highlight our long-time volunteer, Kathy Robitaille! Kathy lives in Wrentham and is a retired radiologic and mammography technologist. Her daughter Robie has ME/CFS, and Kathy and her husband Bob (also one of our wonderful volunteers!) live with Robie and assist her in managing her ME/CFS. Kathy was inspired to work with the Association after attending a support group meeting run by Association leaders.
For the past three years, Kathy has been our Patient Services Coordinator, fielding dozens of requests for doctor referrals and other needed services. She recently stepped down from that role and will be focusing on other Association projects. In her free time, Kathy enjoys gardening, hiking, and playing golf. We can’t express how much we appreciate all of Kathy’s time and dedication to our community!
Research Club: Sunday, August 23rd, 5:00 PM (EDT)
Roshan Kumar, PhD in biochemistry, will summarize the research presented at the IACFS/ME Conference two days earlier. Please register in advance. After registering, you will receive a confirmation email containing information about joining the meeting.
Open Discussion Support Groups: Saturday, August 15th, 10:30 AM and Sunday, August 16th, 5:00 PM (EDT)
Join us for open discussion. Please register here for the Saturday meeting and/or here for the Sunday meeting, After registering, you will receive a confirmation email containing information about joining the meeting.
New! Do-It-Yourself (DIY) Support Group: Sunday, August 30th, 5:00 PM (EDT)
This is the first in a four-part series, presented by a person with ME/CFS, on navigating tests and treatments, and on how to work with doctors to get help. A variety of tools will be shared in monthly zoom meetings and on Slack in the new #support-health-diy channel where we welcome discussion. Please register here.
Questions? Comments? Need assistance? Email Jeanne Perrin, Support Group Coordinator, at supportgroups at massmecfs dot org or Direct Message (DM) her on Slack.
We need your help to provide patient services, update our social media, plan our next event, and advocate for more research funding, among many projects. Join our next volunteer phone call on Saturday, September 12th at 12 noon (Video and audio: https://zoom.us/j/395006189; Audio only:+1 720 707 2699 US, Meeting ID: 395 006 189). Or get in touch 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