In this month's newsletter: a call to action, SMCI's new ME/CFS registry and biobank, the IACFS/ME 2020 Conference returns (virtually), a volunteer appreciation, and support groups. Read on for details.
Ask your US Representative to Co-sponsor H.R. 7057! Introduced by Rep. Jamie Raskin (D, Maryland), The Understanding COVID-19 Subsets and ME/CFS Act (H.R. 7057), will authorize a $60 million ($15 million/year over 4 years) program expansion for ME/CFS research at the National Institutes of Health (NIH) and expand public and medical ME/CFS education initiatives. You can use this form to quickly contact your Representative.
The Solve ME/CFS Initiative has opened registration for their new ME/CFS registry and biobank -- You + M.E. The goal is to develop a large global database of information about ME/CFS from the people who know the disease best - you. Currently, anyone living in the US and over the age of 18 can join the registry by providing basic information and filling out some health surveys. The registry will be open to international participants soon. Healthy controls are also needed. People with ME/CFS will receive a mobile app to track symptoms. Some participants will be asked to contribute a blood sample. The database (with de-identified data) will be available to researchers worldwide to identify sub-types, investigate causes and discover treatments.
The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) is excited to invite you to their first virtual research conference to be held on August 21, 2020 from 10 am to 3:30 pm (EDT). This Zoom-based meeting will consist of moderated one-hour sessions followed by a question- and-answer discussion (via Chat), similar to the in-person conferences. See the conference schedule here and register here. The conference will be recorded so that people unable to attend live may watch it afterwards. Attendees at IACFS/ME conferences are primarily biomedical and behavioral professionals, including clinicians, researchers and educators. People affected by ME/CFS and their supporters are also welcome to attend.
Emma is a person with ME/CFS in Cambridge and one of our wonderful volunteers! She decided to volunteer for MassME after she was able to find a doctor and get a diagnosis through the physician referral program. She is now working closely with Board member and longtime volunteer Phil Chernin to develop a survey for gathering feedback from others who have been helped by our physician referral team. Emma said, “I'm excited to be a part of that team now and potentially help others find doctors.” We are especially grateful to Emma for her willingness to jump right in to a new project. Emma is studying public health at Simmons University, and she loves dogs, especially her pup Buffy.
Research Club Support Group: Sunday, July 19th, 5:00 PM (EDT)
Roshan Kumar, PhD in biochemistry, will discuss findings published on immune system abnormalities in ME/CFS patients and take questions and comments. Background materials and slides are available on Slack in the #support-researchclub channel. Please register in advance for this meeting. After registering, you will receive a confirmation email containing information about joining the meeting.
Open Discussion Support Group: Sunday, July 26th, 5:00 PM (EDT)
Join us for open discussion. Please register in advance for each meeting, After registering, you will receive a confirmation email containing information about joining the meeting.
At the beginning of each month an email is sent with announcements and zoom links for that month's support group offerings. If you are not receiving these emails, please check your spam box for emails from supportgroups at massmecfs dot org. Information is also posted in Slack. Email Jeanne Perrin, Support Group Coordinator, supportgroups at massmecfs dot org or Direct Message (DM) her on Slack with any questions about support groups, joining our growing Slack community or Slack help.
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, July 18th at 12 noon (Video and audio: https://zoom.us/j/395006189; Audio only:+1 720 707 2699 US, Meeting ID: 395 006 189). Or let us know by responding 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