News
Video Available: Advances in our Understanding of ME/CFS
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- Last Updated: 21 November 2021 21 November 2021
We have posted the video of our 2021 Annual Meeting, Advances in our Understanding of ME/CFS and the Effects of Long COVID, featuring presentations from NIH-funded ME/CFS researchers, including Vicky Whittemore (NIH), Avi Nath (NIH), Ian Lipkin (Columbia), Derya Unutmaz (Jackson Laboratory), Maureen Hanson (Cornell), and Cindy Bateman (Bateman-Horne Center). The event drew 560 registrants from 20 countries. If you missed it live, watch it here. The 3 and a half hour event is broken into 12 segments within a video playlist to enable targeted viewing by speaker. Make sure to watch the Q&A section, as well as the 10 minute breaks which are full of relaxing music and interesting facts about ME/CFS.
Sunday Conversations - June 18, 2023
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- Last Updated: 22 November 2023 22 November 2023
"ZOOM through 40 years of ME/CFS with MassME!"
Sunday, June 18, 2023, 4 p.m. Eastern Time
In this edition of Sunday Conversations with MassME, members of the association discussed how it has stayed strong and relevant throughout 40 years. An overview was given for each of the past four decades, each bringing important changes for this misunderstood and stigmatized disease. Learn about our unique patient-led organization that has influenced progress and now helps patients more than ever.
This presentation kicked off MassME's 40-year anniversary celebration. Stay tuned for more events to follow!
Materials from the presentation:
- Slides from the presentation
- Full recording (This version contains chapter headings for easier viewing)
Read more: Sunday Conversations - June 18, 2023
February Young Adult Support Groups
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- Last Updated: 27 January 2023 27 January 2023
Young Adult Support Group for those with ME/CFS, FM, Lyme, Long Covid, and Chronic Illness
Tuesday, February 7th, at 3:30 P.M. ET
Saturday, February 18th, at 10:30 A.M. ET
Please Note: The meeting on Saturday, January 28th has been rescheduled to Saturday, February 4th at 10:30 A.M. ET.
If you are already registered, there is no need to take action, we will send you the updated Zoom link.
If you would like to join the meeting on February 4th, click here.
These drop-in Zoom Support Groups are interactive and provide a safe space for patients to share stories and experiences, ask questions, and offer one another support.
The groups are run by Kerry Lang, LMHC. Kerry is a MA licensed mental health counselor with experience leading groups and workshops for those with chronic illness, specifically those with Lyme disease, and more recently Long COVID and ME/CFS.
Please Note: Due to professional licensing requirements, we are only able to offer this program to Massachusetts residents.
What age is considered Young Adult?
Anyone over the age of 18 who self-identifies as a young adult, either through age or via the life challenges typically experienced by this population. Relevant topics of this group are challenges with college/higher education, starting a career, housing challenges, dating and/or starting a family, and social challenges.
You are welcome to register for one or both sessions. These groups are free for members, with any donations to offset costs welcome. We ask non-members to contribute a $10 fee for each session. A contribution of $25 or more will include annual membership.
REGISTER FOR THE FEBRUARY 7th YOUNG ADULT GROUP
REGISTER FOR THE FEBRUARY 18th YOUNG ADULT GROUP
Sunday Conversations - May 21, 2023
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- Last Updated: 26 May 2023 26 May 2023
"Using wearable technology to measure and manage Long COVID and ME/CFS"
Sunday, May 21, 2023, 4 p.m. Eastern Time
Harry Leeming
Co-founder and CEO, Visible
A former engineer, Harry Leeming has worked at multiple early-stage start-ups in Silicon Valley as well as in Formula 1. Harry founded the company Visible (https://www.makevisible.com/), an activity tracking platform for Long COVID and ME/CFS, as a result of his own health condition, and aims to use the platform to help increase our understanding of complex chronic illness.
In this edition of Sunday Conversations with MassME, Harry gave a brief overview of the application, with descriptions of the team, their HRV-centered philosophy, and their plans for the rollout of their own wearable device specifically for pacing and symptom tracking. He then took questions from the Zoom audience about the timeline of future releases and features, cost and geographic availability of the premium service, the potential for use in research, various user interface ideas and suggestions, and much more.
View the recording: Sunday Conversations May 2023 - Wearable technology with Harry Leeming of Visible