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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
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
MassME Letter to NIH RECOVER Clinical Trials
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- Last Updated: 07 April 2023 07 April 2023
RECOVER_Trial_letter_re__PEM.pdf
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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.