Sunday Conversations

Sunday Conversations - June 18, 2023

Details: 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)

Sunday Conversations - May 21, 2023

Details: 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

Slides

Sunday Conversations - April 16, 2023

Details: Last Updated: 24 May 2023 24 May 2023

"What Every Provider Should Know About ME/CFS (and how their patients can help them learn)"

Sunday, April 16, 2023, 4 p.m. Eastern Time

Howard Andrew Selinger, M.D.
Chair, Dept. of Family Medicine
Frank H. Netter School of Medicine at Quinnipiac University

In a combination presentation and interview, Dr. Selinger will talk about how he teaches medical students about ME/CFS, and present the key facts he would like all providers to know. He will also address the challenges of patients face if their providers are not well-informed about ME/CFS. This program is also relevant to other conditions with symptoms similar to ME/CFS.

Recording and other resources

Recording of the event (includes a link to the Golden Girls clip)
Slides from the presentation
C W Lapp, 2019, Initiating Care of a Patient With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Diagnostic algorithm for ME/CFS, 2015 from the 2015 Institute of Medicine (now National Academy of Medicine)
B M Carruthers, et al., 2011, Myalgic encephalomyelitis: International Consensus Criteria
L. Bateman, et al., 2021, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management

Sunday Conversations - March 19, 2023

Details: Last Updated: 22 March 2023 22 March 2023

"The Broken Mishkan: Performance and Community Conversation with Sara Nesson"

Sunday, March 19, 2023, 4 p.m. EST

Mishkan is Hebrew for “sacred space.” The Broken Mishkan is a 23-minute theatrical work that follows author Sara Nesson’s compelling journey toward wholeness after being diagnosed with ME/CFS. From swimming New Hampshire lakes to chanting psalms with nuns in a California forest, in a story spiced with humor and Jewish mysticism, Sara celebrates the poignant connections between art, healing, wilderness, and blessing.