Sunday Conversations

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.

Sunday Conversations - February 19, 2023

Details: Last Updated: 28 February 2023 28 February 2023

Pacing for PEM: An OT and PT perspective on what it is and how you can use pacing strategies in your daily life

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

Amy Mooney, MS OTR/L

Sallie Rediske, MPT

Melinda Maxwell, PT

Amy Mooney, MS OTR/L, joined us to present an occupational therapist's perspective of pacing for PEM. Amy described the essential strategies of pacing for PEM and created a framework to analyze activity and tasks within the limitations of PEM. Offering the physical therapist perspective, Melinda Maxwell and Sallie Rediske discussed physiological biofeedback strategies of pacing. This OT/PT team offered examples of how the pacing for PEM framework can support pwME and Long COVID as they engage in redefined meaningful and purposeful activities of daily living.

Following the discussion, the panelists responded to questions from the audience. The entire program lasted about 90 minutes.

Materials from the presentation:

Amy Mooney slides: Pacing for PEM: An OT and PT perspective on what it is and how you can use pacing strategies in your daily life
Sallie Rediske and Melinda Maxwell slides: Whispers vs. Screams: Listening with Heart Rate Biofeedback Pacing for ME/CFS
Full video: https://www.youtube.com/watch?v=62mIuvabII0 (This version contains chapter headings for easier viewing)