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

Slides

2023 Health Needs Assessment Community Listening Forum

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Last Updated: 01 April 2023 01 April 2023

The Massachusetts Department of Public Health wants to hear from people in Massachusetts about the health care needs of disabled people in the Commonwealth to inform future initiatives. MassME wants to make sure that people who are disabled by complex, chronic illnesses such as ME/CFS, Long COVID, post-treatment Lyme, multiple chemical sensitivities, etc., and those with disabling symptoms such as dysautonomia, cognitive impairment ("brain fog"), etc., are able to have their voices heard.

We are holding two discussion sessions for small groups of 10-12 people, the first on Thursday April 20 at noon ET, and the second on Tuesday May 2 at noon ET. If you are a person who has become disabled due to one of these conditions, or a caregiver, we invite you to participate. Registration will be capped at 16 for each session, so if you are interested, we encourage you to register soon.

Register for the Thursday, April 20, session
Register for the Tuesday, May 2, session

Read more: 2023 Health Needs Assessment Community Listening Forum

Sunday Conversations - April 16, 2023

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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

Read more: Sunday Conversations - April 16, 2023

Sunday Conversations - March 19, 2023

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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.

Read more: Sunday Conversations - March 19, 2023