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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
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
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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.