Association News & Events
Sunday Conversations - June 18, 2023
- Details
- Last Updated: 25 July 2023 25 July 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
- 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
2023 Health Needs Assessment Community Listening Forum
- Details
- 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
- 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
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