ME/CFS: Changing the Narrative - Recording Available

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Last Updated: 03 November 2023 03 November 2023

Ed Yong is a celebrated science journalist who cares deeply about accurate, nuanced, and empathetic reporting; clear and vivid storytelling; and social equality. His coverage of ME/CFS and Long COVID for The Atlantic has been groundbreaking, and has contributed to a changing public perception of these illnesses, moving us toward a public health agenda that recognizes the serious nature and commonalities of infection-associated chronic conditions, and supports advances in research and clinical care.

Mr. Yong shared with us how he came to the subject of ME/CFS and long COVID and what has motivated him to dig so deeply and tenaciously into them.  He explained how he chose sources to interview and how he prepares for those interviews.  We heard his thoughts on what is yet to be explored about ME/CFS from a journalistic perspective, and how science journalism contributes to changing perceptions.  

Mr. Yong is a Pulitzer Prize-winning science journalist on staff at The Atlantic.  In addition to his work for The Atlantic, Yong’s writing has been featured in National Geographic, The New Yorker, Wired, The New York Times, Nature, New Scientist and Scientific American.   He is the author of two New York Times bestsellers—An Immense World, about the extraordinary sensory worlds of other animals; and I Contain Multitudes, about the amazing partnerships between animals and microbes.  

Visit Ed Yong's website to learn more and sign up for his newsletter.

This event was part of the Association's 2023 Annual Meeting of the Membership.

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Sunday Conversations - September 17, 2023

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Last Updated: 13 September 2023 13 September 2023

CANCELLED !! (as of 9/13)

"Understanding Long COVID: Clinical Approaches and Relationship to ME/CFS"

Sunday, September 17, 2023, 4 p.m. Eastern Time

Jason Maley, MD
Program Director, Critical Illness and COVID-19 Survivorship Program

In this edition of Sunday Conversations with MassME, Jason Maley will discuss what is known to date about the biology of long COVID, the approaches taken in caring for long COVID care in existing clinics, and what is known about the overlap between ME/CFS and long COVID. A recording will be available after the event.

Jason Maley is an Assistant Professor of Medicine at Harvard Medical School and is a Lecturer at the Massachusetts Institute of Technology. He works as a pulmonary and critical care physician and is director of the Critical Illness and COVID-19 Survivorship Program at Beth Israel Deaconess Medical Center in Boston.

The Critical Illness and COVID-19 Survivorship Program was launched in 2021 and is one of only a few in the country to integrate a broad multi-disciplinary team of medical experts to treat patients with persistent symptoms, which are also described as "long-COVID" or "post-acute sequelae of COVID-19 (PASC)." The program is open to anyone experiencing long-COVID symptoms regardless of where they were treated for their initial COVID-19 illness. Patients are initially scheduled for a telehealth visit, and eventually an individual plan is developed for each baptient based on their main deficiencies. More information can be found at the program website at https://www.bidmc.org/centers-and-departments/pulmonary-critical-care-and-sleep-medicine/services-and-programs/critical-illness-survivorship-program

This event has been cancelled due to a conflict. There will be no Sunday conversations on Sunday 9/17. Please stay posted for an updated date for Dr. Maley's presentation!

Living with Chronic Illness: Sunday Conversations - August 20, 2023

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Last Updated: 30 August 2023 30 August 2023

 
Join MassME for an August Sunday Conversation! We are looking forward to meeting you on Zoom. Summer is a time for informal gatherings and socializing. Let's get to know one another, and have a chance to ask questions and share experiences!

After a brief welcome and introduction, we will gather together in small groups for moderated conversations about two topics of interest to our community.

• “Living with chronic illness: How to you find meaning in your life?”
• “Pacing: Personal approaches and what works for you?”

When you register, you can select which topic that you would like to explore with others. All are welcome - come to learn, share or just listen.

Based on your previous feedback, we will allow 40-45 minutes for a group discussion on your chosen topic. We'll return to the full group for a brief "de-brief" before signing off.

This is a live event via Zoom. It will not be recorded.

Living with Chronic Illness
Sunday, August 20, 2023
4 - 5 p.m. Eastern Time

This event is over. 

Young Adult Support Group for those with ME/CFS, FM, Lyme, Long COVID, and Chronic Illness - Summer Session

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Last Updated: 04 June 2023 04 June 2023

Young Adult Support Group for those with ME/CFS, FM, Lyme, Long COVID, and Chronic Illness - Summer Session

NEW TIMES! Join us on Monday nights @ 7pm and Wednesday afternoons @ 3:30pm! 

This drop-in Virtual Support Group is interactive and provides a safe space for patients to share stories and experiences, ask questions, and offer one another support.

In an effort to streamline the registration process, we are offering one registration for the entire Summer Session.  Once registered, you are welcome to attend as many meetings as you like.

Summer Session Dates:

Monday, June 12th, @ 7:00 P.M. ET 

Wednesday, June 28th @ 3:30 P.M. ET

Monday, July 10th, @ 7:00 P.M. ET 

Wednesday, July 26th @ 3:30 P.M. ET

Monday, August 14th, @ 7:00 P.M. ET 

Wednesday, August 30th @ 3:30 P.M. ET

Please Note: Due to professional licensing issues, you must be a Massachusetts resident to attend this group.