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.

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!

Sunday Conversations with MassME

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Last Updated: 01 May 2024 01 May 2024

A monthly speaker series
3rd Sunday of each month at 4 p.m. ET
Free and open to everyone

“Sunday Conversations with MassME” is a monthly speaker series with discussion on a wide variety of topics. These sessions are appropriate for patients, family members/caregivers, and health care professionals. Sunday Conversations take place via Zoom on the 3rd Sunday of each month at 4 p.m. ET, and are free and open to anyone. Presentations are recorded for later viewing. Registration is required.

Sunday Conversation for May:

Sunday, May 19, 2024, 4 p.m. ET - "Are You M.A.D.?
An axis awry of
Mast cell activation disease,
Autonomic neuropathy and
Disorders of connective tissue"

Dr. Anne Maitland

 Anne Maitland, M.D., Ph.D., is board-certified in allergy & immunology and internal medicine. As an allergy/immunology specialist at Metrodora Institute, Dr. Maitland’s clinical and research efforts are focused on increasing access to allergy and immunology specialty care. She is also one of the country’s top experts in immune-mediated disorders, including mast cell disease (MCD). She also serves on the scientific faculty for the Mast Cell Disease Society, the Ehlers-Danlos Society’s International Consortium and the Chiari-Syringomyelia Foundation.  Read more about this event.

REGISTER NOW

Links to recordings, slides, and other resources from past events:

• "Got Mold? How Our Homes Impact Our Health",  with Michael Rubino, April 21, 2024
  
  
• "Dysautonomias 101: More Than Just POTS",  March 17, 2024

• "Living with co-morbidities or other serious illnesses: Small Group Discussions" February 18, 2024. This event was not recorded.

• "It's Not All In Your Head" with Judy Tsafrir, M.D., January 21, 2024
   
• "What Sociology and the Illness Narratives Can Teach Us About Living with Chronic Illness" November 19, 2023
• "Living with Chronic Illness: Small Group Discussions" August 20, 2023. This event was not recorded.
  
  
• "Zoom through 40 years of ME/CFS history with MassME" June 18, 2023
• "Using wearable technology to measure and manage Long COVID and ME/CFS".  May 21, 2023
• "What Every Provider Should Know About ME/CFS (and how their patients can help them learn)" April 16, 2023
• "The Broken Mishkan: Performance and Community Conversation" with Sara Nesson" March 19, 2023. A recording will be made available to registrants for a limited time after the performance.
• "Pacing for PEM: An OT and PT perspective on what it is and how you can use pacing strategies in your daily life" February 19, 2023.
• "Selected readings from The Long Haul, with Ryan Prior and Cynthia Adinig" January 22, 2023.
• "Coping During the Holidays with ME/CFS, Long COVID, and Related Chronic Illness" November 20, 2022. This was a small group conversation event and was not recorded.
• There was no Sunday Converstion in October. At our Annual Meeting on October 22, Dr. Anthony Komaroff presented "MECFS and Long COVID: Emerging Similarities and Why it Matters". For full coverage of the meeting, visit our Youtube playlist.
• "How Those Living with Long Covid and ME/CFS can Enhance Their Quality of Life by Integrating Traditional Chinese Medicine Into Their Healthcare Plan" September 18, 2022
• Sunday Conversations: Special Edition - August 21, 2022 Small group conversations about a variety of topics. This program was not recorded.
• "A whole-person health approach to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Lessons for Post-COVID conditions."  June 19, 2022
• "Fibromyalgia" May 15, 2022
• "Working with Your Healthcare Provider" April 24, 2022
• "A Functional Medicine Approach to Complex Chronic Illnesses" March 20, 2022
• "Applying for Social Security Disability if you have ME/CFS or Fibromyalgia" February 20 2022
• "Physical and Occupational Therapy for ME/CFS and Similar Chronic Illnesses" January 16, 2022

Click to see all events in a list format.

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

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.