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

U.S. Congressmen Visit ME/CFS/Long Covid Researchers at UMass Chan Medical School

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Last Updated: 09 June 2022 09 June 2022

Congressmen Jim McGovern (D-Massachusetts) and Jamie Raskin (D-Maryland) visited with researchers studying ME/CFS (myaglic encephalomyelitis/chronic fatigue syndrome) and Long Covid (LC) at the University of Massachusetts Chan Medical School in Worcester, Massachusetts on June 1, 2022.

This exciting visit was organized by the Selin Lab at UMass and ME advocate Rivka Solomon, in conjunction with the Massachusetts ME/CFS & FM Association. Fourteen people attended this private meeting, both virtually and in-person.

Read more: U.S. Congressmen Visit ME/CFS/Long Covid Researchers at UMass Chan Medical School

Sunday Conversations - February 19, 2023

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Last Updated: 28 February 2023 28 February 2023

Pacing for PEM: An OT and PT perspective on what it is and how you can use pacing strategies in your daily life

Sunday, February 19, 2023, 4 p.m. EST

Amy Mooney, MS OTR/L

Sallie Rediske, MPT

Melinda Maxwell, PT

Amy Mooney, MS OTR/L, joined us to present an occupational therapist's perspective of pacing for PEM. Amy described the essential strategies of pacing for PEM and created a framework to analyze activity and tasks within the limitations of PEM. Offering the physical therapist perspective, Melinda Maxwell and Sallie Rediske discussed physiological biofeedback strategies of pacing. This OT/PT team offered examples of how the pacing for PEM framework can support pwME and Long COVID as they engage in redefined meaningful and purposeful activities of daily living.

Following the discussion, the panelists responded to questions from the audience. The entire program lasted about 90 minutes.

Materials from the presentation:

• Amy Mooney slides: Pacing for PEM: An OT and PT perspective on what it is and how you can use pacing strategies in your daily life
• Sallie Rediske and Melinda Maxwell slides: Whispers vs. Screams: Listening with Heart Rate Biofeedback Pacing for ME/CFS
• Full video: https://www.youtube.com/watch?v=62mIuvabII0 (This version contains chapter headings for easier viewing)

Read more: Sunday Conversations - February 19, 2023

NEW Art Therapy Group

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Last Updated: 01 March 2022 01 March 2022

Join us for a series of 5 bi-weekly art therapy classes featuring various creative exercises led by expressive art therapist, Kerry Lang, LMHC.  Kerry is a MA Licensed Mental Health Counselor with years of experience leading groups and workshops for those with chronic illness, specifically those with Lyme disease, and more recently Long-COVID and ME/CFS.

These 90-minute sessions will be a mix of fun, creativity, connection, vulnerability, and exploration. No experience with the arts is necessary- we welcome all levels of creative experience!

The group will meet on Zoom every other Thursday from 2:30 - 4:00 P.M.

The first session is Thursday, March 24th.

*Registration is open through March 14 for MassME members. Professional licensing requirements constrain us to offering this program to MA residents only. Class size is limited to 12 participants.  There is a $20 suggested donation to cover materials.

Click here for full details and registration information

Sunday Conversations - January 22, 2023

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Last Updated: 28 January 2023 28 January 2023

Selected readings from The Long Haul, with Ryan Prior and Cynthia Adinig

Sunday, January 22, 2023, 4 p.m. EST

Thank you for joining us as journalist and ME patient Ryan Prior read excerpts from his new book, The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever, released November 2022 by Post Hill Press. He was joined by marketing specialist and Long COVID advocate Cynthia Adinig, whose experiences obtaining treatment are discussed in the book. Rivka Solomon, long-time ME/LC advocate and MassME member, hosted the meeting.

Following the readings, Ryan and Cynthia responded to questions and comments from Rivka and from the audience. The entire program lasted about 75 minutes.

Click here to view a recording of the presentation.

Read more: Sunday Conversations - January 22, 2023