Sunday Conversations - April 16, 2023

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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

Howard Andrew Selinger, M.D.
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

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

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

February Young Adult Support Groups

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Last Updated: 27 January 2023 27 January 2023

Young Adult Support Group for those with ME/CFS, FM, Lyme, Long Covid, and Chronic Illness

Tuesday, February 7th, at 3:30 P.M. ET

Saturday, February 18th, at 10:30 A.M. ET

Please Note: The meeting on Saturday, January 28th has been rescheduled to Saturday, February 4th at 10:30 A.M. ET.  
If you are already registered, there is no need to take action, we will send you the updated Zoom link.
If you would like to join the meeting on February 4th, click here.

These drop-in Zoom Support Groups are interactive and provide a safe space for patients to share stories and experiences, ask questions, and offer one another support.

The groups are run by Kerry Lang, LMHC. Kerry is a MA licensed mental health counselor with experience leading groups and workshops for those with chronic illness, specifically those with Lyme disease, and more recently Long COVID and ME/CFS.

Please Note: Due to professional licensing requirements, we are only able to offer this program to Massachusetts residents.

What age is considered Young Adult?
Anyone over the age of 18 who self-identifies as a young adult, either through age or via the life challenges typically experienced by this population. Relevant topics of this group are challenges with college/higher education, starting a career, housing challenges, dating and/or starting a family, and social challenges.

You are welcome to register for one or both sessions. These groups are free for members, with any donations to offset costs welcome. We ask non-members to contribute a $10 fee for each session. A contribution of $25 or more will include annual membership.

REGISTER FOR THE FEBRUARY 7th YOUNG ADULT GROUP

REGISTER FOR THE FEBRUARY 18th YOUNG ADULT GROUP