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

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