Sunday Conversations

Sunday Conversations - April 2025

Details: Last Updated: 16 March 2025 16 March 2025

"Twisted Connections: The Dynamic Relationship of ME/CFS and Hypermobile Ehlers-Danlos Syndrome"

Sunday, April 27, 2025, 4 p.m. Eastern Time

Sallie Rediske, MPT

In this edition of Sunday Conversations, the increasingly recognized "twisted connections" between ME/CFS and hypermobile Ehlers-Danlos will be discussed. Sallie Rediske, MPT (Master of Physical Therapy) will offer a casual yet informed understanding of the challenges of simultaneously living with and managing both conditions.

For those who work with or are primarily familiar with hEDS, fatigue is often misunderstood as the main symptom of ME/CFS rather than the even more multifaceted post-exertional malaise (PEM). When "chronic fatigue" is misrepresented as synonymous with this hallmark feature of ME/CFS, inappropriate and harmful management strategies are recommended, including graded exercise therapy and cognitive behavioral therapy. But how does a person with both of these navigate the healthcare landscape when information is often conflicting and expertise is limited?

This presentation will provide you with some direction! Sallie will explain the similarities and differences in the definitions of fatigue relative to ME/CFS and hEDS and why understanding this matters. She will share how understanding PEM is paramount for the person living with simultaneously occurring ME/CFS and hEDS and is necessary to manage both diagnoses. She will share biomechanical strategies, adaptive devices, and modifications that most people living with ME/CFS and hEDS can use daily to optimize their function and quality of life. The focus will be on simple things people can implement at home with little expense. Sallie will also discuss specialized situations that disproportionately impact people with hEDS, such as CCI/AAI (craniocervical instability/atlantoaxial instability) and occult tethered cord within this context. A recording will be available after the event.

Sunday Conversations - January 19, 2025

Details: Last Updated: 01 January 2025 01 January 2025

Sunday Conversations has a new schedule in 2025

Events will be held every other month (starting in January)
Some months will have guest speakers.
Others will be community conversations about a topic important to the community

“Going into the new year, what are your hopes and dreams?”

A community conversation focusing on positive visions for the coming year.

Sunday, January 19, 2025, 4 p.m. Eastern Time

Join with others to generate a positive outlook for the future. Hopes are always with us; dreams can be for things big or small. Hopes and dreams can bring us joy. Let’s imagine together and be inspired!

Sunday Conversations - November 2024

Details: Last Updated: 30 December 2024 30 December 2024

“Your Doctors are Human Beings, Too!”

Sunday, November 17, 2024, 4 p.m. Eastern Time

Ruth H. Axelrod, MHSA, PhD

You may find it easy or challenging to relate to each of your doctors and other providers in ways that help you get what you need from them. Both doctor and patient contribute to that relationship, usually in different ways, based on our personalities, roles and expectations. This presentation and discussion aimed to offer you some tools that can help make that relationship both effective and fulfilling. The discussion was led by Ruth Axelrod, who drew on her career in healthcare and academia, as well as her personal health journey, to facilitate conversation.

Sunday Conversations - September 15, 2024

Details: Last Updated: 19 September 2024 19 September 2024

Dr. Jill Crista Answers Your Questions About Mold

Sunday, September 15, 2024, 4 p.m. Eastern Time

Dr. Jill Crista is a pioneering Naturopathic Doctor and renowned educator on complex chronic illnesses including mold sickness, Lyme disease, post-concussion syndrome, and PANDAS and PANS. She's the author of the highly acclaimed best-seller, Break The Mold: 5 Tools To Conquer Mold and Take Back Your Health.

Dr. Jill spent an hour with us answering our questions about mold illness: diagnosis/symptoms, treatments, and relation to ME/CFS.