News
Sunday Conversations - April 2025
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- 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.
Read more: Sunday Conversations - April 2025
NEW! Gen Z & Millennial Groups Mar/Apr 2025
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- Last Updated: 07 March 2025 07 March 2025
Hey Gen Z and Millennials, we got you!
Register for one or both, the only restriction is where you live.
You must live in MA to attend the Wellness Workshop and New England for the meetup.
Click here for Wellness Workshop Details
Click here for New England Meetup Details
New England Meetup for Millennials & Gen Z Feb/Mar/Apr 2025
- Details
- Last Updated: 30 January 2025 30 January 2025
New England Meetup for Millennials & Gen Z
*Please Note: You must be a resident of Massachusetts, Maine, New Hampshire, Vermont, Rhode Island, or Connecticut to attend this group.
There is one registration for all three sessions.
Wednesday, February 26th from 2:00-3:30pm ET
Wednesday, March 19th from 2:00-3:30pm ET
Wednesday, April 30th from 2:00-3:30pm ET
Group leader: Kerry Lang
This group is free for members, with any donations to offset costs welcome. A contribution of $40 or more will include annual membership.
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.