- Details
- Last Updated: 25 March 2025 25 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.
Register for the April 27 Sunday Conversations
About the presenter, Sallie Rediske, MPT:
Following a high fever sustained at eight years old, I developed symptoms of ME/CFS. I was plagued by frequent infections, chronic headaches, gastrointestinal problems, and worsening fatigue, among other symptoms. Despite supportive parents, I was repeatedly marginalized by medical providers who, for the first fifteen years of my illness, incorrectly applied psychological diagnoses to the complex array of symptoms. These repeated misdiagnoses were in spite of no improvement in any of my symptoms throughout the years from the interventions used for these incorrect diagnoses. Notwithstanding setbacks and challenges, I was able to graduate from the Master of Physical Therapy program at Old Dominion University in Norfolk, Virginia in 1998. Twenty-five years after becoming ill, I was finally diagnosed with CFS in 2001.
From 2003 until 2018, I owned a private practice physical therapy clinic in Homer, Alaska. Until 2016, I specialized in working with people who, like me, lacked appropriate healthcare support for their multifaceted needs. Most of my clients were joint hypermobile or met the diagnostic criteria for hEDS. This impacted how they moved in space, tolerated exercise, and recovered, all of which was independent of whether they had the additional burden of ME/CFS or other challenging diagnoses In 2013, I became nationally board certified in Women's Health Physical Therapy, working with both women and men, to more effectively address the complicated interrelationship of chronic pelvic pain and sexual dysfunction to these complex illnesses.
In 2016, amid a non-resolving crash, I sought objective confirmation of my situation through a two-day CPET. I was strongly advised to quit work immediately given the test findings. My experiences in healthcare have been informed not only by my interest in quality scientific research, how this information gets transmitted, social justice, and by my near-lifetime experience of living with the challenges of ME/CFS and other comorbid conditions including mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS), chronic migraine, CCI/AAI (craniocervical instability/atlantoaxial instability), Chiari type I Malformation, May-Thurner Syndrome, occult tethered cord syndrome, and idiopathic intracranial hypertension.
I live in Homer with my spouse and my two elderly rescue dogs.