Around three-quarters of people with a type of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) report some degree of persistent fatigue. Persistent or chronic fatigue is the medical term used to describe extreme tiredness or a lack of energy that prevents a person from functioning normally. Chronic is the term used when fatigue is persistent for more than six months – it may be constant, have bad days and better days, or keep recurring – all with a marked impact on a person’s quality of life.
The main symptom is tiredness, but it is much more than the normal tiredness that every person experiences. People with persistent fatigue often describe it as a total exhaustion of every muscle in their body and/or ‘brain fog’ i.e., problems with concentration, thinking, and memory.
The EDS ECHO Summit Series: Fatigue – Causes and Management is being held on October 21, 2023; a virtual event welcoming 1,130 health professionals and community members from 33 countries: Algeria, Australia, Austria, Belgium, Brazil, Canada, Chile, Colombia, Costa Rica, Ecuador, Finland, France, Germany, Iceland, Republic of Ireland, Isreal, Italy, Japan, Jordan, Luxembourg, Mexico, Netherlands, New Zealand, Norway, Poland, Portugal, Singapore, South Africa, Spain, Sweden, Switzerland, the United Kingdom, and the United States.
A comprehensive event program will include presentations on topics including:
- Causes, Assessment, and Management of Fatigue
- Pacing, Exercise, and Managing Daily Activities
- Headaches
- Dysautonomia
- Sleep Quality and Sleep Disturbance
- Nutrition and Fatigue
- Mast Cell Disorders
- Psychological Health and Fatigue
The Ehlers-Danlos Society’s EDS ECHO program supports clinicians by increasing their knowledge; helps clinicians network with each other to discuss care; improves access to care by increasing the number of experienced clinicians; and supports community advocates in raising awareness of EDS and HSD.
The EDS ECHO Summits are virtual events that share the latest research and knowledge with community members and health professionals globally, through the traditional Project ECHO® all-teach, all-learn format, and are CME-accredited. This event has been approved for up to 7.0 CME/CEU/CE credits for healthcare professionals to claim for sessions attended live.
Event recordings are also available for purchase here.
