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This is a complex chronic condition that leaves people with the inability to recover normally following exertion resulting in extreme fatigue. This fatigue is long lasting, not proportional to recent activities and not alleviated by rest. It affects your normal functioning of daily living and can leave a person bed-bound or house-bound. ME/CFS is a biological, not psychological, illness. Its cause is unknown, but it is often triggered by an infection and is associated with changes in the nervous system, immune system, and cellular energy production. There is currently no cure, and treatment focuses on managing symptoms. While some people still call this Chronic Fatigue Syndrome (CFS), we won't be using that term. Calling it CFS minimizes the true medical severity of the illness and contributes to the disbelief and gaslighting patients often face.
COMMON SYMPTOMS
COMMON SYMPTOMS
Post-exertional malaise / Post-exertional symptom exacerbation (severe, delayed crash that occurs after even small amounts of physical, mental, or emotional effort)*
Persistent fatigue that has lasted for six months or longer
Unrefreshing sleep (not feeling rested, no matter how long they sleep) *
Cognitive impairment *
Orhtostatic intolerance (reduced cerebral blood flow when sitting or standing up which results in feeling dizzy, faint, or having an increased heart rate)
Flu like symptoms (fever, sore throat)
Muscle weakness
Muscle or joint pain
Headaches or migraines
Sensitive to sensory input
*Must be moderate-to-severe and present >50% of the time
MANAGING SYMPTOMS
MANAGING SYMPTOMS
Use Pacing to Manage Energy and Minimize Post-Exertional Malaise
What is Rest? Time for body to recharge and recover
What is Pacing? Strategy to minimize post-exertional malaise, NOT a strategy to avoid activity
Pacing & Energy Management Strategies
Spoon Theory created by American writer Christine Miserandino
Energy Envelope created by Dr. Leonard Jason
Pacing & Energy Management Tips
Watch our video or download our handout to learn about pacing and energy management
Work with an Occupational Therapist to make changes to your home, work, and daily routines to help manage energy and reduce stress on your body
Use Assistive Devices to Enhance Quality of Life
Walking Aids: canes, rollators to provide support and stability while walking
Mobility Aids: electric scooters, wheel chair to allow individuals to travel a longer distance
Bathroom Aids: grab bars, shower chairs, raised toilet seats to maintain safety and independence
Kitchen Aids: counter-height stool for seated meal prep, automated tools (like a food processor, electric can opener, or jar opener) to simplify meal prep
Assistive Technology: medication alarms and pill dosette, symptom tracking app like Visible, Cefaly neuromodulation therapy for migraine
Download our handout for more information on assistive devices
HELPFUL WEBSITES
HELPFUL WEBSITES
Bateman Horne Center https://batemanhornecenter.org/education/me-cfs/
BC Centre for Long COVID, ME/CFS, & Fibromyalgia https://bc-clmf.org/videos
Dr. Rick Arseneau on ME TV: Long COVID, ME/CFS, & Fibromyalgia in Children and Teens https://youtu.be/dpI24ZhY57M?si=ZIcM6cr5edSL8FNV
Solve ME https://solvecfs.org/
Unrest Documentary https://youtu.be/XOpyLTyVxco?si=Rhut4GzvPYojFaaV
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