Currently, there is no cure for ME/CFS and Long COVID and there is no evidence-based treatments that are proven to be effective. The goal of treatment is to improve a patient’s quality of life and to provide relief from symptoms.
The central feature of ME/CFS and a common symptom of Long COVID is post-exertional malaise (PEM) and both patient groups would benefit from adopting a stop, rest, pace approach to minimise PEM.
In addition, working with your doctor to implement stepwise symptom management, which aims to provide symptom relief for your worst symptoms first, is recommended.
Patients may find they benefit from psychological support, to help manage emotions related to living with a debilitating chronic condition and uncertain recovery.
Psychological treatment is not a cure, but additional emotional support can improve quality of life.
View the pages below for information and support on each of the key management strategies for ME/CFS.
Stop, Rest, Pace
People with ME/CFS and Long COVID are not able to do all of the activities they used to be able to do. We experience an increase in symptoms after simple activities that would not have been a problem before ME/CFS or Long COVID came into our lives.
Stepwise Symptom Management
While pacing and rest are self-management approaches, doctors and healthcare practitioners can help with stepwise symptom management.
Preparing information for your doctor
Many symptoms of ME/CFS can make communicating difficult. Some people who live with ME/CFS report that at times they struggle to recall information, lose their train of thought easily and find comprehending and processing new information difficult.
Living with Severe ME/CFS
Anil van der Zee lives with severe ME and has given permission for Emerge Australia to share his lived experience. Anil van der Zee May 1, 2023 Before this year, I was too ill for approximately five years, which prevented me from even thinking about anything related to dancing. A mixture of it being
Building your healthcare team
To manage your ME/CFS well, you will need a number of different healthcare professionals to help you deal with your ME/CFS symptoms and any other health conditions you may have.
Many doctors and other healthcare professionals do not specialise in ME/CFS, but they can play a valuable part in your care and health management.
Advanced Care Planning with ME/CFS
Advance care planning promotes care that is consistent with a person’s goals, values, beliefs and preferences. It prepares the person and others to plan for future health care, for a time when the person may no longer be able to communicate those decisions themselves.