The first principle of helping patients manage Long COVID, and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), should be to “do no harm”. Patients and healthcare workers have tried to speed up recovery from Long COVID with exercise-based rehabilitation. However, the authors state this approach has made many patients worse. Instead, healthcare workers should approach activity by encouraging them to STOP pushing their limits; REST before they feel symptoms and PACE their daily mental and physical activities.  

The authors note lessons for safe management of Long COVID can be learnt from ME/CFS. This is because ME/CFS shares many similar symptoms with Long COVID.  One common symptom is post-exertional malaise (PEM). PEM is the hallmark symptom of ME/CFS and is where symptoms get worse after minor physical or mental activity (click here to learn more about PEM). Exercise-rehabilitation has been shown to be neither safe nor effective in people with ME/CFS.  

Healthcare workers treating those with Long COVID and ME/CFS should screen and monitor for PEM. This is because continually experiencing PEM can contribute to permanent disability. Healthcare workers need to develop safe approaches to rehabilitation and accept that some people may not fully recover. In such situations, their job is to help these people adapt to their new lives with post-viral illness. 

Read the full article here:

Decary et al., “Humility and Acceptance: Working Within Our Limits with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”, Journal of Orthopaedic & Sports Physical Therapy, vol. 51, iss 5, 2021

Emerge Australia is a national organisation providing education, advocacy, research and support services for Australians living with ME/CFS. With the medical and media spotlight currently on Long COVID it is finally bringing ME/CFS out of the shadows and highlighting how proper funding and new research is decades overdue.

Emerge Australia is determined to seize this moment to help transform the lives of the estimated 250,000 Australians living with ME/CFS and other post-viral fatigue conditions. Please support our campaign, by sharing it amongst your networks to keep the conversation flowing. And if you possibly can, please make a donation to help people with a disease strikingly similar to Long COVID, expect hardly anyone has heard of it. You can keep up to date with the campaign and Emerge Australia's work by subscribing to our monthly newsletter