Fiona Lowenstein writes in the Guardian of her experience of resting and pacing to recover from Long COVID and highlights the overlap with ME/CFS.
I am not the first person to remain ill after a viral infection, and I am certainly not the first person to utilize rest and pacing in my recovery. A few months after I fell ill I began to connect with people with myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), a debilitating chronic post-infectious condition that affects millions of people, but has been historically unrecognized and underfunded for research. Many people with ME/CFS swore by rest and pacing, describing its effectiveness against an ME/CFS symptom called “post-exertional malaise” (PEM), which the CDC defines as “the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks”. This described my “crashes” after hours of work at my desk, and is now an emerging hallmark symptom for many with long Covid.
Unfortunately, the importance of rest and pacing for people with ME/CFS and PEM has sometimes been downplayed in favor of more aggressive measures of supposed treatment. In 2011, a now-discredited study in the Lancet argued that a form of cognitive behavioral therapy (CBT), and what the researchers called “graded exercise therapy” (GET), were the most effective forms of treatment for ME/CFS because they forced patients to overcome a fear of exercise that the researchers argued was keeping patients ill. These claims have since been debunked, and the Centers for Disease Control and Prevention (CDC) and other health agencies have stated that ME/CFS is an illness with biomedical origins which can be made worse by exercise, rather than an illness whose supposedly psychological roots can be conquered via GET and a bastardized form of CBT.
MEA Free Long COVID / ME/CFS Booklet
This 40-page booklet shows our understanding of the presentations and management of post-COVID-19 and how best to name the various clinical presentations.