We knew this was coming. So many people with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), develop the disease after an infection, up to 80% in fact, and evidence is mounting that a significant percentage of individuals will go on to develop ME after having COVID-19. Some viral infections have triggered ME at a rate of 10-12%, and other coronaviruses have led to even higher rates of ME.
Viral infection leading to ME is nothing new, and we warned our governments that they would face a wave of people with new and worsened chronic illness post-COVID-19. Yet our governmental institutions have failed to adequately educate clinicians about the dangers of overexertion and exercise in for ME, which has shown to worsen the health of people with ME.
We must mobilize to help these people with long COVID who are showing symptoms of ME get the care they need from the beginning. We know the harm that has been done to the ME community. Now, let us use our voices to protect others.
Unfortunately, many people with long COVID are being encouraged to exercise and get back to work. The truth is everyone should be resting after such a severe illness, but particularly those individuals that experience post-exertional malaise or PEM (a worsening of symptoms after exertion, often delayed) should be pacing, and every doctor should be telling them to do so.
Join the #MEAction Long COVID-19 Group here.