Stop. Rest. Pace. - New global information campaign around Long Covid, ME, and PEM. We knew this was coming. So many people with myalgic encephalomyelitis (ME) develop the disease after an infection, up to 80% in fact, and evidence is mounting that a non- trivial percentage of individuals will go on to develop ME after having COVID-19. Viral infections have triggered ME at a rate of 10-12%, and other coronaviruses have led to even higher rates of ME. 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. Take action today by spreading the word to those with long COVID to: Stop. Rest. Pace. More info and how to get involved here.
I just recorded an interview with a Long Covid patient -- he found the PACE studies and tried GET and it made him sicker -- he said other Long Covid patients had also read PACE and tried GET -- he also talked of pacing, so we had to unpack the difference between the two. So from a marketing perspective, using 'pace' as part of a global campaign may misfire and mislead -- much time and energy may be required to distinguish 'pacing' from 'PACE' (as we all know).
Join #MEAction's Jaime Seltzer in encouraging #LongHaulers with #LongCOVID to #StopRestPace. Code: https://www.youtube.com/watch?v=XPt0kvBVm38