ME Patients Can Help COVID Long Haulers
by Tom Strobel, MEAction Colorado Steering Committee Member
Those with any experience with ME/CFS know PEM, Post Exertional Malaise. It's the onset of fatigue, weakness and brain fog that follows overdoing physical activity, cognitive exertion or sensory overload. It doesn't just go away with some rest and may lead to a debilitating "crash".
COVID Long Haulers are those who have gotten sick with COVID and who are not getting better. They are having cardiac, respiratory and inflammation related problems and are experiencing persistent fatigue, brain fog and other symptoms that ME patients know unfortunately too well. They're also "sharing" our PEM.
The COVID Long Haulers are going to the same doctors and assorted health care professionals that ME patients go to and often are getting the same meager and not so helpful answers that we received. Worse, they may hear that they must get back to "normal", exercise, and return to work, with the implication that it's "all in their head."
People with ME and their supporters can help COVID Long Haulers. We can reach out to them by being the voices we wish we'd heard when we started this journey. If they're told to tough it out and get just better, we can point out that we've heard that too and that we know it's not that easy. If they're told to get some exercise, we can point out that if that exercise doesn't feel good and in fact makes them feel worse, that it's ok, not a character fault and can be explained by PEM.
We can reach out by using some of the suggestions found on the ME Action page about Stop. Rest. Pace. Here, there is information about pacing in the context of PEM and its counterproductive effects. We can share this on social media. There are directions for doing a 2 minute long video, as either a person with ME or an advocate/caregiver, or using your Twitter account to get the word out that the frustration that COVID Long Haulers are feeling is valid and that there may be alternatives to chronic exhaustion.
The large number of people who are COVID Long Haulers will challenge the health care system to better treat those with post viral infections and that should include those with ME/CFS. We can help by reaching out and contributing by sharing our experience in the Stop.Rest.Pace. program.