Friday, May 19, 2023

ME/CFS as a Guide to Long Covid

ME stands for Myalgic Encephalomyelitis, a chronic neurological disease affecting the nervous and immune systems of about 17 million people worldwide. It's also known as CFS, Chronic Fatigue Syndrome, for it's most obvious symptom: confining people to their bed with overwhelming fatigue. Any activity, physical or mental, can make things worse from PEM, post-exertional malaise. But that's not the only symptom. People also experience debilitating pain triggered by exertion as well as any otherwise minor illness. Anyone can get ME, but it primarily hits people between 40 and 65.

Kornelia Paulsen illustrates it like this:


The disorder has been around for decades, but doctors and researchers still don't know how to help, and some regard patients with contempt or give bad advice like, just get some rest or muscle through it or lose some weight or take antidepressants or anti-anxiety meds to help cope with chronic pain. In a nutshell, we're stuck at pull yerself up by yer bootstraps and it's all in yer head. The most damaging advice is the current cure-all: exercise - despite that it so clearly exacerbates symptoms. If exercise is going to be treated as medicine, then it needs to be studied like one and distributed with careful dosing as required, overtly discussing concerns with overdosing and other negative side effects. 

Long Covid has blood markers that help stave off the "all in your head" bit from doctors, but they are still at a loss of what to do to help. And now The Economist just estimated Covid deaths worldwide at over 30 million, four times the official tally. Hospitalization of school-aged kids are on the rise again. Here's Ontario's tally, the wavy line representing monthly hospitalizations averaged from the pre-pandemic years. Notice how much typical illness was avoided when mask mandates were in place:

For decades we haven't found an adequate treatment for ME. We don't always find a cure. Long Covid can be avoided, though. Just don't get infected with Covid or, at the very least, reduce the number of possible infections by wearing an N95 respirator. Nobody will be able to help you once you get it. 

And keep fighting for clean air in schools and mask mandates to prevent our children from living out their lives from their beds. A recent study comparing schools with ventilation and N95s to those without found that,
"Overall daily average CO2 levels were 1,064 [ranged from 832-1,296]. Daily average aerosol number concentrations . . . decreased by 69% with mask mandates and 39% with air cleaners. Compared to no intervention, the transmission risk was lower with mask mandates and comparable with air cleaners."
I know calling for clean air is more palatable, but we need to face up to the need to wear masks if we hope to protect our children and have a viable next generation - and if we hope to continue to have farmers, doctors, engineers, nurses, sanitation workers, etc. able to continue to be able to work in the immediate future. 

ETA: Also check out this art installation and 60 second video on how Covid causes ME/CFS with Jaime Seltzer. 

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