A story about ME.
In the late winter of 2004, I caught a nasty virus—perhaps SARS-CoV, perhaps not—and since then my life has been a series of shrinking options and forced limits. Take too many steps? Bed. Cook a meal? Bed. Mental stress? Bed. Hangout? Bed. Enjoy the beach? Bed.
In the late winter of 2004, I caught a nasty virus—perhaps SARS-CoV, perhaps not—and since then my life has been a series of shrinking options and forced limits. Take too many steps? Bed. Cook a meal? Bed. Mental stress? Bed. Hangout? Bed. Enjoy the beach? Bed.
In 2011, I was diagnosed with Myalgic Encencephalomyelitis—ME—but not before the push-crash cycle left me unable to work, unable to lead a normal life. PEM, a racing pulse, breathlessness, sleep disorders, OI, heat/cold/sound/light sensitivities—sounds fun, right?!
#pwME
#pwME
But interestingly, elevated liver enzyme levels were some of the first diagnostic results to raise a red flag after infection. The levels have bounced around, but have remained too high since my fateful trip to Europe in 2004. In early 2017, I was also diagnosed with NAFLD.
Now, I know what skeptics will say and they're right: Correlation doesn't prove causation. I can't prove that the viral illness that left me permanently disabled also caused my liver problems. I mean, people are allowed to have more than one streak of bad luck, right?
But given the recent uptick in hepatitis and other liver issues—at the exact same moment a new coronavirus swirls around us, one wonders.
At the very least, present caution (in the form of mask mandates and expedited pediatric vaccine approval) is warranted.
At the very least, present caution (in the form of mask mandates and expedited pediatric vaccine approval) is warranted.
Moreover, it's important to note that members of my illness community were some of the earliest to sound the alarm that SARS-CoV-2 would likely lead to a wave of post-viral illness, and most probably a dramatic increase in people diagnosed with ME. But it wasn't clairvoyance.
Sufferers of ME made this call—which has now been proven overwhelmingly correct—because we had seen an increase in people who develop ME after other novel respiratory pathogens going back decades, including after SARS-CoV. bmcneurol.biomedcentral.com/articles/10.11…
We also knew that the sheer numbers of people getting infected would tip many into full-blown post-viral ME. After all, one thing that ME researchers have conclusively shown is that there are multiple roads leading to same place. Some people who get a bad cold even develop ME!
As the first reports of Long Covid began to circulate in the late spring of 2020, the fears of the ME community were realized: LC patients were exhibiting some of the classic hallmarks of ME—Post Exertional Malaise (PEM), unrestorative sleep, cognitive problems (brain fog), etc.
There is hope for those suffering such post-viral fates, but there's also an aura of uncertainty. Lots of new research is looking at these problems (sometimes ignoring valid older research, unfortunately), but we simply don't know whether most LC/ME is reversible or treatable.
Ultimately, it's important for governments and individuals to exercise a bit of caution and humility in the face of such uncertainty. As such, we must work to minimize COVID infections and reinfections with commonsense things like quality respirators, air filtration devices, etc.
Finally, if you or someone you know are among the unlucky ones who find themselves in a post-viral illness basket not of your choosing, know that there are things you can do—right now—to help decrease the chance of making your symtpoms worse. #StopRestPace meaction.net/stoprestpace/
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