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Long COVID threat extends far beyond pandemic
'Everything since that day has been illness'
Teasdale’s post-COVID symptoms match a condition called myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. It typically afflicts people recovering from a viral infection like SARS, Epstein-Barr or West Nile disease. While it’s considered neurological, it seems to invade the body from every portal: causing brain fog, sensitivity to light and sound, but also racing hearts, dropping oxygen levels, muscular aches, coordination issues — Teasdale simply feels like his body is going haywire.
In January, the journal Infection Control Today compiled other research forecasting more than 8 million Americans would develop long COVID. That’s at least three times the number of people currently diagnosed with ME/CFS (pre-COVID). The journal quoted #MEACTION editor Adriane Tilman feeling unsurprised.
“Long COVID is not a new phenomenon — there are millions of Americans who got sick with a virus and never recovered before the pandemic, and developed ME/CFS,” Tilman told ICT. “The only difference is that we are seeing this happen now in real time on a massive scale.”
That scale may envelop the ME/CFS community itself. In the same article, National Institute of Neurological Disorders and Stroke Director Walter Koroshetz said that in the past cases of ME/CFS developed out of a post-infectious illness: “(The) only difference here is that we know what virus is driving it in large numbers of persons.”
The ME/CFS community started raising alarms about the potential for chronic fatigue after-effects in May 2020 — two months after pandemic lockdowns started in the United States. They already had decades of research linking viral infections with the secondary health impacts.
“Coronavirus leading to more cases of ME will happen for sure, unfortunately,” Dr. Alain Moreau of Université de Montréal wrote in the 2020 advisory. “We need to be ready for the next wave.”
Vaccines have proved effective at preventing deaths and extreme immediate complications from COVID infections. But a recent study by the federal Veteran’s Administration looked at more than 30,000 COVID victims and found a neutral response for long COVID — the chance someone would get long COVID was even whether they had the vaccine or not.
And for an inanimate disease, it seems to have a vindictive personality. Most ME/CFS sufferers will start feeling better, take a longer daily walk or talk to a few more friends, and 24 hours later get flattened so hard they can’t lift a fork of dinner to their mouths. The process has a name: post-exertional malaise or PEM. Teasdale can feel it coming on after an interview runs over 90 minutes. His wife says he “looks PEM-y.”
PEM reactions worry Teasdale most when he hears about others trying to shake off long COVID. The temptation to get your life back, to apply positive thinking and goal-setting, often on doctors’ advice, results in a viral bait-and-switch, like accidentally throwing a bucket of gas on a fire when you thought you grabbed water.
That feeling of your body perking up like a cell phone with 1% left on its battery — flaring to life then fading to black before anything can get done — has rearranged Teasdale’s relationship with hope.
“We don’t traffic in hope here,” Teasdale said. “Because hope hurts. Hope is actually the thing that causes me the most pain, when it doesn’t work out. So you know, I can have all the positive thoughts in the world I want. But the reality is there’s something going on inside my body. Whether it’s something with my mitochondria, whether it’s vestiges of the virus in my organs, or brain, we don’t know. But it’s neurological. It’s cardiovascular. It’s pulmonary. And positive thinking doesn’t change that.”
For people with post-viral ME/CFS, the recovery rate after six months is about 5%. No cures exist yet. Some people have found occasional relief with mild stimulants like Ritalin, usually at much lower doses than prescribed for attention-deficit disorder. Diets designed to reduce inflammation also offer some help.
For many sufferers, that means a lifetime of long-term disability. Long COVID doesn’t qualify for workers compensation coverage
