Originally published in the SF Chronicle, Jan 2022


One of the things we keep hearing about omicron, the new coronavirus “variant of note” that has propelled COVID-19 cases to record levels in the United States, is that preliminary data shows it to cause milder disease, which implies a lower death rate. People seem cautiously optimistic. And, considering the mass deaths from the delta variant, this makes sense.

The problem, though, is that “mild disease” just means you don’t wind up in the hospital. And mild might not be the end of the story.

People seem to think COVID-19 is a binary — you either die or you get better. (You might even be lucky enough to get better after being asymptomatic.) But there’s actually a third path, which is long COVID. You don’t die, but you don’t get better, either, and are left with debilitating symptoms that might be permanent.
And no one is sounding the alarm about the risk of disability from “mild” cases of COVID.

Long COVID is common following even mild cases of COVID-19, and its symptoms can be far more severe than the mild case it came from. It can lead to devastating illnesses with symptoms that wreak havoc on every part of your life, including a condition called ME/CFS (also called myalgic encephalomyelitis or chronic fatigue syndrome), a usually lifelong debilitating disability.

I have ME/CFS. I promise you, you don’t want it.

Right now, approximately 30% of COVID-19 patients are experiencing long COVID symptoms. Some get better after a few weeks or months. But once you hit the six month mark, things look different.

The majority of people with long COVID past six months are reporting that ME/CFS symptoms are their main concern, according to a study in the Lancet, and as many as 50% of people with long COVID qualify for an ME/CFS diagnosis, according to an article in the Mayo Proceedings. Researchers are predicting that more than 4 million Americans could develop ME/CFS following COVID-19, nearly tripling the number of people with the disease.

In the most cautious calculations, with 55.5 million cases and 825,000 deaths in the U.S., there’s about an average 1.5% chance of death from COVID-19, but an average 7.2% chance of getting ME/CFS from it. That’s right, you’re almost five times as likely to wind up disabled from ME/CFS than to die from the disease, and that’s just one of the potential long-term outcomes of long COVID.

I’ve had ME/CFS for four years. Most cases are virally triggered, like from COVID-19, though other viruses and environmental stressors can also cause it. I’ve gone from being an avid salsa dancer to needing a wheelchair to go more than two blocks. I’ve gone from being able to read a whole book after a workday to needing an entire rest day to recover after one. I find physical things like folding laundry to be difficult exertion now. I’ve lost friends and clients to this disease.

There is no treatment or cure for ME/CFS. It feels like constant, debilitating fatigue, and is typified by a worsening of symptoms following any type of overexertion, whether physical, cognitive or sensory. We can also have shortness of breath, brain fog, unreasonably high heart rates and unrefreshing sleep that makes sure there’s nothing to make the fatigue go away.

Long COVID is now my worst fear.

I have moderate-to-severe ME/CFS, but extreme or continuous stressors (such as viral illnesses, or pushing through when trying to recover from previous exertion) can make the disease permanently worse. Some ME/CFS patients have it so severe that they are bedbound, and find stimuli like light and sound too difficult to manage. The suicide risk for ME/CFS patients is much higher than the general population because the quality of life is so low.

Anyone can get long COVID — you don’t need a pre-existing condition like mine. And this means anyone can get ME/CFS. We don’t yet know how vaccines and boosters affect the likelihood of getting long COVID, and we don’t yet know what omicron means when it’s added to the mix.

For me, the possibility of very severe ME/CFS is scarier than death. I already wouldn’t wish my moderate ME/CFS on anyone. I feel like I’ve already lost so much. I can do fewer fun things, fewer work things, fewer family things. Every single part of my life has had to be cut back in order to accommodate this disease. I deal with pain and nausea and dizziness on a daily basis.

They say disability doesn’t cause suffering; society’s lack of accommodations for disability causes suffering. And that is true for many disabilities. But not ME/CFS.

My hope is that everyone takes extra precautions to not get sick in the first place.

Make sure you’re vaccinated and boosted. Have everyone take a rapid test before going into an indoor gathering, try to avoid unnecessary travel, and keep wearing your N95. No indoor dining experience with unvaccinated friends is worth getting this lifelong disability.
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You may not think a mild case of COVID is a big deal. And it may not feel that way at first. But, I promise you, you don’t want to wind up with ME/CFS.

Originally published in the SF Chronicle, Nov 18 2021


Four years ago, I developed a debilitating illness that disrupts multiple bodily systems called myalgic encephalomyelitis, or chronic fatigue syndrome (otherwise known as ME/CFS). I’d been a strategy consultant for tech startups for years. Suddenly, I was too sick to work full-time. I went from being an avid salsa dancer to needing a wheelchair to walk more than a block. I went from being healthy to disabled in the blink of an eye.

But I’m not here to share my sob story. Instead, I want to show you the future.

Right now, an onslaught of people who are getting COVID-19 are not fully recovering — their divergent symptoms falling into the bucket known as long COVID. According to a study in the medical journal the Lancet, however, the majority of people with long COVID that lasts more than six months say that ME/CFS symptoms are their main concern. As many as 50% of people with long COVID qualify for an ME/CFS diagnosis, according to the Mayo Proceedings. Researchers are predicting that more than 4 million Americans could develop ME/CFS from COVID-19, nearly tripling the number of pre-existing people with the disease.

And nobody is talking about it.

ME/CFS feels like constant, debilitating fatigue, and is typified by a worsening of symptoms following any type of overexertion — whether physical, cognitive or sensory. For someone with an extreme case of ME/CFS this could mean days or weeks of recovery after attempting to brush their teeth. I have a more moderate form of the disease, which often means I have to rest for hours after a grocery trip. I also have shortness of breath, brain fog, unreasonably high heart rates and unrefreshing sleep that does nothing to make the fatigue go away.

ME/CFS is often triggered by a viral infection, like COVID-19. There is no known cure or treatment. Our government has neglected this disease for decades, making it one of the most underfunded diseases in the National Institutes of Health portfolio.

So, you’ve got long COVID and it’s not getting better, and you’re showing symptoms of ME/CFS? Here’s what I wish someone had told me when I got sick:

You’re not crazy or lazy: This is a real disease. It’s invisible and hard to explain to others, but it is absolutely real.

Find the right docs: Even after the National Academy of Medicine put out a 300-page report explaining the physiological evidence base for ME/CFS and presenting diagnostic criteria for it, many doctors still mistakenly assume patients are suffering from anxiety or depression, which are very different conditions. (It is incredibly frustrating to stagger into an emergency room with a resting heart rate of 140, when adults are usually 50-90, and essentially be asked if I’m making this up.) If your doctor won’t listen to your symptoms, find another one. If you’re getting dismissed, point to concrete changes you’ve seen, like the change in resting heart rate or the new need for a wheelchair, because “I’m so tired” won’t cut it. Don’t let your doctor bully you into exercising, because it can cause permanent damage. And do your research. MEAction has great resources to share with your medical team.

Rest: Rest, rest, rest like your quality-of-life depends on it. Possibly without even your phone for entertainment. The best chance of not getting ME/CFS in the first place is to rest during your post-viral fatigue and to take it slow. If you have ME/CFS, the best chance you have of not making it worse is to avoid overdoing it. Pace yourself and get more rest than you think you will need. Because the “crash” that you get when you overexert yourself, the one where all of your symptoms get worse? If it’s a bad enough crash, it can do lasting damage.

Do less stuff: Unfortunately, everything counts as doing stuff. Physical exertion counts, even if it’s folding laundry. Intellectual exertion counts, even if it’s writing a tweet. Emotional exertion counts, even if it’s getting excited over a cute dog. It takes a while to find your right balance of doing stuff, because doing no stuff at all doesn’t really feel like living. But, sadly, for you own health, you have to do less than you did before. Keep an eye on how tired you get from different activities to optimize your activity level.

Find community: You’re not alone, There are other people out there who are going through the same thing you are. There are Facebook groups, Twitter hashtags, message boards and subreddits. Find the one that fits you, and find some solace in other people going through what you’re going through. People share tips on new research, supplements their doctors told them to try and just commiserate with one another. It makes things easier. I personally love the ME/CFS subreddit, which is both supportive and informative.

I hope if you know someone with long COVID who just hasn’t gotten better, you will pass this advice along. The new influx of patients stemming from the delta surge will hopefully force a ramp up in research to figure out what to do about this disease that is quietly affecting millions of people in the U.S.
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Those of us suffering with ME/CFS could use the help.