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.
Those of us suffering with ME/CFS could use the help.
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.
Those of us suffering with ME/CFS could use the help.
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