Originally posted 9/23/22, in the San Francisco Chronicle (see text at https://archive.ph/gpHYO )
Originally published in the San Francisco Chronicle, 8/7/22
Have you ever had FOMO so bad you could taste it? When the sci-fi film “Everything Everywhere All At Once” came out in March, all my writer friends raved about it. My corner of the science fiction writing world hailed it as one of the best movies of all time, and it was all anyone could talk about. It was the conversation happening in my industry. Before the pandemic, I would’ve gone to see a new movie in theaters. In the early pandemic, it would’ve been on a streaming service, and I could’ve seen it safely at home. But now, with mask mandates gone and everything back in theaters, I can no longer see new releases and be part of the conversation.
I also still can’t go get a haircut, go to a dentist or go on my honeymoon.
During the pandemic, I’ve had to hunker down. I’ve been extra cautious not to expose myself to the coronavirus because I’m high-risk: I have myalgic encephalomyelitis (sometimes called ME/CFS or chronic fatigue syndrome), a neuro-immune disease that makes it much more dangerous for me if I get COVID-19.
As we’ve collectively “moved on” from the pandemic, we’ve done away with common-sense precautions like masking in indoor places (especially on public transit!), we’ve ended good community health practices like contact tracing and government-paid testing, and we have just decided that we’re done, the pandemic is over.
Only the sad and irrefutable truth is that it’s not over. We’re on our fourth and fifth omicron sub-variants, each of which has been about 20% more transmissible than the variants that came before them, which in turn were about 20% more transmissible than the variants before them and so on. We’ve changed our Centers for Disease Control and Prevention tracking map to only count transmission as “high” when there’s a risk of hospitals running over capacity, even though the rate of actual transmission is higher than it ever was. We’ve decided we’re OK with COVID ripping through the population more-or-less unchecked, since we know breakthrough infections are not only possible, but common.
People are still dying of COVID and even more people are getting long COVID (which we’re seeing develop into myalgic encephalomyelitis for many long haulers, and trust me, you don’t want it). The CDC and Food and Drug Administration have mostly abdicated their responsibility to prevent infections, focusing only on serious illness and death, while ignoring long COVID and the impact of the virus on disabled people.
And, of course, the more people get COVID-19, the more people are disabled by long COVID, which can also make them high risk, and the problem just compounds.
But even for high-risk people like me who haven’t gotten the virus, we’ve just become more disabled as a result of these societal practices.
There’s a model of disability that says that your limitations are partially based on what you inherently can and can’t do, and partially based on the accommodations society makes for you.
So while I could fully participate in, say, conferences before the pandemic (I could just rent a scooter to get around, an easy accommodation), and at the beginning of the pandemic when everything went virtual (I could participate from my couch), this is no longer the case. I am more disabled, as in, less able to do things, because society has decided that protecting people like me doesn’t matter.
I am not able to physically go to my field’s largest conference (where I’m meant to be a speaker) in September because the safety precautions are just not there, despite conference organizers doing their best. In order to attend, I would need to go on two flights where, even if I were masked, I’d be trapped in a small metal tube with no air circulation for significant periods of time surrounded by unmasked people. (Air circulation on planes doesn’t start until the flight is in the air, and with the current mess of canceled and rescheduled flights, people wind up packed together in unventilated planes on the ground for hours at a time. Not to mention that folks get trapped in airports waiting for delayed flights as well, also surrounded by unmasked crowds in an indoor setting.)
I would need to go to a hotel that doesn’t require its staff to wear masks, or it doesn’t have reasonable air circulation. And I would need to go to a conference center where people are expected to eat indoors in groups, in a building full of other conferences and gatherings that may not have masking regulations as good as mine.
This isn’t new. In April, I was supposed to go see my family, whom I hadn’t seen in a year, for Passover. Three days before I was supposed to fly out, I changed flights so that even the return trip would be within the airline mask mandate timing. When my mother-in-law got off her flight the next day, she told me that even though the mandate was in place, very few people were following it and nobody was enforcing it, and she felt uncomfortable. I canceled my trip at the last minute, and it was a good thing I did, because a U.S. district judge threw out the mask mandate on the day I was meant to fly home. I heard horror stories of people ripping off masks mid-flight and of people who expected to have an extra layer of protection suddenly trapped in a risky situation they didn’t consent to.
I’m fortunate that, for many things, there are some alternatives. I can go to the virtual component of my conference, even though that will be just a tiny sliver of the overall experience. As for Passover, my in-laws put a laptop that had me on Zoom on the table so I could participate from afar. And, yes, it was a little awkward being the only remote person.
But there aren’t alternatives for everything. Please consider that as you want to go back to your pre-pandemic life, so do disabled folks like me. Just as you want more socialization for your mental health, so do disabled folks like me.
Society has decided that people like me just aren’t worth accommodating, but we can be and do better.
If you’re in charge of an event, a workplace or an institution, please include common-sense COVID precautions. Ask folks to be masked, especially indoors. Make sure there’s great air circulation, or even better, hold your event outdoors. Ask folks to test before they show up. You won’t just be making it more accessible for folks like me — you’ll be making it safer for everyone.
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.
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.
Those of us suffering with ME/CFS could use the help.