This post is an edited version of a recent Twitter thread of mine.

I feel a rant coming on. Brace yourselves.

Stereotypes like “frail and old” and “young and healthy” are damaging and untruthful. #longCOVID exists. Disabled people exist. This pandemic is hitting people of every age. https://t.co/dazXt7nUTJ

— Jennifer Brea? (@jenbrea) December 18, 2021

I was 33 years old. I was quite fit and active. And then, in a heartbeat, I wasn’t.

I’d won the nature-and-nurture lottery, when it came to my health. At 33, I had low blood pressure, heart rate, and cholesterol. I did cardio and strength training three to four times a week. Then, while on an eight-day scuba diving trip in Mexico, I caught Dengue fever. Over the ensuing weeks and months it converted to an auto-immune disorder known as MECFS.

My case was “mild” at first (meaning that after my initial, seven-and-a-half-month-long struggle with “Long Dengue,” I could still work a full-time job). Even then, I had to be so careful. Any significant physical exertion and I’d wake up the next day with what felt like a full-body hangover that lasted for days. My sleep quality was poor. During flareups I was  weak and debilitated for days and weeks.

The illness gradually worsened as I entered perimenopause in my 40’s. At menopause, age 54, it worsened dramatically, and dragged me down a deep hole. Over the past decade I’ve become housebound and mostly bedbound. The reserves of energy I have to do anything—physical, mental, emotional, or sensory-based—are staggeringly small. It’s really impossible to imagine this, without experiencing it for yourself.

On my bad days, after a five-to-ten-minute conversation, I have to rest for an hour. I can’t talk on the phone most days—not without paying a heavy price. Making coffee, reading or writing more than a paragraph or two at a go? Doing a load of laundry? Standing up for a few minutes? All these crash me.

I can’t reliably form new memories or access old ones anymore. On bad days I have difficulty finding words or forming clear thoughts. Trying to push through causes me muscle weakness and pain, air hunger, severe headaches, nausea, vertigo, inability to concentrate, and brain fog (btw, that term, “brain fog?” To me it feels more like someone has loosed a tornado of sand in my head, or needles. Or they turned on an egg beater in there. Or ran 50,000V of electricity through my brain). These symptoms can last for days. Weeks. Even months, before they ease.

In fact, the pandemic didn’t change much for me. I was already isolated by this illness. I’ve been cut off for years from the people and plans and activities that matter most to me. I’ve lost hand-eye coordination, motor planning, and balance: the energy cost is too high. I have constant nausea, head pressure, vertigo, and neck pain. I have to watch Steve carry the full load of caring for me, working, and doing most of the chores, with no backup for him, whatsoever. I hate it.

This is not normal aging. It’s not like what healthy people experience as fatigue. It feels more like you’re being slowly, inexorably crushed by an invisible force. Like slo-mo drowning. And it goes on and on, for years. And worst of all it’s so fucking boring. It’s sheer torture, to always have to be still, when there’s so much you want to do. (And then there’s the endless gaslighting from medical professionals uneducated on the illness, but that’s a whole ’nother fishpot and I haven’t got the juice…)

“Only the old and frail get Covid…”, oh raelly? At least before MECFS took me down, I could fend for myself. Now?

This can happen to you. To those you love. My own MECFS was triggered by a bout of Dengue fever, but any number of viruses—including Covid—can cause it (along with other hard-core stressors). Trust me; you don’t want this disease. It’s really, really awful.

Not a lot is known about the exact mechanisms MECFS uses to fuck people up, but we do know it’s a metabolic auto-immune disorder. The illness robs your cells of the energy they need to do their work. As you know, every cell in our bodies has mitochondria, the tiny engines that run continuously, feeding us the energy that allows us to move, to talk, think, and feel. For someone with MECFS, that engine is broken. You get the barest trickle of energy and it takes forever to recharge once you’ve used it up. That breakdown in the energy chain then sets off a whole cascade of other body systems that start screwing up, too.

On the left is what healthy cells look like. On the right is how they look, with MECFS.

(source: ME/CFS Metabolomic Study Points to a Potential Cause of Mitochondrial Dysfunction, HealthRising.org)

Current estimates are that a whopping 30% of those who contract Covid could end up with the latest edition of MECFS (along with other serious post-viral health problems that aren’t MECFS). The disease doesn’t discriminate. The median age is 34, but the disease targets old and young alike. Adolescents get it. Kids get it. Even mild Covid can trigger Long Covid and can hand you a lifelong case of MECFS. You’re not safe just because you’re “young and fit.”

Everyone’s so fucking done with this pandemic, and I get it. Me too. But I can’t bear the thought that millions more people might slide into the maw of  this horrible illness, due to our pandemic fatigue; our complacency and impatience. We must find room in our hearts and minds to protect ourselves and each other, and fight the spread of Covid.

Long-haulers are in the early stages of the illness—which means they have a real shot at full remission. But only if the medical profession knows how to support them properly, and funding is available for treatment, patient and family support, and the search for a cure. Far too often, even with the best of intentions, healthcare providers recommend useless, even harmful treatment for this disorder.

Bluntly, those of us with MECFS can’t fight this illness on our own. It takes everything we’ve got—and most of what our loved ones have—just to survive. And the system doesn’t see us. Doesn’t even believe we’re really sick. It can take decades to get a diagnosis. Please please, continue to take all precautions, to reduce the spread of Covid. It really will make a difference.

To public health officials, physicians, and journalists: you all REALLY NEED TO BE TALKING about this! Covid is NOT merely cases, hospitalizations, and deaths. It’s also causing a devastating mass disabling event. One that’s still ongoing. Let us not repeat the mistakes made in prior pandemics, and leave so many long-haulers suffering, without support or hope of a reprieve. We can do better this time. We simply must.

If you have a nickel to spare and want to help, the Open Medicine Foundation funds cutting-edge collaborative research into MECFS. Run by the mom of a survivor. They are an excellent choice for your dollars. (omf.ngo)

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Check back later: I’m gathering information and hope to have an MECFS FAQ page up soon with a list of resources, as energy permits.