Have you heard of LongCovid or Long Haulers? The terms refer to a significant number of Covid-19 patients who remain ill, long after the initial infection. This post-viral condition can disrupt lives and even leave patients bedridden. Long Haulers often qualify for a diagnosis of a disease called ME/CFS as well; with a few caveats, I think it’s fair to consider most of LongCovid to be a subset of ME/CFS. I can certainly relate to the experience.
In 2013, I unknowingly acquired Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome” (ME/CFS). It wasn’t triggered by Covid-19—in my case, a more common coronavirus triggered it, a simple cold. Though it often occurs abruptly, the onset was gradual for me, and for about five years, no one could figure out what was wrong.
Thinking became difficult; I would stare at emails until my head filled with white noise. I had to stop and catch my breath midway up a flight of stairs. I tried to exercise, but the next day I’d be so achey & exhausted that I felt like I had the flu. Sometimes I couldn’t get out of bed. As my condition steadily declined, I resigned from the Washington Post, and by 2016, I stopped working altogether.
Sleep doctors uncovered my severe sleep apnea and idiopathic hypersomnia (daytime drowsiness that doesn’t improve). I’ve likely had those two conditions my whole life, but no one would give me a sleep study until my health was completely falling apart. Doctors prescribed stimulants and a CPAP, which helped with the sleep disorders, but much to everyone’s frustration, my overall condition kept getting worse. I finally figured out that I had ME/CFS in late 2017, and I had a doctor confirm it shortly afterward. But a few weeks after my discovery, just before Christmas, my health fell off a cliff.
I became bedbound and began getting intense migraines. Light & sound were totally unbearable. Reading & writing were impossible. Screens immediately triggered migraines. Everything hurt me and I could hardly move. It’s impossible to convey just how dark and frightening that year was. Even I struggle to understand it.
I’ve made gradual improvements since then, but the disease is still severe. I spend most of the day on my back, I have to be careful about screen time, and I haven’t watched a sunset in years.
ME/CFS is a lot like post-concussion syndrome. It sets limits. If you push past your limits, you “crash” and get a painful flare up of flu-like symptoms that can last for days. If you push and crash often, your illness gets worse. I spent five years pushing and crashing, which led to my severe condition.
Some of my symptoms:
- Frequent migraines; they’ve recently improved a bit, but for years I got them on a daily basis.
- Extreme light sensitivity; when I leave the house, I wear blindfolds.
- Extreme sound sensitivity; I wear earplugs 24/7.
- Physical stamina; when I leave the house, I ride in a wheelchair.
- Cognitive stamina; if I read or listen too much, I crash.
- Postural Orthostatic Tachycardia Syndrome (POTS); my heart rate spikes if I stand too long.
- Muscle pain in my limbs; it’s especially bad when I crash.
- Muscle twitches; they occur at random, all over my body.
- Aphasia; during a CFS crash or a migraine, I often stutter, or slur, or go completely mute.
- Paralysis; sometimes I completely lose the ability to move, for anywhere from a few minutes to a few hours.
- Sleep disturbances; I often have trouble staying asleep for more than a few hours, even with copious medication and supplements.
- Brain fog; sometimes it’s just difficult to think clearly or at all.
- Gut trouble; thankfully, probiotics and fiber help.
- GERD; I have to be careful about what and when I eat.
- Communication stamina; verbal conversations are taxing for me, especially phone calls, and I can only handle another person’s presence for a fairly limited period of time.
I’m currently working with an ME/CFS specialist, as well as several other specialists. I have a good team of doctors, but there is no cure. I’ve tried many treatments, but full recovery is rare. I’m doing my best to live within tight limitations.
If you’d like occasional updates about my health, you can follow my Patreon. Skip the subscribe options, hit Follow, and every month or two you’ll get a message from me in your inbox. Alternately, if it feels right, you can subscribe to support me and my work. Disability income doesn’t even cover my medical expenses, so every patron helps.
Want to learn more? There’s a lot of misinformation out there! Here are some resources that I find helpful:
#MEAction: quick facts; dig deeper into the site, and you can also find a doctor locator, activism events, and LongCovid info
Unrest: an accurate and compelling, Emmy-nominated documentary about the disease—this is the best place to begin—unlike many other medical docs, this one is genuinely a good film too
Do I Have CFS?: help figuring it out
CFS Self-Help: advice on managing activity levels to minimize symptoms, also known as pacing
Health Rising: the latest ME/CFS-related news
Open Medicine Foundation: cutting edge ME/CFS research
MEpedia: a patient-run resource
Phoenix Rising: smart & deep patient forums
r/CFS: quick, newbie-friendly discussions & chats
Clinician Coalition: information for healthcare providers, including free CME credits
Donate: give to #MEAction in my name