Table 3.

Textual examples of MEH factor themes for r/covidlonghaulers.

Themes	Text examples
Testing	“…My first relapse felt a little worse than the initial infection and I did test negative at that time.” “Positive PCR test in mid-April, and NEGATIVE antibody test in November. So yes, definitely possible you had it even though your antibody test came back negative!” “I brought these same symptoms to my primary care last month and she had no idea how to respond especially when I tested negative for antibody”
Respiratory	“. A persistent dull ache in the left side of my chest is my main remaining symptom (I've had shortness of breath on and off, but this is generally much better now).” “. Currently having a bad flare 5 months in that makes it feel like I'm not breathing air at all. A lot of the shortness of breath I feel now feels like the issue is in my throat not my lungs (hard to explain)” “Just shortness of breath mostly. Im worried I have permanent lung damage since every single other symptom has mostly gone away for me”
Chronicity	“…I'm curious about your fevers as I am on a similar timeline and still get several low-grade fevers every week, but luckily not every day anymore. What are yours like? For me they usually come in the late afternoon but are gone by late evening and are somewhere between 99.0 and 99.9. I haven't broken 100 since I was very sick months ago, but the slight fever multiple days is confusing and worrisome. Is it similar for you?” “Not to be negative, but Ive been hearing X months since the beginning. 2 weeks, 2 months, 4 months, 6 months, etc. wake me up in 18 months!” “Got sick in March and first few months were only lung and neuro symptoms. Felt lucky that I escaped the long-term inflammation symptoms. 4 months later pretty sure I got infected again and the inflammation symptoms hit hard that first day and have stayed. Hopefully will slowly improve”
Cognitive	“I have been suffering from brain fog on and off for around 2 months now, even before exposure to covid on 9/3. For me, covid had seemed to affect me mentally and neurologically the most with my first symptom being an extreme depressive episode followed by multiple days of artificial anxiety that became extremely overwhelming. Right afterwards the tangible symptoms hit: low grade fever, fatigue, brain fog, and loss of taste and smell. Even after the sick symptoms had gone away, my brain was fogged to the point of completely being unable to study…” “I got sick back in March and my remaining issues are Fatigue, Brain fog (Cognitive Issues), Heavy, Restless and Achy legs. Last 2 months I feel like my brain fog and fatigue faded a little bit, but it's still far from good. When my fatigue faded a level last month, I noticed the brain fog also faded - for me, it seems to me like these two symptoms are connected. This also gives me hope regarding getting back to a normal state one day. My current brain fog issues are: ”brain-fatigue” of voice conversations, problems multi-tasking, focus issues, and memory issues.” “I vape CBD flower on the daily to help with the fog. Without it, brain fog and it feels like my brain is swelling”
Sensory	“…I had a very easy going case with just no taste/smell, congestion (which I always am congested so it wasn't too new), and extreme tiredness. Like two weeks later, I thought I was in the clear. My taste and smell were slowly returning, but out of nowhere in early June (my taste and smell were like 60% back), a lot of foods I love smelt like garbage and tasted worse. Things like mint, some sweets, chocolate, citrus (specifically orange), all of them tasted horrible. Still little to no improvement now” “I have had no problems with my taste and smell. Mine is hearing and eyesight. I have had one smell issue and that is the smell of soda. It smells like rubber to me. I am not sure why, but it is annoying. It turns me away from it and makes me sad. My eyesight goes in and out with pain behind them and hearing issues where I hear nothing but grasshoppers and static. For some reason I am the only one” “…I also have lost my appetite and my sense of smell and taste is limited to sweet and salty but I cant discern any flavor after that”
Cardiac	“Recumbent bike for 30 min (plus 10 min warmup and cooldown) 3x/week. My sweet spot for heart rate is 105–110. If I push past 120, I'll get a flare for the next 1–2 days” “…A nurse recommended to me a pulse oxometer to monitor heart rate and oxygen” “Hey, so its not a magic fix. It seems to stabilize my heart the most right after I take it and for a few hours-- my standing heart rate goes down to 80ish rather than 90–100, but still higher than it used to me. I'm taking it twice a day as a result. I still get lightheaded throughout the day, and further away from the niacin dose my heart rate will go to 90–100 when I'm standing (first it skyrockets to like 120 and then settles back down)”
Identity	“Just something to consider, as a long hauler myself staying up on what's what is important due to us not even being a year or so into initial infections. As we all know many doctors don't even recognize long haulers as a thing, im lucky to live near the Cleveland Clinic and my last ER visit gave me relief knowing doctors here are at the forefront against covid/long covid. But they had nothing for me treatment wise which is why I'm apart of this subreddit and posted this link…” It will be! I am still practically in bed as a long hauler approaching three months. I wonder when it will be safe for us long haulers with all of our multi system issues to get a flu shot this season. “a lot of long haulers are testing negative for antibodies. could imply that the lack of antibodies is causing long hauling. therefore either the vaccine could help or maybe same reason we long haul, we wont develop any antibodies from vaccine”
Pain	“GI issues, fever, diarrhea, body aches, fatigue, body pains, palpitations, nausea, eye pain/burning, metallic taste, smokey smells, inner nostrils swelling, loss of appetite and lost weight, shortness of breath, constipation, chest/heart pains, lack of sleep, headaches, acid reflux/heartburn, strange realistic dreams/nightmares, body twitches, brain fog” “I haven't had the tingling/burning but I did have headaches for the first couple months that felt like veins pulsating all the way down into the neck. I do get a chest pain sometimes that feels like it's originating from the bones of the chest, like a sharp hard stabbing. It's similar to voluntarily cracking the chest (like cracking knuckles) only this is not voluntary, and it is actually painful. It seems worse in the morning, as does a spongy feeling in the chest. Also, not so much pain, but I have had a consistent discomfort of the chest that feels like a ball is in it (near the bottom, like above the stomach) which seems to restrict my voice and makes it painful to talk” “Everything is worse on my left side. Tingling in my left arm, mostly left side back and abdominal pain, and my left armpit aches. Heck I even have a new thyroid nodule on my left side. Had subacute thyroiditis that caused hyperthyroid symptoms and terrible left sided head and neck pain. Most of my issues seemed to have resolved except for the pain in my arm pit and occasional back and abdominal pain, but still it was weird that effected my left side more”
Diagnosis	“The good news that could emerge from Covid-19 is that there would be more seriousness and scientific rigor in understanding and researching CFS. I dont think anyone can cure virus once it is in the host, but at least there could be some viral load medication similar to delaying HIV infection progressing into AIDS (4 years vs. ~25 years)” “I'm confused as to why it says the etiology of ME/CFS and LC are different. ME/CFS is oftrn triggered by a viral infection such as glandular fever or even chicken pox. LC has been triggered by the Covid virus, so the etiology sounds quite similar to me. And my symptoms are absolutely textbook post viral fatigue/CF” “…It's a general discussion over what we know about how viral infections can persist and whether long-term post-COVID-19 illness is driven by viruses that hide in the body or an immune reaction gone wild”
Immunity	“…I've read that the vaccines can induce varying degrees of immune system response so perhaps it can teach the body to make more antibodies then it currently does and make that final push. Maybe it will cause another huge wave and fuck us up more. Or maybe the body will just say yeah thanks for the info I already know and we just need to add another virus/infection that our bodies will be burdened with the rest of our lives. Guess well be finding out. Keep fighting brothers and sisters” “The way the immune system works is all about snippets. A macrophage eats an antigen, partially digests it, then starts handing out snippets to other immune agents, who communicate with each other through cytokines and produce more immune agent clones, who produce more cytokines. In case of a dire situation, the agents start killing each other, spilling out all the partially digested content, triggering a bigger immune resurgence. The contents of the immune cells aren't viable. It's just a slurry of protein chains that are eventually going to be broken down to simple amino acids and rebuilt into muscle, hair, stem cells, etc.” “The virus has passed through their system but their immune system is still on overload. The inflammation the entire body is experiencing is like irritating a wound”
Sleep	“I was having horrible insomnia for weeks in addition to the fatigue. Then one day it stopped and I started sleeping like ten hours a night. No idea what changed, but maybe the same thing will happen to you. If not then try acetaminophen, in my experience inflammation causes insomnia. Or low iron, but for long haulers probably inflammation. Acetaminophen knocks me out and I sleep amazing” “I'm 5+ months in. I've had dry mouth here and there since May. Usually at night when im trying to sleep or in the morning when i wake up. I mean it gets so dry that my tongue feels like sandpaper” TLDR: sleep has changed since COVID. Constantly waking up, bizarre dreams, sleep paralysis-like experiences, and waking up nauseous. I got COVID in July. I usually sleep soundly for 7–9 hours nominally. However lately, I have been waking up most nights after a couple hour with absolutely bizzare dreams. I usually cannot go back to sleep right away or I keep falling into this half sleep half not state (similar to sleep paralysis). After walking around or looking at my phone for a few minutes I can go back to sleep and usually sleep for a few more hours. When I wake up I tend to be a bit nauseous. This sleep cycle usually repeats for a couple of days and then one or two nights I get a solid, consistent sleep
Physical Activity	“Yes, recently started having really significant muscle weakness and aching. My legs ache just walking across the house, like I've been running around all day. I wobble sometimes when walking and have difficulty doing little things. I haven't decreased my activity level significantly up until this happened, so not due to less use for me. I'm at 5 months after onset of illness, and I've continued for the most part with regular activities, despite fatigue. I would rest more if I could, but I have a toddler. Rest has helped though when I am able to rest” “Hey, what are your thoughts on exercise/ exertion? I know it seems to make most people feel worse-- my heart rate goes way too high personally and then I'm dizzy the rest of the day after a walk-- and that for post-viral CFS people are advised to avoid exercise. However, POTS patients are advised to try to exercise to stabilize their heart rate. I, like many others here, have POTS symptoms. Should we push through the fatigue to try to exercise to avoid everything that triggers symptoms?” Quit the exercise immediately. I triggered a very bad relapse by exercising too hard. Rest like your life depends on it. I know it's debilitating, but you have to
Diet	“Im very glad some diets are working for some people. I've been trying to eliminate all kinds of food to see where Im going wrong to the point that my calorie count is becoming low. Plus I get stressed over what I'm eating or what the food will do to me. About 3 weeks ago I had 2 days that looked like I was coming around for the good, and the week leading up to that I wasn't on any kind of special diet. In fact I was drinking surgery smoothie king shakes, Campbells soup, and instant grits among other stuff. The two days was short lived. I do have gastritis so I know I have to watch out for foods with a lot of acid and certain fats. I'm not saying diet doesn't play a certain role in this, I just wonder if its a lot different for different people. I have POTS like symptoms so a doctor might tell me to eat more salt. I definitely think having a healthier diet helps. If anyone is getting better because of a strict diet change by all means stick with it. Maybe I will find my perfect diet but until then I can't stress about food and my weight loss“ “…When I did eat sugars and breads, I felt really horrible. The meats I eat are organic, and I do try to get some organ meat in once every week or so minimum. I don't drink alcohol, don't smoke and limit caffeine now. I'm 8 months in, never had significant respiratory symptoms toms.” “That's a pretty good plan so far! What I might add to that is ketogenic diet and keep yourself relatively deep in ketosis. If you are cutting out sugar and processed food anyway it shouldn't be too hard. You could also forgo breakfast and lunch. Eating one meal a day to improve productivity sounds counter intuitive but you'll have more energy”
Support	“That's a good thing to hear that its nothing to worry about, hope you recover quickly, take care. But consider buying a pulse oximeter its very helpful.” “Thanks for replying. Glad to hear it got better, the dizziness is soo annoying. Does your HR also increase a lot when doing any activity?” “That last statement really resonated with me deeply. I have a very similar experience, in that it is the smallest things that restore my heart and soul throughout all of this. Congratulations on being able to walk several miles at a time. This is so awesome to hear, and gives so many of us the hope we need” “Glad to hear you are slowly improving and sorry about the relapse, I know how disheartening it can be. Thank you for checking back in and I hope you continue to feel better”
Anxiety	“It infuriates me that doctors are once again blaming what they dont know on anxiety. Keep advocating for yourself. If someone tells you its just anxiety, get up and walk out. No need to waste your time on ignorant doctors.” “Yeah, all doctors say anxiety. *They* pick and choose the symptoms that can be anxiety related and seemingly ignore all the other ones” “Dont forget that COVID can mess with your brain. Anxiety and depression seem to be common post-COVID effects. My anxiety is majorly heightened now” “Well it's really hard to control anxiety and thoughts in our state with all our symptoms and I'm pretty sure most if not all of us have had it at some point, maybe even for the entirety of the illness. You know what they say “healthy mind, healthy body” it applies both ways”
Blood Pressure	“My blood pressure is usually low normal, but after getting sick my blood pressure was high. It fluctuated a lot but could get up to more than 160/90 for quite some time. My doctor was concerned enough to put me on a beta blocker that helped getting my heart rate to get lower but did nothing for my blood pressure. An Ace inhibitor (lisinopril) was prescribed later and it worked wonders for me. Got my blood pressure under control and surprisingly all my other symptoms disappeared other than my GI issues shortly after starting it” “Yes! I went to eye a couple weeks ago - and was convinced I had optic nerve inflammation and high eye pressure/glaucoma. All was good! My symptoms have since eased a little but include: eye pressure, eye strain with headaches, floaters and the scariest was eye flashes.” “My headache was gone for days. Now it feels like someone is sitting on top of my head. My sinuses feel inflamed and when I close my eyes I feel like my head is going to explode. Its not even comparable to a headache.there is just a constant pressure in my head. I can hardly focus with it and I feel so fogged out. Did anyone have these headaches at one point and they eventually went away? I would do anything to get rid of this head pressure and dizziness. Ughhhhhh”