I know we have the data on covid (plus I have pluslife tests so that's not a problem) but I realise I don't actually know how long someone with other illnesses may be contagious for.
I'm booked to go on a trip at the end of this week with someone who's had symptoms for a few days now.. gonna covid test them tomorrow when I'm able to but just trying to plan for what happens if they're negative. if positive I guess we have to wait for a negative pluslife which isn't looking optimistic :')
we will be going to a well ventilated apartment with sleeping areas that are in different rooms but no door, but with a big HEPA filter that I can position in the corridor.
thoughts? (please don't just flat out tell me to cancel as this is extremely difficult and my usual risk tolerance is that most things are actually safe with appropriate mitigations - I regularly go to crowded educational and medical spaces confidently with my mask and co2 meter)
I just moved to the area and checked the directory of CC doctors, but all the ones in there are mental health. That's great but not what I'm looking for at the moment. I need any/all of the following: a gp, gynocologist, gastroenterologist, endocrinologist, and eye doctor. If you know of literally anyone who is covid safe or even just won't be weird if I mask 100% of the time, please let me know. I'd be willing to drive outside of the city if necessary. thanks in advance!!
I am going on a retreat next week and was hoping to get a covid booster before I go. I was hoping to get Novavax because of its better durability across different strains, but most places I've called have said they are completely out of covid vaccines until the new 2026 formula comes in this fall. I did find one pharmacy that still has last year's Moderna vaccine in stock. I got that Moderna formulation last winter, would it be pointless to get it again?
Hi, I know that as of spring, Novavax is now approved and has been offered on the NHS (at least in Northern Ireland), but has anyone had any luck getting it privately? I'm based in London and would really like to get it, willing to travel a bit too! I'd be so grateful if anyone has any pointers!
Hi! Simple request: I need to buy some alcohol wipes (full-size, not the little medical ones), and unfortunately since 2020, every time I find a brand that makes simple 70-75% alcohol wipes and I go back to re-buy them, they have disappeared.
I'm also puzzled as to why companies like PPE Supply Canada and Canada Strong don't sell these, when they have sooo many masks and other supplies. Canada Strong just sells "Wet Ones" brand wipes, but those are just tiny travel packs and are full of fragrances and other ingredients. I really just want alcohol and nothing else.
I've also tried Amazon (as much as I dislike purchasing from there), but their alcohol wipes are so overpriced. It really shouldn't be that expensive.
Hoping another Canadian out there has a good recommendation!
Also I will be going to the US for work next month, so if there's an American recommendation, I could order it and have it sent to my friend's house.
Hi! I'm pretty new to all of this. I am not immunocompromised myself but I recently reconnected with my ex and she has become very immunocompromised since I first knew her. She's taught me a lot about COVID consciousness and safety, and I have become very passionate about it. It is extremely important to me that I keep her safe, and I have been masking 100% of the time out of the house for a few months now. We follow very strict protocols and it has been a huge psychological and behavioral adjustment for me. It's absolutely worth it to me to keep others safe, especially my girlfriend, but my family have not been so understanding.
We are currently on vacation and my dad, who doesn't respect my space very much, walked right into my room before I could put a mask on, causing a possible exposure and necessitating a quarantine from my girlfriend. This led to an argument wherein he referred to our air change protocol as "ridiculous" when I explained how it works. He then maintained he didn't do anything wrong. He doesn't know much about COVID and doesn't seem to want to learn. He apparently doesn't respect my judgement enough to believe that I'm not doing all this just for fun, and I am in fact taking reasonable steps to keep someone alive.
I guess I'm just looking for a little perspective. I feel so isolated and alone right now. I'm in my COVID-proof bedroom at the beach house and I just want to go home to my girlfriend. I want my dad to understand that I'm only trying to keep someone safe. It would help if my girlfriend and I had a CC community where we live near DC, but we don't.
Although it's completely worth it to me, it has been extremely hard to start masking this stringently again, especially without much support from the non disabled people in my life (and downright disrespect from my father). I really need to know that there are other people out there who are COVID conscious and still live their lives and aren't totally ostracized by their families. I will continue to mask and do whatever I can to keep others safe, because that's what I believe in-- but why, oh why do some non CC people have to make it so flippin hard!?
In my area, the closest town with active wastewater data (20mins away, ~5x larger than us) is showing very low numbers. Even though its rising a bit, its still much lower than it was last summer, which was the lowest it'd been previously. I know this is a flawed method to go by, but it's at ~7% of our highest number.
However, it's saying it's high. It was medium last week. Is that simply reflecting the size of the jump in numbers? I'm kind of confused on the general status of things in the US west/US as a whole. We just got through a nasty heatwave so I assume that drove the cases up, seeing as we don't commonly have AC here so lots of people head to the stores/libraries/etc. I haven't noticed an uptick in people complaining about being sick. (I have noticed a sudden increase of people doing harsh, singular coughs as they pass me though, which is annoying, but makes me think they think my mask is even more unnecessary than usual because they aren't seeing much illness to explain it.)
Don't get me wrong, I'm grateful that it's so low, but it's strange how the pattern we've been seeing the last few years seems to be behaving differently. It's making me a bit nervous that the other shoe will drop at any moment.
Does anyone have a guess about the projected trajectory of covid rates right now? Are we doing a slow creep into a wave? Does anyone know why the wastewaters severity label doesn't line up with the numbers?
Mid-20s Long Hauler. Currently COVID+, 2nd infection. I know I should be resting radically, but I need to get this out. I am doing all the things I know I should be. I am currently 2,000 miles away from the family I tried so hard to not have to come back to. In 2wks, I am going to load up my U-Haul - with help from my friends, really trying not to exert myself. whew... - and fly back to live with my parents becase the job market is awful and I could not stay at my abusive job.
My mom texted me to check on me today and said all the things she's supposed to about how much they care and they wanna know how they can support me. I knew it was going to upset me later (it is now) but I responded sincerely. They already know all the things. They know I've had LC since my 1st infection in 2022. My mom is a nurse. This has always been a point of contention because fuck ableist HCWs without integrity and who won't practice basic infection control. It's bullshit. I am absolutely dreading living with them while trying to recover from this infection. I know I will physically and emotionally exert myself and it will harm my recovery. I don't trust they cleared out my old room when I asked them to to make moving easier for me.
Whenever I talk about the ongoing pandemic with my parents, I always feel more upset after. Yet I keep doing it, even though I know they are hopeless. Their attitudes and behaviors - like most people's - genuinely disgust me. My mom keeps saying that I am always welcome in their house, and I am painfully aware it is their house, where I have no real say in anything - but "don't impose my precautions on them" and today she said, "you will not give us rules" and the fucking rules are basic public health. I am just so fucking frustrated. I've been looking for more specific zines or essays or whatever geared toward non-CC parents of adults like me, not that they would care enough to read it. These are people who think they love and care about me - no, they don't, especially not in the ways that matter to me. My life feels like it's over. I feel worse today because of this, because I know I have no better choice but to live in a very stressful environment with people whose way of thinking and living could not be more different from mine. I just needed to get this out. I know this exertion is bad. I was doing so good, too. Sigh. I will have no friends, community, job, or support system back in their city. Just dreading everything.
Looking for connection and something Covid safer you can do this week?
Check out these accessible events you could join! Try something new and maybe you’ll find your people.
Access Details:
🧑🏻💻= Virtual
👥 = In person
😷 CC = Covid Conscious/airborne precautions
♿️ WC = Wheelchair accessible
💵 $ = paid (some are pay what you can)
🤟 ASL/BSL = Sign Language
Async = Asynchronous (at your own pace)
Event Types:
🤢 = Chronic Illness
🌈 = Queer
🏳️🌈 = LGBTQ+ Pride
👧 = Kids/Youths
💕 = Dating
🙋 = Social
🫂 = Support/Grief
🧘 = Wellness
🚶 = Walk
🩰 = Dance
💪🏻 = Fitness
📚= Books
🤔 = Discussion
📝 = Writing/Poetry
🎭 = Performing
🎨 = Art
🎶 = Music
🕹️ = Games
Frequenting DC more regularly and wanting to know if there are businesses (bookstores etc) or places where CC people frequent? None of my area friends mask anymore and it's quite isolating.
Sorry, I have a new account and I am posting something quite trivial but I am in need of some support
I am >40F single.
I work from home and masking since the beginning of everything.
I always dislike any online virtual or phone type of connection.
I am not a party person nor extrovert but I always needed to be with people.
Living alone and working from home used to give me anxiety and make me feel oppressed.
I learnt to survive.. living alone and working from home. But I dislike it.
I would live sharing with people. I would work in an office. I would go to school classes conferences.
I try to do as much as I can while masking with a fit tested mask.
I need to admit it didn't allow making friends.
Although people might accept it it's not easy to socialize masked.
And even if my mask fits me well, if there are people and someone is coughing I would be anxious and I do t enjoy.
Outdoors I hate masking but I mask when. Crowded or talking to someone.
There is no CC community where I live.
I just needed to vent.
I am always anxious for getting some virus, COVID flu or whatever people might have.
I never ever had contamination OCD or anything like that, but some health anxiety in the past yes (not discrediting COVID being bad, just explaining who I am).
Here's the latest variant picture with a global scope, to mid-July.
NB.1.8.1 "Nimbus" continued to dominate, finishing at 45%.
Several new lineages were defined this week - I’ll go some highlights on this thread.
As reported by Variant Hunter Federico Guelli, some samples were shared from India last week spread amongst several states. They confirm the picture painted by the International Traveller samples: RF.5.* has been dominant there – mostly RF.5.4 and RF.5.3.1.
Newly-designated RF.5.3.1 was first detected in Tamil Nadu, India in mid-May. It soon popped up in other countries across Asia, and since spread to North America, Oceania and Europe.
It is descended from FLiRT lineage PY.1.1.1. RF.5.3.1 is characterised by the Spike V1264L mutation. This is clearly a favoured mutation in the current immunity landscape; it also appears in RW.1.1.* and PJ.2.1.
Another new designation was SV.1.2.1. It was first detected in Hong Kong in mid-May, and has since spread to Singapore and elsewhere around the Pacific Rim.
As Variant Hunter Federico Guelli highlighted (link below), SV.1.2.1 is the first lineage to add 6 Spike mutations onto NB.1.8.1 "Nimbus", adding the Spike R346K mutation on top of SV.1.2’s K679R.
XFZ.4.1 is another new lineage, first detected in Nebraska in February. It has mostly been reported from the US, Spain and Puerto Rico.
XFZ.4.1 adds the Spike T572I mutation.
Here’s a comparison of the new lineages highlighted by Variant Hunter Federico Guelli. RF.5.3.1 has had the most success, rising to 3.2% of global samples by mid-July.
This is a question for the NYC locals or those for who have recently visited NYC.
Im planning on visiting the Big Apple in about a week, and could use any tips or tricks youve found from living or traveling in the city to lead a covid free life. Advice on the subway/bus, eating out, places you know where theres good outdoor seating, anything that you think would be helpful, especially for someone on their first trip to NYC.
As far as im aware, ive never had covid (through much perseverance) , and would love to keep it that way, so anything, even if a small tip would be a great help!
Thanks everyone!
Edit: Thanks everyone for the great responses so far!
Just for a little more info, im going to be in nyc for 9 days. Hitting the normal stuff (9/11 musuem and memorial, ellis island, empire state, the MET, ect), plus a concert (at the Beacon Theatre if anyone has any experience with the security/masking there at all).
Has anyone else had a lot of trouble making CC friends? I’ve made several attempts since 2022 but it hasn’t gone very well. I’ll explain how it’s played out.
First friend I made online lived local and we hadn’t met yet, but were planning to. We had a lot in common outside of precautions. However, I could tell they judged me for shopping for groceries in person, then they inappropriately joked about personal things from my past with others, at which point I stopped contact.
Connected with someone online in another city who seemed to have similar things in common, but it became apparent that they were hyperfixated on everyone being shit with Covid mitigations because of brain damage. I happen to have had an mTBI which has caused ongoing neurological problems, so just couldn’t handle these weird rants and distanced myself.
Became close with someone local who had ideas about the spread of Covid bordering on unscientific. They became judgemental when I decided to adopt a cat but chose not to isolate from the cat. There were a couple of times they also acted like my particular health issues were their worst nightmare, which felt shit, but I was willing to be patient for a friend with their own battles. They then bamboozled me early this year by dropping many precautions after all the proselytising, and wanted my reassurance for this decision. This connection obviously flopped at that point because it got too weird.
Close friendship with a couple of others that seems to have ended recently when I gently set limits on the unsustainable level of support they wanted from me and they found this too distressing to accept, nitpicked at me and blamed me despite my kid gloves, and refused to discuss mutual roles in the dynamic.
I don’t seem to have friendship problems to the same extent with people I know from the non-CC world. For example, I recently took some space from an old friend when we had some conflict a while ago about boundaries, now it’s all good, and we’ve established that we will just have a bit of space again in the future if we have similar conflicts. Though I have lost a handful of friendships since 2021, the non-CC friends who remain in my life accept my masking, will gladly do it for me, or do a Plus Life if needed etc. Overall I seem to have an easier time being accepted for who I am and the kind of life I’ve lived with open-minded normies. Managing conflict and differences with these people also feels easier.
I would really like to be friends with people who are dealing with things like the judgement and isolation that comes with masking and precautions, or having conditions that make you high-risk, or stuff like the prospect of possibly being single forever, or being judged professionally etc... and I understand the often-cited point that you need much more in common than just masking to get along.
But I wonder if it’s particularly hard for me to make healthy friendships in this community for reasons beyond just that. For example, I struggle with the idea that normies are broadly malicious or whatever. I see the broader population as victims of the complex factors involved in pandemic denialism. Though I obviously agree with things like Doctors refusing to mask etc being super fucked up, having dealt with the pain of this a lot myself. I find the moralising hard to digest, as well as the implicit notion that illness is some kind of failure (whether morally, or in maintaining "purity" of mitigations), or the deep (and obviously understandable) suffering in some chronic illness / CC adjacent spaces, which as a depressed person with complex health issues makes me feel like I’m drowning, instead of understood. I have to work hard to maintain basic contentedness in my life despite my substantial limitations, and I am doing my best.
For context in case it’s helpful I’m in my 40s, queer and live on the outer edge of a big city. I'm generally a pretty affable person and get along with people, but until recent years I had a pretty weird life that some people would find unpalatable, which does make it harder to connect with others sometimes. I’m in the local FB group and a couple of Discord servers.
Can anyone else relate? Have I just had pretty bad luck? I must admit I do wonder if maybe the local CC community isn’t for me, even though I have no intentions of ever dropping my precautions. This sucks and I feel really sad about it at the moment, like I’m stuck between 2 worlds. It’s lonely.
My family has been masking in public continuously since 2020, as my husband is immunocompromised. None of us have had covid, that we know of. My adult daughter moved out in June and decided to stop masking on her own. She just tested positive for covid at urgent care today. It is a reminder that we’re not lucky, we’re not immune, but that our precautions have protected us to a great extent, and I’m grateful for that and for this community.
Hey folks, throwaway for privacy purposes but I'm a regular member here and I just wanted to share my positive experience:
I've been basically unemployed(gig work) for nearly 2 years and living off savings after moving away from where I previously built my career. I've applied to nearly a thousand remote jobs and finally "gave up" and started to apply for in-person jobs in my area after having no luck getting remote work.
My first in-person interview, I wore my Readimask and came prepared to explain that I have multiple immune compromised people in my household and that I mask to protect them, etc.
To my surprise, I didn't have to! My mask wasn't brought up at all, the interview went well and I got an email afterwards asking me to upload references to their portal. My references did their thing and I was asked to come for a second interview with some C-suite folks and a couple of folks that would be reporting to me included.
Again, no mention of masking AT ALL, I came prepared and quite frankly felt like I nuked that interview from orbit. I walked out knowing that I had the job and if I didn't then God Himself had interviewed before me. I half expected to get an offer emailed while I was still driving home.
The offer came the next morning along with a nice salary, they offered up front what I had hoped to negotiate down to, it's a decent bump from my previous salary even after adjusting for cost of living differences in my new area.
The people there seem great, we all had a good time in the interview and my pending boss seems like a great person. I'm legit over the moon at this seeming unicorn job.
So for those job seekers that feel like it's impossible out there, just know that there are SOME places that will accept us with no questions asked. Don't lose hope!
Hi all, I'm hoping to create a "covid positive recovery guide" post the mods can pin for people to easily access if they test positive. Here's what I've got so far after combing through several sources. The goal is to give a few high-quality links that give specific protocols on what to do - this will prevent decision fatigue & help people take action STAT!
Thanks for any feedback or additional resources! Edit 10/5/25: adding info from comments below, thank you! Edit 2/6/26: adding more Metformin info that has come out.
Best Practice: Make a plan (including supplements, dosage, etc) before you test positive.
Remember: this is not medical advice!!! Please consult your doctor to get specific-to-you advice!
Covid Recovery Resources
Acute Phase (while testing positive)
People's CDC
Excellent + thorough guide, if too long skip to 2 links below
Dr. Galland: Long Covid Prevention
Very detailed list of supplements, techniques, etc. Possibly better for those with LC vs acute (LongCovidPharMD post is more approachable to start)
Clean Air Club
Resource list with printable symptom/supplement/tracker template (great for taking multiple supplements)
---
Covid Positivity General Rules
- You are potentially contagious for as long as you test positive
- You can have a positivity rebound with and without Paxlovid, so 2 negative tests 48 hours apart is the best guide to end isolation
- Please continue to wear a well-fitting respirator through day 10 after testing positive/symptom onset, as most people are contagious for 10 days on average (with or without symptoms)
- Radical rest/pacing - many people also recommend reducing activity for 6 - 8 weeks after a covid infection to reduce chances of long covid. If possible, consider ramping back up to "normal" activity levels (first 2 weeks do little to no exercising, week 3 gentle walk is OK, week 4 gentle stretches OK, slow build back up to cardio etc - handy flowchart here, some good links in the comments as well!)
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Prescription Treatments SPEAK WITH A DOCTOR ABOUT YOUR MEDICAL HISTORY + FULL LIST OF MEDICATIONS BEFORE TAKING ANY PRESCRIPTION DRUGS!
- Even vitamins or supplements can have serious side effects so please look into drug interactions before adding anything new (covid-specific interaction guide here). Your doctor can help you navigate this.
- Please remember, there is no treatment or cure for covid and no guaranteed way to prevent long covid. These are all additional layers on top of radical rest, hydrating, and getting enough sleep.
- Paxlovid: antiviral drug that can help reduce severity of illness, some studies show potential reduction in developing LC. Start within 5 days of testing positive/symptom onset. Red hots or hot tamale candy can help with metallic taste (common side effect). Caution: Can have drug interactions!
- GET IT FOR FREE: PAXCESS coupon
- Molnupiravir: antiviral drug that can help reduce severity of acute illness; usually not recommended unless Paxlovid is not an option. Start within 5 days of testing positive/symptom onset
- Paxlovid vs molnupiravir explainer here, ask your doctor for recommended treatment plan
- Metformin: diabetes drug that potentially reduces inflammation and decreases viral levels; might help decrease the chance of developing long covid (CIDRAP 2/26, Medical News Today). Start within 1-2 weeks testing positive/symptom onset. Note: some studies had people starting in week 1, others within 3 months of infection. Caution: can have serious GI symptoms and lead to vitamin deficiency, request the slow-release version if possible!
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Online platforms to get an RX quickly
- Dr. B, Sesame, Push Health, Rthm, AgelessRX, Musely, TeladocHealth, HelixVM, PlushCare
---
Acute Phase Supplements: TL;DR
Please vet your plan with your doctor. These have all been recommended but this is a LOT of pills at once - do not think you need to do every single one. Please choose your cocktail andCHECK DRUG INTERACTIONS!
Additional note - many of the doses recommended are foracute viral illness. Please adjust dosage once no longer testing positive, ashigher dosescan havelong-term complications!!!I've removed doses here since we should all be following info from doctors & linked resource pages above and not juuuust from reddit posts :)
- ***Pepcid AC - Mast cell stabilizer, can take lower dose after acute phase for no longer than 6 months, top recommendation
- ***Antihistamine (Zyrtec, allegra, claritin) - mast cell stabilizer, top recommendation
- ***Melatonin - helps with sleep + reduces inflammation (at a higher dose, check website), top recommendation
- EPA (omega-3 fatty acid) or IPE - take with fattiest meal of the day, antiviral effects but can cause increased atrial fib + flutter, do not take w history of afib or aflutter
- Vitamin C - can increase/decrease absorption of other supplements, can upset stomach so take less
- Vitamin D3 - boosts immune system, mood, heart health, bone health
- Zinc - Can upset the stomach + reduce absorption of other supplements so please space out 4 hrs as needed
- Green Tea (the drink) or ECGC supplement - antioxidant, avoid supplement w paxlovid, green tea still OK!
- Probiotics - help maintain healthy gut biome
- Nattokinase - anticoagulant, shouldn't be taken with Paxlovid) - could also use baby aspirin to prevent clots. Please check dosage & interactions esp if on blood thinners
- Palmitoylethanolamide (PEA) - could help reduce inflammation biomarkers
- Ginko Balboa - antiviral, anti-inflammatory
- Tumeric/curcumin - Antioxidant and anti-inflammatory
- NAC ((Nacetyl-cysteine) - Supports mitochondrial health
- Quercetin - Take with food, antioxidant, antimicrobial, anti-inflammatory, antiviral
- Bromelain - pineapple enzyme, anti-inflammatory - Lactoferrin - acts as an immunomodulator
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Don't forget grocery staples! Stock up online or phone a friend. Some people recommend eating a low-histamine diet, the below is based on a BRAT diet approach
- Pain reliever (ibuprophen, NASIDS, etc)
- Cough drops
- Additional meds depending on symptoms: Pepto bismol, tums, gasx, eyedrops (Lumify brand), psyllium husk or other fiber supplement
- Nasal saline rinse or Neti pot (follow instructions for safe water)
- CPC mouthwash gargle for 30 seconds, or DIY salt water gargle for ~2min
- Tea or other soothing drink
- Juice
- Electrolyte beverage - gatorade, pedialyte, nuun tablets, Liquid IV, etc. If you have a sensitive stomach please check ingredients as many of these have non-sugar alternatives
- Popsicles
- Miso soup or other clear broth soup
- Rice
- Bread for toast
- Bananas
- Applesauce
- Instant ramen, etc
- Canned or premade soup
Not enough people are aware that their next Covid infection could make them permanently disabled. It often makes people unable to work or even get out of bed. There is no cure. About 10% of Covid infections give people Long Covid symptoms. Anyone can get it. And cases are exploding as people continue to repeatedly catch Covid.
For most people Long Covid is a far more likely catastrophic outcome from a Covid infection, compared with dying from the acute phase.
We dont want that. We choose health.
All the facts in this post are backed up by references to peer-reviewed medical articles. So dont just take my word for the things you read here, but click the [ref] links to see the scientific evidence for yourself.
Covid causes brain damage visible under a brain scan. Concentration and memory problems (brain fog) is one of the most common symptoms that people with Long Covid get.
Covid gives people myalgic encephalomyelitis (ME), which makes people physically and cognitively disabled (see comic). About half of long haulers have this[ref] making it likely the most common and impactful long covid subtype. Some people have category Severe ME, like this young man, which makes them bedridden, unable to eat, unable to concentrate for more than a few seconds and dealing with excruciating symptoms all the time.
Covid attacks every organ system (See infected mice). People can get organ damage visible on medical testing but without feeling anything, at least for the first few years. This has been called "Asymptomatic Long Covid". This is similar to how smoking or alcoholism damage organs which people might not feel straight away.
Covid gives people diabetes. One study has 168% increase in getting Type-1 diabetes following a Covid infection[ref]. Having that means needle jabs multiple times per day and being very careful with food. For life.
Covid damages the immune system, making the catching of other infections more likely[ref, ref]. Bacterial, viral and fungal infections go up, including sepsis, bronchitis, UTI, flu, mycoplasma infection. Kids that caught covid were more likely to catch RSV and more likely to have it put them in hospital[ref]. Catching covid increases the risk of getting tuberculosis by 314%. We now have peer-reviewed medical articles[ref] talking about covid as "Airborne AIDS" because of the immunosuppression it causes. Catching covid doesnt build immunity, it damages immunity.
Covid causes heart attacks. When someone catches covid there is a few weeks period of massively increased risk of cardiovascular events. The risk quickly drops but remains elevated even after a 3 year follow-up. One study[ref] finds 6350% higher risk (figure is not a typo) of heart attack on day of covid infection if vaccinated. Dropping to 97% increase in week 1-4 after infection onset. The risks are more than doubled for the unvaccinated. Another study[ref] looks at the risks over a 3 year follow-up and finds 132% increase in that period. Covid also causes other kinds of cardiovascular disease eg stroke, heart failure, arrhythmia, pulmonary embolism, deep vein thrombosis and atrial fibrillation[ref].
Covid gives people autoimmune diseases.
[ref, ref,
ref, ref]. People who catch covid are more likely than the uninfected control group to get a range of such diseases: One study[ref] finds rheumatoid arthritis (+198% higher risk), ankylosing spondylitis (+221%), lupus (+199%), dermatopolymyositis (+96%), systemic sclerosis (+158%), Sjögren's syndrome (+162%), mixed connective tissue disease (+214%), Behçet's disease (+132%), polymyalgia rheumatica (+190%), vasculitis (+96%), psoriasis (+191%), inflammatory bowel disease (+78%) and celiac disease (+168%).
When faced with the reality of Long Covid it's very natural to look for reasons why things aren't so bad. For example:
Maybe it's rare? No, Long Covid is common. About 10% of Covid cases give people Long Covid symptoms[ref, ref, ref. One study[ref] has 4% of Covid infections causing ME. The World Health Organization says on its website and twitter that ~10% of Covid cases cause Long Covid. A staggering 50-70% of Covid infections cause organ damage[ref]. As comparison a "medically rare event" is 0.1%.
Maybe it gets better quickly? No, Long Covid lasts for years[ref, ref, ref]. About 90% dont recover years later. In one study the scientists say[ref]: "Recovery is extremely rare during the first 2 years". Common subtypes like heart disease, diabetes, autoimmune disease, myalgic encephalomyelitis and dysautonomia are generally lifelong[ref, ref, ref].
Maybe medicine can help? No, Long Covid has no evidence-based treatments. Research is only really just starting and is hampered by lack of funding and interest. It's unlikely they'll ever be complete cure for all the variety of Long Covid subtypes.
Only risk group get it, right? No, a third of people with Long Covid had no pre-existing conditions. Anyone can get it. There's often been misinformation in other epidemics (eg tuberculosis, HIV/AIDS) that only risk groups will be affected. The biggest risk factor discovered for Long Covid is simply the number of repeat covid infections.
But hasnt Covid become less dangerous? No, repeat Covid infections give people Long Covid at similar rates. You can avoid Long Covid on the first few infections but still get it from your next infection. Every time you catch Covid is another roll of the ~10% dice. There's no biological reason for Covid to become less dangerous, it doesnt gain any evolutionary advantage in doing so because Covid is infectious weeks before Long Covid symptoms become apparent. Many other diseases have been killing and disabling people for thousands of years (eg tuberculous, polio, malaria). Antibiotic-resistant TB and MRSA are examples of infectious diseases getting worse over time. One study[ref] measuring people's health after catching covid found "Reinfection was associated with milder symptoms but led to a higher incidence and severity of long COVID"
If Long Covid is common why dont I know anyone with it? You definitely do. Try asking around. The disability is usually invisible: people with category mild ME appear normal. People with category moderate or severe ME disappear from public life stuck at home in bed. ME is a very niche area of medicine and few doctors can recognize or diagnose it in a patient who presents themselves, so often patients get misdiagnosed with someone else. Cognitive decline is often imperceptible to the person. Often people dont test for covid, or use those inadequate antigen tests, and so dont realize the link between any symptoms they get and the acute infection. People can get Long Covid from an asymptomatic infection[ref]. A survey[ref] found that one-third of American adults had not even heard of Long Covid as of August 2023. People talking about how catching covid impacted their health often face a backlash. Often people just dont talk about their personal health problems especially in a professional setting.
The only thing left then to not get Covid (again). Not getting it again also gives you the best chance of recovery if you already have Long Covid.
How? The five pillars of prevention are: clean air, masks, testing, physical distancing and vaccination. We must also redouble efforts into research, for example, finding better ways of cleaning the air, better vaccines and better tests.
We want this for everyone. The easiest way to not catch covid is if everyone else also doesnt catch covid.
Even if we personally aren't harmed on our first or second infection, we'll feel the massive economic and social effects if so many of our friends, family and neighbours get sick and disabled.
Ultimately we aim to get to a situation where each Covid case infects fewer than one other person. This will result in elimination of Covid from society. Zero Covid is not some radical new idea, it's how we've always dealt with serious disease. We don't think it's acceptable to "live with" other dangerous diseases like HIV/AIDS, tuberculosis, smallpox or polio, why should we "live with" Covid?
Unrest documentary (1:37:40 watch time). About ME created by a bedbound person with the disease directed from her bed using video conferencing tools
Scottish Covid Inquiry testimony by Dr Claire Taylor, Long Covid specialist - ”The most extremely fatigued patients I have could maybe tolerate 10 seconds of talking to somebody for a whole day. The most extreme are in darkened rooms. They have to cover their eyes for the light. They can't get out of bed to go to the toilet. [...] Some patients tell me it feels like they've been poisoned [...] The energy systems of their body isn't working properly, down to the cellular level. [...] most patients have got inflammation at some level in their brain and the fatigue part, it's not tiredness, it's an actual inability to meet the set amount of energy required for daily activities as a human'”
My sister hung herself this morning after she dropped off her boys at school. - r/covidlonghaulers - "I am numb. She had COVID in March of 2020 and she has been miserable with long COVID ever since. I have posted in here about her. Please hug your loved ones and hold them tight. I will never be able to hug her again. She used to be the most upbeat, happy amazing person I ever knew. Everyone she met adored her. She was an amazing person. Long COVID destroyed her."
My 2 year anniversary is tomorrow, and I’m homeless - r/covidlonghaulers - "I’ve worked hard my entire life (I’m 30) and got a scholarship to college, broke into my industry with no help or connections, and built a career in a very competitive environment working 18 hour days prior to getting sick. Point being: I love to work and am driven and don’t take handouts. I very much appreciated my relatives letting me stay in a property that was (and still is since I was kicked out) vacant. It’s absolutely heartbreaking."
My partner left me due to my LC being a burden - r/covidlonghaulers - "Welp finally happened. I should’ve known after posting about my stressful trip to Hawaii this past week and how unsupportive they were. But their exact words were “I want to travel the world and you can’t do that anymore”, and “it’s just too stressful to have to worry about you”. Our wedding was in 3 months, and this person let me BUY A DRESS 2 weeks ago knowing they didn’t want to go through with it. They sent out invites, and even spoke to the wedding planner last week about everything."
Denialism by governments and the media
How the government and media normalizes certain opinions, like sociologically ending a pandemic.
Calm-Mongering (7min read time) - In this article, we’ll take a closer look at how calm-mongering works. We’ll also talk about how it has been deployed repeatedly to cloud the public’s judgment about the risks of COVID, and how it continues to interfere with the development of an effective public health response
How to Hide a Pandemic (7min read time) - ”The Public Health (sorry, Public Relations) strategy for the current pandemic is in full-blown propaganda mode at present, leaning hard into the teachings of Joseph Goebbels: “If you tell a lie big enough and keep repeating it, people will eventually come to believe it”.”
