Context: I wrote the following on Facebook for a general audience. I'm posting it here because I'm very concerned. I'm severely disabled from a presumable* COVID infection 17 months ago. I haven't done deep dives into (m)any of these, so I'm plausibly wrong. However, this is the main position in the long COVID community. Sorry not sorry that it isn't polished. This post does not include new strains, which might also be worrisome (https://twitter.com/PeacockFlu/status/1504158873938272269?t=y2l5alk3ZjUOaDghjquUrg&s=08).

Summary:

  • Please keep protecting yourself (and others)! 🙏🏻😷
  • I estimate you're at 1-15% risk of developing long-term disability, at the population's average exposure rate
  • Successive organ and immune damage from infection is worrisome
  • Limit exposure, detect early and try to treat early

—--

Today, mask mandates for public transport are being dropped in The Netherlands, in line with Western countries of just letting the virus spread.

This is based on a lot of misconceptions, which I hope to correct below:

  1. "Omicron is mild, you can see this in the hospitalisation data"

The hospitalisation data skews the picture , as more people are being treated with oxygen at home (see picture). And just like many other viruses (polio, HIV), the big concern isn't about acute death, but long-term disability. https://twitter.com/Datagraver/status/1504424119273771011?s=20&t=QVKEResRBR_VpcEbR9cEZw

  1. "You can't have a lockdown forever"

There are many ways to reduce case amounts and severity. Wearing the proper masks (at least N95) indoors, ventilation, antivirals, long-lasting vaccine protection, continued testing. Proper long COVID care.

  1. "I'm going to have covid anyway, it doesn't matter when I get it"

Every time you get covid your immune system seems to get weaker, not stronger/better attuned. You do not develop long-term immunity from infection. https://science.thewire.in/health/omicron-t-cells-science-why-update-covid-19-vaccines/

With every reinfection, severity increases (on average). This could also translate into an increase in risk of long covid. https://twitter.com/SiebeRozendal/status/1506361659396403205?s=20&t=QVKEResRBR_VpcEbR9cEZw

The goal has simply shifted from 'don't get covid' to 'get COVID as few times as possible'.

  1. "The risk of long COVID is low, especially when vaccinated/boosted"

Conservative estimates put the risk at 2-3% of long covid after 6 months https://tinyurl.com/3c2kzs7p

others at 10 to 30%. https://www.sciencedirect.com/science/article/pii/S1198743X22000386

Vaccination reduces this by maybe half (large differences between studies of reduction by 0 to 90%), so that's 1-15% risk of chronic disability for you https://ukhsa.koha-ptfs.co.uk/cgi-bin/koha/opac-retrieve-file.pl?id=fe4f10cd3cd509fe045ad4f72ae0dff

You may not hear of all cases in your social network. Many people are misdiagnosed/not diagnosed.

  1. "Most long covid cases were hospitalized send had a severe acute phase. Therefore, omicron is fairly harmless"

Long covid seems correlated to initial viral load. However, about 90% report not being hospitalised, and I estimate that about 40-50% had a mild or asymptomatic acute phase https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2

We do not have much data on long COVID from omicron, but I'm not hopeful.

  1. "For most people, long COVID is like being a bit out of shape, and having a bit less energy"

I can't find reliable data on this, but I estimate about 20% of patients currently unable to work at all. This will likely increase over time. Many patients are homebound or bedbound, unable to attend upright for longer than 10 minutes, and in severe pain on a daily basis.

  1. "I'm healthy and psychologically stable. I won't get long covid"

Psychological health isn't a (large) risk factor at all: https://www.medicalnewstoday.com/articles/long-covid-risk-factors-and-how-to-mitigate-them#Vaccination

You may also have a genetic predisposition to clotting, a less diverse microbiome than you thought, or simply be unlucky.

  1. "Well, at least we have good healthcare systems to depend on"

If you get long covid, you're probably more likely to be diagnosed with burnout, depression, or anxiety instead.

Only a fraction of patients who have orthostatic intolerance (inability to maintain normal blood volume in the brain upon standing) gets diagnosed with this, despite it being very easy to diagnose.

Doctors don't know how to treat this. (Yet)

  1. "You can't expect doctors to know how to treat long COVID. It's a new disease"

Long covid has strong overlaps with ME ("chronic fatigue syndrome"), the most neglected disease relative to its health burden. https://www.healthrising.org/blog/2021/04/03/chronic-fatigue-syndrome-most-neglected-disease-nih-national-institutes-health/

Doctors don't know anything about post infectious diseases, because research and education has been systematically obstructed by a small group of psychologists and psychiatrists, for decades. They have rejected loads of biomedical evidence in favour of their "fear-avoidance" model which questions patients' sanity. https://journals.sagepub.com/doi/full/10.1177/1359105317707216

The Netherlands is one of the worst in this, and the only treatments being researched for long covid reflect this: making people exercise (which makes a significant proportion of cases worse) and applying cognitive behavioural therapy to address "false illness beliefs" - this is institutionalised medical gaslighting. https://www.virology.ws/2022/01/07/trial-by-error-dutch-cbt-trial-targets-dysfunctional-beliefs-about-fatigue-in-long-covid-patients/

How to limit your risk: Limit exposure (buy an elastometric mask, like the Gill Mask for example, which is supposedly comfortable and doesn't look as extreme as other elastometric masks; https://www.gillmask.com/collections/gill-mask-pro/products/gill-mask-pro-white?variant=41711356543145) Detect COVID early and treat with antivirals (not very accessible, but maybe some members are able to be creative here)

—-------------------

*I never got positive confirmation it's covid, but my guesstimate (statistical model) suggests >90% likelihood, driven mostly by high amount of cases and plenty of false negative results in both PCR and antibody tests.

P.S. if you have long COVID or a related post-infectious disease, feel free to contact me. I'm determined to beat this thing and I'm developing my network of other determined and well-informed patients.

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I'm sorry, but I have a very hard time believing your 1-15% range for long-term disability. If 15% of the labor force lost (say) half their productivity, we would already be seeing severe economic consequences across the board (all industries, worldwide).

I didn't follow your calculations, but I do know that some monitoring projects define long covid as "having any symptom on a list (fatigue, more frequent headaches, etc) a few months after infection". This is the proper definition from a scientific perspective: if we want to understand long covid, we want to capture it at all levels of severity and in many different manifestations. But this obviously produces a huge overestimate in terms of severe cases, as it also captures the upper range of the usual fluctuations of these symptoms.

The 15% is an upper estimate of people estimating 'some loss' of health, so not everyone would be severely disabled.

Unfortunately, the data isn't great, and I can't produce a robust estimate right now

FYI,  Alyssa Vance provided additional disability statistics https://www.lesswrong.com/posts/4z3FBfmEHmqnz3NEY/long-covid-risk-how-to-maintain-an-up-to-date-risk?commentId=GKmqE9PKXfRSKb5PC which suggest "serious, long-term illness from COVID is pretty unlikely." 

Siebe, I would be interested to hear your take on that, since you seem to have a substantially more pessimistic view of this.

First of all, I'm sorry to hear about your disability from long COVID. From my reading on the symptoms, it sounds like a terrible experience, particuarly as for you it has dragged on for so long.

From your "conservative estimate" link, dated March 3, 2022:

Of [1.5 million] people with self-reported long COVID, 344,000 (22%) first had (or suspected they had) COVID-19 less than 12 weeks previously, 1.1 million (71%) first had (or suspected they had) COVID-19 at least 12 weeks previously, and 685,000 (45%) first had (or suspected they had) COVID-19 at least one year previously.

The percentages total to 138%, which is confusing because the criteria for "date of first (suspected) COVID-19 infection" is defined in such a way as to avoid two answers being true for one person.

These time brackets would be approximately Jan-March, 2022, March-Dec, 2021, and prior to March 2021, respectively. Looking at the cumulative confirmed cases for the UK, these brackets correspond to 7.55 million, 8.76 million, and 4.2 million people. Delta became the dominant strain in the UK in mid-June, 2021, while Omicron became dominant in mid-December, 2021. Because confirmed cases were nearly flat prior to Delta's emergence, these three time phases fairly closely correspond to the periods of dominance of Omicron, Delta, and Alpha strains, respectively. I will therefore refer to them as the "Omicron phase," "Delta phase," and "Alpha phase" going forward.

Of 20.68 million total confirmed UK cases, the Omicron phase is about 37% of cases, Delta is about 42% of cases, and Alpha was about 20% of cases.

Given that the percentages above total to 138%, I'm not sure if the following analysis is valid. But I'll run with it. Based on the given percentages, Omicron is significantly underrepresented in terms of long COVID cases relative to total Omicron cases. Delta and especially Alpha are overrepresented in terms of long COVID. This tracks with the idea that severity of illness, due both to the intrinsic severity of the virus and to vaccine and treatment availability, has been an important driver of long COVID.

This is older than I'd like (July 2021), but it's a place to start. Long covid—mechanisms, risk factors, and management

Risk factors for not returning to “usual health” included age (P=0.01), with the ≥50 years age group having the greatest odds ratio, and number of pre-existing medical conditions (P=0.003), with a greater number of conditions associated with a greater odds ratio of not returning to “usual health.” Of the pre-existing conditions, having hypertension (odds ratio (OR)=1.3, P=0.018), obesity (OR=2.31, P=0.002), a psychiatric condition (OR=2.32, P=0.007), or an immunosuppressive condition (OR=2.33, P=0.047) corresponded with the greatest odds of not returning to “usual health.”18

A cross sectional study identified an association between the severity of acute covid-19 infection and post-recovery manifestations in people who have had covid-19, showing that a more severe acute phase may transform into the development of more severe symptoms of long covid.43 A cohort study, meanwhile, corroborated this finding, with patients with more than five symptoms during the initial covid-19 infection and those that required hospital admission more likely to experience long covid symptoms.34

Based on this, claiming that the reader's individual risk of long COVID corresponds to the population rates seems somewhat misleading, if an understandable place to start thinking about the question. We have data that allows the reader to consider whether or not they are likely to be in a relatively low- or high-risk group for long COVID. Studies exist showing no association between COVID severity and long COVID risk, but I haven't done any kind of a deep dive here and it would be worth looking into more deeply.

If severity of COVID does correspond to prevalence of long COVID, then we can expect continued lower rates of long COVID in the future as treatments improve and become more accessible, particularly if COVID retains its current relatively mild individual severity over the long term. There is no guarantee that it will, but we can continue to monitor for new, more infectious and more severe strains, while resuming normal life in the meantime.

These are only my first thoughts on poking into a couple of your links. I'm particularly interested in updated and better information on:

  1. Anys link or evidence against links between COVID severity/strain/treatment and long COVID
  2. The distribution of long COVID duration
  3. Long COVID severity by symptom (i.e. if sufferers experience fatigue, what is the distribution of fatigue severity?)
  4. Evidence of long COVID rates and risks based on clinical diagnosis rather than self-reported data

Awesome in depth response! Yes, I was hoping this post to serve as an initial alarm bell to look further into, rather than being definitive advice based on a comprehensive literature review.

I can't respond to everything, at least not at once, but here's some:

  • categories of 'at least 12 weeks' and 'at least 1 year' do overlap, right?
  • I think the different waves may have had different underreporting factors, with least underreporting during Delta, so we can't take those rates at face value, and I prefer using estimated cases whenever possible

The wording is “less than 12 weeks” rather than “at least 12 weeks,” so the categories shouldn’t overlap, time wise. Under the theory that omicron is underreported and delta more accurately reported, this bolsters the case for long COVID being linked to disease severity - with the caveat about the percentages not adding to 100% in mind.

Uhm, no? I'm quoting you on the middle category, which overlaps with the long category.

Also, there's no need to speculate, because there have been studies linking severity and viral load to increased risk of long COVID. https://www.cell.com/cell/fulltext/S0092-8674(22)00072-1


Uhm, no? I'm quoting you on the middle category, which overlaps with the long category.

I see what you mean. The study's criteria, which I didn't quote here, states that the earliest time at which the respondant met any of the conditions for a COVID infection should be counted. I remain confused (not by you, by the UK study)!

Also, there's no need to speculate, because there have been studies linking severity and viral load to increased risk of long COVID.

I don't see myself as speculating, so much as emphasizing that contradictory evidence exists even about the association, not to mention causality.

Thanks for this. Prompted by this and other recent posts, I'm trying to mobilize more of a systematic effort to maintain an updated assessment of Long COVID risk -- if you're interested, please chime in here! https://www.lesswrong.com/posts/4z3FBfmEHmqnz3NEY/long-covid-risk-how-to-maintain-an-up-to-date-risk

Have you seen this post? What are your thoughts on the risk estimates? https://www.lesswrong.com/posts/mh3xapTix6fFtd3xM/the-long-long-covid-post

Also see my comment discussing another study estimating severe disability risk differences: https://www.lesswrong.com/posts/mh3xapTix6fFtd3xM/the-long-long-covid-post?commentId=ejDaeDAhccMoAJT4o

I had not seen it, because I don't read this form these days. I can't reply in too much detail but here are some points:

I think it's a decent attempt, but a little biased towards the "statistically clever" estimate. I do agree that many studies are pretty done. However, I've seen good ones that include controls, confirm infection via PCR, are large, and have pre pandemic health data. This was in a Dutch presentation of a data set though, and not clearly reported for some reason. (This is the project, but their data is not publicly available: https://www.lifelines.nl/researcher/explore-lifelines/covid-data).

It is really difficult to get a proper control group, because both PCR tests and antibody tests have significant false negative rates.

Furthermore, the Zvi asserts that self reports lead to an overestimate because they are inaccurate. I agree that self reports are inaccurate, but there will definitely be people with long COVID that think it's something else (e.g. burnout), so this can really go both ways.

In addition, we have biological data with a control group and prepandemic data: https://www.nature.com/articles/s41586-022-04569-5 There were many significant differences in the brain scans of these groups. I can't do the digging to translate those data into frequency estimates though.

I also think that for outsiders, long COVID symptoms sound vague: fatigue, brain fog, etc. In fact, there's a lot of clear symptoms, such as orthostatic intolerance, post exertion al symptom exacerbation, heart palpitations, muscle tremors, oxygen saturation drops.

Lastly, I think we should be careful to assess future risk based on past risk: variants change, vaccine protection changes, and as I write above, there's some initial data suggesting reinfections are worse due to a weakened immune system.

This is really scary stuff. I'm really sorry to hear that your case is severe.

I've heard of plenty of people complaining about "never having been the same" since they took the vaccine. Mostly chronic fatigue complaints, some headaches. Mostly not severe. Just my empirical data, no judgements because I haven't even formed one.

I'd like to recommend you, and everyone else affected by this (or any other chronic illness in fact), to immediately get on a ketogenic diet with intermittent fasting. Over the years I've been getting tons and tons of empirical evidence in Facebook groups, from people who've literally cured themselves of all kinds of chronic illnesses just by doing this. Some also benefit from adding an elimination diet on top of it. Vitamin D3+K2 supplement is also extremely important since I've heard that almost everyone is deficient in D3.

And I really mean this - this can be, in my opinion, even more effective than drugs. It should, in fact, become one of the flags of Effective Altruism.

Yes, vaccine injury is actually rather common - I've seen a lot of very credible case reports reporting either initiation of symptoms since vaccine (after having been infected), or more often worsening of symptoms. Top long COVID researchers also believe these.

I don't think the data for keto is that strong. Plenty of people with long COVID are trying it with not amazing results.

"I've seen a lot of very credible case reports reporting either initiation of symptoms since vaccine (after having been infected), or more often worsening of symptoms. Top long COVID researchers also believe these."

Interesting!

"I don't think the data for keto is that strong. Plenty of people with long COVID are trying it with not amazing results."

Keto + intermittent fasting + elimination diet + vitamin D3+K2. Often all of these 4 are needed. Which one is more important depends on the chronic disease. For instance, I've heard from EA sources how vitamin D3 supplementation alone has massive success in curing cluster headaches (one of the most painful conditions) where medications have very little success. Or how elimination diet is the deciding factor for some auto-immune diseases.

Or how my mom suffered from horrible body pains from years, having seen dozens of doctors, until one told her to go do yoga, and after 6 months all pain was gone and has remained so for the last 15 years.

I'm not doubting that many with long COVID might indeed fail even after implementing all 4. But when you're desperate you try everything. Sometimes the cure might be what seems like a trivial lifestyle change - I've seen it a thousand times.

You have far more faith in the rationality of government decision making during novel crises than I do.

Healthcare workers can barely or often not at all with with long covid.

Lowering infection rates, remaining able to work, and not needing to make high demands on the healthcare system seems much better for the economy. This is not an infohazard at all.