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).
- 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:
- "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
- "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.
- "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'.
- "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.
- "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.
- "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.
- "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.
- "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)
- "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.