Ongoing (meta)thread about :

[1/]

"*This* is the illness we are letting rip through our community, that half of patients will end up with."

"[An patient] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades."

miaow.gay/@meganeko/1084921823

[2/]

"[…] a narrative in which the primary risks from are acute illness, death, and impacts on health care systems. Yet […] can cause symptoms — often debilitating symptoms — that persist for months or even years after infection. Studies have found anywhere from 7% to 61% of those infected with Covid later experience long Covid, including those who initially had 'mild' cases and were never hospitalized."

statnews.com/2022/05/17/omitti

[3/]

"Pandemics disable people — the history lesson that policymakers ignore"

"Influenza, polio and more have shown that infections can change lives even decades later. Why the complacency over possible long-term effects of -19?"

"From the beginning of this pandemic, people with disabilities understood that the disease would target them and would swell their ranks."

nature.com/articles/d41586-022

[4/]

"The solution cannot be that everyone has to get . That is eugenics because many disabled high risk people will die and those who do not die will have serious complications and lifelong impacts to their health and wellbeing via COVID and the possibility of long COVID. Do not buy into this eugenic thinking that expects the most vulnerable to be sacrificed. is real and it can happen to anyone."

leavingevidence.wordpress.com/

[5/]

"In a decade it will be *known* that causes severe cognitive impairment & neurodegenerative disease; today millions of us are living it in reality, in our 20s + 30s + 40s, in what was supposed to be the beginning of our lives."

"Help is not coming fast enough. I don't want to be a note in a history textbook […]. I want action *now*. We know enough, *now*, to pour large scale resources into this & to stop it from happening to millions of others."

tweets.todon.eu/ahandvanish/st

[6/]

"The Reduced Brain Blood Flow Diseases? Long COVID, ME/CFS and POTS"

"Despite the fact that people with often meet the criteria for […] the survey suggests that doctors almost never diagnose long patients with either ME/CFS (3%) or postural orthostatic tachycardia syndrome () (4%)."

miaow.gay/@meganeko/1084773013

me-cvsvereniging.nl/nieuws/zie (nl)

[8/]

"Clues to Long : Scientists strive to unravel what is driving disabling symptoms"

"I consider to be a massive emergency."

miaow.gay/@meganeko/1084926972

[9/]

CDC: "post- incident conditions occur in 20%–30% of patients"

Nature: "vaccination before infection confers only partial protection in the post-acute phase of the disease"

miaow.gay/@meganeko/1083770552

Vaccination doesn’t decrease the risk of after breakthrough infections.

sciencedirect.com/science/arti

[10/]

"the greatest mass disabling event in human history"

"We’ve known for well over a year how prevalent and severe is, yet the public remains largely uninformed around its risk. While the likelihood of someone developing the condition after infection has ranged from 5% or 50% (a recent meta-analysis pins it to 20-30%, and 10% if vaccinated), the most conservative estimate still amounts to one in 20 people. A 'medically rare event' is one in 1,000."

theguardian.com/world/commenti

[11/]

"We don't remember polio nowadays, only longpolio.

In 29.5%, it presents as diarrhea, GI distress. Only 0.5% of cases present with neurological symptoms. For the vast vast majority of people who got a disease which left hundreds of thousands disabled for the rest of their lives, polio was a few days of having the shits. If that.

There is absolutely no way the US would recognize polio as a problem nowadays, or do anything at all useful to try to stop it."

tweets.todon.eu/pookleblinky/s

[12/]

"How and Chronic Fatigue Syndrome () Exhaust the Body"

healthrising.org/blog/2022/02/

"Immunological dysfunction persists for 8 months following initial mild-to-moderate SARS-CoV-2 infection"

nature.com/articles/s41590-021

"ACE2-independent infection of T lymphocytes by SARS-CoV-2"

nature.com/articles/s41392-022

[13/]

"We cannot move on from the pandemic and disregard its long-term consequences. Arguably the long-term consequences are going to be even more profound and stick with us and scar a lot of people around us for generations."

"A lot of the manifestations we're describing in this report are chronic conditions that will [affect] people for a lifetime. For example, heart failure isn't something that you wake up tomorrow and all of a sudden don't have."

publichealth.jhu.edu/2022/covi

[14/]

"'If was really as disabling as you say, don’t you think the government would be doing more to stop it?' Here’s the thing: for all the ways folks love to judge China for it’s zero-Covid strategies, have any of you stopped for one minute to ask WHY they are doing that?"

"China has seen the same data […] recognizing what that means for the workforce, the economy, healthcare systems, etc."

"China is doing everything […] to avoid a mass disabling event."

tweets.todon.eu/StephTaitWrite

[15/]

"Course of post -19 disease symptoms over time in the ComPaRe prospective e-cohort"

Recovery is infrequent. After one year, only 15% recovered; 33% of those that thought they had recovered relapsed.

nature.com/articles/s41467-022

[16/]

" could create a generation affected by disability, expert warns"

theguardian.com/society/2022/m

"The great gaslighting: how longhaulers are still fighting for recognition"

theguardian.com/society/2022/f

"If we renege on mitigations as each round of infection draws more of all ages into chronic disability, this may be the blunder that we rue for decades to come."

theguardian.com/commentisfree/

[18/]

"The medical establishment gaslights doctors, insisting is ‘psychological’"

codastory.com/waronscience/lon

[19/]

"It's on the tips of a lot of our minds and tongues, but is never outright said out loud. Let me be the one to say it. If we do not find an attendable means to slow down the spread of SARS 2, in a consistent way, this virus will lead to the collapse of civilization."

tweets.todon.eu/COVIDnewsfast/

[20/]

"I think it's also because those who haven't grappled with the real vulnerability of our bodies simply find it too scary to contend with the (seeming) randomness of . You can't rationalize a way to be safe from it."

tweets.todon.eu/meghanor/statu

[21(a)/]

"What do you have to expect?"

"1. You are disabled now. You cannot do the things you used to do.
2. Your able-bodied friends and family will mostly abandon you. This happens to all of us.
3. People in your life will constantly ask you if you're better yet, and ignore you if 'no'.
4. You likely have , which means you can't stand up without getting out of breath.
[…]"

tweets.todon.eu/mykola/status/

[21(b)/]

"7. You will have good days and bad days, but the good days will mostly feel awful. The bad days nobody will understand how anyone can just have days like that.
8. You will RAPIDLY learn about disabled culture, and either choose to embrace it or suffer alone.
9. This never ends.
10. You watch as people you know and love go about their lives as if things are back to normal, never checking in on you."

[21(c)/]

"31. Initially you will be patient with people. You will have empathy, recognize that they simply don't get it. You'll spend time trying to educate them, one by one. You may even succeed here or there.
32. Soon you will realize most people don't _care_.
33. The anger doesn't stop."

[21(d)/]

"47. You will go to your general practitioner and say 'I think I have Long Covid' and he'll calmly reassure you that there's no such thing, you just need rest.
48. The doctors will look at but not address your resting heart rate of 120."

[21(e)/]

"52. Because Long Covid is a form of Post Viral Sequelae, and because Doctors simply don't understand Post Viral Sequelae, many doctors will treat your symptoms and tell you the rest is in your head. They're wrong, but don't know how to say 'I don't know'."

[22/]

"[a thread] about metabolically-led post-exertional symptoms. This is quite possibly the most dangerously misunderstood piece of , and infection-associated chronic illness puzzle (including non-viral pathologies that involve mitochondrial damage)."

tweets.todon.eu/PutrinoLab/sta

[23/]

"Persistent Overactive Cytotoxic Immune Response in a Spanish Cohort of Individuals With : Identification of Diagnostic Biomarkers"

frontiersin.org/articles/10.33

[24/]

I had a physically active lifestyle & was working on my thesis before I got "mild" . Now I'm mostly bedridden with severe .

miaow.gay/@meganeko/1084220263

[26/]

"[…] omicron provides a poor natural boost of -19 immunity against re-infection with omicron itself even in people who are triple-vaccinated."

miaow.gay/@meganeko/1084884678

[27/]

" is a virus that causes vascular damage and inflammation."

miaow.gay/@meganeko/1084661675

"In medicine we have always treated thrombotic vasculitis and encephalitis seriously. Not left people at home and tried to rehabilitate them with no treatment "

miaow.gay/@meganeko/1084661400

Follow

[28/]

"[…] the Human Rights Board pointed out that such a policy is not allowed from a constitutional point of view. The minister was not interested."

miaow.gay/@meganeko/1084655287

[29/]

Dutch Human Rights Board: "The failure to take protective measures or measures aimed at preventing the spread of the pathogenic virus is not an option in terms of human rights."

miaow.gay/@meganeko/1084881323
miaow.gay/@meganeko/1084880607 (nl)

[30/]

"We have been lied to by the minister who does not promote public health. Every infection is a chance for and all the serious symptoms that go with it."

miaow.gay/@meganeko/1084881164
miaow.gay/@meganeko/1084879112 (nl)

[31/]

"'At this point in only a problem for people w/ preexisting conditions and/or weakened immune systems.' Even if that were true, a lot of you are missing one key point: If you’ve already had Covid before (which the majority of you have,) guess what that makes you now?"

"if you’ve had Covid […] you should consider yourself a high-risk person with a weakened immune system, and follow […] precautions […] recommend for 'those' people […] you ARE 'those' people"

tweets.todon.eu/stephtaitwrite

[32/]

"[…] neuroinvasiveness of SARS-CoV-2 […] neurological symptoms […] similar to hallmarks of amyloid-related neurodegenerative diseases such as Alzheimer’s and Parkinson’s"

"The worst-case scenario given the present observations is that of the progressive neurological amyloid disease being triggered by -19."

miaow.gay/@meganeko/1085053802

[33/]

"[…] these studies have shown that the high global prevalence of [Omicron] infections and reinfections likely reflects considerable subversion of immune recognition at both the B, T cell, antibody binding and nAb level, although with considerable differential modulation through immune imprinting. Some imprinted combinations, such as infection during the Wuhan Hu-1 and Omicron waves, confer particularly impaired responses."

miaow.gay/@meganeko/1085092021

[34/]

"19% of adults in the US who have had currently experience "

"Overall this means 7.5% of adults in the US have "

miaow.gay/@meganeko/1085343436

[35/]

"The prevalence of [in children and adolescents] was 25.24%"

"[…] many individuals experience debilitating -19 symptoms months later"

"[…] many of the symptoms […] fatigue, sleep disorders, orthostatic intolerance, decreased concentration […] exercise intolerance […] body temperature dysregulation, dysfunction on heart, rate variability and palpitations […] are commonly present in ."

miaow.gay/@meganeko/1085564332

[36/]

"Contrary to the myth that we are sliding into a comfortable […] relationship with a common-cold-like, friendly virus, this is more like being trapped on a rollercoaster in a horror film."

"Not having got after a prior infection […] offers no guarantee"

"[…] ever-growing […] rather desperate long-haulers […] well over two years"

"They need answers, treatments – and to know that we take the situation sufficiently seriously to stop creating more cases"

theguardian.com/commentisfree/

@meganeko This seems like a large overestimate.

The best data I've seen has been from the ONS. This paper which analyzes it suggests a 5% rate of long COVID in children (compared to the overall rate of ~10% in vaccinated adults, of which not all cases are debilitating). Which is, to be clear, an absolutely terrible number that needs much public health protection. The false idea that "covid doesn't seriously affect children" needs to die. twitter.com/viropractor/status ons.gov.uk/peoplepopulationand

@ehashman The ONS data is almost certainly an undercount, since it excludes children without a positive test from the long covid group whilst the control group almost certainly includes children that had asymptomatic infections.

Having said that, yes, this review also has it's limitations and 25% does seem rather high. If you look at prevalence of specific symptoms though, a 7% prevalence of orthostatic intolerance alone is really bad, and a LC prevalence of 10-15% seems more likely than 5%.

@meganeko a number of prominent immunologists have flagged this post as misinformation (COVID does not damage the immune system of anyone who contracts it?! If that were the case, we would see the effects at the population level) but I can't actually find their rebuttals because the tweet author locked her account

@ehashman Then why is there so much research showing causes immune dysregulation?

"The study found substantial dysregulation […] strongest at 12-weeks […] still evident in most cases for up to six months and potentially even longer"

"The level of disease severity doesn't translate directly to the level of immune dysregulation"

Source: medicalxpress.com/news/2021-08

Research: "Long-term perturbation of the peripheral immune system months after SARS-CoV-2 infection"

bmcmedicine.biomedcentral.com/

@meganeko I've passed that on to an expert friend of mine because I don't feel qualified to interpret the specific results.

I will note that the study states "None of the participants had received a COVID-19 vaccine at the time of sample collection." The risk of severe disease and long COVID has been shown to be significantly higher in the immunonaive, so we can't extrapolate from these results to a triple-vaxxed general population.

@ehashman Significantly reduced risk of severe acute disease? Yes, thankfully.

Significantly reduced risk of ? Not so much.

Largest study found no difference:

sciencedirect.com/science/arti

This one found 15% risk reduction when vaccinated:

nature.com/articles/s41591-022

And let's not forget this study:

miaow.gay/@meganeko/1085092021

@ehashman FYI: you're very lucky I didn't block you immediately for coming into one of my treads accusing disabled people (like Stephanie Tait and myself) of "misinformation" without even a shred of proof.

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