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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

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@meganeko This studu doesn't match the available broader population data, which shows that, while only 26% are recovered after 12 weeks, 59% are recovered after one year and 79% are recovered after 2 years in the ONS data across 2 million cases. (i.e. the majority!) ons.gov.uk/peoplepopulationand

This disease is bad enough without exaggerating its badness. Many previously healthy people who contract a serious chronic illness have increased suicide risk, including long COVID patients. time.com/6186429/suicide-long- Painting this as hopeless does them a disservice imo.

@ehashman Recent Dutch study results are consistent with the Nature paper:

"Only 19% of those who became infected at least a year ago report that they have recovered largely or completely."

c-support.nu/resultaten-long-c

Whereas the ONS data you linked has this caveat:

"These are Experimental Statistics, which are statistics that are in the testing phase and not yet fully developed."

@meganeko This Dutch study is a self-selected sample of ~7k out of a registered group of 12k patients vs UK's population-wide data of 2mil (where ~420k report debilitating symptoms after 2 years). The authors don't present that recovery stat as representative of all long COVID patients, just of those in their sample. People who have registered with an org for care support are going to bias towards more severe cases because milder or resolved cases don't need the additional support.

Hence, these study findings may be entirely valid while still not being generalizable at a general population level.

@ehashman The ONS does not have actual data on 2 mil people. It's a statistical estimate based on a random sample.

The data you linked is based on responses by "8,273 participants who described themselves as having long COVID in the latest four-week period".

Also: "[…] bias may be introduced if non-response is related to long COVID, for example participants being more willing, or less able, to continue in the study because of their symptoms."

@ehashman So the ONS data is most likely biased towards less severe cases.

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@meganeko Great thread – thanks for collating all of this information!

@meganeko thank you for putting together this thread! There is some great info in here. I did reply to a few of the posts where I had some broader data; the UK's ONS stats are very high quality. My best friend is a covid researcher so I tend to get the firehose.

As for me, I've had viral-triggered RA for over a decade, and have had ME/CFS-like symptoms (generally mild, infrequently bed-bound, although much more often the past few months 😞) after another bout of illness for the past four years. You may be interested in the @/mecfs@a.gup.pe and @/chronicillness@a.gup.pe groups!

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