tomkindlon, to coronavirus
@tomkindlon@disabled.social avatar

(pay wall)
"Parents of children with claim they have been accused of faking or exaggerating their child’s illness, leading to social services’ involvement and... court cases and the threat of the child’s removal from the home."

https://inews.co.uk/news/parents-children-long-covid-accused-making-up-3034629

@longcovid

@covid19
@novid

justyourluck, to random
@justyourluck@masto.ai avatar

ONE BILLION

1,000,000,000

"By 2033, a billion people are expected to suffer from Long Covid - most of them in the economically active age groups."

https://www.manager-magazin.de/lifestyle/long-covid-konferenz-wir-muessen-uns-endlich-eingestehen-wie-gewaltig-dieses-problem-ist-a-4389644b-1795-4acf-bccf-759d6dce1982

The is STILL going on‼️

sucks more than you can imagine‼️

or as the WHO now says it spreads ‼️

with or better & Stay Safe‼️ 😷🫶

oldperl, to mecfs German
@oldperl@mastodon.online avatar

👇☝️ #LongCovid #PostCovid #fatiquesyndrom #mecfs @longcovid

schaumburgernachrichten@schaumburg.social - Long Covid: Nehmen wir Betroffene nicht ernst genug? - Viele von Long Covid Betroffene fühlen sich nicht ernst genommen. Georg Schomerus forscht zur Stigmatisierung und sagt: Die Krankheit wird in der Tat missverstanden. Was es bedeuten kann, wenn selbst Ärztinnen und Ärzte die Symptome fehl­interpretieren. https://www.sn-online.de/gesundheit/long-covid-nehmen-wir-betroffene-nicht-ernst-genug-P3WNZKXRLNE4JOT6OVANSQ3M5I.html

themaskerscomic, to random
@themaskerscomic@forall.social avatar

I think it is really important we speak out against this bill as it could be copy-catted in other states, and its just messed up, so I started an email campaign: TIME-SENSITIVE!: Join the email campaign to stop HB 237 from passing in NC House of Representatives! If passed, this bill will make it illegal to wear a mask in public even for medical reasons, more info at https://the-maskers-comic.yolasite.com/stophb237 We need to send these emails out ASAP!

tomkindlon, to HR
@tomkindlon@disabled.social avatar

Work and vocational rehabilitation for people living with long covid

https://www.bmj.com/content/385/bmj-2023-076508

"For some people, disabling symptoms lead to complete inability to work. In less extreme cases, “work instability,” which is a mismatch between patients’ functional abilities and the demands of their work, can threaten employment if not addressed."

Hashtags:
@longcovid


@covid19

corrosivedream, to mecfs German
@corrosivedream@troet.cafe avatar

"Bis zum Jahr 2033 werden voraussichtlich eine Milliarde Menschen an #LongCovid leiden – die meisten davon in den ökonomisch aktiven Altersgruppen."

Es wird Zeit für ernsthafte Therapieforschung und Infektionsprävention durch #saubereLuft!

#Covid #PostCovid #MECFS #Corona #Wirtschaft

https://www.manager-magazin.de/lifestyle/long-covid-konferenz-wir-muessen-uns-endlich-eingestehen-wie-gewaltig-dieses-problem-ist-a-4389644b-1795-4acf-bccf-759d6dce1982?d=1715868138

tomkindlon, to longcovid
@tomkindlon@disabled.social avatar

Cardiopulmonary Exercise Testing in Children With : A Case-controlled Study

https://t.ly/Wb1ps

"Children with have a reduced VO2 peak […], abnormal cardiovascular efficiency (VO2/HR% pred), pathological VE/VCO slope […], and abnormally reduced slope of VO2 work" "48% of the LC patients had a suspicious phenotype for pulmonary hypertension."

Hashtags:
@longcovid

antiaall3s, to random
@antiaall3s@chaos.social avatar

Masks are now outlawed in North Carolina, among other reasons because cops want to identify people at political protests.

I recently got so angry when watching the protesters against Tesla near Berlin. They were wearing masks. Now you might think, that's a good thing. But at most anarchists gatherings here in Europe they never wear masks anymore. So they were wearing the masks for anonymity. If they use it for that reason, it will backfire and get outlawed.

And who will suffer from that?

antiaall3s,
@antiaall3s@chaos.social avatar

Ever since i have #LongCOVID, one of the issues preventing me from going to protests is the fear of getting arrested. There's always a possibility of that. The idea of being thrown into a cell or a cop car and maybe forced to take off my ffp2-mask is a total nightmare.

People who NEED to keep wearing masks, because they are immuncompromised or chronically ill, do not have the possibility to wear masks as an act of civil disobedience.

maegul, to longcovid
@maegul@hachyderm.io avatar

I'm slowly realising that I probably have some mild

Since having covid (now had it twice since 2022): iron deficiencies, breathing problems, constant asthma, and now a sudden allergy to some foods apparently.

My partner and I have been careful throughout the pandemic but clearly not careful enough at times (twice each) since "opening up".

And though it could be far far worse, I feel pretty violated right now TBH.

@coronavirus
@longcovid

currentbias, to random
@currentbias@open-source-eschaton.net avatar

"... how many people know COVID-19 infection can cause headaches and migraines weeks or months later? Or that it can cause fainting? Nausea? Heart attacks? Cardiac complications in adults and children? Embolisms? ADHD-like symptoms? Neurological issues? How many people are suffering the long-term sequelae of COVID-19 infection but not drawing the causal link and instead ascribing their new conditions to bad luck or aging?"

https://johnsnowproject.org/primers/honesty-about-covid-is-essential-for-progress/

#covid #LongCovid #PublicHealth #CovidIsNotOver

violetblue, to fallout
@violetblue@mastodon.social avatar

North Carolina bans medical masks (seriously), US/UK/NZ surging, covid 60% deadlier than influenza, weird new variant symptoms, US: no fall vax for uninsured, covid ripping through New Zealand schools, rAW MiLk eNTHusIaSTs, masking on the Fallout set, and more.

Link: https://www.patreon.com/posts/pandemic-roundup-104353958

melsdung, to mecfs German
@melsdung@nrw.social avatar

Heute mal wieder im Büro gewesen, wo der soziale Druck - ausgesprochen oder unausgesprochen - auf mich immer am stärksten wirkt. Übertreibe ich nicht vielleicht doch mit der Maskenkonsequenz?

Und dann kommt man nach Hause und liest das. 🤯

"Bis zum Jahr 2033 werden voraussichtlich eine Milliarde Menschen an Long Covid leiden – die meisten davon in den ökonomisch aktiven Altersgruppen."

https://www.manager-magazin.de/lifestyle/long-covid-konferenz-wir-muessen-uns-endlich-eingestehen-wie-gewaltig-dieses-problem-ist-a-4389644b-1795-4acf-bccf-759d6dce1982

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Interview by David Tuller DrPH with Co-Organizator of Next Week's Unite To Fight Long Covid & ME/CFS Conference

https://virology.ws/2024/05/08/trial-by-error-interview-with-co-organizator-of-next-weeks-unite-to-fight-long-covid-conference/

Tuller speaks with Marco Wetzel, one of the five German patients who organised the conference.

@mecfs_de @mecfs

@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Trial By Error Reporting on ME, ME/CFS, #longCovid, & "Medically Unexplained Symptoms"

A crowdfunding for David Tuller DrPH's important work on "debunking awful research". This will secure his academic position at Berkeley until December 31, 2024

https://crowdfund.berkeley.edu/project/42302

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

simon_michalke, to mecfs German
@simon_michalke@social.diehumanisten.de avatar

"Believe your patients. The vast majority of people don't pretend to be sick. They pretend to be well."

Important words from Pam Bishop

Thank you for the awesome talk!

Tinu, (edited ) to random
@Tinu@mastodon.social avatar

Good day to you, fellow comrades in the resistance to fascism.

I come to you once more, to ask for your assistance

in defraying the costs of beating Leukemia with a monthly infusion

of baby unicorn tears.

Here's some photos of the fun times I had at chemo. I can accept your generous help via the links below.

https://Patreon.com/Tinu

https://account.venmo.com/u/TinuWrites

https://cash.app/$TinuWrites

/ @mutualaid

Tinu,
@Tinu@mastodon.social avatar

And to think I have to thank for bringing back the cancer I beat in 2016.

That. can bring back or cause cancer is in scharly journals now.

But when I shared that the hospital oncologists said that is what happened, I was called every name.

Fun times.


tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New research from UK team:
Examining well-being and cognitive function in people with and ME/CFS, and age-matched healthy controls: A Case-Case-Control Study

Free full text:
https://www.sciencedirect.com/science/article/pii/S0002934324002730

Hashtags:
@longcovid

@mecfs

ToveHarris, to random German
@ToveHarris@mastodon.social avatar

Honesty About Covid is Essential for Progress

https://johnsnowproject.org/primers/honesty-about-covid-is-essential-for-progress/

"Unfortunately, the newest widely circulating pathogen in the human population uses a broadly expressed ACE2 receptor to infect cells, meaning it can damage almost any part of the body."

"They want your ignorance and incur no cost if you are harmed by being repeatedly infected by COVID-19 or any other pathogen that might be surging in its wake."

antiaall3s, to random
@antiaall3s@chaos.social avatar

Some pretty great talks at Day 1, but literally ALL the people giving talks are only active on and most of the discussion happens there?!

I could not go back to that platform for a million moniz, but we do miss out on a lot here.

Switching to Mastodon has been a very isolating experience for me. Almost the entire community is still active on that horrible fascist website. I do find most information here eventually, but second hand.

https://conference.unitetofight2024.world/tweets

antiaall3s,
@antiaall3s@chaos.social avatar

Long Covid Phenotyping as an aid to successful treatments by Dr. Rae Duncan

On why phenotyping the various strains (or combinations thereof) of are the most pressing issue we need to start addressing.

antiaall3s,
@antiaall3s@chaos.social avatar

Whenever i hear about severe cases of ME/CFS or Long COVID, i realize that i probably have a medium or even mild case. But then again, even such a medium or mild case can be so very debilitating. And all this with the sword of damocles hanging over it, that symtoms could always get worse.

No one wants this horrendous illness. Stop the gaslighting!

We need more ME/CFS Biohackathons.

grimalkina, to random
@grimalkina@mastodon.social avatar

Went to a new trainer today as I continue on my sometimes terrifying recovery journey* and I'd messaged them before about my accessibility needs and she whipped open the garage door of the training space as I walked up and said "woo let's get that ventilation!!" 😭

So rare and amazing to be celebrated not treated like a huge imposition

*I don't have PEM I am extremely informed do not give me any medical advice

Frieke72, to mecfs Dutch
@Frieke72@mastodon.social avatar

Had just enough energy to listen in on 3 of the 20minute webinars today. https://unitetofight2024.world/program/
Gives a bit of hope for all patients who are suffering from post acute infection diseases. Really love to see the science growing.🙏

It goes on for another 2hours and tomorrow. You can still join. I think presentations will be available later too
(See birdsite for loads of tweets. The LC/MEcfs community is big there)


@longcovid @LongcovidNieuws

insavandenberg, to random German
@insavandenberg@mstdn.social avatar

"Das Kranksein hat mich gelehrt, geduldiger zu sein. Ich muss mich mit meiner verinnerlichten Behindertenfeindlichkeit auseinandersetzen und bin dadurch anderen gegenüber mitfühlender. Aber im Allgemeinen ist es durchschlagend negativ: Viele Beziehungen haben darunter stark gelitten, ich habe einen großen Teil meines sozialen Lebens verloren. Als ich krank wurde, war ich erst seit eineinhalb Jahren in Berlin, sodass ich auf keine langfristigen Beziehungen zurückgreifen konnte.

🧵

tobi82,
@tobi82@mstdn.science avatar

@insavandenberg @tazgetroete

Immer wieder erstaunlich das man auch in 2024 noch glaubt #LongCovid kann man bald heilen oder bald behandeln.

Seit wann kann man denn #MS heilen? Postvirale Erkrankungen sind ein schwieriges Feld.

tobi82,
@tobi82@mstdn.science avatar

@schrottie @insavandenberg @tazgetroete

Ja 👍 Das mit der Risk/Life Balance wird plötzlich nen bissl schwierig, wenn man auf der Risikoseite „unheilbar“ bis „terminal“ sieht. Lohnt sich dann der Aperó noch 🫣?

Sie wollte auch einfach wieder normal leben, so wie 2019.

Nun, der Anteil der #LongCovid-Patienten in der Bevölkerung ist jetzt etwa auf dem Niveau der Diabetiker. Ich weiss nicht wie lange das gut gehen kann.
Versorgung ist nicht möglich.

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