#notrecovered — Public Fediverse posts

Liebe #LongCovid Bubble,
vor 4 Jahren begann meine Odyssee mit einer Krankheit, die bis vor kurzem niemand kannte. Jetzt bin gesund.
Aber was bedeutet das, was ist geblieben und wie bin ich gesund geworden. Ich habe versucht, meine Erfahrungen und Entdeckungen irgendwie in ein Video zu pressen ❤️ vielleicht hilft es ja jemandem.
https://www.youtube.com/watch?v=_CGlyix80s8

#LongCovid #PostCovid #MECFS #Corona #notrecovered

#LongCovid, #ME_CVS , #Lyme, #POTS en #Fibromyalgie patiënten vragen jullie hulp

https://www.openpetition.eu/be/petition/online/long-covid-me-cvs-lyme-pots-en-fibromyalgie-patienten-vragen-jullie-hulp

#NotRecovered

#LongCovid, #ME_CVS , #Lyme, #POTS en #Fibromyalgie patiënten vragen jullie hulp

https://www.openpetition.eu/be/petition/online/long-covid-me-cvs-lyme-pots-en-fibromyalgie-patienten-vragen-jullie-hulp

#NotRecovered

Last week i entered year five of suffering from this illness.

I am so tired of being sick. I am so tired of being made to feel like this is somehow my fault. I am so tired of feeling like a failure. I am so tired of having no friends, no work, no future, no fun.

I am so tired.

No one seems to care, except my wonderful partner, who has to shoulder so so much of the care work, way too much.

#LongCovidAwarenessDay #StillAlive #LongCOVID #NotRecovered

Last week i entered year five of suffering from this illness.

I am so tired of being sick. I am so tired of being made to feel like this is somehow my fault. I am so tired of feeling like a failure. I am so tired of having no friends, no work, no future, no fun.

I am so tired.

No one seems to care, except my wonderful partner, who has to shoulder so so much of the care work, way too much.

#LongCovidAwarenessDay #StillAlive #LongCOVID #NotRecovered

"The sacrifice of bodies for the capitalist project was always going to catch up to us all eventually.

We were always in the line for the meat grinder, it’s just that others were first.

Safety, if you were ever lucky enough to feel it, was an illusion.

No one is safe until everyone is safe."

https://www.donotpanic.news/p/mass-disabling-event-denial

#CovidIsNotOver #CovidIsAirborne #WearAMask #MaskUp #LongCovid #NotRecovered #Pandemic #AntiAbleism

"The sacrifice of bodies for the capitalist project was always going to catch up to us all eventually.

We were always in the line for the meat grinder, it’s just that others were first.

Safety, if you were ever lucky enough to feel it, was an illusion.

No one is safe until everyone is safe."

https://www.donotpanic.news/p/mass-disabling-event-denial

#CovidIsNotOver #CovidIsAirborne #WearAMask #MaskUp #LongCovid #NotRecovered #Pandemic #AntiAbleism

"it’s [...] no surprise that societies built on supremacist foundations and eugenicist tales of the strong conquering the weak are unable to look honestly at physical, bodily deterioration.
It’s no surprise that ableist societies are disabling themselves.
A genocidal mindset is coming home to roost.
The truth is our relative privilege as citizens of the imperial core could only ever last so long.
Our comfort and safety has always been traded off against out-groups and the exploited, both historically and in the present."

https://www.donotpanic.news/p/mass-disabling-event-denial

#CovidIsNotOver #CovidIsAirborne #WearAMask #MaskUp #LongCovid #NotRecovered #Pandemic #AntiAbleism

"it’s [...] no surprise that societies built on supremacist foundations and eugenicist tales of the strong conquering the weak are unable to look honestly at physical, bodily deterioration.
It’s no surprise that ableist societies are disabling themselves.
A genocidal mindset is coming home to roost.
The truth is our relative privilege as citizens of the imperial core could only ever last so long.
Our comfort and safety has always been traded off against out-groups and the exploited, both historically and in the present."

https://www.donotpanic.news/p/mass-disabling-event-denial

#CovidIsNotOver #CovidIsAirborne #WearAMask #MaskUp #LongCovid #NotRecovered #Pandemic #AntiAbleism

Solidarity with everyone who still wears a mask. Solidarity with everyone who has had friends and family turn their backs on them for being covid cautious. Solidarity with everyone who has Long-Covid and does all they can to make sure no-one else has to live through the daily difficulties we do. Solidarity to everyone fighting against ableism, eugenics, Social Darwinism and health supremacy. Solidarity to everyone who gets shouted at and abused for wearing a mask. Solidarity to everyone who keeps going despite the overwhelming hegemonic narrative that what we are living through is 'normal'. Solidarity to everyone sharing science and facts about how covid spreads and the dangers of covid. Solidarity with you.

#CovidIsNotOver #CovidIsAirborne #WearAMask #MaskUp #LongCovid #NotRecovered #Pandemic #AntiAbleism

Solidarity with everyone who still wears a mask. Solidarity with everyone who has had friends and family turn their backs on them for being covid cautious. Solidarity with everyone who has Long-Covid and does all they can to make sure no-one else has to live through the daily difficulties we do. Solidarity to everyone fighting against ableism, eugenics, Social Darwinism and health supremacy. Solidarity to everyone who gets shouted at and abused for wearing a mask. Solidarity to everyone who keeps going despite the overwhelming hegemonic narrative that what we are living through is 'normal'. Solidarity to everyone sharing science and facts about how covid spreads and the dangers of covid. Solidarity with you.

#CovidIsNotOver #CovidIsAirborne #WearAMask #MaskUp #LongCovid #NotRecovered #Pandemic #AntiAbleism

This is such a comprehensive and informative summary of research, studies and information over the last year about the pandemic by @violetblue. It again shows how states, related institutions and politicians have totally failed, the danger of and damage caused by Covid, and how tragic it is that so many people are ignoring scientific reality. Thanks to @antiaall3s for making me aware of this and related pandemic roundups!

Link here:

https://www.patreon.com/posts/pandemic-roundup-95546410

#LongCovid #CovidIsNotOver #NotRecovered #MaskUp #CovidIsAirborne #Covid

This is such a comprehensive and informative summary of research, studies and information over the last year about the pandemic by @violetblue. It again shows how states, related institutions and politicians have totally failed, the danger of and damage caused by Covid, and how tragic it is that so many people are ignoring scientific reality. Thanks to @antiaall3s for making me aware of this and related pandemic roundups!

Link here:

https://www.patreon.com/posts/pandemic-roundup-95546410

#LongCovid #CovidIsNotOver #NotRecovered #MaskUp #CovidIsAirborne #Covid

"Long-haulers have told me that through those pieces, they better understood what was happening to them, found community and medical care, and felt the relief of recognition at a time when friends, family members and health care professionals brushed off their ordeal as imaginary."

Another fantastic article by Ed Yong:

https://archive.is/2023.12.11-100551/https://www.nytimes.com/2023/12/11/opinion/long-covid-reporting-lessons.html

#CovidIsNotOver #CovidIsAirborne #Pandemic #NotRecovered #LongCovid #LongHaulers

"Long-haulers have told me that through those pieces, they better understood what was happening to them, found community and medical care, and felt the relief of recognition at a time when friends, family members and health care professionals brushed off their ordeal as imaginary."

Another fantastic article by Ed Yong:

https://archive.is/2023.12.11-100551/https://www.nytimes.com/2023/12/11/opinion/long-covid-reporting-lessons.html

#CovidIsNotOver #CovidIsAirborne #Pandemic #NotRecovered #LongCovid #LongHaulers

Liebe #LongCovid Bubble,
Dinge entwickeln sich sehr gut beim #LongCovidFeed. Alle großen u wichtigen technischen Grundlagen stehen. Aktuell richte ich ein System ein, um Feedback und Fehler zu dokumentieren.
#PostCovid #PEM #MECFS #notrecovered #diemaskebleibtauf

We are still living in a pandemic that has been and still is a mass disabling event as more and more people are disabled with Long-Covid. These attacks on disabled people are part of the movement away from acknowledging the reality of the pandemic and its consequences and instead bringing in policy that will make it harder for disabled people to have limited financial support to not work. It is also part of divide and rule tactics where disabled people are once again - like after the 2008 bank bailouts and subsequent ideological austerity policies - blamed for the political difficulties the government is experiencing, especially in the run up to a general election, alongside importantly trying to direct anger away from the injustice and inequalities central to late capitalism.

#AutumnStatement #Disability #AntiAbleism #Ableism #DisabilityRights #Covid #Pandemic #CovidIsNotOver #LongCovid #NotRecovered

We are still living in a pandemic that has been and still is a mass disabling event as more and more people are disabled with Long-Covid. These attacks on disabled people are part of the movement away from acknowledging the reality of the pandemic and its consequences and instead bringing in policy that will make it harder for disabled people to have limited financial support to not work. It is also part of divide and rule tactics where disabled people are once again - like after the 2008 bank bailouts and subsequent ideological austerity policies - blamed for the political difficulties the government is experiencing, especially in the run up to a general election, alongside importantly trying to direct anger away from the injustice and inequalities central to late capitalism.

#AutumnStatement #Disability #AntiAbleism #Ableism #DisabilityRights #Covid #Pandemic #CovidIsNotOver #LongCovid #NotRecovered

This quote, from the fantastic "Fatigue Can Shatter a Person" article, is so good at summing up how hard #LongCovid and #MECFS can be:

"“One of the most insulting things people can say is ‘Fight your illness,’” Misko said. That would be much easier for her. “It takes so much self-control and strength to do less, to be less, to shrink your life down to one or two small things from which you try to extract joy in order to survive.” For her and many others, rest has become both a medical necessity and a radical act of defiance—one that, in itself, is exhausting."

Article link: https://archive.ph/yFpFc

#NotRecovered #Covid #CovidIsNotOver

This quote, from the fantastic "Fatigue Can Shatter a Person" article, is so good at summing up how hard #LongCovid and #MECFS can be:

"“One of the most insulting things people can say is ‘Fight your illness,’” Misko said. That would be much easier for her. “It takes so much self-control and strength to do less, to be less, to shrink your life down to one or two small things from which you try to extract joy in order to survive.” For her and many others, rest has become both a medical necessity and a radical act of defiance—one that, in itself, is exhausting."

Article link: https://archive.ph/yFpFc

#NotRecovered #Covid #CovidIsNotOver

Please read and share this letter with your comrades alongside with groups, events and spaces you are part of. Many people and groups involved in radical organising have sadly surrendered to the capitalist, eugenics and ableist narrative - and thus practices - that pretends there isn't an ongoing pandemic, thus ignoring how Covid is still killing people alongside being a mass disabling event. This letter hopes to help change this and amplify voices and experiences that have sadly been marginalised and ignored, whilst giving practical advice regarding Covid safety for organising, spaces and events.

"We need to try and create the kind of events, spaces and groups that can serve as models for a future, better, world. This is what prefigurative praxis looks like. It is the work we need to do."

Read in full here:

https://rant.li/atlettertoourcomradesatrant-li/an-open-letter-to-our-anarchist-socialist-and-radical-leftist-comrades

Other links to this letter:

https://lettertoourcomrades.bearblog.dev

https://web.archive.org/web/20231102142409/https://rant.li/atlettertoourcomradesatrant-li/an-open-letter-to-our-anarchist-socialist-and-radical-leftist-comrades (Thanks to @maxi for this link)

#CovidIsNotOver #CovidisAirborne #Pandemic #Anarchism #RadicalCommunalCare #Covid #LongCovid #NotRecovered #Disability #DisabilityJustice #AntiAbleism #Intersectionality

Please read and share this letter with your comrades alongside with groups, events and spaces you are part of. Many people and groups involved in radical organising have sadly surrendered to the capitalist, eugenics and ableist narrative - and thus practices - that pretends there isn't an ongoing pandemic, thus ignoring how Covid is still killing people alongside being a mass disabling event. This letter hopes to help change this and amplify voices and experiences that have sadly been marginalised and ignored, whilst giving practical advice regarding Covid safety for organising, spaces and events.

"We need to try and create the kind of events, spaces and groups that can serve as models for a future, better, world. This is what prefigurative praxis looks like. It is the work we need to do."

Read in full here:

https://rant.li/atlettertoourcomradesatrant-li/an-open-letter-to-our-anarchist-socialist-and-radical-leftist-comrades

Other links to this letter:

https://lettertoourcomrades.bearblog.dev

https://web.archive.org/web/20231102142409/https://rant.li/atlettertoourcomradesatrant-li/an-open-letter-to-our-anarchist-socialist-and-radical-leftist-comrades (Thanks to @maxi for this link)

#CovidIsNotOver #CovidisAirborne #Pandemic #Anarchism #RadicalCommunalCare #Covid #LongCovid #NotRecovered #Disability #DisabilityJustice #AntiAbleism #Intersectionality

The article also raised awareness of a GoFundMe fundraiser for a Long-Covid and ME/CFS billboard campaign, with the first going up in Bournemouth this week (pictured below).

This is great, and I am so glad it mentions ME/CFS and Long-Covid; the many years of abuse, mistreatment, minimising and ignoring that people with ME/CFS have experienced is sickening.

More on the fundraiser here:

https://www.gofundme.com/f/billboards-for-long-covid-and-mecfs

#LongCovid #MECFS #CovidIsNotOver #Disability #DisabilityJustice #NotRecovered

The article also raised awareness of a GoFundMe fundraiser for a Long-Covid and ME/CFS billboard campaign, with the first going up in Bournemouth this week (pictured below).

This is great, and I am so glad it mentions ME/CFS and Long-Covid; the many years of abuse, mistreatment, minimising and ignoring that people with ME/CFS have experienced is sickening.

More on the fundraiser here:

https://www.gofundme.com/f/billboards-for-long-covid-and-mecfs

#LongCovid #MECFS #CovidIsNotOver #Disability #DisabilityJustice #NotRecovered

Some agitating comments about the pandemic being over or no longer a 'global health emergency' aside, this article helps highlight the daily reality of living with Long-Covid and the lack of treatment alongside problems with gaslighting, including medical gaslighting.

https://www.independent.co.uk/news/health/long-covid-uk-coronavirus-hospitals-b2435701.html

#LongCovid #CovidIsNotOver #Disability #DisabilityJustice #CovidInquiry #NotRecovered

Some agitating comments about the pandemic being over or no longer a 'global health emergency' aside, this article helps highlight the daily reality of living with Long-Covid and the lack of treatment alongside problems with gaslighting, including medical gaslighting.

https://www.independent.co.uk/news/health/long-covid-uk-coronavirus-hospitals-b2435701.html

#LongCovid #CovidIsNotOver #Disability #DisabilityJustice #CovidInquiry #NotRecovered

Not only do we get gaslit, mocked, disbelieved, shunned, excluded, ridiculed, psychosomatized. No, #LongCOVID is also flipping expensive, you asshole of a world.

I have spent thousands of moniz on shit like this, not the entire list, but pretty much.

Recompensated? Forget about it.

https://www.instagram.com/p/Cxvb3VjMOHi/?img_index=2

#NotRecovered

Not only do we get gaslit, mocked, disbelieved, shunned, excluded, ridiculed, psychosomatized. No, #LongCOVID is also flipping expensive, you asshole of a world.

I have spent thousands of moniz on shit like this, not the entire list, but pretty much.

Recompensated? Forget about it.

https://www.instagram.com/p/Cxvb3VjMOHi/?img_index=2

#NotRecovered

Timo Strotmann von der Aktion #NotRecovered bittet um #Spenden für eine #Plakataktion zugunsten #LongCovid- und #MECFS-Betroffener.

"Wir von Not_Recovered wollen mit Plakatwerbung auf Long Covid aufmerksam machen.

Es sollen zunächst nur wenige Plakate werden um die Resonanz zu testen.

Wenn möglich, unterstützt bitte das Vorhaben mit einer kleinen #Spende."

Spendenlink:
https://www.paypal.com/paypalme/notrecovered

Quelle:
https://twitter.com/TimoStrotmann/status/1696082021674528904

"Not Recovered" - a Long Covid advocacy group - announces a postcard campaign called "Letter for Life."

"Write a postcard to @SKyriakidesEU (Stella Kyriakides) and @GabrielMariya (Mariya Gabriel) to raise awareness about Long Covid, ME/CFS, and associated conditions and call for more research and better care."

This thread (nitter link) has addresses and full set of instructions:

https://nitter.net/Not_Recovered/status/1659868233795616768#m

#LongCovid #MEcfs #NotRecovered #LetterForLife #EU

"Not Recovered" - a Long Covid advocacy group - announces a postcard campaign called "Letter for Life."

"Write a postcard to @SKyriakidesEU (Stella Kyriakides) and @GabrielMariya (Mariya Gabriel) to raise awareness about Long Covid, ME/CFS, and associated conditions and call for more research and better care."

This thread (nitter link) has addresses and full set of instructions:

https://nitter.net/Not_Recovered/status/1659868233795616768#m

#LongCovid #MEcfs #NotRecovered #LetterForLife #EU

"You can make the #EuropeanCommission aware of the challenges faced by people with #LongCOVID and associated diseases like #MECFS, #POTS or #SFN and demand that they take decisive action to tackle the Long COVID crisis. Send the #postcards in the timeframe of 05.06.2023 – 09.06.2023 to the #EU commissioners and share the call for action under the hashtag #LetterForLife on social media."

#notRecovered

https://notrecovered.org/letter-for-life/

We are experiencing a mass-disabling event. And authorities have largely abandoned trying to stop it.

Every infection or re-infection runs the risk of Long COVID. The best defence is prevention. #MaskUp with a fitted N95 or better mask.

#LongCOVIDAwarenessDay
#NotRecovered

We are experiencing a mass-disabling event. And authorities have largely abandoned trying to stop it.

Every infection or re-infection runs the risk of Long COVID. The best defence is prevention. #MaskUp with a fitted N95 or better mask.

#LongCOVIDAwarenessDay
#NotRecovered

Signal boosting for my wife and all others suffering with many times unseen chronic illnesses.

#LongCOVID #mecfsawareness #COVID19 #NotRecovered #ChronicIllness

Signal boosting for my wife and all others suffering with many times unseen chronic illnesses.

#LongCOVID #mecfsawareness #COVID19 #NotRecovered #ChronicIllness

Shameless plug of a Wall Street Journal article in which my wife was a contributing source (referenced as Ms. Jackson). #LongCOVID #CovidIsNotOver #NotRecovered

https://www.wsj.com/articles/long-covid-is-a-disability-heres-how-to-ask-for-workplace-accommodations-9b63fd90

Shameless plug of a Wall Street Journal article in which my wife was a contributing source (referenced as Ms. Jackson). #LongCOVID #CovidIsNotOver #NotRecovered

https://www.wsj.com/articles/long-covid-is-a-disability-heres-how-to-ask-for-workplace-accommodations-9b63fd90

I am so tired of people at my place of work looking at me like I’ve grown a third eye because I’m still wearing a facial covering.

It’s honestly a little disheartening and makes me self-conscious whenever I walk into a meeting or worksite or whatever.

I’m still doing it, but it just makes me hate people that much more. I wish I could just go on with my life and pretend that this is all over and stop wearing masks.

All I can picture is all the shit my wife is going through since we were infected. It’s been 818 days since her life was upended by this fucking virus. It’s not over for her. And so it’s not over for me. I don’t want to be the person who maybe brings home a new exotic variant and puts her through this again.

#MaskUp #COVID #CovidIsNotOver #NotRecovered

I am so tired of people at my place of work looking at me like I’ve grown a third eye because I’m still wearing a facial covering.

It’s honestly a little disheartening and makes me self-conscious whenever I walk into a meeting or worksite or whatever.

I’m still doing it, but it just makes me hate people that much more. I wish I could just go on with my life and pretend that this is all over and stop wearing masks.

All I can picture is all the shit my wife is going through since we were infected. It’s been 818 days since her life was upended by this fucking virus. It’s not over for her. And so it’s not over for me. I don’t want to be the person who maybe brings home a new exotic variant and puts her through this again.

#MaskUp #COVID #CovidIsNotOver #NotRecovered

From the review:

"[Ryan] Prior notes that the emergence of post-COVID syndromes was not a surprise to people with knowledge of chronic fatigue syndrome (CFS), nor to those who had seen long term sequelae in people infected with the first severe actue respiratory syndrome virus in the early 2000s."

Note: CFS is an older name. ME/CFS is the current name used by NIH and CDC, see https://www.cdc.gov/me-cfs/index.html

3/3

#LongCovid #MEcfs #NotRecovered #Books #BookReview

From the review:

"[Ryan] Prior notes that the emergence of post-COVID syndromes was not a surprise to people with knowledge of chronic fatigue syndrome (CFS), nor to those who had seen long term sequelae in people infected with the first severe actue respiratory syndrome virus in the early 2000s."

Note: CFS is an older name. ME/CFS is the current name used by NIH and CDC, see https://www.cdc.gov/me-cfs/index.html

3/3

#LongCovid #MEcfs #NotRecovered #Books #BookReview

From the review:

"The data aggregation website Worldometer reports that as of 5 January 2023 there have been more than 666 million cases of COVID-19 and over 6.7 million deaths worldwide. It also reports ~638 million cases as 'recovered' a figure I am sure journalist Ryan prior would dispute."

2/3

#COVID #LongCovid #NotRecovered #Books #BookReview

From the review:

"The data aggregation website Worldometer reports that as of 5 January 2023 there have been more than 666 million cases of COVID-19 and over 6.7 million deaths worldwide. It also reports ~638 million cases as 'recovered' a figure I am sure journalist Ryan prior would dispute."

2/3

#COVID #LongCovid #NotRecovered #Books #BookReview

Science Magazine's book review of The Long Haul by Ryan Prior

"The unrecovered"

"A journalist’s empathetic portrait of COVID-19 'long haulers' sheds light on the realities of postviral illness"

https://www.science.org/doi/10.1126/science.adf7568

I've put some quotes from the review in replies.

1/3

#LongCovid #NotRecovered #MEcfs #Books #BookReview

Science Magazine's book review of The Long Haul by Ryan Prior

"The unrecovered"

"A journalist’s empathetic portrait of COVID-19 'long haulers' sheds light on the realities of postviral illness"

https://www.science.org/doi/10.1126/science.adf7568

I've put some quotes from the review in replies.

1/3

#LongCovid #NotRecovered #MEcfs #Books #BookReview

Timo Strotmann, one of the members of #notRecovered (#nichtGenesen) has published his first blog post about #MECFS.

#PostCovid #LongCovid

https://www.strotmann.me/posts/me-common-server-unkown/

My latest #longcovid #blog post. That term we all hate-- Brain Fog. My hot take on the cognitive issues related to Long Covid including my very personal experiences. http://www.seekingbostonmarathon.com/2022/11/long-covid-brain-fog-is-not-fog-its.html?m=1 #pwLC #fblc #NotRecovered #teamclots

#introduction

So here I am, a graduate of Facebook and Twitter.

A nurse for 50 years, Degree in Social Work and Counselling qualifications

Removed from my #Nhs workplace because of #LongCovid

#NotRecovered
Still unable to return to a productive existence after 2½yrs.

Looking after grandchildren as often as I can (oldest lives with me) and now 4 rescue kittens.

Navigating social platforms to find others like myself, searching, studying, applying, following #TeamClots and many more.