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#LongCovid

147 posts75 participants8 posts today
Anna

Someone please take me in very soon or I will die here.
-No masking
-Mouldy room
-No help
-Little food
-Nowhere to shower. No seat allowed, mouldy
-No aircon (w severe #POTS)
-Sister moved next door comes eat, yell
-Sensory overload
So much more. There are no places to go for severely disabled.
I need GOOD PEOPLE TO HELP ME.
I’ve been screaming for years my health & situation keep getting worse.
Help me😭
#MECFS #LongCovid #ChronicPain #Abuse #Neglect #SeverePwME

@mecfs
@severeme
@longcovid
@RAHU
@chronicpain
@neisvoid
@pwme

Anna

Someone please take me in very soon or I will die here.
-No masking
-Mouldy room
-No help
-Little food
-Nowhere to shower. No seat allowed, mouldy
-No aircon (w severe #POTS)
-Sister moved next door comes eat, yell
-Sensory overload
So much more. There are no places to go for severely disabled.
I need GOOD PEOPLE TO HELP ME.
I’ve been screaming for years my health & situation keep getting worse.
Help me😭
#MECFS #LongCovid #ChronicPain #Abuse #Neglect #SeverePwME

@mecfs
@severeme
@longcovid
@RAHU
@chronicpain
@neisvoid
@pwme

Anna

Someone please take me in very soon or I will die here.
-No masking
-Mouldy room
-No help
-Little food
-Nowhere to shower. No seat allowed, mouldy
-No aircon (w severe #POTS)
-Sister moved next door comes eat, yell
-Sensory overload
So much more. No places to go for severely disabled.
Need GOOD PEOPLE TO HELP ME.
Screaming for years my health & situation terrible
Help me😭
#MECFS #LongCovid #ChronicPain #Abuse #Neglect #SeverePwME

@mecfs
@severeme
@longcovid
@chronicpain
@neisvoid
@pwme

Broadwaybabyto

Mask bans already exist in certain States and counties.

Vance spearheaded a federal ban on mask mandates.

Organizing to codify the right to wear medical masks and respirators is (sadly) needed.

Masking is community care and resistance.

Illinois attempting to codify right to mask into law:

pmefa.org/

pmefa.orgHB3853: The Protective Medical Equipment Freedom ActThe website of the Protective Medical Equipment Freedom Act, a landmark Illinois bill which establishes the right to wear masks and other protective equipment.
#uspoli#nomaskbans#ableism
Tom Kindlon

Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative

jmir.org/2025/1/e59217/

From the latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #POTS @pots

Journal of Medical Internet Research Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative — Hannah L Mandel "The initial focus among clinicians on respiratory symptoms and widespread lack of knowledge around what were initially considered to be “atypical” presentations, such as postexertional malaise, ME/CFS, POTS, and dysautonomia, also contribute to missingness of relevant diagnoses within the EHR"
ALT
ahimsa

@plaguepoems
About 5 years ago (see image below, saved this tweet before I deleted my account) I asked whether COVID would cause more ME/CFS cases and whether anyone was going to study this issue. And I was not the only person asking this!

We now have a study showing that this is indeed what happens 😢

Among participants infected with SARS-CoV-2 the incidence of ME/CFS is 15 times higher than pre-pandemic rates.

batemanhornecenter.org/covid-1

Tweet from "ahimsa is on Mastodon now" (@ahimsa_pdx) "We know that many (most?) cases of ME/CFS are post viral. Is anyone going to study what happens after COVID-19 infection - do some patients end up with ME/CFS? Seems like a good research opportunity." 9:54 PM - March 8, 2020
ALT
#COVID19#MEcfs#LongCovid
Bass #AlleBurgers #EcoHumanist

@alleburgers @Med58ll

The law of regression to the tail: How to survive Covid-19(#LongCovid),#BirdFlu #H5N1, the #ClimateCrisis, and other #Disasters

Prof. #BentFlyvbjerg: "Instead, decision makers will want to do two things: (a) "cut the tail," to reduce risk by mitigation, and (b) practice the precautionary principle, i.e., avoid tail risk altogether by taking a cautious approach."

➡️pmc.ncbi.nlm.nih.gov/articles/

PubMed Central (PMC)The law of regression to the tail: How to survive Covid-19, the climate crisis, and other disastersRegression to the mean is nice and reliable. Regression to the tail is reliably scary. We live in the age of regression to the tail. It is only a matter of time until a pandemic worse than covid-19 will hit us, and climate more extreme than any we ...
T 🍉

International Long COVID Awareness Day was March 15th.

From the patient-led research collaborative fact sheet:

At least 400 million people globally have Long COVID, and this number is likely a significant undercount. In the US, about 1 in 19 people have Long COVID–the same rate as diabetes. But only 7% of doctors say they’re confident diagnosing Long COVID, and a majority of Long COVID patients report having negative experiences as they attempt to get care.

1/

#covid#LongCovid
Robot Diver

My friend sent me this today from an amazing snowshoe camping trip we took in 2016.

MECFS has altered my life in such a massive way that I'm sometimes at a loss for words. I would have easily hiked 80-100km in a weekend in spite of some heavy fibromyalgia symptoms back then. Now I'm happy when i can make it around the block.

That being said, I'm not the only one. I have another friend in this photo with a degenerative disorder, and I was worried my hiking buddies would disappear when i got sick and came out as trans. But they are still here and I know how rare that is.

I miss the alpine, I miss the plants, I miss the peace and the beautiful reset it gave my audhd each time, i miss the bonding with my friends, but this photo reminds me that you have to love each moment to its fullest because you never know what's right around the corner and I'm so glad I did.

A group of happy campers who overnighted in -15C weather without too much wear, eager for hot pub food.
ALT
#mecfs#longCovid#alpine
Tom Kindlon

Five years of Long Covid

Links:
NBC News
nbcnews.com/health/health-news

US News and World Report:
usnews.com/opinion/articles/20

Rolling Stone:
rollingstone.com/culture/cultu

s4me.info/threads/news-from-th

From the latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19

Five years of Long Covid The five year anniversary of the start the COVID-19 pandemic has prompted several media outlets to publish stories on Long Covid. NBC News: 5 years later, long Covid is still a medical mystery: What scientists have learned US News and World Report: 5 Years Since the COVID-19 Pandemic, Millions Like Me Are Still Sick Rolling Stone: Five Years of Pain, Fatigue, and Gaslighting: Life With Long Covid More stories in this Thread
ALT
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