In order to help raise awareness of the COVID long-termers - mild-to-moderate cases that have people struggling for months - this is a curated list of English-language press coverage of the
#covid1in20
#covid1in10
experience.
Join the Facebook group:
Does anyone have issues with people not believing you when you tell them your diagnosis for
#LongCovid
?
I have told very few people outside my immediate family and business, in the main the look on their faces says it all 🙁
Why is the public health messaging on this so bad?
What gets me about my illness is not that I can't do stuff.
It's that I don't know if I'll be able to do stuff.
Doing a thing can either put me in bed for days or I'll be fine.
24/36 hours later the rules change.
How supportive are your friends and family since you’ve been sick with
#LongCovid
?
I feel quite alone because there is so much I can’t do that I used to. My family and friends see I’m sick but don’t seem to understand.
Any tips on how to help them understand?
"The risk of decreased kidney function is highest among people who were in ICU; It's important to note that risk extends to all patients, even those who had milder cases of COVID-19"
#longcovid
long-haulers at risk of developing kidney damage, disease
Long Covid: "I'm grieving my life," says former tennis pro forced to retire at 21.
3 years ago, Tanysha Dissanayake was a tennis prodigy who played alongside Emma Radacanu in junior Wimbledon.
Long COVID is having a ‘devastating’ effect on doctors who have lost jobs, lost income
An anonymous salaried GP said: “I can no longer work, finances are ruined. I didn’t have employment protection so I am now unemployed and penniless”
"
#LongCovid
patients have been saying this for almost 3 years. Good that the medical establishment is catching up. Maybe we would be in a better place if doctors would have believed us from the beginning, rather than having to still do uphill battles for adequate health care."
10 Things That Are Totally Nothing To Do With Covid Infections And Haven’t Been Caused By Covid Infections And Are In No Way Connected To Covid Infections At All:
🇫🇷 Two million people have
#longCovid
in France, new figures show.
"Although increasingly recognised as a genuine health condition, it can still take a long time to be diagnosed and receive the right care"
Prof Danny Altmann: the burden of
#longCOVID
Leading UK researchers declare the burden of the post-infection condition "so large as to be unfathomable"
@ForOurIzzy
@gemcarey
@tarotcat
Sorry but no. You fundamentally misunderstand what the term Long Covid means and has meant since 2020. It's an umbrella term. Long Covid can be MCAS. Long Covid can be POTS. Long Covid can be anosmia. Long Covid CAN be MECFS. Long Covid can be viral persistence.
6 times World's Strongest Man Eddie "The Beast" Hall talks about his struggles with Long Covid
“It's Been Horrendous”: Eddie Hall Talks about Coping with Long Covid
International long Covid patient groups appeared in mid-2020.
The
@long_covid
Support Group created on Facebook on 2nd May 2020, Twitter in July 2020.
French LC group
@Apresj20
created a Twitter account in July 2020. USA group
@Covid19Long
Haulers did too.
The
#LongCovid
#COVID19
is starting to be addressed on major newspapers in Italy 🇮🇹 too: ~20% of tested patients remain covid + for at least 40 days 👇. Prof from Tor Vergata University of Rome notes: there is a lot we don't know about this virus.
Big shoutout to the people who:
▪️have invisible symptoms
▪️are able to function when in extreme pain
▪️hide their illness well
▪️who don't seem 'sick'
▪️who have flareups when no one else sees
▪️fight a daily battle others can't see
You got this.
"NACE2i works by reprogramming the hijacked ACE2 receptor which disarms the virus & stops it replicating. Reprogrammed ACE2 receptor is returned to the cell surface where it acts as a lock that prevents the virus from entering the cell. This process also reverses inflammation"
@these41168
@SalvMattera
Long Covid pre-dates Covid vaccination deployment globally and exists in countries that did not use mRNA technology in their vaccines.
My thread of date-stamped resources from 2020 proves it:
“COVID-19 gave me POTS disorder. Here's how my life has dramatically changed.
I went from an active, healthy life to a couch-ridden state in a matter of weeks due to postural orthostatic tachycardia syndrome.”
@healingfromlc
I find talking exhausting, within a few minutes of a conversation I'm looking for a way to make it stop as politely as possible.
My tolerance for texting/typing is 10 times that, but it does get to me eventually.
📢
#LongCOVID
Could Increase Your Risk of Parkinson’s Disease
A growing body of research suggests that widespread COVID infections could lead to an uptick in serious neurological disorders like Parkinsons
NHL player Brandon Sutter retires after
#longCOVID
comeback stalls
Sutter did not play for the Canucks in the 2021-22 season due to dealing with symptoms of long COVID
Looking back at some notes I have, how many LCers out there are still using Coenzyme Q10?
If so what do you think it's doing for you?
I tried for a while but nothing
#longCovid
@justwannadive
@kadamssl
Oh dear. Long Covid pre-dates Covid vaccination deployment globally. It happens in countries that did not use mRNA vaccines.
My thread of date-stamped resources from 2020 proves it:
@BBCMorningLive
@xandvt
If you're not discussing Post Exertional Symptom Exacerbation (PESE) as part of the complete Long Covid conversation you're not really talking about Long Covid at all.
@oldfshndanne
🙁 Anecdotally I think this is actually the experience of most people experiencing PEM. Mine has actually moved out from 24/48 hours to more like 72 to 96, which initially made identifying the trigger event harder.
Long Covid resembles hidden malicious software on your mobile phone, depleting the battery without notice.
Its effects are palpable, yet its origins remain concealed, gradually sapping your energy, rendering you without power and trapped in frustration.
"We apologize if language used was unclear"
Two things:
• if you're using "if" it isn't an apology.
• the language used wasn't "unclear", it was outright wrong.
@nihceal
really need to brush up on their professional comms skills, ironic for a "community engagement" org.
While there's no cure for Long COVID, there may be treatment options that can address one’s symptoms & may help people living with Long COVID have better days. There’s a lot to be learned through research & from the Long COVID community. (1/2)
Chicago Blackhawks legend Jonathan Toews announced he isn't retiring yet but is taking some time away from the NHL to fully heal from health issues related to
#longCOVID
and chronic immune response syndrome.
Lost careers. Broken marriages. Family and friends who dismiss and don’t believe.
#LongCOVID
Patients Feel ‘Swept Under the Rug’ by End to Pandemic Emergencies
I am removing myself from this group and unfollowing on here, it is clear they do not have the best intentions of patients at heart.
There is no room for Garner on any serious
#LongCovid
platform.
Re: Paul Garner. Our admin team had a vote and it was decided to treat every member the same. We have never blocked any member that did not violate group rules. Our community is open access, all data owned by all members. We do not support his views, but unless he breaks the/1
UK Government NICE: "COVID-19 rapid guideline: managing the long-term effects of COVID-19" (Long Covid), published in December 2020 following months of research.
Scheiße,
@Karl_Lauterbach
.
Germany is cutting Long Covid funding to one fifth of the initial proposed €100m.
The health budget is reduced from €64.4 billion in 2022 to €16.2b next year. 😮
To compare, the military budget will increase to €51.8b plus another €20b.
I've been bedbound since January with long Covid, but I still love to dress up for Halloween. So my husband made me this costume (posted by Kyle, the husband.)