#LongCovidSOS
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derfirlefranz.bsky.social
Erforscht ist da bislang noch wenig, allerdings darf man nicht ausblenden:
Mai 2020: Die britische Patientengruppe „LongCovidSOS“ prägt den Begriff „Long COVID“.
2021: CDC, WHO und ECDC führen offizielle Definitionen für „Post-COVID“/„Long COVID“ ein.

Ich bin direkt sensibel, weil es K2 erwischte.🤯
November 21, 2025 at 9:32 AM
mimmothteaparty.bsky.social
OI
OrthostaticIntolerance
LongSomething
CCI
LongLyme
postviralillness
PENE
pem
painsomnia
ANSdysfunction
FND
headachetreatment
headache
occipitalneuralgia
NeuroConditions
takeastandforpots
MillionsMissing
LongCovidResearch
JohnVsJonVsME
LongCovidSOS
MedEd
syncope
NeuroCognitiveDysfunction
August 10, 2025 at 3:26 AM
elhopkins.bsky.social
For parents concerned about COVID you can look this up in the Covid inquiry. It’s on YouTube.
#CovidInquiry, Prof. Graham Medley (Chair at SPI-M): "We knew from the outset there were likely to be post infection sequelae" @long_covid @LongCovidSOS @LongCovidKids #LongCovidGroups #LongCovid #WeNeedAnswers #LongCovidLivesRuined #LongCovidRuinedMyLife
August 3, 2025 at 8:52 AM
elhopkins.bsky.social
So much evidence in the covid inquiry that never made it onto the news.
#CovidInquiry, Prof. Graham Medley (Chair at SPI-M): "We knew from the outset there were likely to be post infection sequelae" @long_covid @LongCovidSOS @LongCovidKids #LongCovidGroups #LongCovid #WeNeedAnswers #LongCovidLivesRuined #LongCovidRuinedMyLife
July 7, 2025 at 8:39 AM
sarahbarleymc.bsky.social
When Ondine asked me to join the Long Covid SOS team, she challenged me to discover new purpose and resilience to live better with Long Covid — and in doing so, she taught me what true advocacy really means. #LongCovidSOS
June 19, 2025 at 7:46 AM
shh-uk.bsky.social
@DRTomlinsonEP @hazardscampaign @Nat_E_Pearson @strawfie @jnewsham @CentreGreater @SafeDavid3 @TaniaJSpencer @ThereForME_UK @LongCOVIDPhysio @LongCovidKids @TheWHN @_CatintheHat @JCeoltaSmith @LongCovidSOS @long_covid @andreabarrett__ @ScribblerPen @crr7310
@ukhadds @PeteUK7
April 29, 2025 at 7:13 AM
sarahbarleymc.bsky.social
“Ondine was an incredible activist for the Long Covid community and driving force behind our participation in the Inquiry. She is sorely missed.”
@longcovidsos
longcovidsos.bsky.social Long Covid SOS @longcovidsos.bsky.social · Mar 18
A wonderful article by Jane Ryan on #LongCovid and the #CovidInquiry.

Thank you for your lovely tribute to Ondine:

“Ondine was an incredible activist for the Long Covid community and driving force behind our participation in the Inquiry. She is sorely missed.”
thereforme.bsky.social ThereForME @thereforme.bsky.social · Mar 18
Today’s #ThereForME blog is from Jane Ryan, legal representative for the Long Covid groups at the UK’s Covid inquiry.

As we mark #LongCovidAwarenessDay, Jane reflects on what we’ve seen so far and what we can expect as the inquiry continues to unfold.

www.thereforme.uk/p/probing-an...
March 18, 2025 at 9:51 AM
zaycrescendo.bsky.social
Every colour tells a story. The three hues of our Long C0v!d awareness ribbon represent the past, present, and future of our journey with this condition:

🩶 Gray: Loss & grief
🩵 Teal: Hope & support
🖤 Black: Loneliness & isolation

@longcovidsos.bsky.social
Every colour tells a story. The three hues of our Long C0v!d awareness ribbon represent the past, present, and future of our journey with this condition: 🩶 Gray: Loss & grief 🩵 Teal: Hope & support 🖤 Black: Loneliness & isolation @longcovidsos
March 17, 2025 at 9:26 PM
mayalongcovid.bsky.social
More #PedroPascalPapers for #LongCovidAwarenessDay (a day late)

#MECFS #LongCovid #PEM #PostExertionalMalaise #OrthostaticIntolerance #POTS #IACC #GreatestMEdicalScandal #JohnVsJonVsME #PedroPascal #MedEd #5YearsLongCovid #FundThePlan #WearAMask #LongCovidResearch #LongCovidSOS #MillionsMissing
Pedro Pascal matched to ME/LongCovid research infographic Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis J Gen Int Med, 2025 ME/CFS prevalence after COVID infection in this prospective study was found to be 4.5%, up from 0.2-1% general pre-pandemic levels. Post Exertional Malaise, the cardinal symptom of ME/CFS, was the most common and most debilitating symptom among those with Long Covid. Second most common symptoms were cognitive impairment & orthostatic intolerance. Pedro Pascal matched to ME/LongCovid research infographic Long COVID science, research and policy Nature, 2024 Several mechanistic pathways are implicated in Long COVID, including viral persistence, immune dysregulation, mitochondrial dysfunction, complement dysregulation, endothelial inflammation and microbiome dysbiosis. Manifestations of long COVID, including heart disease, diabetes, myalgic encephalomyelitis and dysautonomia are chronic conditions that last a lifetime. Only 7-10% are fully recovered at 2 years. Pedro Pascal matched to ME/LongCovid research infographic High proportions of post-exertional malaise and orthostatic intolerance in Post Covid Front Med, 2023 Exercise-based treatments can worsen/exacerbate symptoms in people who have post Covid post-exertional malaise (PEM) or orthostatic intolerance (Ol). While other studies found rates of Post Covid PEM to be as high as 82%, this study found rates of PEM to be 48% (women) 41% (men) and rates of orthostatic intolerance to be 29%/28% (women/men). Standard screenings of PEM & Ol is recommended to promote appropriate therapies. Pedro Pascal matched to ME/LongCovid research infographic Oxidative Stress is a shared characteristic of ME/CFS & Long Covid BioRxiv (Preprint), 2024 Analysis of intracellular pathways shows that both Long Covid & ME/CFS share signatures of elevated oxidative stress, specifically among lymphocytes, compared to healthy controls. This work pinpoints a potential targetable cellular mechanism, where these metabolic changes clearly affect lymphocyte activation. Findings showed sex-specific redox signatures in ME/CFS patients, suggesting pathophysiology is distinct between genders.
March 16, 2025 at 6:59 PM
portlandcleanair.bsky.social
You can make a difference by inviting the Portland Clean Air Committee to support your next event because we understand the risks, firsthand.
bit.ly/BorrowFromPCAC
A white graphic with a light purple band along the top. Title: "International Long COVID Awareness Day," next to a grey & turquoise Long COVID Awareness ribbon. Subtitle: "Can I reduce the risk of long COVID?" Body text: "The best way to reduce your risk of developing long COVID is to reduce the chances of contracting COVID-19 (or the number of infections). The chance of LC increases with every infection. Masks and air purifiers are two of the tools we have against airborne illnesses like COVID-19! People living with long COVID and other post-infection conditions advise continued rest AND LONG-TERM PACING after an infection before gradually increasing activity. Clinical research on the impacts of antivirals (e.g. paxlovid or metformin, methylene blue, and more) is being conducted. So far, there are mixed results, and there is no one-size-fits-all option." At the bottom left is the Portland Clean Air Committee logo. On the bottom right is an arrow pointing to the next frame. A white graphic with a light purple band along the top. Title: "International Long COVID Awareness Day," next to a grey & turquoise Long COVID Awareness ribbon. Subtitle: "Where can I find support?" Body text: "There is currently no cure for long COVID and research is ongoing. Funding continues to be threatened by the government, which would prefer to ignore the problem entirely. There is strength in community! Here are a few of our favorite long covid-related accounts: @longcovidjustice, @longcovidsos, @longcovidadvoc8, @long_covid_kids, @longcovfoundation, @covidactionmap, @peoplescdc. Did we miss one? Tag them in the comments!" At the bottom left is the Portland Clean Air Committee logo. On the bottom right is an arrow pointing to the next frame. A white graphic with a light purple band along the top and a copy of a "Pacing Penguins" poster on the right. Text: "For a larger version [of the poster], visit: bit.ly/PacingPenguins." The "Pacing Penguins" poster has three columns with examples: how to gain energy, sensible energy use, and energy drains. Content was made by longcovidkids.org. At the bottom left is the Portland Clean Air Committee logo.
March 15, 2025 at 9:24 PM
longcovidscot.bsky.social
Have a look at this short video from LongCovidSOS - Wouldn't it be great if some of these myths could be put to rest once and for all?
#LongCovid #Misinformation
www.instagram.com/reel/DHNs...
Long Covid SOS on Instagram: "🚨 Mythbusting Long Covid with Dr Amir Khan 🚨 Long Covid is real. It’s serious. And it’s affecting millions. Yet, myths and misconceptions still stand in the way of proper care and support. So let’s set the record stra
5,294 likes, 356 comments - longcovidsos on March 15, 2025: "🚨 Mythbusting Long Covid with Dr Amir Khan 🚨 Long Covid is real. It’s serious. And it’s affecting millions. Yet, myths and misconceptions still stand in the way of proper care and suppor
www.instagram.com
March 15, 2025 at 9:06 PM
colinbrayton.bsky.social
SAIBAM! Portadores de covid longa, um síndrome complexo que segue a infecção e recuperação do virus, estão se organizando na Gran Bretanha. O Brasil poderia ater até 5 milhões de portadores, mas falta conciência, comunicação e militância.
https://x.com/LongCovidSOS/status/1900989462198276411
“We know that over two million people in England and Scotland have #LongCovid, and if you think there are only [around 68] million people in the UK, then that's a huge proportion of people that are being ignored.” -@SarahBarleyMc https://t.co/iiK5FrbwoM
x.com
March 15, 2025 at 8:36 PM
longcovidsos.bsky.social
Thanks to our amazing @LongCovidSOS volunteer @sarahbarleymc.bsky.social as well as peerless #LongCovid advocates @aaronca11.bsky.social & Margaret O’Hara for sharing their stories and calling for change in this excellent article for #LongCovidAwarenessDay 👏

🩵🩶🖤
March 15, 2025 at 7:16 PM
sallybourliakas.bsky.social
Look 👀 what arrived just in time!!
( The Pin Guys not the cat)
Lady in FFP2 mask holds up an unamused blue eyed ragdoll cat while showing off new #LongCovidSOS pin (unfortunately camouflaged by loud tiger and jungle print top!)
March 15, 2025 at 3:30 PM
longcovidsos.bsky.social
On #LongCovidAwarenessDay we want to hear from you. Share your stories and images and we’ll retweet them to amplify our voices and show the world the impact of #LongCovid

#LongCovid takes so much - health, careers, friendships, and independence.
Pale grey background with a faded out large Long Covid SOS lifering stamp going off the edges Centre top in white text with a light grey surround “LONG COVID: LOSS AND HOPE” White card overlay with the following text in black: “Reply to this thread with a black & white or greyscale picture to show what Long Covid has taken from you Tag us @longcovidsos and use the #LongCovidAwarenessDay hashtag so we can amplify your voices. Lets show the world the full picture” Bottom right -Long Covid SOS logo in white Pale teal background with a faded out large Long Covid SOS lifering stamp going off the edges Centre top in white text with a light teal surround “LONG COVID: HOPE AND LOSS” White card overlay with the following text in black: “Reply to this thread with a colour picture to show what still brings you joy despite Long Covid Tag us @longcovidsos and use the #LongCovidAwarenessDay so we can amplify your voices. Lets show the world the full picture” Bottom right -Long Covid SOS logo in white
March 15, 2025 at 1:53 PM
benking01.bsky.social
Wearing my @LongCovidSOS pin for #LongCovidAwarenessDay2025
March 15, 2025 at 11:57 AM
longcovidsos.bsky.social
Today, and always, we continue her fight. For Ondine. For all of us.

#longcovidawarenessday #longcovid #longcovidsos #honouringondine #forlastingchange #wearehervoice
March 15, 2025 at 8:36 AM
longcovidsos.bsky.social
Forget Pokémon, catch your #LongCovid Awareness pin before they’re all gone!

Limited edition. Big impact.

Wear it, share it, make a statement.

🔗 Get yours now – longcovidsos.org/shop

#longcovidawareness #longcovidawarenessday #longcovidsos #wearitforchange #GottaCatchEmAll
March 7, 2025 at 4:55 PM
longcovidsos.bsky.social
Many still don’t fully understand the impact of #LongCovid. Raising awareness is key to securing better recognition, research, & care. Too often, #pwLC struggle to access healthcare, financial support, & work accommodations, which is why fighting for our rights is so important.
An orange tinted card on a green tinted background 1. SIGN & SHARE OUR PETITION (orange text) We launched a petition for our Bill of Rights, calling on governments and policymakers to recognise and act on the urgent needs of people with Long Covid. We want to get it to the people making the decisions about our care. Signing and sharing this petition is a powerful way to show support and push for real change. (Black text) An orange tinted card on a green tinted background 2. RAISE AWARENESS(orange text) • Talk to friends, family, and colleagues to help reduce stigma and misinformation. AND KEEP TALKING • Use the hashtag #LongCovidAwareness & tag us @LongCovidSOS to help amplify our message • Share the Bill of Rights, petition, and other Long Covid SOS resources on social media. • Download the leaflets from our website, use and share them.. (Black text) An orange tinted card on a green tinted background 3. ADVOCATE FOR CHANGE (orange text) • Use our letter template to write to your MP to demand better support for those with Long Covid. This template makes it easier for you to advocate for better awareness and rights of people with Long Covid • Encourage local organisations, healthcare providers, and workplaces to recognise and accommodate Long Covid. ASK QUESTIONS (Black text) An orange tinted card on a green tinted background 4. SUPPORT OUR WORK (orange text) • Follow, tag and engage with us on social media to help spread our message • Keep up to date with our website, we have great resources and learn about us • Buy #LongCovidAwareness pin from us and wear it to spark conversations • Donate to Long Covid SOS if you're able, to help fund our advocacy, awareness campaigns, and support efforts. (Black text)
March 1, 2025 at 9:38 AM
longcovidsos.bsky.social
March is #LongCovidAwareness month, a time to come together and make our voices heard.

As people living with #LongCovid and volunteering with Long Covid SOS, we know how vital advocacy and support are for our community.

Sign our bill of rights here: longcovidsos.org/bill-of-rights
An orange tinted card over a grey background with the LongCovidSOS logo at the top. Black Text on the card reads: “March is Long Covid Awareness Month, a time to come together and make our voices HEARD. Many people feel helpless or unsure how they can make a difference. But there are many ways to support Long Covid SOS and stand with us in advocating for the rights of those living with Long Covid.” Orange text below it reads “Let's get ready to make a meaningful impact.” An orange tinted card on a grey background with grey markings. The long covid sos logo is at the top right. Large green text in the centre reads: “LONG COVID IS A CRISIS. SUPPORT. АСТ. DEMAND CHANGE.” An orange tinted card on a grey background with grey markings. The long covid sos logo is at the top right. Large green text in the centre reads: “LONG COVID IS A CRISIS. SUPPORT. АСТ. DEMAND CHANGE.” An orange tinted card on a grey background with grey markings. The long covid sos logo is at the top right. Large green text in the centre reads: “LONG COVID IS A CRISIS. SUPPORT. АСТ. DEMAND CHANGE.”
March 1, 2025 at 9:38 AM
longcovidsos.bsky.social
We’re delighted to announce Dr Lucy Moore as our new Chair of Trustees at Long Covid SOS.

Lucy brings over 25 years of senior leadership experience across the charitable sector and NHS.

#longcovid #longcovidsos

www.longcovidsos.org/post/introdu...
Introducing Dr Lucy Moore, our new Chair of Trustees
We are delighted to welcome Dr. Lucy Moore as the new Chair of Trustees for Long Covid SOS.
www.longcovidsos.org
February 27, 2025 at 4:36 PM
longcovidanswers.bsky.social
Dr Danilo Buonsenso MD Phd, Paediatric Infectious Disease Specialist and Physician Scientist, explains the underlying mechanisms of Long COVID in children.

https://www.youtube.com/watch?v=1SG5D_rP494
@danilo_surf4children #longcovid #longhauler #longcovidkids @longcovidsos
February 26, 2025 at 6:02 PM
longcovidsos.bsky.social
✨ Pre-order now & show your support for the #LongCovid community! ✨

By wearing this pin, you help break the silence, spark conversations & push for change.

Speak up. Speak out. Support.

#longcovidawarenessday #longcovidsos #standwithus
Longcovidsos.org/shop
SHOP | Long Covid SOS
Help us to continue our work to to push for greater recognition and understanding of Long Covid, to drive forward targeted research and to provide support and resources to those struggling to recover.
Longcovidsos.org
February 22, 2025 at 3:44 PM
drjazztehara.bsky.social
You are correct here Phil.

This was their modus operandi all through the C19 acute phase also - which is why iSage / LongCovidSOS and co. were so important to be a voice that contrasted what the paid shills were broadcasting.

They already had their conclusions, they wanted legitimacy for it.
February 18, 2025 at 3:43 PM
longcovidsos.bsky.social
😫 Sometimes, it’s just easier to pretend things are okay than to face the overwhelming reality of how much we’re actually dealing with.

You can say how you really are here. We get it. ❤️‍🩹

#longcovidawareness
#Imfine
#longcovidsos
#chronicillness
February 12, 2025 at 10:30 AM