Please contact each organisation for case studies and interviews, or email press@longcovidkids.org to be connected.
www.longcovidkids.org/post/long-co...
#PressRelease #LongCovidPatientGroups #LongCovid #UKCOVIDInquiry #Module3
Today at 12pm, the UK Covid-19 Inquiry will publish its third report: ‘The impact of the Covid-19 pandemic on the healthcare systems of the United Kingdom’ (Module 3).
Read our collective press release here: www.longcovidkids.org/post/long-co...
💚 Thank you to @zackpolanski.bsky.social and @dramirkhangp.bsky.social for discussing Long Covid on @boldpolitics.bsky.social for #LongCovidAwarenessMonth
Excellent discussion that includes the lack of care & investment for people with Long Covid, ME, Fibro and other complex illnesses
🖇️Full clip👇️
The Long Covid Groups; #LongCovidKids, @longcovidsos.bsky.social , @longcovidsupport.bsky.social and @longcovidphysio.bsky.social are in attendance at the closed reading, represented by our lawyer @jane-ryan.bsky.social & Jo Dainow LCS.
Together we stand united for the #LongCovid community.
Today the @ukcovid-19inquiry.bsky.social will publish the report for Module 3.
We will share updates as soon as possible.
#LongCovidAwareness
#UKCovidInquiry #Module3
Students and others, we don’t know if meningococcal disease can spread through the air. I see some of you in the outbreak zone are wearing masks. If you want to maximise your protection against a *possible* airborne threat, wear a *respirator* (FFP2 or - better - FFP3). These are ~N95/N99 in USA.
Haha!!
Here is one of our members, Nicola Ritchie, explaining the impact of living with #LongCovid at the Covid Inquiry
Nicola is available to speak with the media after the release of the Module 3 Report on Thursday
Thanks for taking the time to reply Rob. We have also emailed the CSP with a copy of our press release but have not yet received a reply
Does the CSP @thecsp.bsky.social have any plans to cover the release of the Module 3 report from the Covid Inquiry on Thurs?
We would love to have your support
@jonryancsp.bsky.social @ashjames10.bsky.social @robyeldham.bsky.social @abihend.bsky.social @tolanahp.bsky.social
Press release below
@mrjamesob.bsky.social @lbc.co.uk
Are you planning on covering the release of the Module 3 report from the Covid Inquiry?
There are at least 2 million people living with LongCovid in the UK. Many of us have lost our jobs and careers in healthcare
Please find our press release below👇
@thercot.bsky.social do you have any plans to cover the Module 3 report on Thurs?
I am part of @longcovidphysio.bsky.social & was part of their inquiry team as they were core participants for module 3.
Many members have been affected by Covid & Long Covid.
It'd be great to see RCOT cover this
. @jonryancsp.bsky.social does the CSP have any plans to cover the Module 3 report on Thursday?
LCP was one of the LC group core participants for this module. Our members played a key part & were involved in both oral & written testimonies.
We’d love to have your support with media coverage 🙏
LongCovid Physio, together with LongCovid Kids, LongCovid SOS and LongCovid Support were core participants in Module 3 of the Covid Inquiry
The report will be released on Thursday 19th March
Please see our press release ahead of this day
Thanks to LCS for posting 🙏
As a physician, Long COVID taught me humility.
As a patient, it showed me how harmful dismissal can be.
To those living with Long COVID: you are my inspiration to listen better, believe sooner, and advocate harder.
#LongCovidAwarenessDay #LongCovid #Physiatry
This is the reality of living with #LongCovid
Please take a minute to watch this moving video
We continue to advocate for improved education, safe rehabilitation and research for all thise affected by #LongCovid
#LongCovidResearchDay
I've been debating posting this all day, but here goes. It's ironic that #LongCovidAwarenessDay falls on Mother's Day this year. #LongCovid has likely taken away any chance of me having a child. Thinking of anyone grieving that today, I see you 🫶
Before infection, our members chose how to use each heartbeat.
Now #LongCovid limits what each beat can be used for.
Turn your phone landscape for the best viewing experience.
#LCAD26 #LongCOVIDAwarenessDay #LongCovidHeartbeats #EveryHeartbeatCounts
Graphic in muted greys from dark to light with 2 Long Covid SOS liferings faint in the background. A bold send icon in teal and a Long Covid SOS logo. Underneath text in dark green reads “Already written to your MP?Share your story or screenshot to inspire others to act.Together, we amplify our voices”
Have you already written to your MP?
Share your story or a screenshot of your message and tag us to inspire others to take action.
When people see others speaking up, it helps them find the confidence to do the same.
Together, our voices are louder.
📺️ Fantastic interview with Dr Rupert Higham from the Institute of Education at UCL and Prof David Putrino 'On Medical Education for Long Covid, ME and IACI'
It is divided into named chapters for accessibility and there is also a transcript.
#LongCovidAwarenessDay
youtu.be/S5amDZFaVeE?...
⚡️Right to Try⚡️
One key change @putrinolab.bsky.social would make if he had a magic wand would be prescribing freedom, especially in countries like the UK & Australia, for off-label meds.
Full interview 'On Medical Education' 🖇️ 👇️
#LongCovidAwarenessDay
MILLIONS OF PEOPLE WITH ME/CFS AND LC SAYING EXERCISE MAKES THEM PERMANENTLY WORSE A DOCTOR WHO HAS NEVER EXPERIENCED PEM NO, you all are Wrong, Huge crowd of people and then a lone voice in the front
To mark International Long COVID Awareness Day
ME/CFS = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
LC = Long Covid
PEM = post-exertional malaise
Prevalence estimates in a bar chart beside number of participants in Long COVID trials in Canada. PHAC eestimates 1.4M StatCan estimates 3.5M ever had it with 2.1M still having symptoms. They estimate 600K missed work or school. Only 4.2k participants in Long COVID trials enrolling in Canada
An estimated that 2.1M Canadians are living with #LongCOVID and 600k are missing work or school as a result. Most have no access to trials. Only 38 are enrolling in Canada with less than 4.5k total participants.
For #LongCOVIDAwarenessDay, I looked at funding and trials.
So many of us affected 🙁
Side by side image. On the left a person wearing a red ski jacket, black helmet, and goggles stands on skis at the top of a snowy mountain slope with their arms raised, holding ski poles. Snow-covered mountains stretch across the background under dramatic clouds with sunlight illuminating the peaks. On the right a woman with blonde hair tied back, wearing sunglasses, a pink cardigan, blue cropped trousers sits on a mobility scooter. Her hands are holding the handlebars. There are grey railings, trees and water in the background.
Before their Covid infection, our members were free to choose how they used each heartbeat.
Now, #LongCovid limits what they can use each beat for.
The change from before to after is obvious
#LCAD26 #LongCOVIDAwarenessDay #LongCovidHeartbeats #EveryHeartbeatCounts
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Long Covid Families is proud to have successfully advocated for the inclusion of children in pediatric Long COVID clinical trials.
Children cannot be left out of treatment research. Including them from the start leads to faster, more effective, and more equitable care.
Front page @latimes.com today
Thousands in LA County, Millions in the US
@corinnepurtill.bsky.social www.latimes.com/science/stor...
Research suggests that around 7% of people with Long Covid may meet diagnostic criteria for PoTS. Many more experience broader autonomic symptoms and abnormalities beyond PoTS.
❤️🩹 To find out more watch this short 4-min video: www.youtube.com/watch?v=XoKm...
#LongCovidAwareness #PoTS
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PoTS affects the autonomic nervous system, which controls automatic functions such as heart rate, blood pressure and breathing.
Common symptoms include palpitations, dizziness and a marked increase in heart rate on standing.
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The theme for International Long Covid Awareness Month is Every Heartbeat Counts, highlighting how Covid can affect heart health. We're sharing some information from our friends at @PoTSUKCharity, who support people with Postural Tachycardia Syndrome.
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