Long Covid SOS Profile picture
UK based charity advocating for those impacted by #LongCovid Recognition - Research - Rehabilitation Email info@longcovidsos.org
Dec 10 5 tweets 2 min read
🧵📢We are excited to announce the publication of our new, revised and updated leaflet for GPs, developed with @Clinicalpcs and @rcgp

It provides a comprehensive, easy reference to help doctors recognise, diagnose and identify treatments for #LongCovid
longcovidsos.org/gp-leaflet Our survey earlier this year of patients' experiences with their GP showed over half were unhappy with the care provided

27% said their GP knew very little about #LongCovid and struggled to offer any help

9% were told they were suffering from anxiety

longcovidsos.org/gp-engagement-…Image
May 23 6 tweets 2 min read
🧵#LongCovid was not mentioned in Simon Case's witness statements , nor during questioning by the counsel for @covidinquiryuk today

Our KC Anthony Metzer tries to jog his memory about whether any data in prolonged symptoms informed govt decisions

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Case was well prepared but not for questions about #longcovid and struggled to remember when or whether it was taken into account when policy was agreed on NPI's

He vaguely remembers @CMO_England talking to the PM about the possibility of there long term effects of #covid

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Apr 22 11 tweets 3 min read
Excellent information and set of infographics from @YaleSPH
Thank you for sharing your knowledge
These should be seen by as many people as possible

H/t @fitterhappierAJ
Individual images in 🧵 Image Facebook link here facebook.com/photo.php?fbid…
Mar 27 5 tweets 3 min read
🧵Today Long Covid SOS launches a brand new GP leaflet endorsed by @rcgp

Most people with #LongCovid are still unhappy with the knowledge and treatment options available from their GP according to our recent survey data

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longcovidsos.org/gp-leaflet
Image The leaflet will provide easy reference to help doctors recognise, diagnose and identify treatments available on the NHS and approved by @NICEComms for #LongCovid symptoms

It will support both doctors and patients in accessing appropriate therapies



2/5longcovidsos.org/gp-leaflet
Jul 12, 2023 5 tweets 2 min read
We applaud the publication of this excellent review paper by @Daltmann10 & team. It’s taken us a while to read!

The paper investigates published trial data for each of the key theories about what causes #LongCovid

We hope we’re summarising accurately🧵

nature.com/articles/s4157… The paper notes that there are many studies into Covid & Long Covid - no other post-viral illness has been looked into so broadly this early on - and some of the studies appear to have contradictory findings in the search for biomarkers and mechanisms.
Jun 6, 2023 5 tweets 4 min read
Our KC Anthony Metzer speaking now @covidinquiryuk

"People with #LongCovid deserve answers and deserve to know what the government knew about this pernicious disease and what steps if any it took when confronted with the reality of huge numbers of people not recovering from it" Image "Module 2's whole approach to #LongCovid has been profoundly flawed. It has been added, seemingly as an afterthought to some Rule 3 requests but its relevance is still not appreciated. None of the expert reports received to date address long term morbidity"

@covidinquiryuk
Jan 30, 2023 6 tweets 15 min read
Today @LongCovidSOS along with 20 other organisations has written to @SteveBarclay calling for a Public Space Ventilation Bill in order to prevent #COVID19 transmission
"There is no downside to clean air, it will benefit everyone"
#LongCovid
#VentilationBill
Read the letter here ImageImage You can find out more about the letter on our website here:
"The UK Is Running Out Of Clean Air"

longcovidsos.org/post/long-covi…
Jul 28, 2022 4 tweets 4 min read
The @NHSEngland Plan for Improving #LongCovid Services has just been published, you can find it here.

We did get the opportunity to comment on the content before publication. Your comments welcome too, right here!

england.nhs.uk/publication/th… National Commissioning Guidance for #LongCovid has also been published today by @NHSEngland
@NHSEngland Patient and Public Voice Partners were involved in this document's development

england.nhs.uk/publication/na…
Jul 27, 2022 5 tweets 4 min read
New report from @TheIFS

#LongCovid is costing the UK up to £1.5bn a year in lost earnings - “a significant part of the pandemic’s legacy”

110k on sick leave - but this doesn't include those who have lost / left their jobs

Poorer people most affected

theguardian.com/society/2022/j… 400k more people now economically inactive c/w pre pandemic incl +200k long term sick not included in the IFS figs notes @Telegraph

"As well as hurting the wider economy, #LongCovid also deals a painful blow to the finances of those who suffer from it"

telegraph.co.uk/business/2022/…
May 23, 2022 4 tweets 2 min read
“One in eight people who were hospitalised with COVID-19 between May 2020 and March 2021 were later diagnosed with myocarditis, or heart inflammation, according to major new research into the clinical long-term effects of COVID-19.” ⁦@UofGlasgowgla.ac.uk/news/headline_… “The largest study of its kind to date was led by the University of Glasgow in collaboration with NHS Greater Glasgow and Clyde (NHS GGC), and followed for one year, in real time, 159 patients after they were hospitalised with COVID-19” #LongCovid #CountLongCovid
Apr 1, 2022 5 tweets 3 min read
#LongCovid does not discriminate. People of all ages and backgrounds have had their lives and careers robbed from them by this disease. A 🧵 highlighting some younger people with #LongCovid. Ravi is 23 years old. He plays the violin and is currently struggling to get his masters done while fighting #LongCovid.
Oct 7, 2021 5 tweets 3 min read
New @ONS data released today
🔹1.1 million people have #LongCovid - 1.7% of the population
🔹831,000 have had symptoms >12 weeks
🔹405,000 symptoms 1 year +
🔹706,000 activities limited
🔹221,000 severely impacted

Increases reflect start of current wave

ons.gov.uk/peoplepopulati… “Compared with the previous month, prevalence of self-reported #LongCovid was notably higher among young adults aged 17 to 24 years”
@ONS

Sadly the impact on children and young people is going to increase significantly in the months to come
#LongCovidKids
Jan 14, 2021 42 tweets 21 min read
The @UKParliament debate on #LongCovid is about to start. You can view it live here parliamentlive.tv/Event/Index/80…

We'll be live tweeting for those unable to listen in

@LaylaMoran @AppgCoronavirus @march_change @GwynneMP Public awareness of #LongCovid is poor. There are potentially 4000 new cases of #LongCovid every day this year @LaylaMoran