Long Covid Support Founding Trustee Margaret O'Hara at the NHS England National Long Covid Conference met up with Ondine Sherwood 💙 and Sarah Barley-McMullen (she/her) from Long Covid SOS @longcovidsos.bsky.social. The patient voice is strong! #StrongerTogether #LongCovid #LongCovidRuinsLives

#STIMULATE_ICP is studying effectiveness of simple medications & recruiting until July 2024. If you have ongoing symptoms & are in Highlands, Tameside,Sheffield,Oxford, Reading,Plymouth,Leicester & London, you may be eligible. Please contact us at stimulate-icp.org/faq 🙏🏽

Great to hear about plans for a new professional society for #LongCovid and other post-viral conditions under leadership of MANOJ SIVAN @melheightman and other multidisciplinary colleagues. 👏🏽👏🏽

It’s a long weekend here in the UK, so we’re dialling back our social media activity to give our volunteers a break. While we’re away, see if you can spot yourself raising #LongCovid awareness in this lovely collage - thanks to all our supporters ❤️

@lornamcfindy @Drjohouse Long Covid Support NHS England MANOJ SIVAN Ondine Sherwood 💙 Long Covid SOS @longcovidsos.bsky.social @Daltmann10 Sarah Barley-McMullen (she/her) Trisha Greenhalgh Gone outside for a breather? Who has spare energy to go for a walk when you don’t need to because the air quality inside is excellent? Please stop with the mask policing, it’s totally demoralising. It wasn’t our meeting we had no power to mandate masks

Here is our statement in response to Rishi Sunak’s ‘full-on assault on disabled people’ as The Guardian described it The system blames and fails us in equal measure, but we will continue to address these injustices and do our best to campaign against them and advocate for change.

I was interviewed for this timely article along with one of our fantastic Long Covid SOS @longcovidsos.bsky.social volunteers "Our recent GP survey showed that over 62 per cent of #LongCovid patients received no practical help from their GPs and 9 per cent were told their symptoms were down to anxiety.”

🧵The #LongCovid Groups received a reply from Maria Caulfield CBE We are very disappointed at her approach and would like to emphasise that: 📌Extensions to projects is not equivalent to more funding 📌"Existing funding routes" are inadequate for a brand new disease 1/3

Visiting your GP? Please point your doctor in the direction of our GP leaflet It has been enthusiastically received by GPs & ICBs We would love it if more doctors could use it when assessing patients with #LongCovid Ask them to scan this QR code to view/download the leaflet

On #MEAwareness day, Long Covid SOS acknowledge & are grateful for everyone with ME who has been raising awareness of all our linked symptoms for years before we joined your ranks. You are in our thoughts; our communities can advocate for each other & stand stronger together.

We would like to congratulate Keir Starmer on the The Labour Party election victory We hope this new government heralds a change in approach to conditions like #LongCovid and that it will support each of the 5 basic Rights every person with #LongCovid is entitled to 1/4

"Adequate preparation and education in the early days of the pandemic and during the critical period before it emerged could have avoided neglect & distress for so many" As our CEO Ondine Sherwood 💙 explains #LongCovid was foreseen and should have been anticipated bmj.com/content/386/bm…

I wrote about the UK Covid-19 Inquiry module 1 report for The BMJ #LongCovid didn't get a mention - why? Because we and our legal team weren't there to push the agenda The inquiry MUST consider #LongCovid throughout the process Long Covid SOS @longcovidsos.bsky.social bmj.com/content/386/bm…

The #LongCovidGroups stand outside the Covid Inquiry demanding research, and answers for the 2 million + people living with Long Covid in the UK RIGHT NOW!! #WeNeedAnswers #LongCovid #Covid_19

🧵"They describe confusion and uncertainty as to what was happening to them a lack of publicly available information & a lack of concern from GPs...even after diagnosis, many have struggled to access suitable care and support" #LongCovidGroups Sarah Hannet KC UK Covid-19 Inquiry 1/4

Don't forget to sign up for the fantastic 'Time To Get Organised' Conference this weekend! Our team member Sarah Barley-McMullen (she/her) will be presenting on #LongCovid and inequalities on Sunday morning with our CEO Ondine Sherwood 💙 on the panel

We're very proud that we have three team members representing Long Covid SOS at UK Covid-19 Inquiry today Thanks to Garry, @DaviesLunt and Ondine Sherwood 💙 for making the trip and representing the #longCovid community