UK based charity advocating for those impacted by #LongCovid
Recognition - Research - Rights
www.longcovidsos.org
[email protected]
Charity reg no 1199120
@longcovidsos.bsky.socialYes we feel the same and you are welcome. We’ll keep trying!
Long Covid SOS
@longcovidsos.bsky.social
@longcovidsos.bsky.social@longcovidsos.bsky.socialWe have written to the JCVI before about the evidence that vaccination reduces the risk of developing Long Covid. We’ve now written AGAIN following their advice for autumn 2027
2 million #pwlc in the UK.
Yet #LongCovid isn’t mentioned in the latest advice.
@georgemonbiot.bsky.socialReposted by @longcovidsos.bsky.socialHere's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2
www.theguardian.com/commentisfre...
theguardian.comAbandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George MonbiotChanges in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
@natashadevon.bsky.socialReposted by @longcovidsos.bsky.socialGeorge will be coming on my show this weekend to discuss this very important article.
@lindsayskipper.bsky.socialReposted by @longcovidsos.bsky.socialFor those too unwell to read the full paper or thread, here is short animation to show what happened in the ERASE-LC trial which tested the drug Remdesivir with people who have long Covid
@georgemonbiot.bsky.socialReposted by @longcovidsos.bsky.socialSorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together. And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2
@actionforme.bsky.socialReposted by @longcovidsos.bsky.social📢 New self‑advocacy resource now available: Impact Statement Template.
Our new resource helps people with ME communicate how ME affects them and what support they need.
Download here 👇
@georgemonbiot.bsky.socialReposted by @longcovidsos.bsky.socialThanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice. #ME/CFS
@georgemonbiot.bsky.socialReposted by @longcovidsos.bsky.socialIntending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.
@thev.bsky.socialReposted by @longcovidsos.bsky.socialWhy Are So Many Young Women Being Diagnosed With Chronic Health Conditions, Apart From The Obvious Reason
@skeuomorphology.bsky.socialReposted by @longcovidsos.bsky.socialNHS England digital are proposing changes to their data releases, including stopping monthly data releases of covid hospital data. They propose to publish only in winter, alongside flu beds data.
@longcovidsos.bsky.socialThis means so much. Thank you again
@longcovidsos.bsky.socialThank you for your continued support 🛟
@drjoepajak.bsky.socialReposted by @longcovidsos.bsky.socialNasal vaccines that target infection at its entry point could help block transmission and stop future pandemics before they take hold. Research is advancing, but investment and focus matter.
Reference: @nature.com, for info
#Vaccines #PandemicPreparedness #PublicHealth
www.nature.com/articles/d41...
@longcovidsos.bsky.socialWe need to keep talking about Long Covid and keep asking what is happening to the people who have disappeared from view.
Take a look at our website to see how we are doing to help people with Long Covid in the conversation
longcovidsos.orgLong Covid SOS Charity | Recognition Research RightsLong Covid SOS is the voice of the thousands of Long Covid sufferers in the UK. We are throwing a lifeline to all those who are living with the debilitating impact of Covid-19: Long Covid
@longcovidsos.bsky.social#LongCovid hasn’t gone away. People have just become much less visible
- stopped working
- stopped going out
- had to change their lives completely
- no longer being counted in the same way.
Lack of testing has ramifications. Burying the statistics matters.
Less visible doesn’t mean less affected
@thesicktimes.orgReposted by @longcovidsos.bsky.socialAs @mileswgriffis.bsky.social and his husband participated in the effort to rehabilitate the burn scar from the 2020 Dome Fire, the ritual of planting the Joshua trees took on an even greater meaning when he realized the uncanny overlaps with the COVID-19 pandemic. thesicktimes.org/2026/09/08/w...
@nisreenalwan.bsky.socialReposted by @longcovidsos.bsky.socialWe are inviting adults in the UK with lived experience of #LongCovid to be interviewed for a study exploring the role of local environment – please see our flyer for further details.
Please share :)
@longcovidsos.bsky.socialAnyone living with #LongCovid knows we can’t afford to be complacent about COVID, even if others are.
Sometimes protecting yourself means going against the norm you’re surrounded by.
For #pwLC, another infection isn’t something we can simply shrug off.
@longcovidsos.bsky.socialYet another wave of COVID and prevention still isn’t being taken seriously. Until prevention is properly prioritised, we have to take responsibility for our own risk reduction. That means continuing with the practical precautions we know work, even if those around us have stopped taking them.
