Long Covid SOS
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longcovidsos.bsky.social
Long Covid SOS
@longcovidsos.bsky.social
2.6K followers 140 following 280 posts
UK based charity advocating for those impacted by #LongCovid
Recognition - Research - Rehabilitation

www.longcovidsos.org
info@longcovidsos.org

Charity reg no 1199120
Posts Replies Media Videos
longcovidsos.bsky.social
Our Chair Dr Lucy Moore quoted in the BBC News Live blog on the Covid-19 Inquiry Module 2 Report:

“…those with Long Covid still have more questions than answers.”

#LongCovid
A screen capture from BBc News Live feed time stamped 19:41 Ministers 'slow to acknowledge seriousness of long Covid' Image showing a sign saying “NEED TO REST, FORCED TO PROTEST #RESEARCHLONGCOVID” Photo attributed to GETTY IMAGES Text reads: Today's report also addresses long Covid, and whether the government offered sufficient warning of the risks of the condition. Even once it became clear there were risks, there were "no public health campaigns" focused on this area, the report says. This meant people were "unable to make their own, fully informed decisions about the levels of risk they were prepared to tolerate". Screen capture from BBc News live blog, text reads: "The UK government - in particular Mr Johnson - remained slow to acknowledge the seriousness and prevalence of the condition, " the report adds. It concludes that long-term conditions must be built into any strategy for future pandemics. Long Covid groups have welcomed the inquiry's recognition of those still suffering, but some see it as just the first step. "Our stories do not end with this inquiry and should be a wake-up call for what needs to change now as those with long Covid still have more questions than answers," says Lucy Moore, chair of the charity long Covid SOS.
November 20, 2025 at 9:09 PM
longcovidsos.bsky.social
UK Covid-19 Inquiry Module 2 Report: #LongCovid wasn’t just a medical issue, it was a governance failure. Millions were left without recognition or support.

@longcovidphysio.bsky.social @longcovidsupport.bsky.social @longcovidkids.bsky.social
Dark green background with a white speech bubble with the words in green “ Our stories do not end with this Inquiry and should be a wake-up call for what needs to change now as those with Long Covid still have more questions than answers.” Underneath in white “Dr Lucy Moore, Chair of Long Covid SOS”logo with an orange lifering
November 20, 2025 at 5:37 PM
longcovidsos.bsky.social
Our wonderful volunteer @helenld.bsky.social appeared on BBC Radio Gloucs yesterday, calling on the government and Health Secretary Wes Streeting to provide research funding and public health preventive action and messaging about #LongCovid
November 14, 2025 at 4:37 PM
longcovidsos.bsky.social
We are proud to share a deeply meaningful publication: the final paper co-authored by our late co-founder, Ondine Sherwood.

The paper identifies the nine top priorities for Long Covid research. This work honours her legacy and the power of patient-led science. 🧵
ALT text for cover image: An image that says 'frontiers ORIGINAL RESEARCH article Front. Public Health, 06 November 2025 Sec. Public Health Education and Promotion Volume 13 2025 https:/.b/./g/0 Co-creating a social science research agenda for Long Covid. Oonagh Cousins, Maaret Jokela-Pansini, Ella Barnard, Jo Dainow, Nisreen Alwan, Mark A Faghy, Caroline Dalton, Eileen Gilmour, Gail Davies, Ondine Sherwood, lan Patel, Lotus Westerhof, Beth Greenhough. There is a Long Covid SOS logo at the bottom of the image.
November 6, 2025 at 1:01 PM
longcovidsos.bsky.social
Recently we asked our #community to share their experiences of living with #LongCovid. What they told us was powerful, urgent and impossible to ignore.
October 30, 2025 at 5:51 PM
longcovidsos.bsky.social
Protecting others protects us all

With #Covid currently circulating there are steps we can take to prevent ongoing transmission

🏠 Stay at home
😷 Mask up
🧪 Test for Covid
🗣️ Tell others
A teal and green infographic from Long Covid SOS titled “Protecting others protects us all.” It features four sections with icons: 1. A house icon with the text “If you feel ill, stay home – it’s one of the simplest ways to protect others and recover quicker.” 2. A mask icon labelled “N95” with the text “Wear a high quality mask – wear a well-fitting mask, stay away from others and tell people you are ill.” 3. A test icon with the text “Take a Covid test – if symptoms last, a positive result can help you access Long Covid support.” 4. A window icon with the text “Keep indoor air fresh – ventilate by opening windows and using air filters where you can.” At the bottom: “For more information visit www.longcovidsos.org” with the Long Covid SOS logo.
October 27, 2025 at 11:47 AM
longcovidsos.bsky.social
💜 It’s #PoTSAwarenessDay 2025
#Covid uncovered what many already knew — #PoTS changes everything.

Many with #LongCovid are now being diagnosed with #PoTS — causing dizziness, brain fog, racing heart, fatigue + more.

💬 Have you been diagnosed after Long Covid?
Purple gradient to white from left to right graphic featuring concentric circular spiral signifying dizziness. Text in white and purple on the spirals reading: “Covid uncovered what too many already knew — PoTS changes everything.” At the bottom, the Long Covid SOS logo appears in white on the left, with the text “PoTS Awareness Day 25th October 2025” on the right in purple.
October 25, 2025 at 8:50 AM
longcovidsos.bsky.social
Invisible Disabilities Week is Oct 19–25

Not all disabilities are visible - but they deserve recognition, respect & support
For people with #LongCovid, disbelief has real consequences.

Invisible doesn’t mean imaginary.
#InvisibleDisabilitiesWeek

www.longcovidsos.org/post/invisib...
Graphic for Invisible Disabilities Week. The background is a white brick wall with large orange Long Covid SOS stamp design in the right top of wall. Bold stencil-style text reads: “Invisible Disabilities Week. October 19–25 (in black) Listen (dark green) Believe (teal) Support.” is in orange and underlined in black, and the Long Covid SOS logo appears at the bottom right also in black
October 22, 2025 at 7:28 PM
longcovidsos.bsky.social
Covid infections are climbing again. the only way to prevent #LongCovid is to avoid catching Covid.

There is no cure for Long Covid and repeated infections can make LC worse. Protect yourself & others by reducing your risk of infection. 1/2

Longcovidsos.org
Long Covid SOS infographic titled “The only way to prevent Long Covid is to avoid Covid.” Five teal boxes with orange warning-style icons: mask (N95), house, face with thermometer, ventilation fan, and crossed-out medical cross. Messages: wear a good mask, isolate if ill, test with symptoms, ventilate or meet outside, and remember Long Covid has no cure. Footer: website link and Long Covid SOS logo.
October 3, 2025 at 4:55 PM
longcovidsos.bsky.social
October is #DysautonomiaAwarenessMonth

For many with #LongCovid, dysautonomia means daily struggles with dizziness, palpitations, fatigue & more

We need research, support & compassion
Let’s #MakeNoiseForTurquoise this October

#POTS #Dysautonomia #invisibleillness
Turquoise background with overlapping blue circles. In the centre, a simple illustration of a person with turquoise hair. Text around the person reads: “Dysautonomia Awareness Month.” Circles highlight symptoms: gastrointestinal issues, PoTS, heart palpitations, fatigue, shortness of breath, dizziness, cognitive issues, temperature dysregulation. Fainter circles in the background say and many many many more Long Covid SOS logo at the bottom left in white
October 1, 2025 at 11:49 AM
longcovidsos.bsky.social
We're at a turning point. Since losing Co-Founder Ondine Sherwood in March ‘25, we need your help to continue our vital work. We’ve launched a funding appeal to hire our first paid team member to keep fighting for those with #LongCovid. Can you help secure our future?
Donate today: shorturl.at/J5aan
Orange background with teal abstract shapes. White bold text reads: “We need your help to keep fighting for those with Long Covid.” At the bottom is the Long Covid SOS logo.
September 25, 2025 at 3:32 PM
longcovidsos.bsky.social
📣Your voice matters. Help shape our future - what brought you to Long Covid SOS? What matters to you now?

Just two minutes could help shape our future:

form.typeform.com/to/WKRgCwn7
Four people sit on chairs against a green wall, each holding a colourful paper speech bubble in front of their face. The bubbles spell out the phrase “Help shape our future.” Above them, a large white speech bubble with the Long Covid SOS logo reads “Your voice matters!” At the bottom, text says “2 minutes to share your thoughts”
September 23, 2025 at 2:44 PM
longcovidsos.bsky.social
Thank you for being part of the Long Covid SOS community. A volunteer-led charity founded by people with #LongCovid, we've been fighting for recognition, research & real support since day one. 4 years on our mission is more vital than ever.

Follow us and watch this space for news & updates…
A gradient teal to dark green background with white text in the centre that reads: “We won’t let those with Long Covid be left behind.” Beneath this, the Long Covid SOS logo appears with the tagline “a lifeline since day one.”
September 18, 2025 at 2:59 PM
longcovidsos.bsky.social
We always take a short pause on social media posts after #LongCovidAwarenessDay to let our volunteers, who all have #LongCovid, recover from a very busy day.

After a very difficult week, we’ll be taking a slightly longer break.

We’ll be quieter for a bit & loudly advocating again soon.
Alt text A tribute image with a background of an ocean wave in deep blue and white tones. A rounded rectangular overlay contains white text that reads: A Pause to Honour Ondine Sherwood “We’re heartbroken by the loss of our dear friend. Ondine’s unwavering commitment to improving the lives of people with Long Covid, and the way she always encouraged our close-knit team to do our best, has left a lasting impact on our hearts and the community. In this time of shock and grief, we’re taking a short pause to reflect on her life and the incredible dedication she showed. It’s a chance for us to honour her memory and gather the strength to keep going with the work she cared so deeply about. Thank you for your support. We’ll be back soon, determined to carry on Ondine’s legacy—just as she would have wanted.” At the bottom right corner, the Long Covid SOS logo is displayed in white.
March 17, 2025 at 8:16 AM
longcovidsos.bsky.social
We tried but couldn’t
March 16, 2025 at 2:41 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
longcovidsos.bsky.social
🚨 Mythbusting #LongCovid with Dr Amir Khan🚨

Long Covid is real. It’s serious. And it’s affecting millions.

On #LongCovidAwarenessDay, #DrAmirKhan joins us to bust harmful myths.

Watch, learn, and share—because the more we talk about Long Covid, the harder it is to ignore.
March 15, 2025 at 9:12 AM
longcovidsos.bsky.social
Today, we honour Ondine.

Every post we share on #LongCovidAwarenessDay is dedicated to our co-founder, friend, inspiration & relentless advocate, Ondine Sherwood. Her passion, determination, & unwavering fight for recognition & support have left an indelible mark on the world.
A teal gradient background fades into black at the edges. White text in an serif font reads: Today, we honour Ondine. Every post we share this Long Covid Awareness Day is dedicated to our co-founder, friend, inspiration, and relentless advocate, Ondine Sherwood. Her passion, determination, and unwavering fight for recognition and support have left an indelible mark on the Long Covid community. Without her, Long Covid would be far less recognised. Without her, countless people would not have found the solidarity, hope, and strength they needed. And without her, our world feels immeasurably smaller. We miss you Ondine, so very much. Today, and always, we continue her fight. For Ondine. For all of us. In the bottom right corner, the Long Covid SOS logo appears in white.
March 15, 2025 at 8:36 AM
longcovidsos.bsky.social
We are heartbroken to share the loss of our co-founder, CEO, and beloved friend, Ondine, who passed away on Tuesday 11th March.

Longcovidsos.org/post/ondine-sherwood
A black background with centered white text. The heading reads, “In Honour of Ondine Sherwood.” The message states that Long Covid SOS is heartbroken to share the loss of their co-founder, CEO, and beloved friend, Ondine, who passed away on Tuesday, 11th March. It expresses love and condolences to her family. A small horizontal line is placed at the bottom. A black background with centered white text. The message describes Ondine as the driving force and heartbeat of the Long Covid SOS team, a dear friend, and a profound loss to the community. It expresses devastation at her passing but also a commitment to continuing her legacy. The final line states, “We will miss her every day.” A small horizontal line is placed at the bottom.
March 12, 2025 at 11:57 AM
longcovidsos.bsky.social
Thanks for all your orders today - pins are in the post winging their way to you care of RoyalMail 🤞

Don’t worry if you haven’t ordered yet - we can still post UK & international orders to keep the #LongCovidAwareness message alive all year round 🩵🩶🖤

longcovidsos.org/shop
A black background with a photo of a hand posting several grey packets into a red Royal Mail postbox. Above the postbox is teal text saying: #LongCovidAwarenessDay Today’s orders in time for last post. Royal Mail- they’re in your hands now…
March 10, 2025 at 4:26 PM
longcovidsos.bsky.social
UK LAST CHANCE for #LongCovidAwarenessDay on Sat 15th - our next batch ships this pm so order your pin by 1pm today (10th)

International & UK orders will keep shipping after today as #LongCovid isn’t just one day.

Wear your pin with pride all year
Longcovidsos.org/shop
Black textured background with a subtle teal glow behind a Long Covid SOS Awareness day ribbon pin in the colours grey, teal and black White text below says “ Every colour tells a story. The three hues of our Long Covid awareness ribbon represent the past, present, and future of our journey with this condition: 🩶 Gray: Loss & Grief 🩵 Teal: Hope & Support 🖤 Black: Loneliness & Isolation We stand with you”
March 10, 2025 at 10:34 AM
longcovidsos.bsky.social
On #CovidDayofReflection, we are thinking of and remembering all those who have had their lives changed irreversibly over the last five years through loss, bereavement, new disability, or otherwise.

We send our love to you all ❤️‍🩹

#LongCovid
A black background with a candle at the centre held in cupped hands. There is the outline of the Long Covid SOS lifering logo around the hands in grey. At the top centre orange text reads “National Day of reflection” Smaller orange text at the bottom centre reads “remembering those wehave lost and supporting those left behind” At the bottom right is a small white Long Covid SOS logo
March 9, 2025 at 10:06 PM
longcovidsos.bsky.social
Today we celebrate the strength and resilience of women, especially those navigating #LongCovid.

Let’s unite in solidarity with all women facing invisible illnesses.

Together we’ll fight for better care and lasting change for all women’s health.

#iwd2025 #internationalwomensday #womeninhealth
Pale grey background with a faded out large Long Covid SOS lifering stamp going off the edges Long Covid SOS logo in Awareness day colours of black, grey, teal and orange ‘MARCH 8TH INTERNATIONAL WOMEN'S DAY’ in bold teal text placed in the centre At the bottom are faded out overlapping silhouettes of different women in subtle hues of teal, brown and peach
March 8, 2025 at 10:39 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
Watch us pack your #LongCovid Awareness pins with love, in gorgeous spring sunshine accompanied by birdsong 🕊️🌞🌷

Another batch winging their way to you today!

Buy yours at longcovidsos.org/shop
- there’s still time!

#longcovidawareness #longcovidawarenessday #fyp #packanorderwithme #birdsong
March 6, 2025 at 5:34 PM