#MCAS folks—
The newly formed International Society for Mast Cell Activation Syndromes has a 10-min survey to learn how they can best serve MCAS patients and caregivers.
Please take it, please share it!
Survey: forms.office.com/e/N4RDJYVep0
Org: ismcas.org
Qs: advocacy@ismcas.org
It calmed me but didn’t cure me!
I’m still here. First wave early 2020. Bedbound for most of the first year improved slowly over the next few years then got reinfected and am not back to where I had got to
Bereaved family members of Covid victims write to Nigel Farage urging him to sack his Croydon candidate who said COVID was a "staged event" by the US military, with vaccines used to control the population.
Reform has not responded to our story revealing his views
bylinetimes.com/2026/04/15/r...
Muted soft grey background with Long Covid SOS lifering logos. Long Covid SOS logo at top. Underneath the words “ONE MONTH ON… Have you had a response yet?” A white rectangle tick box with drop shadow reads “MP Response Status: with an email icon Yes in teal No in orange “ At the bottom of the page in white reads “Let’s keep the conversation going”
One month on - have you heard from your MP?
Many of you spoke up, shared your stories, and made #LongCovid harder to ignore
If you’ve had a response, share it - it may help someone else take the first step
If not, follow up. We don’t stop at one message
We will not be ignored.
#longcovidawareness
Thank you a good read reminding me what is important ♥️
Last month I had the galactic honor of a lifetime to share remarks at Alice Wong's Celebration of Life. Today @thesicktimes.org published an extended version—which share how @sfdirewolf.bsky.social wielded Disability Justice to deliver #LongCovid advocacy's best moment (yet). /1
Alice Wong, an Asian-American woman in her early 50s, wears a black t-shirt that says “keep masks in health care”. She rocks a rich plum lipstick and cool multicolor sunglasses. She has a tracheostomy attached to a ventilator. The text reads, “The Sick Times. Alice Wong showed us Disability Justice makes our advocacy stronger. By Charlie McCone.”
Alice showed me I can lead a meaningful life — and be cool doing it — while sitting with my pain and limitations. And while we, sick and disabled, channel our rage back at those trying to ignore and erase us.
In the wake of her passing and her recent celebration of life, @loscharlos.bsky.social shares how Alice Wong taught him the power of Disability Justice and how she wielded it to bridge the hesitancy between disability, Long Covid, and COVID-cautious communities. bit.ly/4mohc12
Ed Davey, "I'm afraid, we shouldn't be rewarding Donald Trump with this state visit"
"Truth is, Trump has insulted our country, insulted our troops, undermined our economy with tariffs, and this illegal war with Iran which is putting up people's petrol prices, energy bills and mortgage costs"
Thanks to @lauramcghie.bsky.social for inviting our friend Kim to speak about #LongCovid on BBC Radio 5 Live last night:
The interview is 15mins starting at 2:52
www.bbc.co.uk/sounds/play/...
Thank you
Photo of microphone with BBC radio Leeds printed on it.
Spoke to the BBC this morning as part of their coverage of 6 yrs since the first lockdown.
➡️ #LongCovid devastates lives
➡️ Government have covid amnesia
➡️ Need urgent research into treatments
➡️ Need prevention to be taken seriously
Look/listen out for it on Monday.
The Long Covid groups call on policymakers to ensure the findings of the report are implemented and result in meaningful change for people with #LongCovid
@longcovidphysio.bsky.social @longcovidsupport.bsky.social @longcovidkids.bsky.social
We particularly emphasise the Inquiry’s finding that ringfenced Long Covid research funding stopped in 2021. We continue to call for dedicated research funding for LC:
Longcovidsos.org/researchfunding
Today the #LongCovid groups call for urgent action in response to the #CovidInquiry Module 3: Healthcare report which confirms widespread and ongoing failings.
Longcovidsos.org/post/covidinquiryhealthcarepr
Hah
A patient in hospital Headline: Long Covid Awareness Day Hailed As Major Step Towards Never Mentioning That Thing Ever Again Story by Michael Biggs and Ziplok Toosniffy Photo from Adobe
Long Covid Awareness Day Hailed As Major Step Towards Never Mentioning That Thing Ever Again
On #LongCovidAwarenessDay 2026, we hear from the healthcare professionals supporting #pwLC every day
Rebecca Livingston is a respiratory physiotherapist working with people living with #LongCovid. In her work, she sees first-hand the realities of our condition & the impact it has on people’s lives.
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.
Key text in the middle: How serious a problem is Long Covid? How bad can it be? Top: Image: Greens Against Covid logo (a picture of the Covid virus in white with a X through it surrounded by the Green Party of England and Wales petals) + text “Greens Against Covid”. #LongCovidAwarenessDay. The Long Covid Awareness Day ribbon in teal and grey. Background colours: Fair Green and shades of teal, green and grey. Imprint: Promoted by Covid and Long Covid Campaign Working Group (Green Party), c/o PO Box 78066, London SE16 9GQ.
Key text in the middle: “As a healthy 39 year old woman I was reassured that Covid was not a risk to me. What no one ever mentions is that it can make you chronically ill & wheelchair bound. The Greens are the ONLY party with a long covid policy.” Anne-Marie. Top: Image: Greens Against Covid logo (a picture of the Covid virus in white with a X through it surrounded by the Green Party of England and Wales petals) + text “Greens Against Covid”. #LongCovidAwarenessDay. The Long Covid Awareness Day ribbon in teal and grey. Background colours: Fair Green and shades of teal, green and grey. Imprint: Promoted by Covid and Long Covid Campaign Working Group (Green Party), c/o PO Box 78066, London SE16 9GQ.
Key text in the middle: “I’m a witness to lives devastated by Long Covid. Covid remains ndiscriminate, regardless of your passions and life missions. While Covid’s bodily damage is often quiet until it’s too late, the Green Party’s actions won’t be. This party’s Long Covid policy remains the only one in the running.” Georgia Leach. Top: Image: Greens Against Covid logo (a picture of the Covid virus in white with a X through it surrounded by the Green Party of England and Wales petals) + text “Greens Against Covid”. #LongCovidAwarenessDay. The Long Covid Awareness Day ribbon in teal and grey. Background colours: Fair Green and shades of teal, green and grey. Imprint: Promoted by Covid and Long Covid Campaign Working Group (Green Party), c/o PO Box 78066, London SE16 9GQ.
On #LongCovidAwarenessDay, We recognise that in its seventh year, Covid continues to devastate lives.
#LongCovid #EveryHeartbeatCounts #LongCovidStandUp #fundlongcovidresearch @nataliegreenpeer.bsky.social @carladenyer.bsky.social @zackpolanski.bsky.social @elliechowns.bsky.social
On #LongCovidAwarenessDay 2026, we hear directly from the people trying to help.
Dr Melissa Heightman is a respiratory consultant and researcher working with people living with #LongCovid. In clinic, she sees first-hand the impact the condition has on patients’ lives.
A muted grey background gradiating from light to dark with 2 Long Covid SOS liferings faintly in the background. Long Covid SOS logo in top left corner. A graphic of a teal envelope with the text “A call for sustained funding for Long Covid research Dear MP I am writing as your constituent to ask for your support in securing sustained funding for research into Long Covid. Long Covid has not gone away. “ on white paper half out of the envelope. Dark green text ranged left at the bottom reads “Stop scrolling.Take one minute. 1. Read our open letter 2. Use our template to write to your MP 3. Demand funding for Long Covid research”
Your voice matters.
Take one minute to write to your MP and demand urgent #LongCovid research funding.
Every message counts.
longcovidsos.org/researchfunding
Fund Long Covid Research - we need answers.
#longcovidawarenessday #fundlongcovidresearch #everyheartbeatcounts
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
A muted grey background gradiating from light to dark with 2 Long Covid SOS liferings faintly in the background. Long Covid SOS logo in top left corner. A graphic of a teal envelope with the text “A call for sustained funding for Long Covid research Dear MP I am writing as your constituent to ask for your support in securing sustained funding for research into Long Covid. Long Covid has not gone away. “ on white paper half out of the envelope. Dark green text ranged left at the bottom reads “Stop scrolling.Take one minute. 1. Read our open letter 2. Use our template to write to your MP 3. Demand funding for Long Covid research”
✉️ We’ve made it easy: use our template to write to your MP and ask them to support Long Covid research. Every message counts.
💪 Together, our voices can help ensure policymakers take this seriously.
Fund Long Covid Research - we need answers.
#fundlongcovidresearch #everyheartbeatcounts
#LongCovid continues to disrupt families, daily life, & work. Without sustained research funding millions will continue to wait for answers, treatments, and support.
📄 Read our full letter to see why urgent action is needed.
Www.Longcovidsos.org/researchfunding
Muted soft grey background radiating from dark to lighter with 2 Long Covid SOS life rings shown faintly. Long Covid SOS logo top centre with dark green Open Letter text underneath reads “Open letter: Patient-led charity, Long Covid SOS is calling for sustained funding for Long Covid research” in bold. “Six years after the start of the pandemic, people across the UK are still living with Long Covid. Many of your constituents remain unable to work, rely on ongoing NHS care, and face financial insecurity and uncertainty about their future. Long Covid has not disappeared. For many families it continues to reshape daily life, while also affecting workforce participation across the country.”
#LONGCOVIDAWARENESSDAY
Stop scrolling
1️⃣ Read our open letter
2️⃣ Use our template to write to your MP
3️⃣ Demand funding for #LongCovid research
Six years after the start of the pandemic millions are still living with Long Covid.
On #LCAD26 we ask UK policymakers for sustained funding for LC research
A picture of Ondine Sherwood wearing a Long Covid SOS t-shirt
Today marks one year since we lost our co-founder & dear friend Ondine Sherwood. As we continue her work, she is never far from our thoughts and our commitment to honour her memory.
Graphic for March 8th International Women’s Day. The Long Covid SOS logo appears at the top in awareness day colours. Beneath it, “March 8th International Women’s Day” in teal and underneath in a lighter teal shade “Women living with Long Covid and other invisible illnesses deserve to be heard, believed and supported” “No more gaslighting” in orange italics. At the bottom the image shows layered silhouettes of diverse women in profile, in different colours and hairstyles to represent solidarity and shared experience. A faint lifering motif from the Long Covid SOS logo forms the background. And at the bottom left text reads “#IWD2026”
Women are too often dismissed when it comes to their health told it’s “anxiety”, “your age” or “all tests are normal”
#LongCovid is following a pattern many women already know. Women living with Long Covid deserve to be heard, believed and supported.
#IWD2026 #NoMoreGaslighting
Dark, distressed graphic styled like a cracked road or hazard sign in teal, black and white. A large warning symbol is on the left. Large, bold, black weathered lettering reads “SPREAD AWARENESS NOT COVID.” Underneath is Long Covid SOS logo. The background is textured with fracture lines and a gritty, apocalyptic feel, conveying urgency and a strong public health message about Long Covid awareness. Text at the bottom reads Long Covid Awareness.
Do we really want to continue down this path of disease spreading unchecked?
Millions of us are left to navigate life-altering illness without research, recognition or rights.
This isn’t a dystopian film
This is year 6 of Covid
#Covid infections are still causing #LongCovid
#LongCovidAwareness
