A collage-style body map artwork showing a human figure filled with words, drawings, and magazine cutouts expressing experiences of Long Covid. The head is topped with the word “Tired” in bold red letters. Other words and phrases include “Help,” “No energy,” “Keep out,” “Travel,” and “You might as well forget all that!” The figure is decorated with colorful lines, crosses, and swirls. At the bottom of the image, text reads: Body Mapping Toolkit Launch, with logos from SoGE (School of Geography and the Environment), Long Covid Support, and the University of Oxford.
✨ New: Long Covid Body Mapping Toolkit ✨
We’re so pleased to share this new resource, co-created with people living with #LongCovid, Long Covid Support and
@ox.ac.uk
It’s designed to help people express and share their experiences.
🧵👇
27.08.2025 10:56 — 👍 7 🔁 6 💬 2 📌 1
Jeeeees
Wordle 1,527 6/6
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24.08.2025 16:04 — 👍 1 🔁 0 💬 0 📌 0
I've still got mine somewhere too
24.08.2025 16:03 — 👍 0 🔁 0 💬 0 📌 0
Wordle 1,493 4/6
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21.07.2025 08:40 — 👍 8 🔁 0 💬 0 📌 0
Square image with white background and blue frame. In top left corner is the PHOSP I logo.
On the left is a map of Engrand, Scotland and Wales with several areas highlighted in red. Header says Long Covid Treatment Trial Now Recruiting. There is a list of sites.
University Hospitals of Leicester NHS Trust.
Guy's & St. Thomas' NHS Foundation Trust.
Kings College Hospital NHS Foundation Trust.
University College London Hospitals NHS Foundation Trust.
Oxford University Hospitals NHS Foundation Trust.
Sheffield Teaching Hospitals NHS Foundation Trust.
Cambridge University Trust, Addenbrookes.
University Hospitals of Birmingham NHS Foundation Trust.
NHS Greater Glasgow and Clyde.
Manchester University Hospitals NHS Foundation Trust.
Northern Care Alliance NHS Foundation Trust.
North Bristol NHS Foundation Trust.
University Hospitals of Coventry and Warwickshire NHS Trust.
Cardiff and Vale University Health Board.
At bottom is the study's website address www.phosp.org/phosp-i/ and QR code.
📣 1/2. Now Recruiting in UK - #LongCovid Treatment Trial!
PHOSP-I is trialling Tocilizumab to treat ongoing inflammation.
🔴 Recruitment includes people who were not hospitalised with acute Covid
🔴 Several sites open - see map
Find out more on our website - link below ⬇️
11.07.2025 15:17 — 👍 14 🔁 17 💬 1 📌 0
Wordle 1,486 3/6
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14.07.2025 16:27 — 👍 0 🔁 0 💬 0 📌 0
Wordle 1,467 6/6
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25.06.2025 06:13 — 👍 0 🔁 0 💬 0 📌 0
Colourful background with a large white box in the centre. At the top of the box are three logos for School of Geography and the Environment, University of Oxford and Long Covid Support. Text below the logos says When you can't find the words: Long Covid Body Mapping Toolkit Webinar Launch. Friday 27th June 11am BST Online.
🎨 1/2. When You Can’t Find the Words – Join us for the launch of a new body mapping toolkit for people with #LongCovid!
📅 Friday 27th June 2025
🕚 11am UK time
📍 Online
A creative way to express what words can’t.
For more information & to register, see link below. ⬇️
16.06.2025 12:21 — 👍 11 🔁 11 💬 1 📌 1
At the top is the text "World ME Day 2025" on a vibrant orange background. Below, text reads: "After generations of neglect and empty promises, now is the time for action." Underneath, there is a collection of logos from various ME/CFS, fibromyalgia, and Long COVID advocacy groups, including #ME Action UK; #ThereForME; Action for ME; Cambridge ME Group; Crunch ME; Hope 4 ME & Fibro Northern Ireland; Kirklees & Calderdale IMESG; Long Covid Nurses & Midwives UK); The ME Association; ME Local Groups Network UK; MERC PAG; Not Recovered UK; Oxfordshire ME Group for Action; Physios for M.E.; Tymes Trust; The 25% ME Group; Keyworker Petition UK; Long Covid Advocacy; Long Covid Physio; Long Covid Scotland; Long Covid Support; ME positive; Sheffield ME & Fibromyalgia Group; Walsall Fibro M.E. Support; Bury & Bolton ME/CFS & Fibromyalgia Support Group; ME/CFS Friendship Group in Gloucestershire; and ME Group Staffordshire.. Below, a dark blue banner reads "JOINT STATEMENT" in white capitals.
A text-based document titled "Joint Statement for World ME Day 12.05.2025". The statement is a collaborative call to action endorsed by multiple ME/CFS and Long Covid organisations. It emphasizes the urgent need for meaningful investment in research, clinical care, public awareness, and support for people living with ME and associated post-viral conditions, including Long Covid. The document references the scale of the impact with an estimated 1.3 million people living with ME in the UK. The statement is signed by numerous advocacy groups across the UK including Long Covid Support.
Today, on #WorldMEDay, we’re standing with 27 other organisations in solidarity with the UK’s ME community.
PwME: We stand with you in the face of indescribable loneliness, pain and suffering to deliver a simple message to the UK government.
Now is the time for action.
#LongCovid
12.05.2025 19:18 — 👍 22 🔁 7 💬 1 📌 1
Blue background with white text that reads Survey Have your say on welfare benefits reform. Calling people with Long Covid and ME/CFS. Four logos at the bottom of Long Covid Support, Action for ME, ME Local Network, #ThereforME.
📣 1/5. The UK Government is proposing significant changes to welfare benefits.
These reforms could profoundly impact individuals with #LongCovid and #MECFS.
We've launched a survey to gather your insight. ⬇️
16.04.2025 11:52 — 👍 43 🔁 23 💬 6 📌 9
🚨12 month follow-up of COVID non-hospitalised showed:
⚠️46%⬆️ in outpatient respiratory infections
⚠️41%⬆️ in hospital admission for infectious illnesses incl. sepsis & respiratory infections
⚠️17%⬆️ in outpatient diagnosis of bacterial, fungal & viral infectious illnesses
#LongCovid
#CovidIsNotOver
03.04.2025 07:15 — 👍 43 🔁 20 💬 0 📌 5
I've never had Norovirus before in my life, to my knowledge.
I'm in my second bout of it this year. What's going on?
25.03.2025 09:14 — 👍 1 🔁 0 💬 0 📌 0
Thank you for this, Nisreen and team!
18.03.2025 08:29 — 👍 3 🔁 0 💬 0 📌 0
Thanks @longcovidsupport.bsky.social @longcovidkids.bsky.social for getting my #LongCovidAwarenessDay 5 year pin to me in good time.
It's 5 years this week since the world's least fun roller coaster started for me, #LongCovid, and there doesn't seem to be an end in sight.
16.03.2025 05:41 — 👍 11 🔁 1 💬 0 📌 0
Thanks for mentioning Long Covid today @mrjamesob.bsky.social, it's another subject that shall not be mentioned in Westminster at the moment but the problem is ever-growing.
12.03.2025 14:05 — 👍 1 🔁 1 💬 0 📌 0
Thanks for mentioning Long Covid today @mrjamesob.bsky.social, it's another subject that shall not be mentioned in Westminster at the moment but the problem is ever-growing.
12.03.2025 14:05 — 👍 1 🔁 1 💬 0 📌 0
💔 1/3. We are devastated to learn of Ondine's passing. A shining light has gone out in the #LongCovid Community. An absolute force for good and powerful speaker, she selflessly campaigned for recognition, research & rehabilitation for those affected./
#LongCovidCommunity
12.03.2025 13:10 — 👍 47 🔁 20 💬 1 📌 3
Black background with silver frame. Right half of image contains a large grey coloured heart with silver edging. Beneath the heart is a silver reflection. In the top left corner is the Long Covid Support logo and website address www.longcovid.org. Text in large white letters says COVID 19 DAY OF REFLECTION. Below it says hashtag COVID IS NOT OVER.
Across the bottom in small lettering it says Long Covid Support is a registered charity in England and Wales 1198938.
On Covid-19 #DayofReflection we remember all those we have lost, we think of the millions suffering now with #LongCovid, and we remind the world that Covid Is Not Over.
09.03.2025 09:07 — 👍 149 🔁 67 💬 3 📌 2
Photo of Jo Platt MP stood outside with a house in the background. Jo is wearing a black top and pink jacket. On the right lapel of the jacket is our 5 year commemorative Long Covid Awareness pin. On the left lapel is a Long Covid Awareness ribbon pin, below which is a badge of our Long Covid Support logo.
There's not long to go until #LongCovidAwarenessDay on 15th March. Chair of the APPG on #LongCovid, @joplatt.bsky.social shows her support for us all. Thank you, Jo! 🙏
05.03.2025 19:38 — 👍 23 🔁 3 💬 1 📌 0
📣 Don’t forget to sign up to our strategy launch event taking place on 15th March 2025!
You can attend in person or online. Link below ⬇️
#LongCovid
#LongCovidAwarenessDay
06.03.2025 10:28 — 👍 11 🔁 4 💬 1 📌 0
"It won't be the obvious one" Threw a three 🤦🏻
Wordle 1,356 4/6
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06.03.2025 12:13 — 👍 6 🔁 0 💬 0 📌 0
@bobbyllew.bsky.social Hi Bob, concerned fan here. Just seen this on your Facebook page, is this a paid-for advert? It's timing seems very off, are you guys endorsing M*sk?
26.02.2025 08:52 — 👍 2 🔁 1 💬 0 📌 0
Image with green background and a large white ring in the centre. Text in white in top left corner reads 15 March 2025 Hammersmith Lyric Theatre. Black text in the ring reads Long Covid Support Community Strategy Launch. In the bottom left corner is the Long Covid Support logo in black. In the bottom right corner is text in white that reads Coming Together. Reflecting on Our Progress. Shaping What's Next.
📣 1/3. The #LongCovid community has been crucial in defining the condition & advocating for better outcomes. On #LongCovidAwareness Day, we invite you to join us for our Community Strategy Launch!
🌟15 March 2025, 2pm GMT -
Lyric Theatre, Hammersmith, London W6 0QL, & online🌟
Registration link ⬇️
13.02.2025 10:15 — 👍 25 🔁 22 💬 1 📌 0
FoxiMax - A Word Puzzle
Multiple word guessing puzzle game
🦊#FoxiMax #890 6/8
www.foximax.com
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02.02.2025 18:06 — 👍 2 🔁 0 💬 0 📌 0
Wordle 1,324 3/6
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02.02.2025 18:03 — 👍 2 🔁 0 💬 0 📌 0
Wordle 1,323 3/6
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01.02.2025 11:22 — 👍 9 🔁 0 💬 1 📌 0
Dark background. Long Covid Support logo in top left. Graphics include blue quote marks, red star, newspaper with the word research, hand holding red jigsaw piece. Headed Co-Authored Research. 7 white boxes contain research titles. "Long Covid: a global health issue - a prospective, cohort study set in four continents", "Pathophysiological Mechanisms in Long COVID A Mixed Method Systematic Review", "Impact of Long COVID on productivity and informal caregiving", "Prevalence of orthostatic intolerance in long covid clinic patients and healthy volunteers: A multicenter study", "When you can't find the words: Using body mapping to communicate patients' experiences of Long Covid", "A Core Outcome Measurement Set for Research and Clinical Practice in Post COVID-19 Condition (Long COVID) in Adults: An International Delphi Consensus Study" and "Long COVID and Health Inequalities: What's Next for Research and Policy Advocacy?". Text at the bottom says Find more on our website www.longcovid.org
📣 Some of the work we do is in #LongCovid research. Several of our charity members have been involved in an array of research and have co-authored many significant papers. Take a look at some of them on our website - Link below! ⬇️
#ResearchLongCovid
30.01.2025 09:10 — 👍 21 🔁 12 💬 2 📌 1
FoxiMax - A Word Puzzle
Multiple word guessing puzzle game
An awful eight!
🦊#FoxiMax #884 8/8
www.foximax.com
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27.01.2025 10:46 — 👍 4 🔁 0 💬 1 📌 0
Chair, #MEAction Maryland
@meactmaryland.bsky.social
https://linktr.ee/meactmd
adolescent onset #MECFS, #LongCovid, #POTS, #dysautonomia, #MCAS, CPT2, #migraines, #PostHerpeticNeuralgia, #TrigeminalNeuralgia, recurrent #shingles
Professor of Public Health MBE
Southampton,UK
Citizen of the world.
Proud feminist immigrant 🧿
Posts are my own personal opinions not those of any organisation.
Reposts are not necessarily endorsements.
I just say what I think. Life’s too short not to ☀️
Weeknights 11/10c on Comedy Central and Paramount+
New episodes September 8th!
Research Scientist who prefers facts to lies. Focus on Long COVID. Free book: http://osf.io/pnxcs/.
Freelance writer & translator NL ➡EN. British born, living Dutch. Nep Achterhoeker. Mother of 3 boys. HSP. WatfordFC 🐝. Long Covid. Springsteen fan.
Freelance press photographer until felled by long covid. #FBLC annawatson.com
Parent, Green, fox fan, Londoner.
Retired RN & Qualified Social Worker. #LongCovid since March 2020 Advocate
FBLC
Adult son, 3 grandchildren and 4 cats
A bit preoccupied after serious house fire on 15/10/24, living in temporary accommodation while they rebuild
https://gofund.me/99cc079b
Sewing as a survival practise. There are no treatments. Yet. Long Covid since March 2020, not recovered.
#longcovid
mountaineer, chutney/ cake maker, based in UK Lake District.❤️EU ; trying to be 💚; v lecturer in health policy leadership/MBA dissertation sup RKCollege Zurich.😷 masking until we get st vaccines. #LongCovidAdvocacy https://www.mef.org.uk/about/committee
30 year RAF Veteran, retired after 20 years oil & gas.
Tech/Science/Health/Environment information junkie, scuba Divemaster and travel enthusiast. Atheist/Humanist. Here for pleasant company since X's descent into Dante's deeper circles of hell #FBPE 🗿七七
Britain's best-selling news and current affairs magazine with a unique mix of jokes and investigative journalism.
Website: https://private-eye.co.uk
Subscribe: http://subsonline.co.uk
Dietitian, #LongCovid since Jan 21 #dysautonomia, #patientexperience, lover of languages, all things #textile & costume.
Member research team @long_covid🧮 🩻 Trustee @healthedtrust 🍴🍲🍐🌍
Facilitator PACE program 👣🫂🌈
Patient Advocate in #LongCovid and #HyperemesisGravidarum
Patient Involvement in Research in #NHS
One of the 8 Billion on the planet. Software developer. Scottish not British.
Retired Anaesthetist & covid vaccinator. Still have IT role in NHS and in Day Surgery Internationally. Proud Scot, support independence. Long Covid urgently needs research. Brexit is a disaster. Recently caught cycling bug - carbon frames are amazing.
Officially holding passports for UK, Ireland and Australia but basically an EU loving citizen of the world. #FBPE #FBR