✨ Fireside Chat Ep 24 ✨ 📅 Wed 17 Sept | 18:00 BST | YouTube Live 'Muscle & Movement: Rethinking Long Covid & ME/CFS' Dr Rob Wust and @binitakane.bsky.social on why PEM is nothing like deconditioning and what research reveals about muscle changes in these conditons. www.youtube.com/watch?v=8i4i...

As Chair of Long Covid Support, this part of the UK Covid Inquiry feels particularly close to home. Module 9 of the Inquiry is a crucial moment to ensure that these voices are not lost. The human and economic cost of Long Covid is real, ongoing, and too often overlooked.

1/4 This morning, the UK Covid-19 Inquiry opened Module 9: Economic Response, looking at how government decisions in the early years of the pandemic affected people’s lives. Dr Lucy Moore and Nigel Rothband, Chairs of @longcovidsos.bsky.social and Long Covid Support, were present. 🧵👇

✨ 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. 🧵👇

📣 Are you conducting research into #Covid19 or #LongCovid? Our Research Involvement Consultancy is here to help! ✅ Recruitment ✅ Study design ✅ Patient & Public Involvement & Engagement Find more information on our website - link below ⬇️

1/3. APPG on #LongCovid - July meeting minutes available. ▶️ Guest speaker Prof. Chris Brightling joined discussions on accelerating Long Covid research on drug targets/therapeutics. ▶️ Actions identified re. Covid vaccine eligibility, public health messaging & safe air. Link below in comments ⬇️

Congratulations @drjanetscott.bsky.social on your new role, and thank you for all your hard work, continuing to push for appropriate #LongCovid care in Scotland!

Delighted to have attended my first meeting of the #APPG on Long Covid last week in my new role as Chair of Trustees at @longcovidsupport.bsky.social It was a pleasure to meet @joplatt.bsky.social and take part in a discussion on how we can accelerate research into Long Covid. #LongCovid #APPG

“NHS England told the BBC it stopped checking whether clinics are still open since passing that responsibility to ICBs.” Our Trustee @margaretohara.bsky.social: “If they’re not being sanctioned they’ll just do what they like. And what they want to do is use the money for other services” #LongCovid

📣 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 ⬇️

💖 1/3. We’ll be so excited to see Rob and Joey take off on their 114-mile tandem cycle to 13 Shropshire cricket clubs! They are supporting friend and fellow cricketer Charlie who has #LongCovid, and we're thrilled they've chosen our cause🙏 Find out more below!⬇️ #Fundraising

1/2. The next APPG on #LongCovid meeting is taking place on 15th July 2025 at 4:15pm. Contact your MP now and ask them to attend! More info. on the APPG can be found on their webpage - link below ⬇️

The government is pushing ahead with the harmful Universal Credit changes that will drive disabled people deeper into poverty. We stand with disability organisations in calling for this Bill to be scrapped and for any reforms to be co-produced with disabled people. #StopTheBill

Due to the efforts of disabled individuals, advocacy groups, charities throughout the UK, and supportive MPs, the government was compelled on Tuesday to accept significant amendments to the unsafe and problematic Welfare Bill. 🧵1/4

MPs are voting this evening on disability benefits. Details remain unclear, but the aim is obvious: billions in cuts to a system already failing those who need it most, including people with Long Covid. We urge all MPs to stand up for disabled people and reject this cruel bill.

We are deeply concerned by the government’s decision to delay the ME/CFS Delivery Plan. With data suggesting 1 in 2 people with Long Covid meet ME criteria, this has serious implications for those we support. The government must act now: publish the plan and fully fund its delivery.

1/2 In @drtedros.who.int WHO's latest media briefing: "We cannot talk about COVID-19 in the past tense...It continues to evolve, it continues to kill, and millions of people continue to live with post COVID-19 condition, or long-COVID." www.youtube.com/watch?v=hbr2...

We stand with Disability Rights UK in urging MPs to reject this bill. The govt's proposed changes would mean people with the same needs get different support based solely on when they applied. This creates an unfair two-tier system that harms future generations.

Thank you to everyone who joined this morning’s webinar launching our bodymapping toolkit. It was lovely to have such thoughtful engagement. Beth, Maaret & @oonaghcousins.bsky.social are really grateful to share their work. Recording out soon. Toolkit link below 👇

Just a reminder that our online launch of a new body mapping toolkit for people with Long Covid is happening today at 11am (UK time) - we’d love to see you there. Link in next tweet 👇🏼

📣MPs are deciding whether to cut disability benefits - now is the time to tell yours to oppose the bill! Need help writing to your MP? Join our free online letter writing sessions – we’ll guide you every step. 🗓Thurs 6–7pm (UK) 🗓Fri 1–2pm (UK) Register now - links below⬇️ #TakingThePIP #LongCovid

🚨1/5. Cutting PIP will:   ⚠️ Push people further away from work   ⚠️ Increase poverty   ⚠️ Drive decline in health & independence   See what people said below ⬇️   📧 Contact your MP today & ask them to oppose the proposed welfare changes!!   #LongCovid #TakingThePIP

1/2. Thanks to all the MPs who have signed the Reasoned Amendment opposing the Universal Credit & PIP Bill, including Chair of the APPG on #LongCovid @joplatt.bsky.social & several Members of the APPG. #TakingThePIP

💖Huge thanks to our incredible fundraisers - your time, energy & passion mean the world to us! 🎉  Want to join this amazing bunch or support a fundraising campaign? 👉🏼 Take a look at the ‘Get Involved’ tab on our website - link below, or 📩 Email us: [email protected] to get started! #LongCovid

Our friend Ondine was a powerful advocate for all with #LongCovid. Working with her in various arenas was a privilege, including with the NHS Long Covid Taskforce, Covid Inquiry, with Parliamentarians & policy makers. She spoke truth to power & championed the hidden. We miss you.

📣 1/2. Minutes available from joint meeting of APPG on #LongCovid & APPG on #ME! 🔴 Stephen Timms MP (DWP) spoke on proposed welfare reforms, with APPGs raising concerns 🔴 Research talks from Prof. Danny Altmann, Dr. Binita Kane, Prof. Chris Ponting & Prof. David Strain Link ⬇️

If you've tried getting PIP for #LongCovid - at least for many like >50% who fail - there's nothing to cut. PIP is a de-humanising lottery at best, and a 50-page form.

1/4. ❌ PIP cuts will be devastating for people with #LongCovid and #ME. Our new briefing shows these reforms will push people further from work, deepen poverty & worsen health. We’re calling on MPs to oppose the cuts - help us flood their inboxes! Link to briefing & how to act below ⬇️

🎨 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. ⬇️

⛰️ On 21 June, Jen, Rowan & Ollie are taking on the epic challenge of the Welsh 3000s - climbing all 15 peaks over 3000ft in 24hrs with no transport, to show support for their Aunty Jo who lives with #LongCovid!! Find out more on their fundraiser below! ⬇️ #LongCovidSupport

📣 For those in the UK: ‘Keeping #LongCovid On The Agenda’ Online meeting, 23 July 2025, 2-3.30pm, hosted by Keele University. More information on the poster ⬇️ To book a place, contact: [email protected]

📣 Current PIP criteria already fail people with energy-limiting conditions. Proposed changes will deepen this injustice, with devastating consequences. @joplatt.bsky.social backs our call for a system that supports people with #LongCovid, in @bigissue.com.

1/2. It’s #CarersWeek & we say a huge ‘Thank You’ to all care givers! With so many with #LongCovid, many people, from young people to the elderly, have become unpaid carers. And it can be tough. Our Long Covid Carers group provides a safe space to support those who care. Link below ⬇️

🗞️ Former Formula 1 world champion Keke Rosberg on having #LongCovid: "I used to have a list of things that still need to be done. I still have one now, but it's a list of things that can't be done anymore." #KekeRosberg www.express.co.uk/sport/f1-aut...

1/4. 🚴 On 10th June, James Ainsworth sets off to cycle Land's End to John O'Groats to raise funds for our charity! Inspired by his partner Sarah's #LongCovid journey, James is riding to help others get support. Thank you James! 🙏 Find out more below! ⬇️ #FundraisingFriday

👀 We’re keeping track of the amazing George Brill, who is fundraising for our charity by walking Lands End to John o’Groats! Day 72: 108 km in 30 hours Two sunrises & the English 3000s Read more about George’s #LongCovid challenge on the link below! ⬇️ Go George!! 💖 #ForThoseWhoCant

This #VolunteersWeek we say a huge ‘Thank you!’ to all our fantastic volunteers who have made our charity what it is. Nearly all have #LongCovid themselves or are care givers to someone with Long Covid. Thank you for giving your precious energy to helping so many others. 💖💖💖

New preprint from #TeamClots: “The increase in smaller microclots post-exercise suggests microclots do not behave as static entities but can undergo structural changes in response to physical exertion. This has critical implications for…exercise-based rehabilitation strategies in #LongCovid”

1/2. We asked one of the new APPG on #LongCovid Members why they joined: “I have met constituents whose lives have been radically changed by long-term impacts of Covid-19. It is vitally important they are not forgotten…” - James Naish MP Is your MP a Member? Link below⬇️ #APPGLongCovid

A call from an international collaboration, for researchers to include children in clinical trials of #LongCovid. It's unacceptable that children with Long Covid continue to be ignored. They need effective treatments as much as adults. #LongCovidKids publications.ersnet.org/content/erj/...

Thank you @stephenctimms for meeting with #APPGME and #APPGLongCOVID and agreeing to my request to speak to @DHSCgovuk to fund research that would enable #pwME to get better, go to work, and come off benefits. Wins all round! #FundThePlan

1/3. 🔥Fireside Chat from The #LongCovid Clinic🔥 ‘Debunking the Myths of the Mind-Body Connection’ 🗓️ Wednesday 21 May 2025, 6pm UK time @binitakane.bsky.social & @helenoakleigh.bsky.social are joined by Psychotherapist & Clinical Mind Body Therapist Nadyne McKie. Link & further info. below ⬇️

Delighted to take on the role of Chair at Long Covid Support, supporting the vital work being done for those living with Long Covid. I’m looking forward to working alongside such a dedicated team to help make a real difference.

We are pleased to announce appointment of Nigel Rothband as Chair of Trustees of Long Covid Support. Nigel brings with him a wealth of expertise along with personal experience of the devastating impact of #LongCovid. Welcome @nigelrothband.bsky.social! Read more on our website - link below ⬇️

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

1/3. On 14 May 2025, there will be a joint meeting for Parliamentarians between the APPG on #LongCovid and the APPG on ME. A main focus will be on research, with several guest speakers. Ask your MP to attend! More details below ⬇️ #WorldMEDay

💖 This September, Lisa is running the #WindsorHalfMarathon to raise awareness and funds for our charity. Her partner lives with #LongCovid and Lisa is running to bring hope and support to others affected. Cheering you on, Lisa!!👏 See the link below for Lisa’s fundraiser! ⬇️

We often hear people, and read pieces on #LongCovid, using the term “brain fog” to describe a range of debilitating symptoms experienced by many with the condition. From Neuroscientist @daniellebeckman.bsky.social: “"Brain Fog" actually means brain damage for most people” #CovidIsNotOver

💖 Another fantastic achievement by our very own #Welshpool, this time at the #Cardiff5K! Thank you to our Trustee Yanto Evans for his amazing efforts and continuing to raise #LongCovid awareness in the community! 🙏 @vancityreynolds.bsky.social @wrexhamafc.co.uk www.youtube.com/watch?v=EGSp...

💖1/2. Congratulations to Rebecca Marshall who completed the #ManchesterMarathon last Sunday!! Achieving an amazing time of 05:29:28, Rebecca has managed to raise over £500 to help us continue and build on our much needed work. #LongCovid