Coughed up another bloody blob today = 2 in 4 days 💔 I actually predicted it yesterday because the chest pain was so bad. Same symptoms, same pattern as last year, think it might be happening again 🫠🫁😭 #LongCovid #POTS #PwME #MCAS #Migraine #TeamClots

FFS just coughed up a bloody mucusy blob. This happened pretty much weekly for most of last year, had to have a bronch and then CT showed GGO's & mucus plugging. Hope thats not all starting again 💔 really cba, feel like I'm falling apart atm! #LongCovid #TeamClots #POTS #MCAS #PwME

I’m just a girl, looking at my HRV and wishing it would go back to green 💚 Since starting ticagrelor it’s been consistently “unbalanced”, likely from the heart rate changes and presyncope. Fatigue and that post-B12 dip/reversing out probably aren’t helping either.

We need better recognition, better research, and collaboration to move this forward. Patients deserve better. #LongCovid #PwME #MECFS #SafeRehab #TeamClots

📣 So please, stop reducing complex, life-changing conditions to: “just deconditioning” It’s inaccurate. And it’s harmful. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

But we do know this: - Long COVID & ME/CFS are different to deconditioning - PEM is real - The biology is measurable #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

Big unanswered question: Is poor blood flow causing mitochondrial dysfunction or the other way around? We don’t know yet. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

Leading to: ⚠️ Poor oxygen & nutrient delivery ⚠️ Poor waste removal = A perfect storm for fatigue and symptom flares. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

There’s also microvascular dysfunction: - Altered capillaries -Reduced lumen space - Endothelial dysfunction - Basement membrane thickening #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

At a cellular level: Abnormal mitochondria have been observed in Long COVID & ME/CFS. Energy production is impaired. Fatigue here is biological, not behavioural! #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

PEM is the key. Symptoms worsen after activity. So pushing exercise without careful, individualised screening & guidance? Can make patients worse 🚫 #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

Physiology shows: - Impaired oxygen utilisation - Circulatory issues So no, patients aren’t just “out of shape.” Their bodies are struggling at a fundamental level. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

Muscle findings: ❌ Not typical atrophy ✅ Mitochondrial dysfunction ✅ Fiber-type changes This is not “just being unfit.” #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

Yes, reduced exercise capacity is seen. But that does not = deconditioning. Same outcome, completely different biology. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

Patients might “look well” in clinic. That snapshot means nothing. What you don’t see is the crash that comes after. Clinicians must screen for and consider the impact of PEM. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

Long COVID & ME/CFS are NOT deconditioning. Let’s be very clear about that. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

Really enjoyed listening to Prof Wust @UofTCOVIDRehab Forum. Thought I'd share some of the key messages 🧵 #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

B12 update - feeling wiped today & have spots on my face which is a side effect 👌 Also woke with a migraine but that's pretty normal for me. So perhaps the grogginess is migraine but it feels worse than normal. Dr Klein did say worse before better so I'm prepared. But siiiigh.

First B12 injection done 💉 Was a bit nervous about drawing it up, but it went fine. It stung a bit as I injected, think I went too fast, so lesson learned! No bleeding (win), but fully expecting a bruise as I'm covered in them atm Small wins, but quite proud of this one 💚 #LongCovid

Ticagrelor update: HR still a bit low & some lightheadedness, but better than last week, so I’ll persevere. Frustrating after getting it somewhat under control, chronic illness life 🙃 In brighter news, I love looking at this tree 🌸 #LongCovid #POTS #PwME #TeamClots

FFS had abdo pain all week put it down to side effect. It seemed to settle yday but worsened overnight. Now have constant raw abdo & back pain, FML ?UTI or ? interstitial cystitis. Or maybe as my ANS has been so affected maybe the nerves are just all inflamed. So done! 🤬 #LongCovid #POTS #TeamClots

Tica update - I'm still lightheaded but it isnt as bad as it has been over the last few days. Dr advised I stop & see if things settle. But as there is a little improvement today I'm going to keep going. If it gets severe again I'll stop/tweak meds. #LongCovid #POTS #TeamClots

After a pretty 💩 week this made my day today 🥹 A LC friend sent a thank you for helping with the covid inquiry, so sweet! It really is the little things that mean so much 🫶 I've met so many lovely people through this hellish experience! #LongCovid #POTS #TeamClots

Another bad day, trying to stay conscious and not pass out even at rest just sitting in bed with feet up, thanks Ticagrelor 👌💔 #LongCovid #POTS #TeamClots

So 5 days in to Ticagrelor and it isnt going well. The side effects include dizziness and fainting. I struggle with this every day anyway but this has made it much worse & my legs are shaking everytime I move & I feel faint pretty much constantly. #LongCovid #POTS #TeamClots

Goodbye clopi, hello Ticagrelor. Hoping for benefits,minimal side effects & nothing scary! 🙏 #LongCovid #POTS #MCAS #Migraine #TeamClots

I'm so excited that I can finally watch The Pitt 🎉

Finally, I've had a little energy to look at my @amaticahealth.bsky.social RNA results. And, how validating! It really fits my clinical picture and confirmed my thoughts. After years of "normal" blood tests, nice to have some data to back it up. #LongCovid #POTS #Migraine #PwME #TeamClots

💔 Siiiigh! Triple update. So about a month ago I had a blood test to check if I respond to clopi, as quite a few people have a gene that means it doesn’t actually work for them. And of course, I’m one of them 🙄 #LongCovid #POTS #MCAS #PwME #Migraine #TeamClots

6 years since the Covid infection that turned my life upside down. Woke up feeling fairly okish (for me) but this afternoon I seem to be having the worst POTS episode I've had in awhile, went from lying to sitting and havent felt right since. Feel woozy, clammy and sick. #LongCovid #POTS #PwME

I don't have the energy to write this out again as a 🧵 Please see pics for my thoughts on the module 3 report. I am proud to have been part of the @LC_Physio inquiry team & have mixed feelings about the report. Mainly disappointed but not surprised #LongCovid #CovidInquiry #Covid19 #LongCovidAHPs

Six years on, too many people are still without the care and support they need. We are calling for urgent action to address these ongoing failures. Read our full response: www.longcovid.org/impact/news/... 2/2

Today’s Covid-19 Inquiry Module 3 report laid bare serious failures in healthcare and in the response to Long Covid. #LongCovid #CovidInquiry 1/2

Here is one of our members, Nicola Ritchie, explaining the impact of living with #LongCovid at the Covid Inquiry Nicola is available to speak with the media after the release of the Module 3 Report on Thursday

Does the CSP @thecsp.bsky.social have any plans to cover the release of the Module 3 report from the Covid Inquiry on Thurs? We would love to have your support @jonryancsp.bsky.social @ashjames10.bsky.social @robyeldham.bsky.social @abihend.bsky.social @tolanahp.bsky.social Press release below

@mrjamesob.bsky.social @lbc.co.uk Are you planning on covering the release of the Module 3 report from the Covid Inquiry? There are at least 2 million people living with LongCovid in the UK. Many of us have lost our jobs and careers in healthcare Please find our press release below👇

Before their Covid infection, our members were free to choose how they used each heartbeat. Now, #LongCovid limits what they can use each beat for. The change from before to after is obvious #LCAD26 #LongCOVIDAwarenessDay #LongCovidHeartbeats #EveryHeartbeatCounts 2/

Before their Covid infection, our members were free to choose how they used each heartbeat. Now, #LongCovid limits what they can use each beat for. The change from before to after is obvious #LCAD26 #LongCOVIDAwarenessDay #LongCovidHeartbeats #EveryHeartbeatCounts 3/

Before their Covid infection, our members were free to choose how they used each heartbeat. Now, #LongCovid limits what they can use each beat for. The change from before to after is obvious #LCAD26 #LongCOVIDAwarenessDay #LongCovidHeartbeats #EveryHeartbeatCounts /4

I've been debating posting this all day, but here goes. It's ironic that #LongCovidAwarenessDay falls on Mother's Day this year. #LongCovid has likely taken away any chance of me having a child. Thinking of anyone grieving that today, I see you 🫶

⚡️The power of medical education! 30% of clinicians thought Long Covid wasn't real. After 90 mins of @putrinolab.bsky.social class 0% thought it wasn't real! 📺️ Full video: On Medical Education 🖇️👇️ #LongCovidAwarenessDay

We are aware #LongCovidAwarenessDay isn't the easiest of days. So instead of asking you to do anything we thought we'd give you a present! 🎁 You can download for FREE our medical binder here 👇 🖇️https://www.longcovidadvoc.com/toolkit

📺️ Fantastic interview with Dr Rupert Higham from the Institute of Education at UCL and Prof David Putrino 'On Medical Education for Long Covid, ME and IACI' It is divided into named chapters for accessibility and there is also a transcript. #LongCovidAwarenessDay youtu.be/S5amDZFaVeE?...

⚡️Long Covid is not disappearing! We still need prevention, action and research. 📺️ Full interview with @putrinolab.bsky.social 'On Medical Education' 🖇️ 👇️ #LongCovidAwarenessDay

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.

#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

Before their Covid infection, our members were free to choose how they used each heartbeat. Now, #LongCovid limits what they can use each beat for. The change from before to after is obvious #LCAD26 #LongCOVIDAwarenessDay #LongCovidHeartbeats #EveryHeartbeatCounts

Every tablet in this photo tells a story about what Long Covid has taken from my life. #LCAD26 #LongCOVIDAwarenessDay #LongCovidHeartbeats #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

At the @longcovidphysio.bsky.social Forum in 2022, a key focus was identifying priorities for Long Covid and rehabilitation. journals.lww.com/cptj/fulltex... #LongCovid #LongCovidResearch #LongCovidRehab #Rehabilitation #OccupationalTherapy