I’ve started a campaign calling on the UK Prime Minister @andyburnham and his  Government ~ to listen to people living with #Longcovid and take meaningful action This campaign is UK-focused, but Long COVID is affecting people globally c.org/qCSSyY5WMv Cont 👇

This episode of @LCPerspectives describes UK NHS long covid clinics and their approach to symptom management.

ANKTIVA Long COVID Trial — Day 10 Update First off, I want to thank everyone who has reached out over the past couple of weeks. I’ve received so many kind messages and words of encouragement, and I genuinely appreciate all the support. It’s now been 10 days since receiving my first ANKTIVA injection, so I wanted to share an update on how everything has gone so far. I received my injection at 9 AM on Wednesday, and the process itself was completely smooth and painless. Within a few hours, however, I started experiencing that familiar sensation of coming down with the flu. Interestingly, I hadn’t experienced that feeling in nearly three years. Sure enough, Thursday morning I woke up with flu-like symptoms, including body aches, headaches, night sweats, and fatigue. Friday was much of the same, and I spent most of the day in bed. By Saturday, I was feeling noticeably better and even managed to explore San Francisco for half the day before crashing pretty hard. My clinical team had warned me that symptoms could come in waves, with periods of feeling relatively good followed by significant flare-ups. Saturday night, I experienced one of the worst headaches of my life, severe enough to make me nauseous. Sunday and Monday followed a similar pattern, with some improvement throughout the day but continued headaches and fatigue. On Monday, I had my first follow-up appointment and blood draw. My previous two blood tests had shown no abnormalities, but this time, five different results were flagged. Initially, this concerned me, but after speaking with my clinical team, they explained that these changes were expected following ANKTIVA and consistent with the immune response they were hoping to see. Considering how little research exists on ANKTIVA for Long COVID, this was exciting to hear. Of course, an expected immune response doesn’t necessarily mean my Long COVID is improving, but it was still encouraging. Unfortunately, Monday evening through Wednesday ended up being the worst stretch of the entire experience. Constant headaches, nausea, sweating, and an overwhelming feeling of being unwell. I spent nearly three straight days in bed. Those days were miserable, and there were moments when I genuinely questioned whether going through all of this was worth it. Thankfully, Thursday morning I woke up feeling significantly better. Nearly all the injection-related symptoms had disappeared, and by Friday, I felt almost completely back to my normal baseline. Now, on Day 10, I would say all of my post-injection symptoms have resolved. As for my actual Long COVID symptoms, it’s still far too early to tell. I’ve spent most of the past 10 days dealing with the effects of the injection itself, and I want to give the treatment more time before drawing any conclusions. I’ll absolutely share any meaningful changes, good or bad. One other interesting thing was my injection-site reaction. For the first 24 hours, there was almost nothing. By Day 2, it looked like a mosquito bite. By Day 3, a small sunburn. From there, it continued growing every single day. 🤣 By Day 8, the area was huge, red, and noticeably hard to the touch. My team had mentioned that these reactions can disappear rather suddenly, and sure enough, today it’s almost completely gone. My second injection is scheduled for Wednesday. I’m extremely excited to continue, although admittedly a little nervous after experiencing how difficult some of those days were. Lastly, this experience has given me an even greater appreciation for anyone undergoing difficult medical treatments. My heart genuinely goes out to those who have to endure these kinds of symptoms for weeks or months at a time. I’m beyond grateful for this opportunity and for everyone involved in making this research possible. Thank you again for all the support. Hopefully, the coming weeks will bring some positive changes in my Long COVID symptoms. ❤️

This is how it started for me too: left-sided numbness. Woke up and my whole upper left side was numb. I called 111 and they told me to go to A&E to get check for a stroke. The tachycardia had also already started by then.

If you're a healthcare worker on a transplant or cancer ward, and you don't wear a mask, you're a piece of shit. I've held my tongue for long enough. You're honestly fucking vermin at this point.

Covid constitutes the largest mass disabling event in the United States since the Americans with Disabilities Act became law in 1990. Now, the Trump administration’s anti-worker and anti-disability turn has created a climate of fear and difficulty around Long Covid accommodations. motherjones.com/politics/202…

🎙️Episode 6 - @LCPerspectives If the evidence exists, why are we still ignoring it? Margo, a former research manager living with severe #LongCovid discusses public health failures, airborne transmission, masking, medical dismissal & the fight for protection. #CovidIsAirborne

This is #LongCovid 🥲💔💔💔 A feeding tube at 13. At 14 years old, unable to function. Both girls were prev fit & healthy prior to their COVID infection.

Long Covid kids | Logan’s Story 💔🥲 piped.video/shorts/1JYk6E3OB…

Voices of those suffering #longcovid 💔🥲

Patient voices 👇 #longcovid 🥲

7 patients died of #COVID because care home staff did not mask, or test for covid. The care home manager didn’t care to protect staff or patients and basically encouraged them to work whilst infectious with covid. devonlive.com/news/devon-new…

7 patients all died in 2021 after contracting coronavirus at the care home During the inquest, it was alleged some staff did not wear face masks or PPE, that others carried on working after testing positive for the virus, and that Miss Burchell care manager ignored test results

If we want any kind of justice and accountability WE THE PEOPLE MUST TAKE ACTION. Step 1: strip @MattHancock of his privy council duties SIGN ✍️ & SHARE THIS PETITION 👇 #CovidInquiry #COVID19 #longcovid c.org/F5bBzRzMrH

“I lost my dad and sister to COVID - I doubt care inquiry will bring change" The #CovidInquiry says government failures allowed the virus to spread. Over 43,000 care home deaths involved #COVID from March 2020 to July 2022. One woman lost her father and sister 5 days apart💔

BREAKING: Covid inquiry chair, Baroness Heather Hallett, says that action to protect care homes came too late causing it to "spread like wildfire". Live updates: trib.al/rq3oWgR 📺 Sky 501