Krystle

[Amanda Bennett @AmandaB55744931]

Today, instead of any treatment or research trials, I was offered a course in ‘acceptance’.

[Gez Medinger @gezmedinger]

Here’s an extract from today - talking about the challenges in developing treatment for the condition as a whole.

[PolyBio @polybioRF]

Breaking: New grant expands Long COVID Lymph Node study

PolyBio Research Foundation and the Wallace Research Foundation announce a new grant to support continued research into the root causes of impaired antibody responses in some individuals with Long COVID.

https://t.co/OkXilNR68U

[Brain Inflammation Collaborative @BrainInflCollab]

Long COVID patients have reduced metabolism in the right frontal and temporal lobes of the brain. Is this brain fog being visualized?

\ The Discovery:
Researchers from the Department of Nuclear Medicine at Université de Lorraine, in Nancy, France, intravenously injected a radioactive tracer in those with Long COVID and healthy controls. The tracer, 18F fluorodeoxyglucose (18F-FDG), is structurally similar to glucose, a sugar molecule metabolized by cells, including neurons.

\ How 18F-FDG Works:
Once 18F-FDG is transported into neurons, it becomes trapped. Here, the fluorine-18 isotopes decay, emitting light detected by the PET (positron emission tomography) scanner. More light = more glucose uptake.

A healthy brain would light up uniformly. But the brains of Long COVID patients light up in patches.

\ Significance:
This is important because sugar is like the gasoline that keeps the brain's engine running. Brain regions that metabolize less sugar suggest cellular (and cerebral) dysfunction.

\ What 🧠 Regions Were Affected?
Reduced glucose metabolism was found in the right frontal and temporal lobes, including the orbitofrontal cortex and hippocampus. This could contribute to brain fog by disrupting:
- memory
- attention
- decision-making

We at the Brain Inflammation Collaborative are a joint effort of patients, clinicians, and researchers working together to advance the understanding, diagnosis, and treatment of neuroinflammatory diseases, including Long COVID.

This older study is a great reminder that Long COVID is a widespread, debilitating medical condition that demands action!

Please give it a like and subscribe for more.

https://t.co/YiTjvqN6YH

[Prof Doug Kell CBE #FBPE #FBPA🔶🇪🇺 @dbkell]

Chronic fatigue is not in your head, it's in your blood - experts #TeamClots https://t.co/6DT0irXA9w

[elle carnitine 🍉 @elle_carnitine]

Long COVID is a public health emergency. We are sick. After half a decade of neglect, we demand funding for research and treatments, now.

#5YearsLongCovid #HalfADecadeOfNeglect #LongCovidAwarenessDay2025

[Prof Julia Lawton @Prof_J_Lawton]

5 years since I last went into the office. Three of my closest friends are now dead; two after a very protracted & cruel battle with Long Covid. This is a very sad day. But I’m so grateful to have found this community. Let’s stay strong together. 🙏❤️

[Anne Marie 💜 @annesmithmcc]

My boss just posted this on LinkedIn. Made me cry a bit 🥲It gives me hope when I see ppl in my real life speaking up.
Without her support over the last few years, I very much doubt I would still have my job.
Some ppl are really outstanding #LongCovidAwarenessDay

[Dame Sa 🐝 3.5% @LongCovidHell]

I have organ damage from Covid.
People be like:

It’s vaccines! ❌

I had Covid in March 2020.
Pre-vaccines.

You were old or unhealthy! ❌

I was 39, fit & healthy, with no health conditions.

It’s rare! ❌

Over 100 million worldwide.
So far.

#LongCovid #LongCovidAwarenessDay

[Long Covid SOS @longcovidsos.bsky.social @LongCovidSOS]

🚨 Mythbusting #LongCovid with Dr Amir Khan🚨

Long Covid is real. It’s serious. And it’s affecting millions.

On #LongCovidAwarenessDay, @DrAmirKhanGP joins us to bust harmful myths.

Watch, learn, and share—because the more we talk about Long Covid, the harder it is to ignore.

[Rebecca Logan♿🌻💙😷#FBLC @rebslogan]

1/ Today is #longcovidawarenessday, five years, half a decade since the start of the pandemic. For millions like me, the life we knew ended & a new existence took over.
Today, I'm weighed down by extreme sadness. Since the last awareness day, my condition has deteriorated. 🧵

[Amy @alexandrite113]

I've been 90-99% bedbound for nearly 3.5 years. People say "it's the vax" - I never got the vax. People say "it's laziness" - I used to be an athlete.
No more excuses.
We need help NOW.
#5YearsLongCovid #HalfADecadeOfNeglect #LongCovidAwarenessDay2025

[Joan McParland MBE-Never,ever felt ‘tired’ with ME @JoanMcparland]

Were many #LongCovid service users in N. Ireland aware of this satisfaction survey on LC service provision please?
Opened 18Nov - Closes 2Dec
14 days 👇
https://t.co/t6wfwF8lIa

[Rebecca Logan♿🌻💙😷#FBLC @rebslogan]

Just completed this survey....if you are in N.I & have experience of #longcovid clinics please complete asap! @scuzzimulder30 @johnecairns @IssyDublin @baldypidge @maggytamney @Krystle__E

[ThePOTSPostman @ThePOTSPostman]

One of the worst things you can say to anyone suffering from chronic illness is that “you don’t look sick” or “you aren’t trying hard enough to get better”

Those statements are so invalidating.

To those people I say that you literally have no idea what we go through.

I don’t care how you think an illness should look.

You don’t see the countless doctor visits, the endless blood and imaging tests.

You don’t see pain, the tears, the days when we can barely get out of bed.

This isn’t a walk through the park for any of us but it requires tremendous strength, and we fight every damn day.

[Vikki Sewell @vikki_sewell]

@ThePOTSPostman Just because you are feeling "ok" in that moment, doesn't mean you should go get everything done quickly while you can. It's still there and will drop on you like a ton of bricks to stop that stupid attempt at normal.
Pacing is our friend

[Helen Kulas @HelenKKulas]

@ThePOTSPostman People don’t understand that good days are still sick days. And too many people look for the one big fix that isn’t there instead of just helping you manage it well

[Dr Alison Booth @boothac59]

@ThePOTSPostman That it's a massive watershed in your life (if you were lucky enough to have been healthy before), that people who have never known serious illness simply don't understand what a step change it is. You can look quite well even on very lousy days, so you see people doubting you.

[ThePOTSPostman @ThePOTSPostman]

Just because someone with chronic illness may “look fine” when you see them, doesn’t mean they are.

Many of us are able to mask our symptoms and pain when it’s at a manageable level.

A lot of us have actually gotten good at hiding it.

What you see however is not the case of what is going on inside our bodies.

We are always fighting some sort of symptom on a daily basis.

You only see what we allow to be shown, that’s why on our bad days, you probably won’t see us at all.