Paula Mordue-Davies

[Paula Mordue-Davies @SparkleCat45]

@gezmedinger Thank you

[Dame Sa 🐝 3.5% @LongCovidHell]

Millions of people may be walking around with cardiac long COVID, their hearts silently struggling months or years after infection. While most recovered patients believe they’re ok, new guidelines reveal that COVID-19 has triggered a cardiovascular crisis. https://t.co/QvjNojaf0v

[Scott Daniska @scott_scientist]

Back when I was doing ME/CFS research, I had a novel finding that I never publicly presented to the community. I think today is the day I do that. I always wanted to put together a whole presentation on it, but I know I’m never going to find the energy to do so.

I only took a small, limited number of samples, but from what I observed, people with ME/CFS have an abnormal separation of collagen fibers. There is always variation to this from person to person, but the variation is more pronounced in ME/CFS.

I checked for variation in collagen diameter, presence of calcium deposits or collagen flowers, signs of degradation, etc. Every metric was normal. The only abnormality I found was that the collagen bundles which should be held tightly together, were much more separated and distorted in direction.

This is the first time I’m sharing this, and I hope it helps improve our stagnant and abysmal pace of research.

[Covid Solidarity @CovidSolidarit1]

Living with Long Covid

[Conor Browne @brownecfm]

This article has now been amended by the BBC listing Long Covid as a cause.

[Hannah Davis @ahandvanish]

5 different models show the incidence of #LongCovid has not decreased over time, and remains high.

(Purple & yellow lines are adult incidence in cohorts of 3.8 & 1.9 million people, using either NASEM or non-NASEM definitions. Green line is children).

https://t.co/Wd7pchVlGt

[David It Up! @Dave_it_up]

Some Reading:
How Emotions Are Made, Lisa Feldman Barrett; https://t.co/4guQiTZGQR
Tooth and Claw Podcast, MeatEater; https://t.co/sXg0aSSJMu
The Loneliness of Illness, Psychology Today; https://t.co/sg0TatgTVs
The Burden of Invisible Illness, Harvard Health Publishing; https://t.co/08Jap6ninL
In Sickness and in Health: The Psychology of Caregiving, National Institute on Aging; https://t.co/3o4ILEPM7a

[David It Up! @Dave_it_up]

How to Love Someone With Long Covid (Even When It’s Hard)

Let’s talk about something brutal.

When you get sick and stay sick, people disappear. That’s not a flaw in your personality or your worth. That’s human behavior. Animal behavior, actually.

Let me rewind.

Decades ago, I dated someone I loved deeply. She had this deep belief, that if the passion fizzled, it was over. That was the whole rulebook for her: no fireworks, no future. And maybe when you’re young, that feels like truth. But I had already seen what love actually looks like, the kind where your parents argue. and then hold hands shortly after. The kind where frustration turns into listening, and listening, turns back into love, like some weird emotional tide.

So when she asked me, “Is it over?” I was confused. Like… why would she even think that?

Later, I learned something that changed me.

You don’t have to feel love to show it.
Almost always, the showing comes first.

When you do the loving thing as a caregiver, lover, friend, and cook their favorite meal, run the errand, sit through their bad day, something inside shifts. Love grows out of the act in you. It’s a feedback loop. Not a feeling. A practice. Both of my deepest relationships got stronger the moment I stopped chasing emotional proof and just acted out of little acts of me doing loving things. And you know what? The feeling always followed. I loved them more. I was loved back more.

This is where we bring in Long Covid.

Millions of people have been living through something that most of the world pretends isn’t real. Something that doesn’t show up on the surface, but eats through their body, their energy, their memory, their sense of self. And if they are lucky enough to have a partner, or a parent, or a friend who’s still around, chances are, you are also struggling.

Because illness drives people away.
It always has.

It’s not new. Throughout history, when people got sick, they got abandoned. Leprosy. Tuberculosis. Polio. People didn’t just suffer the disease, they suffered being cast out.

We’re no different. Just more polite about it.

And if you’re the one still here, caring for someone who’s chronically ill, let me say this: Your instincts will betray you. There’s a weird effect that illness has on caregivers. It makes you want to retreat. You’ll find yourself pulling away. Not because you’re cruel. But because your brain is screaming for safety. Normalcy. Simplicity. And right now, the sick person you love is the opposite of that.

This is where I remind you: You are an animal.

I listen to this podcast called Tooth and Claw. It’s full of bear attacks and wild animal stories. One of the hosts says something that stuck with me:
“If you see a behavior in animals across a wide population, it’s probably an animal behavior.”

Well guess what? Caregivers disappearing when someone gets sick, and that’s an animal behavior. Human animal behavior. Our biology is hardwired for survival, and that means distancing from perceived danger. Sickness triggers something ancient in us. Something deep. Something hard to override.

But here’s the thing.

You can override it.

It starts with remembering who they are, not who they are now, in bed, groaning, or angry, or falling apart, but who they were. Who you fell in love with. Who made you laugh until you cried. That version of them still exists, even if it’s buried under symptoms and fatigue and grief.

Remember this too: In sickness and in health wasn’t poetic fluff. That vow wasn’t written for fairy tale weddings. It was a survival pact. It came from generations of people who watched their children die of infections. Who lost partners to fevers. Who suffered and stayed. That phrase was carved out of real history, when illness wasn’t rare (Just look up how many children died pre-1930s) it was expected. And now here we are again.

Modern medicine gave us the illusion that we were safe. That sickness was temporary. That suffering was manageable. But Long Covid shattered that illusion. And most people born after 1960 have no emotional blueprint for this.

We’re flying blind.

If you’re the one who’s sick, here’s something you need to hear: You’re not being ignored because you’re annoying or boring or selfish. You’re being ignored because your suffering triggers something ancient and uncomfortable in people. They don’t know how to sit with it. Most weren’t taught how. Their avoidance isn’t always a conscious choice. It’s an emotional reflex.

In the book How Emotions Are Made, Lisa Feldman Barrett explains that emotions come first, and logic comes after. We don’t decide how to feel — we feel, and then decide based on that. So when your loved one shrinks from your pain, or snaps at you, or stops checking in, ask yourself: Are they choosing that? Or is it an emotional response they don’t even recognize?

Think about the last time you stubbed your toe on something, and shouted at an inanimate object. “Damn it!” That wasn’t a planned reaction. That was your animal brain in action.

That’s what we’re dealing with. Not cold indifference. Biology.

So what can you do?

If you’re a caregiver, do one loving thing today. Not because you feel warm and fuzzy. But because it’s the right thing. Make tea. Rub their back. Sit in the room quietly. Do it even if they don’t thank you. Do it even if they’re upset. Because the feedback loop still works. It works on you. You’ll feel more love just from acting in love.

If you’re a patient, and your family member is cold or distant, try this: If you have the energy, think a loving thought toward them. Even if they’re not giving it back. Just thinking it can soften something inside you. Maybe it leaks out. Maybe it doesn’t. But you’ll feel it. And maybe — just maybe — that loop starts to close.

None of us chose this.
But we can choose how we respond.

We’re not just animals.
We’re animals with memory.
With words.
With stories.

Let this be one of them.

[Long Covid Advocacy 💙 @LongCovidAdvoc]

Unfortunately it usually takes personal or family experience for doctors to fully comprehend commonly minimised illnesses such as #LongCovid #POTS #ME etc

Even if they think they are empathetic and listen the prejudice lingers. Medicine has a long way to come.

[PolyBio @polybioRF]

Dr. Nadia Roan is leading a new study to assess biopsies of the female reproductive tract from Long Covid patients vs. controls: “both the female reproductive tract & gut are very tolerogenic sites—potential sites of SARS-CoV-2 persistence as well—we want to really characterize both the persistent reservoir, as well as in the context of immune recognition of these [infected] cells.”

[Neil Duncan-Jordan MP @NeilForPoole]

Statement on my suspension from the Parliamentary Labour Party.

[Saracens Rugby Club @Saracens]

Not long now... 👀

Make sure you're the FIRST to know 👇

#YourSaracens💫

[Oonagh Cousins @oonagh_cousins]

Thrilled to share I’ve joined @visible_health as Communications and Policy Lead. I’ve long respected their work, and I’m excited to work with them to push forward tools, research, and systemic change. A different angle on the challenge - with the same commitment to change.

[Long COVID Foundation @LongCFoundation]

We’ve updated our list of “When Athletes, Entertainers, & Other Notable People Get Long Haul COVID+”.

It’s now at 241. There are many more that don’t publicly speak about it, or realize they have it.

We will keep updating.

#LongCOVID #pwLC #LC #COVID

https://t.co/TvofsWWg6Z

[Robert 😷 Long COVID 6 🇨🇦🇺🇸🏳️‍🌈 @Rob_DeRosa]

42. 5.5 years of Long COVID. No treatment. No cure. Still standing. Still fighting. We need a cure. #LongCOVID #CureLongCOVID #CureLongCOVIDNow

[Dame Sa 🐝 3.5% @LongCovidHell]

FYI on disability

1. ANYONE can become disabled at ANY time

2. People don’t CHOOSE to be disabled

3. Some symptoms can fluctuate, eg one day they need a wheelchair, the next day they might not

4. Government’s own data says PIP fraud is 0%

5. PIP is NOT an out of work benefit

[Thomas H. 💙 @THemingford]

Cutting PIP to “incentivise work” is like slashing someone’s tyres and asking why they’re late.
It’s nonsense.
#TakingThePIP

[Sam Long Covid Since March 2020 @CounsellingSam]

Shouldn't Labour make sure there are jobs that DISABLED PEOPLE can do BEFORE taking away people's #DisabilityBenefits?

[Thomas H. 💙 @THemingford]

You think cutting PIP only affects the claimant?
Think again.
It hits the whole household: carers pushed to exhaustion, kids going without, relationships buckling under pressure.
#TakingThePIP