Long Covid Collective

12/26/2025

A quick reminder for anyone who’s new to chronic illness spaces:
when someone with Long Covid says they’re having a “good day,” it usually doesn’t mean they feel good.

For many of us, a good day still includes pain, fatigue, or symptoms that never clock out. What makes it “good” is simply that it’s better than the bad ones.

Most of us haven’t seen our old baseline in a long time, so we use a different scale now. A three or four out of ten can be a win, and those threes and fours matter.

Everyone’s good day looks different, and a lot of what we manage stays invisible.
Understanding that difference goes a long way.

More at www.longcovidcollective.org

12/25/2025

Wishing everyone a peaceful day. ❤️

12/24/2025

Hope tonight brings a little calm, in whatever way you need it.

12/24/2025

Before the holidays get loud, busy, and full of good food & good intentions, here is something worth holding close.

If someone you love lives with a chronic illness, being believed and understood matters more than fixing, solving, or suggesting the next thing to try. It shows up in small moments. Listening without correcting. Letting plans change. Trusting their limits even when you cannot see them.

Presence counts. Patience counts. Allowing someone to feel seen counts.

Sometimes that is the gift that carries the most weight for a person who should not have to spend more time wondering if they are believed than wondering what the future holds.

12/23/2025

I found this helpful, but I do not know this doctor personally, and Long Covid Collective is not endorsing him.

12/23/2025

Letters to Santa aren’t the same when you have a chronic illness. Lists include energy, good sleep, histamine tolerance, and patience for people who think you’re just depressed.

Here’s hoping everyone gets what’s on their list!

12/22/2025

One of the quieter parts of chronic illness is what happens when there’s no new update to share.

Early on, people check in. They ask how you’re doing. They hope for movement, something to respond to, something to hold onto.

Then things stay the same.

Not worse. Not better. Just the ongoing work of living within limits that don’t change much day to day. That kind of steadiness can be hard for others to know how to sit with.

The messages slow. Not out of lack of care, but uncertainty. When there’s no progress to comment on, people don’t always know what to say.

What’s left is presence. And presence, without a plan or a fix, can feel uncomfortable.

We hear this often in our community. Not dramatic abandonment. Just a gradual quiet when the answer to “how are you” doesn’t change.

So here’s a quiet cheers to the ones who stay.

12/21/2025

For me, it’s watching all the cheesy holiday movies. What’s your favorite holiday tradition?

12/20/2025

If your version of December looks different this year, you’re still part of this community. Always.

12/20/2025

New research published today, December 19, 2025, is adding weight to something our community has known for a long time.

A large genetic analysis found meaningful overlap between genes associated with ME/CFS and genes previously linked to long COVID. The overlap was much higher than expected by chance.

What the study found:
• Thousands of small genetic variations linked to ME/CFS risk
• Strong signals in immune, nervous system, and stress-response pathways
• Dozens of genes overlapping with long COVID findings from other studies

What this suggests:
• Long COVID and ME/CFS likely share underlying biological mechanisms
• Post-viral illness is not random or psychological
• Genetics may help explain why some people develop long-term illness after infection and others do not

Important context:
• This study is a preprint and has not yet been peer reviewed
• Genetic association does not mean cause
• Findings need replication and follow-up studies

Why this still matters:
Preprint or not, this work aligns with a growing body of research pointing to immune and neurological dysfunction in post-viral illness. It strengthens the scientific foundation already being built and pushes the conversation further away from dismissal and toward mechanism, measurement, and care.

A major new genetic study suggests that myalgic encephalomyelitis, also known as ME or chronic fatigue syndrome, is driven by thousands of small genetic factors working together rather than a single cause. The findings also show a significant overlap with long COVID, strengthening the case that both...

12/19/2025

As the year winds down, expectations tend to pile up.

Wrap things up.
Finish strong.
Do one more thing.

Energy doesn’t always follow the calendar.

For many people living with chronic illness, the end of the year highlights a familiar mismatch between what’s asked and what’s possible.

You’re not failing. The math just doesn’t work.

12/18/2025

One of the harder parts of illness is realizing you cannot control the story people tell about you.

You know what your days actually looked like.
What you could do.
What you could not.

Other people fill in the gaps with assumptions. They simplify what they do not understand.

The urge to explain can feel overwhelming. To clarify. To defend your integrity.

But you cannot correct a story you were never invited into.

Sometimes peace comes from stepping off the stage entirely.

Their misunderstanding is not evidence against you.