Long Covid Collective

09/03/2026

Long Covid, one symptom at a time.

This is part of our ongoing series highlighting the over 200 symptoms associated with Long Covid.

09/03/2026

I couldn’t sleep last night and started thinking about the collective loss Long Covid leaves in its wake.

The bright mind too fatigued to work. The grandparent who would be making magical memories with their grandchildren. The activist who could be leading the way to change. The friend who can no longer show up the way they once did.

When we talk about the impact of Long Covid, so much of the conversation is economic - lost productivity, missed work, healthcare costs.

But the intangible losses feel so much bigger to me.

My grandmother was my world. I can’t imagine how different my life might have been if illness had kept her from being such a huge part of it.

There’s no way to measure that kind of loss.

And none of this means that people with Long Covid have stopped contributing. We haven’t. But millions of people are living with only a fraction of the capacity they once had.

There is an enormous amount of human potential sitting behind closed doors simply because people are too sick to use it.

We talk a lot about what Long Covid has taken from us.

I don’t think we talk nearly enough about what our absence has taken from the world.

09/02/2026

***Long Covid Collective Community Guidelines ***

Long Covid Collective exists to provide information, connection, and community for people affected by Long Covid and related conditions.

These guidelines exist first and foremost to protect the people who gather here. Our comment sections are an important part of this community. They are where people share experiences, ask questions, find others who understand, and sometimes simply discover that they aren’t alone.

Our community includes people at every stage of their experience—people who have lived with chronic illness for decades, people newly diagnosed with Long Covid, and everyone in between. Some are hopeful. Some are grieving, angry, frightened, or exhausted. All of those experiences have a place here.

More than anything, we ask that you meet people where they are.

BE KIND AND RESPECTFUL.

You don’t have to agree with someone’s choices, beliefs, treatment decisions, or outlook. You do need to respect their right to have an experience different from yours. Personal attacks, ridicule, shaming, and inflammatory comments will be removed, and users may be blocked.

MAKE ROOM FOR HOW PEOPLE FEEL.

Hope and positivity are welcome here, as are grief, anger, fear, frustration, and exhaustion. Please don’t tell others how they should feel or encourage them to “stay positive,” “choose happiness,” or “be grateful.” Support people where they are rather than asking them to feel differently.

RESPECT DIFFERENT RELIGIOUS AND SPIRITUAL BELIEFS.

Faith, religion, and spirituality can be meaningful sources of comfort to many, and our community includes people of diverse beliefs. People are welcome to share their own experiences when relevant, but please don’t tell others that they need a particular belief system, prayer, or spiritual practice to heal, cope, or become well.

SHARE EXPERIENCES RATHER THAN PRESCRIBING SOLUTIONS.

We learn a great deal from one another, and we welcome people sharing what has helped them. What works for one person may not work for another. Please share from the perspective of “this helped me” rather than “this is what you need to do.” And remember that sometimes people are simply sharing an experience and aren’t looking for advice.

THERE IS ROOM FOR DIFFERENT EXPERIENCES.

Long Covid affects people differently. Not every post will resonate with everyone, and that’s okay. We want to make space for a wide range of experiences and perspectives.

NO PROMOTIONS, SPAM, OR MIRACLE-CURE CLAIMS.

We do not allow spam, solicitation, business promotion, or claims of guaranteed or “miracle” cures.

NO VACCINE, MASKING, OR POLITICAL DEBATES.

These subjects can quickly become divisive and distract from the purpose of this community. We do not allow our pages to be used for pro- or anti-vaccine arguments, debates about masking, or political debate. Comments attempting to start or continue these debates will be removed, and accounts may be blocked.

ABOUT MODERATION.

LCC is a patient-led nonprofit, and our social media is managed by one person who also lives with Long Covid and volunteers her time. We read and moderate comments carefully because protecting this community matters to us. Comments that are harmful, judgmental, inflammatory, promotional, or disruptive may be removed.

These guidelines aren’t intended to prevent disagreement or require everyone to think alike. They exist so people can participate without being judged for what they’re experiencing, how they’re coping, or where they are in their journey.

There is room here for people who are hopeful and people who are struggling. For people searching for answers and people exhausted from searching. For people who have been doing this for decades and people who have just arrived.

Please meet people where they are. ❤️

09/02/2026

In this episode of The After, LCC Co-Founders Maggie Moore and Virginia Hernandez share the story behind the Long Covid Collective, the experiences that inspired it, and why community, storytelling, and visibility matter to the Long COVID movement.

They also share exciting updates on Long COVID: The Full Picture, LCC’s photo documentary project exploring the lived experiences of people with Long COVID, and talk about their vision for the future of the organization, including advocacy, connection, creative storytelling, and building resources for people living with chronic illness and disability.

Listen or watch now on Spotify or YouTube. (links in bio for Instagram)

https://youtu.be/CVnFRt5X6LQ

https://open.spotify.com/episode/3CWpHMxmAcHGReeAkMTWP3?si=SNUvNZWUQa6uO0tSkg1JpQ

09/02/2026

A “good day” with chronic illness might look like a bad day to someone who’s healthy.

“Good” doesn’t mean symptom-free.
It doesn’t mean well. It definitely doesn’t mean back to normal.

Often, it just means better than yesterday.

Because when you live with chronic illness, “good” is always a relative term.

09/01/2026

A note about this post: These posts are not about me personally. I may write in a way that gives voice to a thought or feeling, but the purpose is to reflect experiences we hear throughout the Long Covid community and help people feel seen.

This isn’t a statement that no one with Long Covid will ever have fun again. Our posts are meant to meet people where they are, and sometimes that means acknowledging the thoughts, fears and grief that come with chronic illness without immediately trying to reframe them into something positive.

We watch the comments on posts like this very carefully because we never want someone who is struggling to come here looking to feel understood and leave feeling judged, blamed or as though they simply aren’t trying hard enough to be positive.

Some people are finding new ways to have fun. Some are currently too sick to do the things often suggested. Some are grieving what they’ve lost. There is room for ALL of those experiences here.

Sometimes people just need to hear, “I understand why you feel that way.”

_______________________________________
Fun requires energy.

Energy to leave the house. Energy to get ready to leave the house.

Energy to socialize. Keep up with conversation. Laugh. Move around. Do we dare dream of dancing?

Drinking is likely a no-go. Plenty of things on the menu may be a no-go.

And planning isn’t actually much more than a wish until the hour of the day of.

So what do we do? Sit at home and watch TV? Forever?

We’re all at different limits, but we’re all limited. Some dream of leaving the house. Some dream of being able to sit up.

And I think sometimes we’re allowed to say something that isn’t particularly profound or inspirational:

We miss having fun.

We miss doing something just because we feel like it, without calculating the energy it will take, what accommodations we’ll need, what we’ll have to avoid, or how badly we might pay for it afterward.

Rest isn’t miserable. Being home isn’t miserable. Watching TV isn’t miserable.

But when those things stop being choices and become most of your life, they feel very different.

Day after day after day of nothingness is hard to take.

Sometimes we don’t need to find the lesson in that.

Sometimes we just really miss having fun.

08/31/2026

The Oprah Podcast is looking for chronic illness stories. The instructions are below if you want to submit your story.

08/31/2026

Smithsonian Magazine just published a very long article about Long Covid research, and since a very long article is not exactly designed for people with Long Covid, I am putting a summary below.

The encouraging part is not that researchers have found a cure. They haven’t. It’s that the picture of what may be happening in our bodies continues to get clearer.

Researchers are looking at several possible mechanisms, including viral persistence, immune dysregulation, reactivation of other viruses and problems with mitochondrial function. And these aren’t necessarily competing theories. Long Covid may involve several of these processes at once, and what is driving the illness may also differ from one person to another.

There’s particularly interesting work happening around viral persistence. Researchers at UCSF have found SARS-CoV-2 RNA in tissue months and even years after the initial infection, including in gut and bone-marrow tissue. Researchers are now trying to understand whether persistent virus could be setting off some of the other problems they’re seeing with the immune system and inflammation.

The treatment picture is still frustrating. There is no FDA-approved drug specifically for Long Covid, and some treatments that looked promising haven’t panned out. But there are roughly 90 Long Covid drug trials underway or completed around the world, looking at everything from antivirals and immune-modulating drugs to monoclonal antibodies and medications already approved for other conditions.

One of the researchers in the article compared Long Covid to having the pieces of several different puzzles scattered across a table. I thought that was a pretty good description of where we are. Scientists haven’t put the puzzles together yet, but they are finding more of the pieces and beginning to understand how some of them fit.

The article also puts the scale of all of this into perspective. Roughly 21 million American adults are estimated to have experienced Long Covid symptoms, and more than one million are believed to be out of the workforce because of it.

For those of us who have been living with this for years, I think there’s an important distinction between “they still don’t have the answer” and “they still don’t know anything.” We hear the second one a lot, and it simply isn’t true.

There is a tremendous amount scientists still don’t understand about Long Covid, and research and treatment development are moving far too slowly for people whose lives are on hold while we wait. But they are finding biological abnormalities, developing better theories about how those abnormalities may connect and testing treatments based on what they’re learning.

No miracle announcement here. But there is progress, and I’ll take it!

Long Covid saps the strength and vitality of patients, who have little recourse to fight it. A team of specialists—including an afflicted researcher working mostly from her bed—is looking for answers