Long Covid Collective

06/04/2026

Long Covid, one symptom at a time.

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

06/04/2026

I feel lucky to live in Austin, Texas. There are so many free things to do here. Movies in the park. Live music. Hidden swimming holes. Hyde Park’s monthly storytelling nights. And there’s always a new restaurant I want to try.

I see snippets on social media and for a moment, I think, “Cool, I want to go.”

Then I start doing the math of what it would cost me to even attempt it. The energy. The pain. The recovery time. And knowing there’s a strong chance I may have to cancel after getting ready to go.

My home is my sanctuary, and I have the world’s best dog. But that doesn’t stop me from wanting to be part of the world outside my front door.

06/03/2026

Wednesday Night Hangout tonight at 6 central. Register one time and receive the link by email. Save the link to your calendar to use each Wednesday.

Welcome! You are invited to join a meeting: LCC Wednesday Night Hangout. After registering, you will receive a confirmation email about joining the meeting.

06/03/2026

Summer can be rough on a lot of chronic illnesses.

For many of us, heat is more than uncomfortable. It can trigger symptoms, drain energy, and turn a manageable day into a difficult one.

If your friend with a chronic illness suddenly needs to leave early, cancel plans, sit in the shade, or spend the rest of the day recovering after being outside, there’s a good chance their body is working a lot harder than it looks.

Heat can affect people differently, but these are some of the symptoms many of us battle when temperatures climb.

What symptoms get worse for you in the summer?

06/02/2026

When illness took away so much of my ability to participate in the physical world, the digital one became where I found friendship, community, purpose, laughter, advocacy, and connection.

What people don’t always see is that participating there isn’t always easy, either. 😏

Some days typing hurts. Some days my wrists feel too fatigued to type. Some days responding to messages or leaving comments takes more energy than I have to spare. I switch to using the microphone to type, but it’s just as exhausting.

But connection matters. A lot.

So I keep showing up. I probably do some harm by pushing it, but I think lack of connection is more harmful.

Anyone else relate?

06/01/2026

How does a community become a movement?

In our latest episode of The After, we launch the first installment of our Co-Founder Stories series! We sat down with LCC Co-Founder and social media guru Cindy Kohler for a candid conversation about connection, purpose, and finding meaningful ways to show up for one another.

Cindy reflects on the origins of the Long Covid Collective, the role creativity has played in her life, and what continues to motivate her advocacy today.

🎧 Watch or listen now on YouTube or Spotify, and let us know your thoughts in the comments!

05/31/2026

Great summary to bookmark when you need to explain this misunderstood condition.

🔷💠Myalgic Encephalomyelitis (ME) Summarized for the last day of ME Awareness Month💠🔷

Myalgic Encephalomyelitis (ME) is a neurological disease characterized by complex, multi-system dysfunction. It is also known as Chronic Fatigue Syndrome (CFS) or ME/CFS. Prominent features include pathological dysregulation of the nervous, immune, and endocrine systems, impaired cellular energy metabolism and ion transport, as well as cardiovascular abnormalities.

ME has more than 60 symptoms. Post-exertional malaise (PEM) is the hallmark symptom of ME. It refers to the worsening of symptoms following even minor physical, mental or emotional exertion, with symptoms typically worsening 12 to 72 hours after activity and lasting for days, weeks, months or even years (Open Medicine Foundation Canada).

Key ME Statistics:

🔷 Estimated Global Prevalence: It is estimated that 30 million people globally have ME (World ME Alliance).

🔷 Recovery Rate: Less than 6% of ME patients make a full recovery (MEpedia).

🔷 Undiagnosed Cases: Approximately 90% are undiagnosed (ME CFS Clinician Coalition).

🔷 Prevalence Compared to Multiple Sclerosis (MS): In the United States, ME has a prevalence rate of 0.42%, compared to 0.09% for MS, making ME over four times more common (ME Association).

🔷 Inability to Work: Approximately 75% of ME patients are unable to work due to the severity of their symptoms (ME Action).

🔷 Housebound or Bedridden: About 25% of individuals with ME/CFS are confined to their homes or beds because of the illness (ME Action).

ME patients have a horrendous quality of life: "We've documented, as have others, that the level of functional impairment in people who suffer ME/CFS is comparable to MS, AIDS, end-stage renal failure & chronic obstructive pulmonary disease." - Dr. William Reeves, former CDC chief of viral disease branch

The spectrum of ME ranges from mild to very severe, with patients experiencing fluctuations in symptoms and severity over time:

💠Mild: Even mild ME patients are gravely ill. Only 25% of ME patients can work with great difficulty. Mild patients have lost at least 50% of their functionality (ME Association).

💠Moderate: Moderate ME patients are mostly housebound and often require a wheelchair outside of their homes. Daily tasks like bathing and cooking are a struggle (Better Health Channel, Victoria State Government Department of Health).

💠Severe: 25% of ME patients are severe or very severe. Severe patients are completely housebound and often bedridden. Most are extremely sensitive to sound and light (ME Action Network).

💠Very severe: Very severe patients are completely bedridden, experience extreme pain, are often tube-fed, and many suffer from periodic paralysis. Some even pass away or choose euthanasia (25% ME Group for the Severely Affected).

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