And The Rare Long Covid Complication That Silenced Her
After years of delighting millions with her engaging science videos, Dianna Cowern, better known as Physics Girl, suddenly went silent. Her YouTube channel, once brimming with curiosity and clever experiments, hadn’t seen a new upload featuring the physics girl herself in nearly two years. So the question was – where did she go?
While we welcome Dianna back into our screens, into our homes, and into our hearts, her return raises some serious questions. Mostly – “What the heck is ME/CFS?”
As it turns out, Dianna – like so many of us – came face to face with COVID-19 in the long months and years following the Pandemics initial outbreak in 2020. And while most people know of the respiratory symptoms and serious complications that can arise from the virus, Dianna’s case was different. What began as a viral infection spiraled into something far more insidious as Dianna developed Long COVID, a post-viral syndrome now affecting millions. But it didn’t stop. Dianna’s case continued to spiral into a debilitating and often misunderstood condition called ME/CFS.
ME/CFS: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Now she’s back—and sharing her journey with ME/CFS, a disabling and often invisible condition few understand, but many silently endure. Dianna’s case isn’t just rare. It’s revealing. Her openness in sharing her story has brought a hidden illness back into the spotlight. As she slowly returns to her online presence, we’re finally hearing her voice—and the voices of so many others who have suffered in silence.
When one of YouTube’s brightest minds disappears for two years, it’s not just a personal story—it’s a wake-up call.
What is ME/CFS?
ME/CFS isn’t just rare—it’s rarely understood.
ME/CFS, or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, is a complex, chronic illness that affects an estimated 17 to 24 million people worldwide. Despite its prevalence, it remains one of the least understood and most misdiagnosed conditions in modern medicine. At its core, ME/CFS is a multi-system disorder that disrupts the body’s ability to produce and use energy, affecting everything from brain function to immune regulation to autonomic control.
ME/CFS is often called an “invisible illness”—not because it isn’t real, but because its symptoms are hidden beneath the surface and frequently misunderstood. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is one of the few conditions primarily defined by its effects rather than its cause as, despite decades of study, the causes remain elusive. It frequently emerges as a post-viral syndrome, with many patients reporting onset after infections like COVID-19. Core symptoms like chronic fatigue, post-exertional malaise, and cognitive dysfunction can be disabling, yet standard tests often show little or nothing out of the ordinary—making ME/CFS frustratingly hard to diagnose and easy to dismiss.
ME/CFS might sound like a diagnosis of exclusion—but its impact is painfully specific. This is a serious, systemic illness defined by its devastating energy dysfunction and lack of clear biological markers. It remains under-researched, underfunded, and deeply misunderstood.
And this is where ME/CFS gets frustrating. There’s no single known pathogen, no simple blood test, and no cure. It’s often diagnosed by exclusion—after ruling out everything else—and even then, many patients are told, “It’s just stress,” or, “It’s all in your head.” Spoiler: It’s not.
(CFS) Chronic Fatigue Syndrome & Long COVID
For one, patients experience a hallmark symptom called Post-Exertional Malaise (PEM)—a dramatic worsening of symptoms following even minor physical or mental activity. Unlike healthy fatigue, which resolves with rest, PEM can leave sufferers bedbound for days. This is more than just being tired. It’s a complete metabolic crash, like the body hitting a wall and failing to bounce back.
Imagine waking up every day more exhausted than the day before—and no doctor can explain why.
Recent research into Long COVID has reinvigorated scientific interest in ME/CFS, offering tantalizing clues about what may be driving this condition—from mitochondrial dysfunction to chronic immune activation. But for now, answers remain elusive, and treatment options are limited.
BioMedical Perspective on ME/CSF
Full disclosure – my Masters is in Biomedical Research with a background in Host-Pathogen studies. Aka – I am NOT a doctor. I mostly deal with cells and chemicals, maybe tissues. NOT whole people. And this does affect how I look at and understand disease. Let me explain:
Typically, when I study a disease, I am looking from the ground up, starting with bacteria or viruses, cells and systems, specific chemical, receptor, hormones and protein signals involved. I look to the tiniest known individual pieces, try to break them down even further, and then build my way up from there. It’s not how everyone does it, but it’s what works for me and my brain. Starting with the smallest components involved, and weaving them into a network of interrelated cellular and chemical interactions to understand the pathophysiology of a disease. From little bits to the bigger picture.
But with ME/CFS… that approach doesn’t work. ME/CFS is a serious, systemic illness defined by its devastating energy dysfunction and lack of clear biological markers. It is a hugely complex disease with completely atypical disease progression that is under-researched, underfunded, and deeply misunderstood, most especially by me.
ME/CFS flips the biomedical script—and that’s why it’s so elusive. This isn’t a whodunit with a virus—it’s a chronic systems malfunction with no clear cause. There’s no clear bug, no smoking gun—just a system that’s completely out of sync.
So, from one confused person to another… what exactly is going on here?
🧬 When Biology Breaks the Rules
You might assume that an illness this debilitating would come with a clear biological fingerprint—a rogue virus, a faulty gene, or a chemical imbalance. But ME/CFS is more complicated. What we’re learning is that the entire system is out of tune—like a middle school band assembly where all the parent are nodding along patiently even as their ears are slowly bleeding and hoping to self destruct.
Historically, accounts of ME/CFS like diseases have been around since the 1950’s, often with no real formal diagnosis to offer than ‘general malaise’. It wasn’t until 1988 that groups working with the CDC collaborated to formally define “chronic fatigue syndrome”, though at the time it was still generally ruled a neurological or psyciatric disorder, or worse, dismissed entirely. But we now understand that ME/CFS is systemic, physical, and complex—not psychological.
ME/CFS is not in your head. It’s in your cells.
Researchers now believe ME/CFS is a neuroimmune energy disease, meaning it likely stems from breakdowns in the immune system, autonomic nervous system, and cellular metabolism. Mitochondria—(I know all millennials just said ‘the powerhouse of the cell’ in your heads, don’t even try to deny it)—appear to be dysfunctional, meaning the body quite literally can’t generate energy properly.
When your body can’t make energy, everything else breaks down.
Patients often have abnormal levels of inflammatory cytokines, signs of chronic immune activation, and imbalances in the HPA axis (which governs stress responses). Add in dysautonomia (disruption in blood pressure and heart rate), poor blood flow, and impaired oxygen delivery to tissues, and you’ve got a body stuck in a state of emergency—even while it’s lying still. It’s a form of fatigue that no amount of rest can help you recover from.
While there’s no single unifying theory for ME/CFS yet, emerging work on Long COVID is helping us piece together the puzzle. Autoantibodies, viral remnants, and dysregulated gut microbiomes may all be contributing factors. And the more we study these complex interrelated systems, the clearer it becomes:
ME/CFS is very real—and very biological.
ME/CFS Symptoms & Treatment
Let’s get this out of the way: ME/CFS is not just being tired. It’s not “low energy.” It’s not “just needing more sleep.” It’s not “shoulda had more coffee.” It is a full-body crash, as if every cell is low on battery and charge cord is on the fritz.
The most defining symptom is Post-Exertional Malaise (PEM)—a paradox where any physical, mental, or emotional exertion causes a dramatic worsening of symptoms, often delayed by 24-48 hours. A short walk can trigger days or weeks of pain, brain fog, dizziness, and exhaustion.
ME/CFS Patients also report:
- Unrefreshing sleep, no matter how long they rest
- Cognitive dysfunction (“brain fog”): difficulty speaking, concentrating, or remembering
- Orthostatic intolerance: dizziness or fainting when standing
- Muscle and joint pain, hypersensitivity to light, sound, and chemicals
On the outside, ME/CFS may be invisible. On the inside, it’s a constant negotiation with your body, every decision weighed against the risk of crashing. For many, it’s isolating, invalidating, and life-altering.
Imagine being hit by the flu, jet lag, and a hangover—every day—with no relief in sight… Now imagine doctors telling you it’s “just anxiety.”
Unfortunately, due to the misconceptions about what ME/CSF is and how it works, previous treatments have been far from successful and have even proved dangerous. Graded exercise therapy (GET) has caused significant harm to already struggling patients and is now strongly discouraged. Pushing beyond limits doesn’t build stamina in ME/CSF— it only makes things worse.
Here’s the hard truth: There is currently no FDA-approved treatment or cure for ME/CFS. But that doesn’t mean patients are out of options. Most treatment options focus on symptom management, activity pacing, and improving quality of life.
There is no cure for ME/CFS—but we can make life more livable.
The cornerstone of ME/CFS care these days is a strategy called “pacing”—learning how to stay within one’s energy limits to avoid crashes. It’s centered around the idea of living in the “energy envelope” and adapting life around the body’s capabilities.
Medical interventions can include medications for sleep, pain, or orthostatic intolerance (inability to regulate the body while upright), dietary support and supplements or even experimental therapies in clinical trial testing. Emerging research on treating Long COVID, especially targeting inflammation and mitochondrial health, might have more options in the future, but for now options are limited.
What ME/CSF patients need isn’t just medicine. It’s belief.
As we’ve mentioned, ME/CFS is an ‘invisible illness’. To the outside world, it can be easy to brush off symptoms of exhaustion, headaches, and brain fog. But to the person who is struggling to even think clearly enough to put together a bowl of cereal even after sleeping for 16 hours straight, these casual dismissals can leave patients feeling like they are drowning in a fog they were already lost in.
What’s needed most is investment: research funding, biomarker development, and public awareness. As Long COVID brings more attention to post-viral illnesses, there’s cautious hope that breakthroughs may finally be on the horizon.
More Research, More Hope
What We Don’t Know Might Still Save Us
The truth is, we’re still scratching the surface of what ME/CFS really is—and how to treat it. But what was once dismissed as “mystery illness” or “yuppie flu” is finally being taken seriously by researchers, clinicians, and even governments. Why? Because millions of people—including thousands of Long COVID patients—are suddenly living with these same, life-altering symptoms.
In the last few years, we’ve seen a surge in research: from advanced metabolic profiling and immune system studies to large-scale NIH initiatives and international collaborations. Scientists are asking the right questions. Now they need time—and funding—to get us the answers.
If you’ve made it this far, thank you. Whether you’re a patient, a loved one, or just curious after watching a YouTuber bravely open up about her experience—you’re part of the change. Awareness matters. Belief matters.
We can’t solve what we don’t understand. But understanding starts with listening. And sharing.
Science is slow, but so is courage. And we need both.
The more voices speak up, the harder it is to ignore them.
If You Found This Interesting, Stick Around:
🔹 There’s more where this came from. I’ll be diving deeper into the science, symptoms, and stories behind ME/CFS and other invisible and unseen illnesses.
🔹 Next up: A Deep Dive into the clinical research fuelling ME/CFS understanding.
✅ Show Some Love: If you haven’t yet, go check out Dianna Cowern (Physics Girl)’s return video. Even just a thumbs-up and a few minutes of your time make a difference. Visibility is power. Let’s make sure her story—and others’—isn’t lost in the algorithm.
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