Many Long-COVID Patients Are Struggling With ME/CFS Symptoms

The tragedy of COVID is often measured in terms of lives lost. Over 500,000 at the time of this writing. It's amazingly hard to deal with that number of empty chairs at the kitchen table, that number of grieving families and friends.
However, an often overlooked measure of the tragedy of COVID is the length of COVID, where people who were previously infected with COVID experience symptoms weeks or months after their initial infection. In many cases, the symptoms are so debilitating that people with long-term COVID cannot return to their normal life and activity levels.
Two of the most common symptoms in long-distance drivers are fatigue and cognitive impairment, more informally known as "brain fog". Researchers don't know why some people experience these persistent effects, but a new theory is exploring the link between long-term COVID and brainstem dysfunction.
If that sounds scary or intimidating, it is. Brain stem dysfunction has been linked to chronic pain, migraines, and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME / CFS) - life-changing diagnoses that are truly devastating.
COVID isn't just a respiratory disease
At the start of the pandemic, COVID was largely viewed as a respiratory disease of the lungs. We have since learned that we were wrong. COVID can affect any organ in the body, including the heart, kidney, and brain.
Thanks to its spike protein, COVID enters human cells via ACE2 receptors. "The tips of SARS-CoV-2 are the crème de la crème: by the luck of the evolutionary draw, they can easily grab protein gates on human cells known as ACE2 receptors and pry open those gates like jackknives," Laut an article in the summer 2020 issue of UCSF magazine.
ACE2 receptors are found in your entire body - in your nose and throat, but also in your heart, your digestive tract and in your brain stem, "which has a relatively high expression of the ACE2 receptor compared to other brain regions".
COVID is likely neuroinvasive
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While it's still unclear whether long-range COVID symptoms are due to the virus entering the brain or inflammation due to your body's widespread immune response to the virus, researchers have found preliminary evidence that COVID-19 is neuroinvasive. That is, the virus itself invades the brain and nerves near the brain.
One of the most common COVID symptoms - loss of smell - is actually evidence of the virus' neuroinvasiveness. The nerves that allow you to smell are directly connected to the brain. The loss of smell isn't the only symptom with a brainstem connection, however.
Brain stem functions overlap with long-distance COVID symptoms
Researchers have found that brainstem functions - including those responsible for maintaining cardiovascular, gastrointestinal, and neurological processes - correspond in many ways to symptoms of long-range COVID.
Many long-distance COVID drivers, around 20-40%, suffer from chest pain, palpitations and tachycardia or rapid heartbeat. Many of the neurons involved in respiratory and cardiovascular function, including those that regulate the heartbeat, are located in the brain stem.
The brainstem also contains neurons that control processes in your gastrointestinal tract. Dysfunction in this part of the brain stem can lead to a variety of problems, including diarrhea, stomach pain, and vomiting. These symptoms occur in around 25 to 30% of long-distance drivers.
About 20-70% of long-distance COVID drivers report neurological symptoms such as fatigue, insomnia and brain fog. The neurons that control your sleep-wake cycle, which are responsible for taste, and even those involved in things like anxiety, depression, fatigue, and the perception of pain, are located in the brain stem.
Brain stem dysfunction can be debilitating
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During a webinar on COVID-19 organized by the International AIDS Society in July, Dr. Anthony Fauci, the country's foremost infectious disease expert, notes that the symptoms that many long-distance patients experience are "very obvious" on ME / CFS.
ME / CFS changes life. The CDC recognizes that "people with ME / CFS are not able to function the way they did before they became ill." The disease makes it difficult to work, go to school, or take part in family and social activities.
When it comes to COVID, even a mild infection can have long-term, devastating consequences. A German study on 42 patients with persistent fatigue six months after a mild COVID infection found the following: "Most patients were moderately to severely impaired in their daily life."
Brain fog can similarly be life changing. In a Q&A with Health Matters, a New York Presbyterian Hospital publication, Dr. Alexander Merkler, an assistant neurologist at New York Presbyterian / Weill Cornell Medical Center, notes that people with brain fog, memory loss, difficulty finding words, and problems with attention and being overwhelmed by simple tasks. He notes, "Many of these patients have not had a stroke or a brain infection, seizure, or anything neurologically evident during their COVID infection, but they have a disorder in their cognition."
When something affects the brain, it affects you in ways that affect everything from the way you breathe to the way you speak. Your brain is you - it's the collection of your memories and your reactions to jokes, it's the words you choose and exactly what makes you beyond the physical things that can be seen. I've seen firsthand how an invisible (to the eye) disease can invade the brain and take a loved one out from under your watchful gaze. It's devastating - for the patient and the caregiver.
Our knowledge of COVID is constantly changing. Researchers learn more over time. However, the only constant was that we don't know what we don't know. Hence, we need to focus on what we know. What we do know is that listening to public health experts, social distancing and wearing a mask will all help prevent infection with a disease that could affect your entire life.
Information on COVID-19 is changing rapidly and Scary Mommy is committed to providing the most recent data in our coverage. Because the news is updated so frequently, some of the information in this story may have changed since it was posted. For this reason, we encourage readers to use online resources from the local health departments, the Centers for Disease Control, and the World Health Organization to stay as informed as possible.
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