Long COVID 101
Our society has been changed by the SARS-COV-2 pandemic. With so many who have died, our families mourn. With the lock downs, our economy has been changed forever. However, likely one of the most lasting effects for our society is the number of patients who have developed Long COVID. I am very glad that our medical system is taking this consequence of the pandemic seriously, but I am distressed by the misinformation and faulty news stories that are confusing my patients. I want this website to be a safe place to get scientifically validated and patient validating information about the Long COVID syndrome.
We are at a crossroads in our society regarding Long COVID. Many don’t see it, but which way we turn as a society will change the lives of millions of patients for better or worse. We have been at this place twice before in recent decades, and our prior responses were lacking. While Long COVID is a “new problem” there are two other epidemics that have a lot of similarities. The honest truth is that while COVID-19 is a recent phenomenon, the core syndrome of Long COVID has been around forever, though it was caused by different infections.
There was a surge of interest, but very poor public health training, back in the 1990s related to an almost identical syndrome called Myalgic Encephalomyelitis (ME). One of the biggest problems with Myalgic Encephalomyelitis is the name, since it isn’t always myalgic (muscle pain) and it is hardly ever an Encephalomyelitis (inflammation of the brain and spinal cord). The other term for Myalgic Encephalomyelitis is “Chronic Fatigue Syndrome” (often called ME/CFS) which doesn’t capture the debilitating symptoms these patients have. Looking at the list of symptoms of ME/CFS, you will find a nearly identical list to those described in Long COVID patients. ME/CFS is thought to be typically occur after infection with Epstein Barr Virus, and there have been waves of it in different countries at different times due to new outbreaks of this infection. ME/CFS could be called Long EBV or Long Mono. There is even CDC guidance on the identification and treatment of ME/CFS because our scientific community realized it was very real and had a very real impact on our patients.
Another condition began to appear on the landscape around the same time with most of the literature in the early 2000s. Our scientific community took a dramatically different approach with a lot of misinformation and outright denial. A nearly identical syndrome to Long COVID can occur after infection and successful treatment of Lyme disease. The denialism in modern medicine that these patients exist has led to a rejection of modern medicine by these patients with disastrous results. In some cases, patients will spend tens of thousands of dollars getting harmful treatments like months long IV antibiotics. In other cases, doctors dismissing the diagnosis of “Chronic Lyme” results in patients dismissing the diagnosis that the doctors make. I’ve met patients with classic and very treatable Multiple Sclerosis who were convinced that antibiotics would help, dying after they or a family member refused treatment for MS.
So Myalgic Encephalomyelitis was validated as real, Chronic Lyme was dismissed as false, but neither have managed to capture the attention of so many in the public as Long COVID. There could be many reasons for this, but it is likely because of the sudden and extreme impact COVID had on all of us. Very few reasonable people doubt that COVID-19 is real, and with tens of millions of patients developing symptoms after recovery from the infection, the medical community has, as a whole, accepted this chronic condition. So, what is Long COVID? We can discuss what causes it, but it is probably better to start with what symptoms it can have. Usually, some of the symptoms start during the primary infection, but will get a little better after the acute infection resolves. Unfortunately, they worsen again after a few weeks and more symptoms begin to pile on.
The most common complaints are generalized weakness or fatigue and cognitive troubles (typically called Brain Fog). There is also a severe headache syndrome with many migraine associated perceptual disturbances such as dizziness, motion sensitivity, difficulty with bright lights and loud sounds, and episodes of pain or tingling in various parts of the body. Patients frequently have shortness of breath, rapid heart rate, and lightheadedness even with minimal activity like walking to the bathroom. Difficulty with sleep (either insomnia or constant drowsiness) and appetite are also common. Finally, the syndrome can have major mood symptoms with severe depression or anxiety being very common. The worst part is how these symptoms affect each other, causing a vicious cycle where the fatigue worsens the pain, the pain worsens the insomnia, the insomnia worsens the cognitive complaints, and the cognitive struggles worsening the fatigue.
I’ve recently written a book on Long COVID because there is no way to describe in detail how severe this is and what causes it in a quick article. However, the main message I want patients to have is that it is very real, and there are many treatments that can help. Most of the treatments aren’t medications, though there are many medications that can help certain components. While it happens after infection with the COVID virus, it is thought to have many contributing causes and most of the symptoms have nothing to do with active infection. Most of the symptoms are due to a faulty immune response. The body’s immune system ramps up to fight off the virus, but starts causing havoc in the rest of the body. Sometimes this havoc is destructive but in many cases, there is no actual damage to the brain, spinal cord, nerves, or muscles. That makes it difficult to identify with scans or blood tests, but in research studies there are many “markers” that prove it is a whole body condition affecting the muscles, the heart, the lungs, and the nervous system.
Keep checking back for more articles, but if you would like to discuss your Long COVID syndrome and what you can do to improve recovery, check out my book or request a consult today!