Emerson Wheeler: We’ve let down so many people with prolonged COVID

This comment was written by Emerson Wheeler, a public health professional specializing in health equity for the disability community and graduate student at the University of Vermont. They are public speakers and consultants for organizations looking to improve workplace inclusivity, accessibility, and culture. In their spare time, Emerson reads lots of books and explores Vermont, looking for wheelchair-accessible trails and adventures.

In 2020, I began my third year of medical school at UVM during what many people considered an “unprecedented time.” Our clinical rotations have been delayed, then shortened, due to the Covid-19 pandemic. It was a scary time because we didn’t know much about SARS-CoV-2.

There were also a lot of unknowns about what was going on with my body. I ignored my symptoms until I couldn’t deny them anymore. I was losing function in my legs, fainting outside of patient rooms, suffering from migraines and problems with concentration and memory. I spent my little free time desperately searching for answers.

Doctors watched me lose over 25 pounds in just a few weeks, saw my shoulders dislocate in front of them, gasped as my heart rate changed dramatically before their eyes, still insisted over and over that it was all in my head (wasn’t) and that there wasn’t Something they can do (there was). I felt scared, shy, and lonely most of the time.

Whatever you want to call it — limbo, purgatory, or emptiness — the waiting periods between symptoms appearing and diagnosis and treatment are excruciating. They are times filled with anxiety, fear, shame, guilt, self-blame, and ultimately, anger and sadness.

It also often requires months of waiting for appointments and then a lot of smiling, encouraging providers to reassure you that your results “look normal” without any acknowledgment that “normal” results can be devastating to someone feeling anything but.

As a public health professional who specializes in health equity for people with disabilities, and as a person with a disability, I see the depth of pain that many long-time Covid patients are experiencing right now. I meet regularly with Vermonters who are suffering from prolonged covid trying to get them what they need.

Many “hikers” have lost their jobs, health insurance, homes, and families. Many spend whatever extra money they have on traveling out of state in a desperate search for quality medical care. Parents face a future in which they may not be able to teach their children how to ride a bike or walk their daughter down the aisle at her wedding.

People who have relied on physical activity for mental health are now facing a new reality: Pushing themselves hard enough to walk down the street can leave them bedridden for days or even weeks. People have lost faith in the system that was supposed to help them. They have lost their dreams of the future and their identity as a person in this world. Most of them struggle – financially, emotionally and physically – to do things that would have been easy for them to do just months ago. These are our fellow community members, and they all need our help.

Studies have found that between 10 and 30 percent of people infected with SARS-CoV-2 end up with long-term symptoms, and recent data from the Centers for Disease Control and Prevention found that one in five people are infected. With Covid-19 they have a long form of Covid.

Long Covid can occur after any Covid infection, even if it is mild or asymptomatic. In addition, a recent study in Nature Medicine found that vaccination reduces the risk of long-term symptoms by only about 15%. All of this means that there are probably thousands of Vermonters out there who are experiencing these same issues right now, wondering what’s wrong with them, and feeling very lonely.

Inner ability – that voice inside your head asking “What’s wrong with me? Why can’t I do this? Why is this so hard? I must be stupid/weak/etc.” – A powerful player in depression and suicidal ideation for the disabled and chronically ill. It’s so hard not to feel burdened when you’re struggling to work enough to contribute to your family, or when your search for Medicare continually results in colossal bills and a lack of answers.

Charlie Valley was born and raised in Chittenden County. He was 27 and working hard every day as head of the counter-terrorism group at the Defense Intelligence Agency. I had never met Charlie, but while reading about him, I felt he was such a loyal, intelligent, caring young man with so much amazing potential.

Charlie died by suicide this year after contracting SARS-CoV-2 in January and subsequently suffered for several months with prolonged Covid. He may have felt lonely, but he wasn’t: Survivor Corps, an advocacy group for longtime Covid patients, found that 44% of its members have contemplated suicide. Research in Britain and Spain has found a six-fold increased risk of suicide among patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), another post-viral illness with symptoms very similar to long-running Covid, when compared to the general population. Any talk of a suicide epidemic without acknowledging this population clearly does not paint a complete picture.

There was a lot we didn’t know at the beginning of this ongoing “unprecedented time”; However, it is almost 2023. SARS-CoV-2 is one of the most studied pathogens ever, and there is a lot we know about it now. Just as ignorance of the law does not excuse criminal behavior, ignorance of science does not excuse poor medical care.

This is a biological disease and we actually know a lot of the science behind it. We also know that there are many comorbid disorders, many of which have options for managing symptoms. Some of these disorders include but are not limited to: postural orthostatic tachycardia syndrome, myalgic encephalomyelitis/chronic fatigue syndrome, autonomic weakness, autoimmune diseases, and much more.

Studies released this year suggested that the “brain fog” so common after an injury may be the result of poor blood flow to parts of the brain. There is also plenty of evidence supporting changes in the blood’s ability to clot after mild or asymptomatic infections, which greatly increase the risk of strokes, heart attacks, pulmonary embolism (a blood clot in the lungs) and deep vein thrombosis (a blood clot stuck in a vein). .

International research increasingly points to “microembolism” as another suspect: small, nearly invisible blood clots that don’t show up on typical coagulation tests but are clearly visible under fluorescence or bright-field microscopy.

Neurological research has found that the virus preferentially infects and kills astrocytes — the “garbage people” of the nervous system, cells that remove waste produced by neurons in order to maintain a healthy brain environment. Killing astrocytes means that brain cells, which live in an unhealthy environment filled with increasing amounts of their own waste, often also end up dying.

Recent research even found that this virus downregulates the p53 gene, which is a very important gene for cancer prevention. Downregulation of this gene leads to unrestrained cell proliferation – also known as cancer. We obviously know a lot about what can happen even after a mild acute infection.

Most of our “Healthcare Heroes” are still incredibly stressed and exhausted. Understandably, they often take the easy way out with these patients, throwing in “we don’t know enough about this” or “we don’t treat long Covid patients here” before transferring the patient to another provider with a similar approach.

Providers are not set up for success, particularly with patients whose problems were not obvious. They need accessible ways to learn the science behind long Covid comorbid disorders and the treatments that have helped patients with these conditions.

Charles Vallee’s parents are sad Quoted in Vermont Community Newspaper Collection “Not understanding what Covid has done so long to our son is almost as bad as the shock of death,” he said.

If someone tells you they have cancer, you probably imagine chemotherapy or radiation. You can probably imagine the fear they feel about their future. Can you imagine what it’s like with long covid? why not? If you know more than five people who have had a COVID infection, chances are you know someone who has or has had COVID for a long time.

If you are a service provider, we know you are doing the best you can. 15 minutes is hardly enough to see a healthy patient, let alone one with complex chronic problems. You are doing an incredible job on a system that is set up to fail.

However, these patients need your help. Repeatedly hitting them back into the void hurts a lot more than you might realize. Vermont has too many providers, and many patients do not have the means to travel out of state for care. Please, be open to saying “I don’t know enough about this, but let’s learn together.” That’s all these patients need to hear.

If you are a member of the community, connect with your friends and family. Try to be honest about your struggles if you are facing them. Know that if this happens to a friend or family member, they may be so lost in their own shame and guilt that they may not share their struggles with anyone. The best thing we can all do is open the door to more conversation about this, without blame or invalidation.

We need a federal commitment to increase continued investment in long Covid. We need legislation that helps these families preserve their homes, their jobs, and their lives. We need public health campaigns that focus on raising awareness of this disease and its effects, so that people spend less time in the devastated phase of “What’s wrong with me? I must be so weak and pathetic and stupid” and move more quickly into the “There’s a name for this, there are other people dealing with it, there are things I can try it to control his symptoms and meet my needs.”

More importantly, we all owe it to people like Charlie to stop saying “I’m sure you’ll be fine” and start saying “I believe you. How can I help?”

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tags: mentally handicapped personAnd the Charlie ValleyAnd the Emerson WheelerAnd the Long covidAnd the Long DistancesAnd the One in five people with Covid-19 has long-term CovidAnd the Thousands of Vermonters are strugglingAnd the We need to know more

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