It’s been five years since Covid was the main topic of conversation around everyone’s dinner table – or rather, everyone’s video call, as we were all social distancing. For most of us, Covid feels like a distant memory or bad dream. A kind of I can’t believe that actually happened kind of feeling. For those suffering from long Covid, however, the nightmare rages on. Alison Cohen, a dedicated epidemiologist and researcher at UC San Francisco, had spent the years since the global outbreak began studying a phenomenon known as long Covid. Little did she know that she would become her own subject of interest. She contracted COVID-19 in January 2022 and shortly after became one of the estimated 5% of U.S. adults living with long Covid. Her personal experience not only shed light on the challenges faced by long Covid patients but also fueled her determination to enhance our scientific understanding of the condition.
The Experience of Long COVID
Long covid both is and isn’t what it sounds like. It’s not that you are sick forever, rather, certain symptoms tend to stay with you and you can’t seem to shake them. Some of the most common of these are extreme fatigue, brain fog, difficulty breathing or lung problems, and a decreased immune system. In reality, there are over 200 symptoms of the condition, and the way everyone experiences it is different. As an expert in epidemiology and a patient herself, Cohen’s firsthand encounter with long Covid has brought to light the debilitating nature of the condition. Struggling with persistent symptoms such as fatigue and difficulty in prolonged sitting or standing, Cohen’s unwavering resolve to navigate through these challenges has been remarkable.
Read More: Scientists Behind Early COVID Predictions Warn of New Virus in US That Could Endanger Humanity
Managing Symptoms and Daily Life
For Cohen and many others living with long COVID, each day presents new hurdles and limitations. The heavy fatigue has completely changed how they live there lives. Cohen, like the millions of others who also suffer the same, meticulously monitors her symptoms, rationing her energy like “spoons” – a metaphor often used by individuals with disabilities to describe their daily energy reserves. Things she used to enjoy, such as long runs, are nearly impossible. Even long car rides can be too much. She has to ration her energy, making it very difficult to maintain both her career and a social life.
“Long Covid for many, including me, is an energy limiting condition. That means that there are fewer hours in the day to do things, and there are more activities that are off limits,” she explained. Of the brain fog, she said: “That can be described as the cognitive equivalent of trying to wade through shoulder-high mud.”
For many, their jobs, friendships, and other relationships are highly compromised. Many people have had to reduce their hours or quit their jobs altogether, leaving less funds available for regular expenses, let along those related to the condition. Another one of the most common symptoms for people with long Covid is lung scarring. These scars and inflammation impair the body’s ability to circulate oxygen throughout the body, further exacerbating the chronic fatigue. Finally, another common and dangerous symptom is heart problems. The scarring can cause arteries to stiffen up. Many also find themselves with a secondary condition called postural orthostatic tachycardia syndrome (POTS). It occurs because of inflammatory damage to the nerves that dictate when blood vessels widen and constrict. With POTS, this is not functioning properly, and so the heart rate speeds up in order to compensate. This can leave people with a heart rate of over 120 beats per minute, even while at rest.
Bridging Research and Personal Experience
Cohen’s battle with long COVID has not only reshaped her personal life but also informed her research endeavors. Drawing upon her extensive knowledge of epidemiologic methods and the lived experience of long COVID, she aims to bridge the gap between the scientific community and the patient population. Through this unique perspective, Cohen seeks to uncover new avenues for research and interventions to better support individuals grappling with long COVID. One of the biggest problems she currently faces in terms of her research is lack of funding. The general public, she explains, is tired of hearing about Covid and the pandemic. For those who don’t suffer from long Covid, they are wanting to move on and dig back into the research for other illnesses. This means that any research that is happening for long Covid is moving very slowly and there is almost no funding. This means that for those with long Covid, treatment and cure are still a long ways away.
Read More: COVID Vaccine Victims Speak Out After Yale Study Links Shot To Severe Body Changes
The Future Outlook
Despite this, Cohen is still dedicating her energy and time to continuing the research into long Covid and finding answers for people like her. Looking ahead, she envisions a multifaceted approach to tackling long COVID, acknowledging that a one-size-fits-all solution is probably not feasible. With millions worldwide impacted by the condition, she stresses the importance of a collective effort to reduce reinfection risks and support those battling long COVID. This means staying home as much as possible when sick and wearing a mask if you have to go out while infected. Again, this is because those with long Covid have weakened immune systems and are much more likely to catch whatever illness you have, including Covid. By fostering a community of empathy and understanding, Cohen believes we can pave the way for a more inclusive and supportive environment for individuals living with long-lasting effects of COVID-19.
“Also, you likely know someone who has long COVID,” Cohen pointed out. “You can check in with them and see what you can do to help.”
What Scientists Have Learned About Long Covid
Scientists have made some progress in understanding long Covid in the last five years. They know that it can cause over 200 different symptoms in nearly a dozen organ systems, including the heart, lungs, kidneys, brain, eyes, and skin. Middle-aged people, particularly women and those with weakened immune systems, are more prone to experiencing long Covid, but anyone who contracts the virus can be affected.
The question is, how does Covid cause this chronic condition, and why in some people and not in others? Research suggests that SARS-CoV-2, the virus that causes Covid, may remain in different tissues after the initial infection, thus triggering long Covid symptoms. Another potential cause is the reactivation of other viruses, such as EBV and HIV, that have been dormant in individuals’ bodies. Another possibility that they have uncovered is that Covid tricks the immune system into producing antibodies that attack a person’s own healthy organs and tissues. The current research suggests that all of these factors are associated with increased inflammation in the body. This then raises the risk of experiencing long Covid symptoms with each additional Covid infection. That is to say, the more times you get Covid, the more likely you are to develop long Covid post-infection. Despite this progress, diagnosing long Covid can be complicated, as there is no specific test for the condition.
Getting Diagnosed
One of the hardest things for long Covid patients is getting diagnosed in the first place. Because the condition mimics many other chronic conditions, and that we don’t have specific tests for it yet, a diagnosis can take a very long time. Scientists are currently working on finding biomarkers associated with long Covid, such as genes, proteins, or other substances that could help diagnose the condition. Recent research has found decreased blood flow in the small blood vessels in the retina of individuals with long Covid, indicating potential biomarkers for the condition. However, because there is limited funding and personnel working on long Covid, there are concerns that the search for reliable diagnostic tests for long Covid will not slow down the search for treatments. The FDA has not approved any specific treatments for long Covid, and experts express uncertainty about potential treatments in the near future. Despite the disappointing progress in treatments, there are ongoing efforts to study potential options and develop trials, with people like Cohen leading the charge.
The Bottom Line
Alison Cohen’s journey from a dedicated researcher to a resilient patient of long Covid is, what she has called, both a privalege and a challenge. By sharing her story and expertise, she is championing an approach towards combating long Covid and advocating for greater support for those affected by the condition. Hopefully, with people like her at the helm of the research, patients suferring from long Covid will soon have hope for a better future.
Disclaimer: This information is not intended to be a substitute for professional medical advice, diagnosis or treatment and is for information only. Always seek the advice of your physician or another qualified health provider with any questions about your medical condition and/or current medication. Do not disregard professional medical advice or delay seeking advice or treatment because of something you have read here.
Read More: Mother’s Surgery to Replace Deteriorating Bones Linked to COVID Vaccine, Doctors Say