Long Covid spotlights chronic disease: Meghan O’Rourke Q&A

Shortness of breath, heart palpitations, chest pain, fatigue and brain fog – these are just some of the lingering complaints from a growing number of people, many of whom had only mild cases of acute Covid-19.

‘Long Covid’, also known as post-acute sequelae of Covid-19, is associated with a range of issues involving multiple bodily systems, as are other chronic illnesses that often go unrecognized and undiagnosed. Today, doctors and scientists are seeing epic spikes in immune dysregulation after Covid-19.

Estimates of the frequency of symptoms and long-term conditions after Covid-19 infection range from 5% to 80%, according to the US Centers for Disease Control and Prevention. World Health Organization estimates range from 10 to 20 percent.

Whatever the final numbers, medical acknowledgment of post-Covid conditions is spurring further research into the long-term effects of the infection. These discoveries, according to O’Rourke, could also advance the diagnosis and treatment of other chronic diseases.

This conversation has been edited and condensed for clarity.

CNN: How does Western medicine’s approach impact people with chronic conditions?

Meghan O’Rourke: Western medicine is very siloed – different types of doctors treat different parts of our body. This works well for acute care, but not as well for chronic illnesses that run through the body, as autoimmune diseases often do.

Systemic illnesses that produce a range of symptoms, for example neurological problems combined with joint pain, require treatment by multiple physicians. Digging up information from different providers and making sure your doctors are communicating can make it harder for patients to get comprehensive care.

Modern medicine is not comfortable treating problems that it cannot easily see on x-rays, MRIs, echocardiograms, or lab work. Patients whose bodies exist at the edge of medical knowledge are left behind.

CNN: You mention that doctors tend to interrupt patients after 11 seconds of speaking. What have you been through?

O’Rourke: When you are sick, you desperately want validation from others. Gratitude gives you the possibility of treatment and even healing, but more importantly, the dignity of your reality.

In my twenties, I saw doctors for a rollercoaster of symptoms, but no one ever thought I was sick. I became seriously ill in my mid-thirties and was incapacitated for days. Initially, no doctor could find anything.

The loneliness came not only from the lack of life, but from being alone with my illness.

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Instead of doctors saying, “We don’t have the tools to see your disease yet,” they tend to assume the symptoms are psychological and refer patients to a psychiatrist. It happened to me too.

Medical science is based on doing no harm. But there is harm caused by incuriosity when physicians reflexively classify as psychological the symptoms of patients with diseases that are difficult to measure.

CNN: What is the impact of the “care effect” on health?

O’Rourke: The “healing effect” shows that patients treated by a physician who is warm, asks questions, and expresses empathy for your suffering show dramatic improvements in health.
One study found that patients with irritable bowel syndrome treated by an empathetic rather than abrupt researcher had symptom relief as high as that associated with the strongest medications.

Doctors should be reimbursed for spending time with you and earning high empathy ratings.

CNN: What helped you cope?

O’Rourke: I spent a lot of time thinking, how can I make this disease a little more manageable? What are my goals for my life, my day, my morning, and how can I distribute my energy accordingly?

But validation must come first. You can’t manage to do your own work until you spend your energy persuading people that what you’re dealing with is real.

Once you have this recognition, you are challenged daily to balance what brings you joy within the limits of your energy. I often reminded myself that I could possess these tiny pockets of energy. They were mine.

We like to tell others how to be sick. But there’s no algorithm for that, no right answer. It is different for each person and changes from day to day.

CNN: What additional challenges do members of certain communities face?

O’Rourke: I still remember the burst of shame and anger, followed by a wave of nausea, after a doctor patronized me.

It became embodied for me at that time that this was not just my story but that of tens of millions of Americans. If anything, I had a good experience with chronic illness compared to many.

Privilege – financial, educational, geographical, linguistic – plays a huge role in people’s experience with these diseases, which require enormous perseverance. The problem is compounded by structural racism and the lack of a social safety net which have tangible impacts on a person’s immune system.

Additionally, many physicians who understand these complex diseases do not take out insurance. They want to free themselves from the bureaucracies that limit the time spent with patients at the 15-minute appointment.

CNN: What has the Covid-19 pandemic taught Western medicine about chronic disease?

O’Rourke: Covid has dramatically dramatized the fact that infections can affect people in different ways.

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An emerging vanguard of medicine points to the idea that many chronic diseases are actually caused by the aftermath of an infection that affects a subset of patients who never fully recover.

Even before Covid, researchers were working to advance the idea that infection can trigger many types of chronic diseases, including autoimmune diseases, myalgic encephalomyelitis/chronic fatigue syndrome, or even Lyme disease. chronic. Long Covid fits into this model.

CNN: How long does Covid show up? What do you advise people who are suffering?

O’Rourke: Some patients report physical, neurological, or cognitive symptoms. Evidence suggests that the immune response to Covid can impact your autonomic nervous system, triggering dysautonomia.

Many people with long-term Covid have documented postural orthostatic tachycardia syndrome, which affects blood flow. It can cause irregular blood pressure, fainting, dizziness, chest and abdominal pain, brain fog, and even nausea. POTS is measurable, but doctors don’t routinely look for it.
One piece of advice I give to any long-time Covid patient is that you actively request tests, including for dysautonomia and POTS, as they will not be administered automatically.
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Research also suggests that Covid can trigger food sensitivities, creating an immune response that would cause brain fog and fatigue.

Even patients who have only had mild cases of Covid can experience ongoing changes in breathing patterns that compromise both their nervous system and their blood oxygen levels. Targeted breathing exercises can help.
My general recommendation is to keep looking for a really knowledgeable doctor, ideally a doctor from a specialist unit like the Mount Sinai Center for Post-Covid Care. As with any multisystem chronic disease, coordinated care is best.

CNN: How has the prevalence of long Covid symptoms among healthcare workers changed medicine’s view of these diseases?

O’Rourke: Invisible diseases are more visible than ever.

Post-acute Covid syndrome will likely turn out to be an umbrella term for different types of illnesses triggered by SARS-CoV-2. But for a long time, Covid has shed light on a wide variety of chronic diseases that all share immune and nervous system dysfunction.

Despite my health problems, I choose to heal
The scale of the problem, now that so many people have been infected with Covid, has led to new funding for research. WHO, NIH (National Institutes for Health) and other places are committing new funds. But will these new research funds be applied appropriately? Will patient voices and experiences be centered?

Some researchers are concerned about Western medicine’s continuing tendency to ignore patient testimony.

Still, many researchers are expressing hope that new attention and urgency around the long Covid will lead to sea change, improving diagnostics and treatments for a wide range of diseases.

Jessica DuLong is a Brooklyn-based journalist, book contributor, writing coach, and the author of “Saved at the Seawall: Stories from the September 11 Boat Lift” and “My River Chronicles: Rediscovering the Work that Built America “.

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