Unraveling Long COVID: Bay Area Survivors Confront Mysterious Symptoms and Medical Skepticism

Jennifer Hooper, 56, has faced a tough four years without work or even driving. On some bad days, cooking for herself feels impossible.

Her troubles began in July 2020 when she caught COVID-19. What started as a fever and cough turned into serious issues like fatigue, brain fog, blurred vision, dizziness, and chest pain. These symptoms never went away, leaving her mostly stuck at home in Portola Valley.

Finding doctors who understand and take her symptoms seriously has been challenging. “One doctor looked at me as if he didn’t believe me,” she said, her voice hoarse.

Unfortunately, Jennifer’s story is not unique. The CDC estimates that around 17 million adults in the U.S. are living with long COVID, which is defined as symptoms lasting three months or longer after infection. It remains poorly understood, and currently, no FDA-approved treatments exist.

Patients are often left to navigate a complicated healthcare system. Many struggle to find open-minded doctors willing to try different medications. According to a 2023 survey, only a small percentage of doctors feel confident diagnosing and treating long COVID.

Research on long COVID is still in early stages. It’s thought to be a mix of various issues that can occur after COVID infections, including lingering viral effects, immune system changes, and blood clotting. Some researchers link it to chronic fatigue syndrome (ME/CFS), which can also follow viral infections.

In October last year, Jennifer tried to schedule an appointment at the Stanford Post-Acute COVID-19 Syndrome Clinic (PACS), one of the few places specializing in long COVID care. Yet, the wait list was so long that she can’t be seen until September of the following year. “It shows that demand far exceeds the available help,” she stated, feeling the frustration of navigating this slow system.

Dr. Hector Bonilla, a co-director at the Stanford PACS, sees about 15-20 long COVID patients each week. His clinic is working to hire more staff to help reduce wait times, but finding doctors interested in treating long COVID is tough. “Many doctors believe these patients are just exaggerating,” he noted.

Charlie McCone, 35, from San Francisco, also faced similar struggles after contracting COVID in March 2020. Previously active, he found himself winded after just a short time doing everyday activities like listening to music. His breathing problems have been particularly severe, feeling like a weight was pressing on his chest.

After researching, Charlie suspected that small clots might be causing his breathing issues. Finding a doctor willing to explore this path took time—he approached over 30 doctors without success. Eventually, he found one who prescribed a blood thinner. Now he’s housebound instead of bedridden, but it’s still a significant change.

Paige Morrisey, 27, was working at Trader Joe’s when she tested positive in December 2020. Once a dancer and runner, she now gets tired after just a block of walking. She also struggles with anxiety and memory issues, feeling dismissed by some doctors who seemed more interested in her for research than as a patient. After months of difficult experiences, she joined an online group focused on lifestyle and dietary changes for recovery.

The stories of Jennifer, Charlie, and Paige highlight ongoing issues between patients seeking help and doctors worried about untested treatments. Dr. Bonilla expressed the need for more patient participation in clinical trials to gather necessary data. He believes that if doctors dedicated even a small amount of time each week to learning about long COVID, it would greatly improve understanding and care for patients.

Experts agree on the urgent need for more clinics and better training for general practitioners when it comes to chronic conditions like long COVID and ME/CFS. “It’s crucial for medical societies to invest in educating their providers,” said Jaime Seltzer from Stanford Medicine. More education could improve diagnosis and treatment for many patients still struggling to be heard.

With so many patients needing help, the healthcare system faces a pressing challenge. Change is needed to ensure that patients receive proper care and support in their recovery journeys.

Source link

coronavirus,health care,healthy living,mental health,photos and videos,science,stanford university,vaccines