3 Years On, Long Covid Patients Still Demand Answers

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CHICAGO – Ghenya Grondin, a postpartum doula from Waltham, Massachusetts, was infected with COVID-19 in mid-March of 2020. At that time, there were no tests, social distancing or masks, and the medical community had not recognized long COVID as a complication of the disease. Three years later, at least 65 million people worldwide are estimated to have long COVID, according to a review published in Nature Reviews Microbiology. Over 200 symptoms have been linked to the syndrome, including extreme fatigue, difficulty thinking, headaches, dizziness, sleep problems, chest pain, and immune dysregulation.

Grondin is part of a community of first-wave long-hauliers who faced the new disease without a roadmap or support from the medical establishment. She and her fellow long-hauliers have experienced a host of symptoms, including cognitive dysfunction, sleep apnea, pain, and in her case, a brain aneurysm. Grondin grew concerned when she continued to have symptoms three months after her initial infection, but there was no name for it then. She has since been diagnosed with long COVID and can no longer work.

Scientists are still working to understand why some people develop long-term symptoms, but syndromes like this are not new. Other infections, such as Lyme disease, can result in long-term symptoms, many of which overlap with long COVID. The leading theories of the root causes of long COVID include the virus or viral proteins remaining in the tissues of some individuals, the infection causing an autoimmune response, or the virus reactivating latent viruses, leading to inflammation that damages tissue.

Kate Porter, a project manager from Beverly, Massachusetts, believes she was infected with COVID-19 on a flight back from Florida in late March 2020. She had daily fevers for seven months, muscle weakness, shortness of breath, and excruciating nerve pain. Although her health has improved now, she still suffers from near-daily migraines and neck pain that she fears may never go away.

Genie Stevens, a climate education director from Santa Fe, got infected while travelling to Cape Cod in late March of 2020 and never left. Although largely recovered, Stevens still has flare-ups of brain fog, exhaustion, and high-pitched ringing in her ears when she pushes too hard.

In the first two years of the pandemic, women were twice as likely as men to develop long COVID, and 15% of all those affected at three months continued to experience symptoms beyond 12 months. According to the RECOVER trial, non-Hispanic white women in wealthier areas were more likely than others to have a long COVID diagnosis, likely reflecting disparities in access to healthcare.

While there are no proven treatments, research is underway. People infected later in the pandemic had the benefit of vaccination, which “protects at least to some degree” from long COVID, according to Dr Bruce Levy, a co-principal investigator of the National Institute of Health’s RM5.24 billion U.S. RECOVER trial. However, the first-wave long-hauliers are still struggling with the long-lasting effects of COVID-19 without a clear path forward. – Reuters