The Long COVID Patient Journey: A Complex and Uncertain Road

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https://www.hcplive.com/view/the-long-covid-patient-journey-a-complex-and-uncertain-road

News Article

December 10, 2024
The Long COVID Patient Journey: A Complex and Uncertain Road
Author(s):

Sophia Abene

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Key Takeaways

• Long COVID symptoms, including fatigue and cognitive impairment, persist post-infection, complicating diagnosis and treatment.
• The condition often overlaps with ME/CFS, presenting diagnostic challenges due to similar symptom criteria.
• Current treatments are off-label, focusing on symptom management, with a pressing need for FDA-approved therapies.
• Experts emphasize the need for better diagnostic tools and research to bridge gaps between research and clinical practice.
• Leading centers like Mayo Clinic and UT Health offer specialized care, providing hope and recovery pathways for Long COVID patients.

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Navigating the long road of Long COVID requires more than just recovery from an infection, it demands specialized, multifaceted care to address persistent and often invisible neurological symptoms.

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The ME/CFS Overlap and Diagnostic Complexities3
A central theme in the discussion was the overlap between Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Verduzco-Gutierrez noted that many Long COVID patients exhibit symptoms that closely mirror ME/CFS, such as post-exertional malaise, unrefreshing sleep, autonomic dysfunction, and cognitive deficits. This overlap presents a diagnostic challenge, as the criteria for both conditions are similar. She said, “Some patients, their manifestation of Long COVID is a picture of ME/CFS as well, because they have the criteria for that, because a lot of the criteria also are some of very similar to Long COVID symptoms, because they have post-exertional malaise, they have unrefreshing sleep, some of them have autonomic dysfunction, cognitive deficits as well.”

Blitshteyn confirmed that studies show at least 50% of Long COVID patients meet the diagnostic criteria for ME/CFS. She stated, “We have a number of studies that showed that at least 50% of patients with Long COVID qualify for the diagnosis of ME/CFS,” reinforcing the complexity of diagnosis and treatment.

Ganesh added that infections beyond SARS-CoV-2, including Epstein-Barr Virus (EBV) and chronic Lyme disease, have long been linked to the development of ME/CFS, suggesting that Long COVID may be another post-infectious syndrome that triggers similar chronic conditions. “Taking care of ME/CFS before Long COVID, we knew even then that about 70% of all cases of ME/CFS were related to an infection of sorts, and we have seen it with different infections, most commonly EBV, chronic Lyme, reported mold exposure, and after Zika,” he said.