In a recent discussion, I had the opportunity to engage with journalist and author Ryan Prior regarding his book The Long Haul. Our conversation delved into long COVID, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), patient advocacy, and the significance of precision medicine. Here are some key takeaways from our dialogue:

Nita Jain: Your book discusses the concept of medical gaslighting, where patients' symptoms are often dismissed as unreal. What steps can we take to prevent this from occurring? Should medical education adapt to encompass more about the long-term repercussions of SARS-CoV-2? How can we ensure a more validating environment for patients' experiences?

Ryan Prior: Gaslighting occurs when a person's lived experiences are invalidated by those in authority. This can result in patients feeling systematically deceived, especially when their ailments are not reflected in standard diagnostic tests. The absence of definitive biomarkers or tests for ME/CFS or long COVID necessitates a symptom-based diagnosis, which can complicate matters for doctors who rely on established tools.

It’s crucial to recognize that many patients show abnormal test results, such as elevated levels of Epstein-Barr virus or unusual cortisol levels. Addressing diagnostic accuracy and understanding the complexities of these illnesses is vital. Medical professionals often feel powerless when they lack the knowledge to prescribe treatments for these conditions. It's sometimes easier for them to deny the existence of the illness rather than engage in the intricate discussions needed for effective management.

Nita Jain: You highlight that both myalgic encephalomyelitis and long COVID can emerge after viral infections, with ME frequently following Epstein-Barr virus infections. Similar patterns were noted after the SARS and MERS outbreaks. Given their shared characteristics, such as reduced cerebral blood flow and dysbiosis, how close are we to a comprehensive theory that explains these interconnected conditions? What can we do to expedite research in this field?

Ryan Prior: In my book, I refer to the emerging hypothesis as a "theory of everything." We are nearing a comprehensive understanding of various conditions, including mast cell activation syndrome, POTS, and others. These are interconnected within a broader landscape of chronic diseases. A systematic treatment approach is essential, as they seem to be interrelated immune-associated chronic illnesses.

Nita Jain: You raise important points about the limitations of specialization in medicine. Complexity is inherent to all diseases. How often do specialists collaborate on patient care, such as neurologists and gastroenterologists addressing overlapping issues? This siloed approach can lead to significant blind spots.

You also touched on the infectious origins of Alzheimer’s and the heightened dementia risk post-COVID. How might addressing long COVID shed light on other health conditions? A holistic view of disease etiology could greatly benefit our understanding of chronic illnesses.

Ryan Prior: Indeed, the infection theory is pivotal. Despite significant funding and research, progress on Alzheimer’s has been limited, possibly due to insufficient understanding of its underlying causes. If immune triggers contribute to Alzheimer’s and other dementias, we may uncover long-term health implications linked to infections.

Nita Jain: Your discussion on genomics is intriguing, especially regarding how the presence of the APOE4 mutation combined with specific infections can inform Alzheimer’s risk. What other genetic insights could enhance healthcare decision-making?

Ryan Prior: One clear example is the MTHFR gene, which is associated with various chronic conditions and impacts the methylation cycle crucial for cellular energy production. Simple interventions, like B12 supplementation, can yield significant benefits for many patients. Small improvements can have a cumulative positive effect on health.

Nita Jain: Turning to the economic implications for long haulers, the U.S. lacks paid annual leave, which has led many individuals with chronic conditions to pursue entrepreneurship instead of traditional jobs. Your recent opinion piece highlighted that long COVID could account for a significant portion of the labor shortage in the U.S. What does an inclusive society look like in terms of supporting disabled individuals in the workforce?

Ryan Prior: With one in four people experiencing a disability, long COVID and chronic illness intersect with broader disability access issues. The Americans with Disabilities Act needs revisiting to address contemporary challenges. Many newly disabled individuals are long COVID patients, highlighting the urgent need for updated disability policies. Remote work options can significantly enhance participation for those with complex conditions.

Nita Jain: Absolutely! Flexibility in work hours is also crucial, as chronic illness often necessitates downtime for recovery. How can we ensure that labor policies support those with immune-related issues?

Ryan Prior: Rest is essential for individuals with post-viral conditions, and labor policies must reflect this need. Advocacy efforts aim to educate the Department of Labor about these requirements, encouraging guidelines that support affected individuals. Ultimately, prioritizing rest is fundamental.