Diagnostics & Disability Policy for Patients with Long COVID

By Nita Jain: For Complete Post, Click Here…

A couple months ago, I sat down to talk with journalist and author Ryan Prior about his book The Long Haul. We discussed long COVID, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), patient advocacy, and precision medicine. Here are a few highlights from our interview:

Nita Jain: In your book, you discuss medical gaslighting as a phenomenon whereby patient symptoms are dismissed as imaginary. How can we prevent this from happening to more patients? Does medical school education need to change? Do we need to include more information about the long term effects of SARS-CoV-2? Do we need to start teaching more about chronic fatigue syndrome and myalgic encephalomyelitis (CFS/ME)? How can we create a more inclusive society that acknowledges and validates patient symptoms?

Ryan Prior: When any person is feeling gaslit, it means that they have a lived experience and then some other authority in their lives tells them that’s not true. So it’s kind of like being systematically lied to. And being dismissed in their own experience, being told that what their five senses are telling them is not correct. When people are sick and that doesn’t appear on diagnostic tests, that can be an issue for doctors who have a certain bandwidth that they’re used to operating in.

They’re limited in their ability to use tools, and that’s where the roots of gaslighting occur because there’s not yet been a single biomarker or specific diagnostic test that is used to describe ME/CFS or long COVID, so it has to be diagnosed on symptoms. We can go into greater detail, but there’s no shortage of tests that do come back abnormal. I think that’s really important to say that people will have elevated titers for Epstein-Barr virus or herpes virus reactivations. They can have abnormal cortisol levels. They can have low natural killer cell function. They can have T-cell exhaustion. Many have mutations on the MTHFR gene, and we can go down the list of a lot of things.

And so that best first step is getting diagnostics right and being able to reckon with complexity. The second thing is that your doctor’s job is to prescribe medicine. And when they have not been told how to prescribe for this particular diagnosis, they’re powerless from a diagnostic standpoint. And then if they can’t use the levers that they’re used to using, that’s a problem. So it would be easier just to deny the problem exists in the first place than to have the more complex, time-consuming conversation with patients about how to manage the illness and certain drugs that may or may not work.

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