Diagnostics & Disability Policy for Patients with Long COVID
A conversation with journalist Ryan Prior
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.
Nita Jain: You mention how myalgic encephalomyelitis and long COVID can both begin in the aftermath of a viral infection. ME can often start after Epstein-Barr infection, and similar syndromes have been observed after the SARS and MERS pandemics as well. Long COVID and ME seem to share a lot of overlapping features in terms of reduced blood flow to the brain, GI dysbiosis, mutated mitochondrial DNA, impaired immune cell activity that you had alluded to earlier. In your book, you discuss the overlap of long COVID with conditions like POTS, which is a form of dysautonomia, and mast cell activation syndrome (MCAS). How close do you think we are to a theory of everything that encompasses these related conditions? And how can we accelerate the pace of research in this area?
Ryan Prior: There’s a chapter later in the book that refers to this as a theory of everything. I think we’re knocking on the door of this new hypothesis about this large swath of human biology that’s covered in this piecemeal fashion and these diseases — mass cell activation syndrome, POTS, Ehlers-Danlos syndrome, myalgic encephalomyelitis, chronic Lyme, fibromyalgia, long COVID, the conditions of dysautonomia, gut dysbiosis, and many more — are part of this complex chronic community.
And so there needs to be an overall systematic approach to treating all of them because I think that they’re all versions of each other, that they’re all — in the words of Dr. Amy Proal — immune-associated chronic diseases.
Nita Jain: I like that you talk about the potential pitfalls of specialization because I do think complexity is something that’s inherent to all disease, not just those that are implicated as having an infection associated with them. To paraphrase John Donne, no man is an island, but neither is any organ, tissue, or cell. All parts of the body are in constant communication with one another and there’s a lot of crosstalk between systems as well.
But how often do you have a neurologist consulting with a GI doctor about their patient’s migraines or memory problems? That doesn’t happen very often. So these pockets of specialties sometimes do more harm than good because we’re not paying attention to the crosstalk that’s happening between systems. And to negate that is leading to a lot of blind spots.
You briefly touched on the infectious origins of Alzheimer’s, and how that ties into the increased risk of dementia observed after COVID. How might solving long COVID also shine light on other conditions? All diseases have a certain degree of complexity, and looking at a more holistic view of the etiology could be helpful, not just for things like long COVID and ME, but also things like diabetes, Alzheimer’s disease, common conditions that place a very high burden on the healthcare system in America.
Ryan Prior: Yeah, there’s a key part of this is just this our overarching idea of infection theory. So I think Alzheimer’s is a good example of a disease that despite huge amounts of funding and huge amounts of research, there has not been huge amounts of progress, and that could be because of not being able to fully understand the roots of it. If Alzheimer’s or the various forms of dementia have various immune triggers, there could be a decades-long link there about how that led to development of a longer term illness.
Nita Jain: I love the idea of genomics making it to clinical prime time because in your book you talk about how Alzheimer’s risk is better predicted by two factors in conjunction than either alone, that being the presence of an APOE4 gene mutation as well as an infection that crosses the blood-brain barrier. What are some other examples where having that genetic information could really inform healthcare decisions?
Ryan Prior: One easy one off the top of my head is the MTHFR gene present in a number of chronic illnesses, which is a piece of the methylation cycle, so ways in which cells create energy. Supplementing with B12 or methylated B12 is one way to get around it. And low-hanging fruit in the form of an over-the-counter supplement that could be accessed in any corner drugstore can have a pretty significant benefit in a good number of chronic illness patients. When you’re looking for ways to improve your health, 10 percent, 15 percent, 20 percent, you wanna have some small wins along the way.
Nita Jain: I want to take a minute to talk about economic prospects for long haulers. The United States is just one of a handful of countries that doesn’t have any paid annual leave. And I’ve personally observed a lot of spoonies turn towards entrepreneurship as a way to cope with the fact that standard 9-to-5 jobs don’t really accommodate their specific health needs.
A month ago, you published an opinion piece in The Guardian along with Fiona Lowenstein, founder of the Body Politic, about how long COVID could be responsible for up to one third of the current labor shortage in the US. You conclude, “Fixing the labor shortage means treating, accommodating, and mitigating long COVID. It requires building a society in which disabled people can participate.” What does an inclusive society look like? And how do we ensure that disabled and chronically sick people are able to participate in our economy?
Ryan Prior: 1 in 4 people has a disability. So, chronic illness, long COVID all reports up on this larger disability access question. And there’s real strength in numbers here. The Americans with Disabilities Act was passed in 1990, and there needs to be a second. People think about disability, but they’re thinking about wheelchair ramps and curbs, but there are other areas where disability protections can save lives by giving access to Medicaid and making accommodations.
The largest number of newly disabled people in our generation are COVID long haulers. So long COVID or complex chronic illness is the biggest category of where disability policy needs to be updated. The most basic thing I’ll say is that people with complex or intermittent disabilities with brain fog and fatigue benefit from being able to work remotely. If they waste all their energy getting to the office, don’t make them go to the office. Also, they’re probably immunocompromised. Don’t make them go to the office. You’re going to increase disabled workforce participation in conjunction with cases where remote work is available. And there was an increase in disabled workforce participation in 2020 because that was the greatest amount of remote work options also being available.
Nita Jain: Absolutely. And not only remote work but having flexible hours because with a lot of chronic illness, you sometimes need some time to recharge in the middle of the day because of fatigue or flareups or brain fog interfering. So I think being able to set your own hours is also really important for people who are dealing with complex immune related issues.
Ryan Prior: Rest is the most helpful prescription for people with post-viral conditions, so we need labor policies to reflect the need to rest. It’s really that simple. A lot of our advocacy through the Century Foundation is just helping explain that to the Department of Labor. And we hope we’ll be further empowered to issue guidelines for employers and schools and universities to advocate for people with these conditions. But rest is the basic principle.
