Sooner or Later, We’ll All Belong to the Kingdom of the Sick (Interview with Meghan O'Rourke, author of The Invisible Kingdom)

CC: In The Invisible Kingdom, you write that if every age has its “signature disease,” ours is the type of chronic illness that tends to go unrecognized in tests and is often viewed with skepticism by the medical establishment. This includes post-treatment Lyme disease syndrome, which you were eventually diagnosed with, autoimmune disorder, dysautonomia, and fibromyalgia. It occurred to me that you must have been in the middle of working on this book when the pandemic hit. What role does/did long COVID have in the “Invisible Kingdom” of the ill generally, and in your writing process more specifically?


MOR: The book was almost done when the pandemic began. In January 2020, I was already speaking with immunologists and virologists around the world about chronic illness, and because of those conversations, I was one of those people who quite early on was saying, “The pandemic is coming.” I was the Cassandra in my friend group.

Beginning in early June 2020, I started to report on people who were saying they’d gotten sick in March and still weren’t better. I had to hit pause on The Invisible Kingdom and think, how am I going to rewrite this book? I didn’t want to just stick in a mention of the pandemic. I wanted to integrate it into the book, because Long Covid made the things I was trying to explain in The Invisible Kingdom all the more urgent. By that I mean our siloed health care system; medicine’s resistance to crediting the testimony of patients with so-called “vague” symptoms; and the kinds of overly tidy containers it likes to put disease into.

In fact, before the pandemic, I had been reporting on this emerging paradigm of disease that now is familiar to many of us: the notion that infectious pathogens and organisms don’t all behave the same way in our bodies, as the 19th-century advent of the germ theory had suggested. Germ theory postulated that viruses and bacteria behave very similarly in different people, giving us this model that either you recover or you die from an illness. But as it turns out, some pathogens can trigger long-term illness in a subset of people for reasons we don’t fully understand.

Conditions like autoimmune disease, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and post-treatment Lyme disease syndrome can be affected by, or are thought to be triggered by, an infection that doesn’t resolve for some reason—whether because the pathogen is still there, or because the immune system has been kicked into overdrive, or because damage has been done to the body that we don’t understand.

One of the central questions in my book is, why is it so hard for people with these kinds of diseases to get a diagnosis? One of the answers I came to was that this paradigm of heterogeneous response to infection isn’t fully understood, and we haven’t availed ourselves of the tools to diagnose, treat, and help support these patients. What’s more, basic medical tests don’t always turn up problems in these patients. And modern medicine loves to measure; what it can’t measure, it doubts.

The rest: https://electricliterature.com/megh...-invisible-kingdom-reimaging-chronic-illness/

 

Beyond her book, she has a bunch of salient essays in good journals like the Atlantic.

In what is an important consideration for me, she seems nice, too. I sent her a pedantic and likely condescending email a while back and she responded with grace.

 

I don't know how long appointments are elsewhere, but the approx 10 minutes in the UK plus brain fog in patients are two of the reasons why it's so hard to be diagnosed.

 

Yes, we still have no reliable test for actual fatigue, or even a clear definition of what fatigue is, so asking a patient "Do you feel fatigued?" doesn't help much in diagnosing a disorder. The same holds true for a lot of symptoms. "I don't feel well and I can't think clearly." is not going to lead directly to a prescription, especially not in a 10 minute visit with a doctor.

Don't lose track of the many useful improvements in our medical systems. There are many life-crippling or even life-threatening diseases that now can be diagnosed and treated. I'm sure ME will be in that category someday, but it will take more time and effort (and funding!).

 

Investigating fatigue has little relevance to ME and has held research back for almost 40years. It is nebulous and ubiquitous and of no more significance in ME than any other disease. If anything, we should have been looking at energy production and usage.

Looking for long term problems from infection could have been the most productive for us and the world. Even if some cases of ME are not post infectious finding what happens in those who did become ill after an infection would have led to results there as well.