Bluesky Blowup

How the ME/CFS patient community is reading Invisible Illness

I’m really grateful to have had this space to think through the multiple genres of writing about the varied experiences of Invisible Illness. Deeply historical accounts. Extraordinary memoir. Thoughtful ethnography. Rigorous science. Expressive journalism. Working through these multiple lineages of thinking to develop a deeply historical and anthropological analysis that is both readable and interesting to a wide audience was an enormous task.

Photo by Florian Klauer on Unsplash

It’s tricky to tackle multiple ways in which illness is expressed and explained in one book. I intended to write a book on Long Covid; however, several publishers said they couldn’t publish a book on Long Covid. Through this feedback and my deeper reading and 150 expansive interviews (as well as hundreds of informal interviews, conferences, and workshops), I realized that Long Covid is not an anomaly. Rather, it’s part of a longer story of how people with complex chronic conditions have long been dismissed, misunderstood, and harmed in medicine, society, and politics.

Importantly, I see the many illness categories described in the book to be overlapping. Many people with a primary diagnosis differ in meaningful ways from people with the same primary diagnosis. However, they may share an illness experience with someone who had a different primary diagnosis entirely. However, how health conditions are named, categorized, and treated become much more contentious that the symptoms themselves. This is in part why I separated the sections into “history” and “politics”. While these conditions are interwoven through history, the politics are deeply divided and this is an important point.

Overall I’ve received wonderful feedback from colleagues, patients, clinicians, and policymakers. However, there has also been a small outcry from the ME/CFS patient community. Let me explain.

A few days ago on Bluesky, an excerpt from chapter 1 was published in The Sick Times. Nobody commented on that excerpt. However, a patient advocate, from what I see in reviewing their profile is deeply committed to the patient advocacy movement, started a conversation about parts of the book they found to be harmful. I was shocked: not that there were critiques of the book (I love critique!) but rather I was surprised by what their critiques were. They argued that in the book I was 1) psychologizing the condition; 2) suggesting FND doctors should treat the condition; and 3) arguing for the GET/CBT framework (a hotly contested and debunked treatment for patients with ME/CFS). These are the snippets that I found on social media that were surprising because they were exactly points that I was arguing against.

Let me be clear: I take great care to argue against psychologizing the condition, which is why I drew heavily on scholars such as Elizabeth Wilson and Elizabeth Barnes and scientists like Mike VanElzakker (see others posts here, here and here). In fact, amplifying the critical biological aspects of complex chronic conditions was a central project of the book. In no way are these conditions “all in your head” and I argue that taking seriously the biology of these illnesses is critical. I have made a similar argument several times on this blog, such as “Believe Me” and “When care harms.”

I also noticed that someone suggested I attribute these conditions to “trauma” and that in doing so caused harm. I do argue that trauma is part of the story; I argue that microbiomes are complicated and that many stressors (viruses, bacteria, trauma, toxins, foods, and so on) can cause the body to dysregulate. On the one hand, I have very clearly argued (in this book as well as Syndemic Suffering and Rethinking Diabetes) that that past social trauma or recurrent distress (like financial stress) become realized in psychophysiological processes that cause physical dysregulation, making living with a chronic illness harder. There are real psychophysiological processes linking depression and diabetes, for example. In Invisible Ilness, I cite Robert Sapolsky’s descriptions of such processes in Why Zebra’s Don’t Get Ulcers. At the same time, having a chronic illness can cause emotional distress, which can often lead to anxiety and depression. These are common experiences I have found studying chronic illness for two decades around the world. This in no way means I think complex chronic conditions are psychological. In contrast, I argue the mind and body are deeply integrated and it’s impossible to think about one without the other.

I also describe multiple times how harmful a “depression” diagnosis can be for patients living with a complex chronic condition when their physical dysregulation has an infectious origin. These dismissive diagnoses can cause many people to experience frustration, distress, and, at times, fatalism. Here is a story (which is in the book in shorter form) that shows how a woman overcame such dismissal and got a POTS diagnosis and learned how to advocate for what she needs.

What I found shocking was the comment that I argued that a FND doctor should treat ME/CFS. At first, I was deeply concerned and unsure why the book would be read this way. For instance, I argue several times that writing FND in one’s medical chart can be very harmful when someone has an infection-associated chronic condition because it may prevent clinicians from taking a patient seriously or partnering to dig deeper and find diagnoses or treatments that help someone get better. I also talk about this here. I have also published with my colleagues, including two patient-scholars, that patients must be knowledge partners when living with a health condition like ME/CFS.

I do think there is possibly a misunderstanding in the title. I chose the title A History, From Hysteria to Long Covid to emphasize that this is a living history: imperatively linking the misogyny of the past with ongoing experiences people face today. These living histories are harmful for women—something that was repeated on so many occasions throughout my interviews and one of the most devastating findings. It’s a central point of the book.

Having had IBS for many years, I have experienced this first-hand. In fact, I was just discussing it last night with a friend. I had IBS for more than a decade and worked with my therapist to manage it—I even saw a hypnotherapist for a clinical trial at Northwestern University to get it under control. However, it got even worse when I was living in India for a year. For two months I had what many people call the “Delhi Belly”, which was intensive diarrhea and chronic pain. As a result, I went through an intense treatment of antibiotics. This was the first time my IBS went away and I did not have more pain for 14 years. It was only last spring when my IBS came back. I had many tests and my gastroenterologist was scratching his head. I told him the story about Delhi and we decided to do a Cibo test. It was off the charts and he prescribed me Cibo treatment. Since treatment, my IBS has disappeared again. While nobody’s illness is the same, this is another case and point that some conditions perceived “psychological” may be linked to infections.

Finally, possibly the most explosive was my discussion of the PACE Trials. Let me back this up by explaining how I came to write this chapter. I was struck by the divergence in narratives around the CFS origin story and the contention around treatments coming out of neurology and psychiatry. As an anthropologist, I found the construction of the CFS diagnosis to be culturally fascinating, personally shocking, and deeply harmful. However, equally surprising were the PACE Trials and the harm that so many people I spoke to described the politics around the PACE Trials brought into their lives. In fact, one woman I spoke to wouldn’t give me her real name because she said she was frightened the CDC would retaliate against her truth-telling. I found this story crucial to tell in the book and took it very seriously. Along the way, I interviewed dozens of patients with ME/CFS, including some famous activists involved in Solve ME, #MEAction, and other organizations. I also interviewed David Tuller, who I cite when I talk about the PACE Trials, and we went back and forth several times to get it right.

At the same time, I found that this cultural history was largely absent from the anthropological discourse and I wanted to publish a piece of it in an academic journal so that academics might engage in this history intellectually. The article I put together wove together the origins of the CFS diagnostic with the medical misogyny of the PACE Trials that I describe in chapter 2 of Invisible Illness and described how the PACE Trials were debunked. I very clearly called out Simon Wessely in the article.

The article was submitted and a lovely (but very junior) editor handled the article and sent it to Wessely himself. I received a 17 page retort from him where he self-identified himself as the reviewer. I must note that I never personally reached out to him in part because he was such a contentious actor throughout my patient interviews and I felt he had very extensively published his viewpoints in his own words already. However, I did interview some of his close colleagues and friends. Much of what I cited about him was based on his own words and things written about what happened in the 1990s and early 2000s. Some of the critiques, however, we from extensive discussions with ME activists.

While one reviewer loved the piece and suggested publication, the other one (Wessely) did not. He demanded it be rejected and threatened to sue the journal for defamation. Instead, the journal said I could address his comments and they would not send the article back to him (although, they’d already been in contact with their legal department). I found his feedback very interesting in part because he wrote so freely, emotionally, and extensively. I spent a great deal of time responding to his 17 page critique and very thoughtfully addressed his comments. In my revised draft, I added more of Tuller’s critiques of the PACE Trials themselves (that were in the book but not the journal article), while also managing his perspective about what the PACE Trial researchers found, revised, and did in a way that I found was appropriate.

Unfortunately, a new editor sent it back to Wessely. While a separate new reviewer argued that his response to the first draft was itself an interesting cultural artifact in itself, and provided constructive criticism for final edits, Wessely got even more upset. It was at that point that I spoke with my lawyer, publisher, and trusted colleagues and decided to withdraw the article from the journal. I think the journal editors had been concerned about the threats and were relieved I pulled it. However, at the same time, this was moments before the book went to press. I felt threatened and concerned that the book would be compromised so, after discussion with my editor, I pulled my most pointed critiques of his research as well as the media around the PACE Trials from the book. I still do feel the book provides an important story, and that the PACE Trials are well represented, even though my most pointed critiques were removed.

I have to say that before any of this happened, I was very cautious about my engagements. I even withdrew my participation as an invited contributor to a series of papers about emotional determinants of health for The Lancet after I discovered this figure was a commissioner. They had asked me to write a section on complex chronic conditions and I have traveled to a two day meeting about the text. However, I did not feel it would be appropriate for me to write this part of the series when he was associated with the publication. I had a private meeting with the main editor and said I could not in good conscience write about this topic under his leadership and said I could not write for the commission unless he was removed. They refused, and so I quietly withdrew from the writing team. At the same time, I was sad to have to turn that project down. In fact, I felt I let down some trusted colleagues in doing so, even though I felt this was the right move to make.

It’s impossible get everything right. However, I’ve been wanting to share this story about what happened in the days before publication and my writing on the PACE Trials. I wasn’t really sure how to write about it, but these readers brought out this story. Understanding the history of why and how such health conditions are framed and discussed is critical and I’m glad I’m able to talk about this difficult decision here.

I am very committed to dialogue as long as it is respectful, the critics have read the book, and we can agree that we are all working toward improving an imperfect medical system that needs a massive overhaul in culture, training, and financing.