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 Illnessand 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.
