Peter White and the PACE investigators’ crude, personal, and unprofessional response to my request for data was reflexive. They are accustomed to receiving those requests from patients in a culture where patients should be seen and not heard. They were responding as if I was somehow below them in the hierarchy in which their views should be uncritically accepted with all the deference that colonialists are due. How vexatious of me to challenge the interpretations of their data that they were putting forth…
Once I was cast among the patients, I was subject to the usual smearing and collective punishment for real and imaginary hostile actions of a few patients in a familiar narrative crafted by Simon Wessley’s Science Media Centre . Although I
have a stronger publication record than any of the PACE investigators, concerns were raised about releasing data to those who are incapable of analyzing it.
Over time, I’ve gotten to know some of the individuals who have previously requested data, although I have never met them. They impress me as amply qualified to analyze data, and they often analyze data that I report in my blogs, with them asking for no credit. Many of them have been academics or have had other professional achievements. Others were progressing well along in their educational pathways before they were struck by their illness. Still others become citizen-scientists with the capacity to publish peer reviewed letters to the editor as a result of struggling to deal with their misunderstood medical condition.
There is something ugly, pernicious going on here, more fundamental than the question of data sharing. Being a patient with chronic fatigue syndrome/ myalgic encephalomyelitis is what sociologists like Erving Goffman would call a
spoiled identity . Being a patient means being stripped of all other significant social identities and being reduced to a common denominator, stigmatized role.
