His case proved severe, and by 1988 12-year-old Ean was confined to a wheelchair and could no longer speak. Ean’s neurologist suggested the Proctors consult ME/CFS researcher Dr. Simon Wessely but were not told, according to Ean’s father, Robin Proctor, that Wessely was a psychiatrist.
Ean Proctor declined to be interviewed for this article. “We’re a small island,” Barbara Proctor explains. “He doesn’t want anything plastered in the papers again.” However, Ean gave me written authorization to publish some of his medical records, which his parents obtained legally during their court case. In a June 3, 1988, letter to a social worker about Ean [click on the blue type to view the letter], Wessely wrote, “I have absolutely no doubt that the primary problem was psychiatric. My initial impression was that Ean’s condition was a form of hysteria, in other words, his apparent illness was out of all proportion to the original cause.”
More than 20 years after Ean Proctor’s sectioning, Wessely remains a major player in ME/CFS research. Critics cite that as a longtime proponent of the disease as a psychological or biopsychosocial malady in which a person’s negative “illness beliefs” cause physical symptoms, Wessely was not the ideal person to supply the patients for the retroviral XMRV PLoS One study published in January that failed to yield any positives in 187 ME/CFS patients. An earlier Science study conducted by U.S. researchers found the newly discovered retrovirus in 67 percent of 101 patients, and more sophisticated testing later showed that 98 percent of patients were infected. (Read “Blood Feud” Part 1 and Part 2 for more information on these studies.)
Coming up: An examination of ART (anti-retroviral therapy) in the treatment of HIV and ME/CFS.