In the spring of 1987, Simon and Schuster hired me to conduct a series of interviews with Gilda Radner, who was then suffering from ovarian cancer and had a book contract to write about her experience. In theory, my task was to draw her out and help her organize her thoughts. There were several writers vying for the job and the choice was Gilda's to make; Gilda and I bonded immediately when we began talking about our lives as sufferers of M.E.
The 12th Biennial IACFS conference was held in Ft. Lauderdale October 27-30. Florida betrayed its rep as the Sunshine State for the duration. Hurricane season had passed yet mid-coast Florida seemed to be throwing a tantrum anyway. An unbroken gale from the Atlantic threatened to knock over anyone who failed to lean into it. For at least five days a deluge seemed imminent even if not a drop of rain fell.
Separated from the ocean by a coastal road, the Westin hotel had its own micro-climate, less tempestuous than the wind-pummeled beaches, but a pressurized environment nonetheless in which for some, at least, a tormented history hovered over an uncertain present.
To those who have been following the Edward Shorter flap at the National Institutes of Health, which centers around an invitation to author and professor Edward Shorter to lecture scientists at NIH, it might be of interest that Shorter says he doesn’t “remember who made the invitation” to him to speak and that he “doesn’t know Brian Wallitt.” Arcane sounding information on its own, assuredly, but if you’ve been attentive to the saga, you probably already know this controversial lecture featured one of the most widely-published disease-deniers aside from Simon Wessely and was delivered to NIH scientists who claim to be in learning-mode on the history and science of M.E.—as well as poised to conduct a clinical trial of moderately afflicted M.E. patients. For many M.E. sufferers, the notion was next-to-intolerable and came like yet another tone-deaf and insulting blow to VSPs (very sick people) who have watched the NIH alternately ignore and belittle M.E. sufferers for decades.
Just when M.E. patients were beginning to take seriously the NIH’s newly professed interest in understanding and resolving the disease, someone at the agency invites a character from the past whose contempt for M.E. sufferers is boundless to lecture the very scientists charged with studying it. Below: an attempt to sleuth the source of the invitation.
She is the tall, unassuming scientist whose polished delivery style sets her apart. She's also one of the hardest working and perhaps least well-known scientists in the M.E. field. She is now the director of a new M.E. research center in New York, the Cornell ENID Center. How it all came about is a tale of love, patience and persistence.