Anatomy of a Missed Opportunity, Part Two
A 1996 interview in the New York Native with U.S. House democrat Jerrold Nadler...If this interview doesn't get your blood boiling, nothing will. It's a great accompaniment to my recent interview with long-time ME advocate Eileen Holderman, who talks about her approach to advocacy and what might best be done to fix the most serious problems faced by people with ME. She suggested the best approach would be to find a hero in Congress, admitting nevertheless that efforts to do so over the years had been unsuccessful despite intensive lobbying. Twenty-two years ago, however, Congressman Jerrold Nadler offered his help, suggesting to patients how to best approach Congress and how to move the struggle for recognition and worthy science forward. Nadler ultimately got his investigations, but his idea to write legislation to force CDC to investigate specific aspects of ME, such as whether it was transmissible, went nowhere.
Anatomy of a Missed Opportunity, Part One
A failure of ME advocacy has been its occasional inabililty to take advantage of major opportunities to publicize the disease and the government's negilgence surrounding the disease. Being able to identify these moments and make the most of them is critical. My conversation with Eileen Holderman reminded me of events that took place when my book Osler's Web was published and the highly organized attack against it levied by the patient organization of the era, the CFIDS Association of America or CAA, and--at the request of CAA leadership--the IACFS, then called the AACFS. This episode was investigated and described in some detail by the New York Native journalist Neenyah Ostrom. The hypocrisy of both the CAA and IACFS efforts is fairly evident in Ostrom's account. Herewith, the anatomy of a missed opportunity in 1996 to counter the government's line that ME was a psychiatric disease of hysterical women. It's a little-known chapter in ME history that demonstrates how organizations purporting to represent people with ME can harm them with carefully orchestrated campaigns that escape scrutiny. Fortunately, the Native was paying attention.