Scientists who should be on SEP, and other committees that decide the fate of ME/CFS patients

Mindy Kitei said...:

Anonymous,

Scientists who ME/CFS patients might want on SEP, and other committees that decide the fate of ME/CFS patients, include: Leonard Jason, Ila Singh, Anthony Komaroff, Daniel Peterson, Paul Cheney, Frank Ruscetti, David Bell, Susan Levine, Joseph Burrascano, Eric Klein, Judy Mikovits, Robert Silverman, Charles Lapp, Peter Rowe, Martin Lerner, David Streeten, Dharam Ablashi, Harvey Alter, Shyh-Ching Lo, David Strayer, Paul Levine, Robert Suhadolnik, Fred Friedberg, Donnica Moore, Lucinda Bateman, Kenny de Meirleir, Ellen Goudsmit, Byron Hyde, Sam Chow, Alan Light, Kathleen Light, Martin Pall, Rich van Konynenburg.

“Experts” ME/CFS don’t want include Deirdre Buchwald, John Coffin, Suzanne Vernon, Brigitte Huber, Jonathan Stoye, Peter Manu, Edward Shorter, Christine Heim, any psychiatrists/psychologists from England or Germany, any “scientists” from the CDC or Emory University.

As far as advocacy, clearly ME/CFS patients can't rely on their own CAA. But I believe patients congregating here and at Phoenix Rising (http://forums.aboutmecfs.org/index.php ) and ME/CFS Forums (http://www.mecfsforums.com/index.php ) can certainly do the job.