Sorry everyone for the previous post. The response is understandable. The idea was obviously poorly expressed. To clarify: If the IOM report comes out to have a negative outcome, as in a definition that distorts the definition of the disease to something worse than the CCC or ICC, the timing of the film would then make it possible for the film to work as a *major PR counterattack against the IOM report.* The documentary is framed around the CCC definition, with PEM and CPET being featured as early as possible in the narrative. Both co-directors of Forgotten Plague signed the letter opposing the IOM project, in collaboration with advocates from across the world. If, and of course this is a very big if, the IOM report recommends adopting the CCC or, dare we say it, the ICC, then that brings up a different set of decisions to make for everyone. We apologize for that assumption in the original post not being fully spelled out. It also goes without saying that the patient community funded the film, the patient community is the lifeblood of it, and weve worked long hours for the past year fueled by the well wishes of supporters and the knowledge that we were working in the service of improving human dignity and promoting access to adequate care for everyone. Patients are priority #1 and we listen very closely to all the comments on this page. Much love to all.
Posted on: Thu, 18 Dec 2014 05:40:19 +0000
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