- Messages
- 38
http://thoughtsaboutme.com/2013/10/03/spinning-around/
But what mainly piques my interest is the fact that the CAA quite obviously is assuming that the IOM contract will go forward despite the fact that the open expert letter is still in place. It is true that Dr. Bateman has, in her statement of yesterday, changed her support for the adoption of the CCC and her opposition to the IOM contract. But apparently, none of the other 34 signatories of the expert letter have followed suit. The letter is still in place and all the other experts are presumably still very much standing by it. One person changed her mind. One! It seems to be an overreaction of the CAA to go from that to “ok, we are done here.” A reaction that is not at all in the patients’ best interest!
Moreover, we have not heard from Secretary Sebelius yet in response to the open expert letter. Why assume that she will not be convinced by the overwhelmingly persuasive argument that it’s unreasonable to spend—in the case of a grossly underfunded disease—around $1 million on an IOM contract (that’s usually a ballpark estimate for IOM contracts) for the creation of a definition by non-experts for which there is no need since we have the expert-endorsed CCC readily available? The CAA is jumping the gun here and one can’t help but wonder if this is an attempt to demoralize patients and advocates and cause them to drop their support of their experts. If the CAA just repeats often enough that the IOM contract is a done deal, it will become a self-fulfilling prophecy because opposition will dwindle.
My plea to patients and advocates out there: Don’t fall for it! The open expert letter is the strongest tool we’ve had in years, maybe ever. Finally, our experts have come together and a majority agrees that the CCC should be adopted (and updated from time to time based on the latest findings) and that the IOM contract should be abandoned. Our experts need our support and gratitude now more than ever. Starting to think about which patient representative should be on the IOM committee is dangerous and exactly what the CAA wants us to do. It’s counter-productive. Instead, it is in our best interest that there be no IOM committee for the creation of a disease definition. Our energy needs to go into making sure of that
But most importantly, why the quest for so much power over the fate of ME patients in the hands of just two individuals, Suzanne Vernon and Fred Friedberg? With such concentration of power without any checks and balances, why would patients possibly be concerned? Without addressing any substantive concerns, the CAA’s statement is meaningless. It's spin.