The latest post at OccupyCFS (http://www.occupycfs.com/2014/01/06/behind-closed-doors/) is a must read.
Ms. Spotila has found some very important information about the NIH project on research definition for ME and it is Not Good News!
“There’s an important meeting happening at NIH today and tomorrow, but you probably know nothing about it. The secrecy of this meeting is intentional, and the implications of decisions made at the meeting are as far-reaching as the Institute of Medicine study. In fact, what I’ve learned about the meeting may strike you as worse than the IOM study process. ….
……. advocates must demand more information about the P2P Workshop, and must demand meaningful opportunities to participate. The planning and execution of the Workshop should be transparent if it is to have any legitimacy in the advocacy community. ….. – ask questions, provide input, and present a united front based on the truths we know about ME/CFS. We cannot wait until the end of the P2P process to make our voices heard, especially since this process will provide input into the IOM study.”
read the full post here: http://www.occupycfs.com/2014/01/06/behind-closed-doors/
Many thanks to Ms. Spotila for getting and sharing this information with us!