As of 11:09 Eastern this morning, the sole source contract notice for the IOM case definition was updated to read:
Because of all of the concern from the public surrounding this potential sole source requisition, we have decided to discontinue this request.
I have reached out to multiple sources to confirm whether the contract has been cancelled (or simply suspended), and to determine what happens next. I will keep you posted.
BUT it is very very important that we continue our email action! We need and want a strong, accurate clinical case definition for ME/CFS! This is essential for any of our other efforts to be successful. So tell HHS that we need an case definition process that is inclusive of the ME/CFS experts and stakeholders to solve this problem once and for all.
Please stay tuned for updates as we work with sources and experts to refine our message and find out what HHS plans to do next. I will share updates with you in real time. Keep emailing HHS. YOUR VOICES ARE BEING HEARD. Don’t stop now!!!!
Update, September 4, 2013, 5:20 pm: The contract page has been updated again. The new update reads:
This request has been cancelled. However, HHS will continue to explore mechanisms to accomplish this work.
Honestly, I don’t even know how to interpret this. I have renewed my inquiries to get clarification. It seems to me that if HHS is determined to “continue to explore mechanisms,” then we should continue to offer our input into those mechanisms. Keep emailing. I’m hoping we’ll have further clarity from HHS tomorrow, as well as updates from the advocates working on this issue in DC.