I don't know what comes next as far as the I.O.M. and the HHS. I tried to ask these questions during the Q&A for the Press/Public Briefing. However, my questions hung out in a "moderation" mode for over 10 minutes and then the briefing ended early because they said there were no other questions to be answered.
I yelled out at my computer - "I have questions - many questions!" I learned later that I was not alone in not having the questions I submitted being asked at the Briefing. Very strange because it appeared that receipt of my questions was acknowledged, as I received a message on my computer screen stating that my questions were waiting for moderation. I and others thought we followed the rules for submitting questions, but due to some type of technical glitch (or some other issue) our voices were silenced.
Seems like this has happened to me a lot when trying to participate in one of the HHS's "Hoedowns".
I followed up with the I.O.M. by phone to tell them of the glitch with the Q&A session. No one seemed to be available to answer my call, so I left a message with my concerns/questions, along with my contact information. So far, I have not received a return call or e-mail communication from the I.O.M. :thumbdown:
I will call again on Tuesday (and also send an e-mail) just to make sure that my questions reach their destination.
The I.O.M. will still be under contract with the HHS for this project through March 22, 2015. Per information provided by I.O.M. staff, comments submitted to the Committee will be accepted through the end of the contract period. I am not sure if the comments received after the Report was complete will be read by anyone on the Committee or if these comments will just become part of the Public Record for this project.
I am also trying to obtain answers from the HHS to the following questions:
1) What is the process that will be used (or has already been used) to adopt or reject the Report and any of its recommendations?
2) Who has the authority within the HHS to approve or reject the Report and its recommendations? If the HHS does not have this authority who does?
3) Will the I.O.M. Committee be developing guidelines for clinical diagnosis for this illness under its original contract or has or will a new contract(s) be entered into for this project?
4) Will an opportunity be provided for ME/CFS patients, supporters and other interested parties to meet publicly or privately with the HHS to discuss any concerns they may have with the Report and its recommendations, prior to the approval or rejection of the Report or any of its recommendations?
5) How and when will the HHS announce to the Public that the Report and its recommendations have been approved or rejected?
6) How will the HHS announce to the Public what steps it will take to implement the recommendations that it has approved from the Report?
7) Did the HHS (or one of the other "funders" for this contract) specifically ask the I.O.M. Committee to recommend a new name for this illness, if they should make a recommendation that the name of this illness be changed? Or was the I.O.M. Committee only asked for a recommendation as to whether or not a name change for this illness should be considered? If a specific request was made to the Committee for a recommendation for a new name for this illness, where in the contract or statement of work or other document was this request made?
8) Was the I.O.M. Committee required to arrive at a unanimous decision about the recommendations in the Report or could the Report have been issued with dissenting opinions?
9) Does the I.O.M. Committee have the ability to substantively amend its Report, prior to the end of the contract period?
So many questions, but will there be so many answers? I am not sure if my questions will be answered or ignored or will disappear due to a technical glitch? Fortunately or unfortunately, it really bugs me to have things left hanging. Even if I may be a little slow
to get to the starting line, I will keep trying to illicit answers to these questions and let you know how things work out.