I couldn't disagree more. Bullshit (exaggerated shock, fear and controversy) just turns people off. The problem with your message is that you are demanding action without truly expressing why (especially in terms of needs and feelings) and in turn others are confused as whether they should participate or not. You are telling everyone that we should fear the IOM. Why? Those who made this decision are just going to ignore you unless you state how you feel and why. For example frustration that we were not given what we asked for at the CFSAC meeting for example. Or perhaps a feeling of disempowerment as we (patients) want true involvement, not another demeaning name and case definition dictated from above. I would suggest opening up a dialogue with them, ask them why is this time going to be any different when the same patterns are being followed as the CDC definitions in the past? I think we need them to explain how they are going to avoid repeating the mistakes made in the past. You will note that this is quite different from fear and telling them that they must cease at all costs, just because we fear the outcome.