I think I must have missed where Phoenix Rising polled it's members and determined a Phoenix Rising position statement on the IOM contract. If individuals are opposed to it then say so by all means, but let's not start saying 'we' are all opposed to it, when not everyone is aware of what has been taking place. I think as a source of information for patients concerns - generally - we might do no better than refer the panel to the FDA Voice of the Patient (if that was it's name - I forget). The CCC is all ready a document that they said they will review - but I would like to see something said along similar lines to Tania above - as I feel the CCC is probably the most reasonable definition available - BUT - for ME/CFS i.e. as a replacement for Fukuda and CFS. I would like to say that I see no reason given the current state of knowledge, why we need a different and broader clinical criteria than a research one. So for me - it is CCC for clinical AND for research (although for research I suspect they will need continue to also use Fukuda but along with CCC). I would also like to see a change of name across the board for all who meet the CCC criteria - to Myalgic Encephalopathy - I would like this review to conclude that CFS should be dropped. I don't regard CF to be relevant in any way to anyone who meets the CCC and if they can't meet the CCC well then I am sorry but they don't have the disease - at least as far as can be said given the current state of knowledge. What I think I need to come up with - we need to come up with - is specific examples of things to cite as sources of evidence and I am not sure that anything really has been published that supports a name-change other than to Myalgic Encephalomyelitis which was opposed in previous reviews. Of course it might not be this time round - might be worth trying again - but I think Encephalopathy is a worthwhile compromise that might stand a better chance of seeing the removal of CFS. I think some greater recognition of the severities is in order and the different levels of ability to function, impact of disability, would be worth a mention - but again I am confused by the question to which we are being asked to reply. These are of course my views - if I can find and have time to find any specific sources and can add more things that I would like to see presented I'll add another comment or two.