I took a lot of notes but won't post them all as I don't have the energy or quite enough memory (ha, ha). But I will say I was very encouraged by the changes they agreed on today and what they will be sending to the P2P. To my mind they were not pulling any punches. Their document will certainly be respectful but it began by recommending that ME be distinguised from CFS and that the CCC be universally adopted until such time as updated criteria are accepted. They want Oxford to be retired and Oxford based studies not to be used to inform treatment recommendations. They want the ME/CFS community (they went back to using the designation ME/CFS as it was the nomenclature in the draft report, even though they had recommended separating these two entities) to be able to review the recommendations of IOM before any new clinical definition is decided upon, and after this, the research definition too.
Donna Nelson did a great job, I thought, in managing this conference. She did at some points, however, seem doubtful and leaning towards withdrawing language and ideas which she believed the P2P would not use, but the group strongly over-rode these doubts by saying that they want to be on record with what they understand about this illness and what they really do recommend--even if P2P does ignore them.
Barbara James got permission to extend the time so that important final business could be completed.
I heard a lot of participation and influence from Maryann Fletcher, Jose Montoya, Susan Levine and Gary Kaplan.
My one question to anyone here is, where was Dr. Unger? She was listed at the outset as a member of the Non-working group, which also included Jose Montoya who spoke a lot, but I never heard her so assume she was one of the people absent, at least from this part of the process of hashing out changes.
