I read some place that patients are contacting the experts and encouraging them to attend. I think this is not something we should not encourage. They will be walking into situation that is under the control of the same people who shafted the gulf war syndrome patients. Now, some say the IOM has seen the errors of its ways, and is committed to including more expert and more patient input. This will make no difference as long as the same people are running the show. Unless their level of critical thinking and willingness to research has improved, it will make little difference. And where it the evidence of that. So now, what about all this evidence based decision making they are going to do. Sounds good, doesn't it. Sound real professional and scientific. But what evidence are they going to base this on. Maybe the always popular Oxford Criteria studies, which ignore the syndrome and research only fatigue. Or maybe it will be based on the Fukuda criteria studies, which just happen to leave out post- exertion issues. Or maybe they will use the Reeves definition research, which stacked the deck by using a fatigue-centric selection model. The whole idea of getting the CCC into place was so that by using it we would eventually have enough focused research to make better decisions. Building a new definition on the body of existing research overlooks this. So why will this be problem if the IOM meeting has a bunch of real experts in it. Well, take a look at what happened to the recent CFSAC meeting, who had real experts in it. They called for a workshop of experts and stakeholders. And HHS took this, reinterpreted its meaning, and presents the IOM project as if it's what was asked for. It is not what was asked for, and plenty of people have let them know this. But does that stop them?? No. This is the reason I support the experts in not participating. Thoughts?