Let me answer my own rhetorical question. Does NIH want peace? Well, judging by the way HHS/NIH fought Jeanette Burmeister's FOIA request, the obvious answer is No.
I respect Bob Miller, his advocacy efforts, his personal suffering, and his intelligence. But, in this case, I think he is being naive. The HHS says they will take into account our input. I DON'T BELIEVE THE HHS. We need to strongly call out the HHS on their misdeeds related to their attempt to redefine our illness, going against the experts recommending CCC, and using a ridiculously faulty approach of non-expert clinicians and a biased AHRQ report to define our illness.
As far as "shaking" the stigma, I say that's not gonna cut it. We need to "destroy" the stigma.
Edited to Add: I think I made a mistake yesterday on this post in calling Bob's approach naive. He is one of our most devoted patient-advocates (hunger strikes, skydives, and many other huge efforts), and he deserves more respect than that. I honestly don't know enough about his approach to call it naive, and I would actually like to hear more about his strategy in his own words on this thread, or to be pointed to somewhere I can learn more from him. I sense that he is calling for as many advocates as possible to speak up and have a say. I'm just not sure HHS is going to care, and I worry they will find a way to use it against us, but it doesn't mean we shouldn't have our say. I appreciate Bob's participation in the CFSAC meeting, I'm sure at a personal cost of his health.
He made a call for patients/advocates to attend the P2P workshop next week so that their voice can be heard (I think he said we should try to make public comments). I agree that many patients should attend, but I personally think it would be better if some are inside listening/commenting, and many more are outside protesting.
Thank you, Bob, for your advocacy efforts. The more we all pitch in and do something, the more awareness will reach the public, the sooner we find answers.
