I think people are just saying that there's a balance to be struck, which falls between (on the one hand) protesting so vehemently that it has the potential to drive away the best researchers so we get left with nothing, and (on the other hand) not raising any concerns at all which might also have left us in a very bad situation. People will always disagree about where the balance should fall, and that's where the bulk of our community's differences are usually focused.
There is a legitimate concern that we have the potential to upset the best researchers so much that they refuse to actively engage with ME research. On the other hand, I recognise the historic problems, and I understand why people are (rightly, in my opinion) wary, suspicious and indignant that things should be done right. I find it difficult to condemn any style of activism because we simply don't have a track record of success in our field to use as a gauge for future actions. My nature usually brings me down on the side of positive and constructive encouragement and engagement, but I don't think I have any sort of special insight about what has brought us the biggest gains in our field. I think bringing about systemic change, via the power of the people, can take a bit of every kind of activism and pressure.
On the other hand, I think that the P2P project, the IOM project, and this NIH study may have been seeded from a single piece of activism: and that's Courtney Miller asking a question to Obama in person, which may have been the most successful single piece of activism that we've ever seen in our community, in terms of influencing government policy/actions. All the action from the NIH seemed to start from that point. (Not to take anything away from, or to belittle, the enormous amount of work that many others have done, and do. And no single piece of activism can work in its own - it's taken decades of action by very many capable people to get where we are today.)
I have got strong opinions about the NIH project - I think it's the biggest opportunity we've ever had - and the more I hear about the methodology, the more impressed I become. I think Nath is honest, candid and eager to engage, and to do the best quality biomedical research. He's voluntarily engaging with us - he's not being secretive. I don't think we can expect much more. His ambitions seem sky-high - the tests he wants to run sound fascinating, cutting-edge, and very complex. And they are making use of the wide range of experts and specialists at the NIH. He's looking for clues and will follow them. And the study will cost many millions - my estimate is in the region of $20m for all three phases of the study. I'm deeply impressed by nearly all of it.
One thing about human nature, is that all of us like to be praised when we are doing something right. And if we aren't doing something right, but we think we are, we like to be encouraged rather than condemned. So I urge anyone writing to the NIH to remember to praise the positive aspects of the trial and not simply condemn the negative aspects. Just my opinion, of course, but I think encouragement should be given when it's earned. So I urge anyone contacting the NIH to remember to thank them for the good parts of this project.