Very well said Kate!Well . . . here's my takeaway.
First, I share the sense of bait and switch. I own that I've been (believe me, not on purpose) part of how that gets done. On this year's blog I included the links to everything I've reported from 2007 on. Seven years and counting. Some of it makes me cringe.
As my understanding of what we're up against has grown, so have the possible approaches. At first it was just good to know that ANYBODY was doing ANYTHING that held promise. Hans Keirstead, Stephen Davies, Os Steward, Mark Tuszynski, Wise, on and on . . . I've been trying to just keep showing up and reporting back on what they're saying. Paolo would say, I think, that we as a community are nowhere near harsh enough -- that we don't ask the tough questions.
The whole thing with the new book kind of came from that sort of place. The new book is me trying to say, "People, we don't really understand this landscape well enough to even know what to demand. We're vulnerable to getting snowed -- specifically I have been vulnerable to getting snowed -- and I am DEAD FREAKING SICK OF IT." That is the problem I'm trying to solve.
You can't ask tough questions if you don't have basic grasp, okay? At least, I can't. I think we need to understand a lot more about the way money gets passed out. And about why things take so damn long. And about what motivates your average post-doc in your average sci research center. And about what we are therefore able to do to push things forward. There are pressure points, I think, and if we can hit them all hard we have a shot.
On the science, I would say this:
Regeneration (meaning figuring out how to get axons to grow and form the proper connections) is a bloody tough puzzle. it's the end game, and it's still far off. I believe that they'll get there eventually but it won't be soon. Regeneration is "the cure."
In the meantime, we have SO MUCH reason to support this new stuff from the Harkema lab. I met with Rob Summers because he lives a couple of hours from me and because he was the brave guy who said, "Go ahead. Please. Stick that thing into my back and let's see what happens." If someone had told me a year ago that we were going to hear about a therapy that was in the Model T phase that had helped four out of four chronic guys recover at least some stuff, I'd have said, "Right." And rolled my eyes.
But that's what happened, and they're still guessing about why. I am DYING to see data from 36 more people. I am NOT expecting a miracle, right? I AM expecting that the scientists who are running this will themselves be surprised by how it unfolds. But we won't know unless they do it. The Big Idea really is a big idea. It's a private foundation that has been in this world for a long time getting behind scientists who are saying that they are prepared to throw down on behalf of people with chronic spinal cord injuries.
Not to pick on Paolo, but he does seem to be playing the Cassandra role here -- calling out this research as anecdotal. In a way, he's right. It's only these four guys. We haven't seen hard data on their before/after pain, bladder, bowel, sexual function, etc. To which I would say, geez, that's because nobody thought to measure in the rigorous scientific method way because nobody dreamed that the epistim thing would do what it has done.
Hence, the need for 36 more.
Being perfectly honest, I want to see something happen while the sci person I care most about can still benefit. He turned 59 a month ago. I think the odds are in his favor.