I would like to express my appreciation of how the researchers, and
@Rose49 have responded to our interest and questions, and kept us in the loop. In medical science this is invaluable to patients, though I do expect to see this only after publication, as there are still lots of hoops the system makes people jump through.
This is indeed science not religion. The scientific process is the best thing I know of to uncover knowledge in the objective world. Evidence, reasoning, and questions, questions, questions, are vital to getting ever closer to answers, and it needs to be open, at least after publication.
I am happy that the data is made available for other researchers. This can make a big difference.
Now I do expect surprises. Maybe big ones. I also expect hypothesis modification, new hypotheses, and abandoning of hypotheses, as data accumulates and things are tested. These are all part of science. Is this research perfect? No, research never is. Its just darn good, encouraging, and producing interesting results.
We have seen the dark side of medical research elsewhere. Distort evidence; make hyperbolic claims; play a political game of rhetoric rather than sound scientific reasoning; blame the patients; use technical definitions that are rarely defined and then use over and over (like recovery redefined to include serious disability), and to joke about patients at conferences and seminars while claiming to patients they support them. This dark side of medicine looks far more like a cult, and resembles the cult of Freud that distorted psychiatric research for nearly a century, even down to charismatic leaders.
When I look back at the history of what I and others have called psychobabble, one things stands out. Advancing technology ends psychogenic claims, like for diabetes, cancer, heart disease, immune disorders, genetic disorders, and even infectious diseases. People who advance the technology often create the situations where change can happen. Its a bit like the old adage "We railroad when its time to railroad", only its time when someone puts in the work and creates the opportunity.
Its really refreshing to see scientists doing science and communicating with patients. We have had a long list of scientists who have done good work, but sometimes we stare at the dark side so long that it seems almost omnipresent.
Thank you, everyone, who have been a part of this.
