That’s not how it works in science, though. They can only give a broad timeline, because by it’s nature it’s unknown what they may discover and may have to investigate further. Plus, application to journals and the peer-review are somewhat beyond the control of scientists. It’s not like building a house where you already know what the final outcome will and should look like. Typically, with the studies we get a broad timeline. It’s just the Baylor study that has been way off any predictions.
There won’t be any updates on preliminary results or anything, because that would prevent the scientists from publishing the results in a reputable paper. We want these results to be published in reputable papers, because it will give our condition recognition in the scientific community whch may lead to increased interest and public financing. And, of course, the scientists want to publish in reputable papers, because it advances their career. And since we are not loaded with money and somewhat dependend on the goodwill of the scientists, that’s one way to pay them back.
We need to have faith in the people at the Foundation. They have done an incredible job to raise awareness of our condition, build a network of scientists and initiate studies with top class researchers. The people involved know what they are doing. They are not withholding information for the fun of it. Either the information is not there or the premature release is detrimental to our cause.
I know it’s hard. We are all suffering and we all can feel time ticking away. I’ve been here for six years and have been suffering from PFS for eleven years now. It sucks. But we need to be patient. We have come a long way already with the Foundation, the Baylor study that will hopefully be published in the next couple of months, Melcangi’s multi-stage research program etc. Things are moving ahead. We need to dig deep, be patient, keep our heads up, donate to the Foundation and participate in the community-research projects. It’s the only way!