I am totally lost in the scientific world

[Th1onein]

I love science, but I don't understand this culture that I am entering into. On the one hand, you have the researchers that are frightened of you, and on the other, you have the ones who look down on you because you are not of their world. Then, you've got the ones that want to take from you.

And everything goes so damned slow. And everyone's jockying for funding. And, then, you have to watch out for the pharmaceutical giants, who are out to screw you to the wall, and bury your shit, because they have a lot to lose, if this type of research continues to product.

What a freaking mess.

[billyskank]

1. Science and commercialism ought to be kept at arms length IMO

[Th1onein]

2. I agree.

I don't see how anything gets done in a timely fashion, here. It really is a major mess.

[mike_c]

3. it's not quite so dog-eat-dog outside of the bio-medical fields....

I wouldn't want to be doing that sort of research.

[Bill McBlueState]

4. yes, it's a messed up culture

What kind of science do you do?

I could complain at length about the culture of science, but then I imagine the alternatives -- you know, cube farms and all that -- and I'm pretty happy.

[Th1onein]

5. I research cystic fibrosis

I am not a "real" scientist, in terms of letters after my name, though. I've done this work because this disease killed my son. I got lucky, because a lot of parents with CF, and people with CF, decided to support my work. I would have done the work anyway, without these people's help, but they certainly facilitated the process. As it is, it took me eleven years, to finally get the answers I needed. I have beaten mainstream science to the answer, but how to go beyond that?

It's just a very strange situation I've gotten myself into. An entire culture that I am unfamiliar with. I am totally out of my element, and walking blind.

[Elidor]

6. You seem like a remarkable person

I think you'll get your bearings. You've gotten this far. I wish you great success.

[tigereye]

7. sometimes it's really important for the researchers

to remember that real people and kids are at the other end of the equation. Good for you for your determination and the willingness to enter into dialogue with the science piece.

[Avalux]

8. I've worked in the research arena for a long time -

if you ever want to bounce stuff off me, feel free to PM. I might be able to help in some way - I can at least try. :hi:

[some guy]

9. This is what you were concerned about a couple weeks ago

when you posted about continuing on this line or finding a new disease to dive into.

While I don't have personal experience in all that you're up against, nothing you've written today surprises me. I'm sure it doesn't surprise you either, since you were leaning toward moving on to another disease rather than waging this fight.

Maybe you need a powerful advocate? I was hoping there might be someone in your foundation who would be able to help in that role, but maybe you need to do some research into finding a politician or celebrity or someone like that, who has a personal stake in finding a cure for CF. If you could get in touch with such a person, show them your results to date; they might be able to help you in your battle.

Another option (good thing I type slow, it came to me while typing the above) is to get your work more publicity, via the internet for starters, and then maybe more mainstream magazines or tv.

Are your volunteers still showing good results? I hope so, for their sakes. It will also help you in your own fight. Continued best wishes.

:hug:

[Th1onein]

10. Yes, and you can see that I made a decision, at least for now.

There's a researcher who has offered to "share" my work with me, by doing some large clinical trials, but he won't disclose what agreements he has with pharmaceutical companies. I've got a problem with that. I've got a patent on my therapy, but if you "share" the trials, etc., you also share the intellectual property rights, patent or not.

There was a paper published just recently, which brought to the fore and underscored some of the basic premises of my work. In fact, the work in it proved one of the major premises of my model of the disease. When I talked to the main author of that work, he was almost crying that there was already a patent on this therapy. As sad as that might be for him, you can imagine what it says to me, and to many of those who suffer or see their children suffer from this disease, about his priorities. Damn.

The volunteers are still showing good results, yes. I guess we're going to have to get publicity, but publicity is not really good if you want serious attention from the scientific world. It is a bit of a "slap in the face" to mainstream science that a group of amateurs got to the finish line before them.

It's just a mess. A freaking mess. And I am disgusted.

[some guy]

12. Keep on trusting your self

:hug:

You started from point zero, and have got this far by trusting your instincts and research. You've also gone against mainstream science to find your breakthroughs, so it's possible you will end up going against mainstream science all the way to the end.

I wish I had better answers or ways to help...

:hug:

[dropkickpa]

11. One reason for the funding jockeying is

that, under our beloved :puke: leader, congress managed to slash increases in NIH funding (I think it was a paltry 3% increase, which doesn't even match inflation this year), which has in turn, due to inflation and increasing research costs, become basically a huge cut in available grant funds for research. This means that pilot studies (studies done with very small group to see if a new approach/idea is viable for increased study) are pretty much sitting dead in the water now unless they get piggy-backed on a larger established study, which is hard to do as they pretty much have to spell out everything they want to do, and the grant reviewers are very reluctant right now to give any sort of funds to unproven work. Also, there are researchers who have had established research who are now scrambling. I work in biomedical research at a university, and I've seen what a huge impact this has had on the research community.

Unfortunately for those in university settings, it is harder for them to use pharma funding due to a lot of issues. This just drives researchers to big pharma so that they can continue their research. Hmmmmmmm.