What would you do?

[Th1onein]

I have people trying this compound that I wrote my paper about. They can get it from a chemical company, and they do. This drug has not been tested, clinically. That is what we are waiting for--the results of the clinical trials, which have not even started yet.

Jesus Christ. I have to admit, I like getting the reports on the results of these types of forays into the unknown, but I have a responsibility, too. What is that responsibility?

What would you do?

[Redstone]

1. I could tell you what I'd do if you could post something that made some sense.

Can you elucidate for us, please?

Redstone

[Th1onein]

3. I've been doing CF research for eleven years.

I developed a new model for the disease, and I patented a compound that I believe will ameliorate most, if not all, of the pathology associated with the disease. I did this work with the help and the support of about three hundred other people, most of whom have children with the disease. I wrote a paper on my model, and published it in a medical journal. The mailing list for my research group contains a lot of information on the research, how we got to where we're at, and the compound that we patented for therapy. People on that group are using the compound, now. We have not entered clinical trials yet; we are still advertising for subjects, but some people are jumping ahead and trying the compound now. We have disclaimers on our website warning people to consult their medical professionals before they try anything that is discussed on our forum.

[Redstone]

4. Ho, boy. You have a tangled situation there, don't you? It must be tough,

trying to stick to the path of "accepted" methodology, while at the same time wanting to make people get better NOW.

I wish I had some advice for you, but I don't. Follow your heart and your instincts, I guess. And DO keep us updated on any progress would you?

(And if you come up with something for MS, I'll be REALLY interested in hearing about it.)

Redstone

[some guy]

2. good evening

I think your responsibilities are thus:

1. be honest in informing those who may wish to try your compound.

2. as much as possible keep in touch with those people, and keep them apprised of any possible adverse effects which may come up.

3. keep fighting to get trials, and funding for same.

4. most of all, trust in yourself, and listen to your conscience. It's what has got you this far.

Your world has changed; when you were just doing the research, real lives weren't affected, now that is a risk. The people taking the compound are choosing to do so because they have limited or no other options. You're not forcing them to do anything against their will, so you have limited responsibility forthat aspect.

Last week, you were talking about the problems in the research/funding/pharma vipers nest. That's tough; you have done great work, and it's good you're not willing to compromise it.

:hug:

One of these days, I should read up on this field; I might be able to offer you decent advice, instead of just cheerleading for you if I knew what the heck I was talking about. :)

:hi:

I hope you have a wonderful holiday season.

:loveya: :hug: :loveya: