So curious question in all this: what can we all do to advance the understanding of PFS?
We have thousands of eyes patiently waiting on three studies to be released. After that, not sure what else the foundation or possibly other entities have for the next round of research.
Whatever theory you prescribe to, the studies are looking at the AR and underlying genetics behind potential mutation, methlyation, what have you. Let’s just assume they are right and our answers will be determined by a close look at out DNA.
So where does that leave us? I’ve got some money to burn on top of what I’ll set aside for the foundation. Other than docs trying to treat symptoms, what suggestions are out there regarding specialists we could see, testa we could get done and so forth or is out condition such fringe science that we are really only at the mercy of a handful of studies, looking for things well beyond the scope of most testing facilities to solve? Are there labs that can basically repeat some of the types of things Italy and Harvard are doing and getting another set of eyes or perspective on what is going on?
Scientifically speaking there are no other routes besides the continued support of the foundation.
What you suggest, i.e. spending money on tests individually, has been tried over the last decade, and it failed miserably. People have done all kinds of stuff like gene therapy and what have you. There are no doctors/ specialists that can successfully treat you. Thats the whole point of doing research in the first place. People have travelled all over the world to visit self proclaimed specialists, only to come back empty handed and with a lighter wallet. The best return on your money would almost certainly be to donate it to the foundation.
You suggest that after this round of studies the foundation doesnt have a clear path forward. That statement is incorrect. The foundation will continue to fund studies as long as we keep donating. Obviously the knowledge we gain from past studies will be used in the design of future ones.
The best bet you have besides continued donations and participation in studies, is to keep yourself as healthy as possible, by eating a clean diet and excercising. Also you can try to keep your head above water mentally, by pursuing stuff you cared about before.
Very expertly said. I could not agree more. We all hope they have more studies planned but they cost money as you said so all should be donating. I guess this bunch has tried a lot. I am just wondering should the busted AR or sensitivity turn out to be true, what we could more closely focus tests on to perhaps expand upon the research?
Unless the studies really don’t find anything major, it would be awesome if the three teams couid start to brainstorm probable causes and theoretical protovols. I’m on this mess just over a year and not sure how many of you have held on so long
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