Excellent yet twisted point.
Better yet, all of this will come to roost chez Kenneth C. Frazier.
My advice to him is this: Start orchestrating your exit now – while you can still cash in your stock options. Otherwise, it’s Bill Cosby time!
This is interesting. They have a specimen already, probably Daniel M. Stewart?
It may be possible to compare his 5a-Reductase gene to others and so to root out some of the hypochondriac wierdos who make up so many of the study participants.
No, I don’t think it was Daniel Stewart, as I seem to recall some family member saying he was cremated. And would have been well over a year ago.
Must be come other PFS suicide.
I definitely think it could be, he was one of only two suicides that I’m aware of. Daniel was also from Texas like the SWBB. He was also in contact with Mohit Khera, who got his MD at the University where SWBB is based. Plus, isn’t an autopsy required for all deaths outside of a hospital? Surely some of his brain tissue may have been stored and may only recently have been passed along.
Anyway, I hope it is his tissue because I found him very believable.
The problem is, the names of the deceased are always kept confidential, so we will likely never know who these poor souls are.
I agree that there are probably many hypochondriacs on here, but I don’t see why you think there will definitely be common genetic anomalies in the 5ar genes.
I’m not saying there definitely will be. But its an obvious place to start and that’s why its being tested.
Of course there are many 5a-reductase gene mutations known. But if trustworthy participants (Daniel M Stewart, ‘Jorbie’, etc.) share the same or similar 5a-reductase gene, and untrustworthy participants do not, we will be on to something.
I suppose my main point is that this fact may be lost on the scientists performing the study if they don’t know who is a weirdo-hypochondriac and who isn’t.
But we should assume that there’s a rigorous screening process the SWBB does before accepting donations – medical history, medical records, etc.
We know that Daniel Stewart DID participate in the Baylor study, so Baylor screened him in the first place and also has his tissue samples from his participation in the study.
Hey Oscar,
what’s with all this “weirdo hypochondriac” nonsense . Attitudes like that resulted in people with this condition being ignored and mocked for a long time . People’s lives are devastated and you continue belittle them.
Yes that is peoples attitude towards this condition. But also the majority of posters here are hypochondriacs.
They are also taking part in studies/legal action/visiting PFS doctors/giving interviews etc. etc.
I blame them these people for perpetuating my condition.
Hopefully gene tests can finally exclude them.
Not sure what you’re implying here: “taking part in studies/legal action/visiting PFS doctors/giving interviews etc. etc.”
Are those good things or bad?
I would say they are all good things.
Yeah fighting back in all this is very tough. I did a TV interview because I thought it was the right thing to do. Our only hope of survival in all this is exposure and to get the right people on board. I contact AR researchers and epigeneticists daily to ask for their help. On top of spreading the word, we all need to be contacting those on the cutting edge of research and to tell our stories.
I wish it were that easy – just a few guys calling up researchers and asking them to do studies.
But the truth is, even a small clinical study at a halfway decent medical institution costs well over $100,000. And typically more like $250,000.
Where is that money going to come from?
In the case of the of the foundation, they put up private family money of about, I figure, $1 million for what’s in the works right now.
And then you have the issue of IRB (internal review board) approval. Even if one lone researcher wants to study some niche subject matter (like PFS), the university/hospital board of directors has to approve it. And that often takes a lot of time, and there’s no guarantee they will OK any study. Typically, they are looking for studies that will of course advance medical science, but also advance their own agendas.
Anyway, be thankful for the research that IS in the works, and has been funded by some well-off families.
Who sat this is the case… How do YOU know that they are hypochondriacs… since when is it your call as to who is sick and who isn’t. …
Who says they are hypochondriacs. What evidence to you have to back up this claim… Since when is it your call on who is legitimately sick and who isnt
Agreed. We should not judge PFS patients. And any condition that prompt otherwise healthy young men to kill themselves must be pretty damn bad.
agreed also. But while we continue to donate and patiently wait for studies to materialize, no harm in contacting potential saviors. Epigenetics is currently confined to research labs, but if we don’t ask, no chance they will ever test.
Yes, in THEORY. But any halfway intelligent scientist is going to look at the whole picture, which is to say:
-What research has been done thus far?
-What research is currently being done?
And based on that they will devise the next study that makes sense.
So since the two big PFS studies are probably just 9-12 months from publication, they will likely wait to see what those yield.
And even then, where WOULD they get $100,000+ ?
If someone has said something that makes their story lose credibility, then I get worried. If most people say something that makes them lose credibility, I get really worried. As would anyone.
Maybe the story of Chi (aka James7786) who flew out to Italy from the UK to take part in studies doesn’t bother you? It bothers me.
If someone is taking part in studies that isn’t actually sick - then that could hardly be worse for those that are.
I understand your concern but I think you are focussing too much of your energy on thus one issue…Perhaps there are a couple of individuals with psychosomatic symptoms. By far the majority of participants are legitimate and patterns will arise.