Just got a no from Clinical study Boston.
Clinical Research has just called me.
I am to old ( 55 years )
This is amazing news. Can’t wait to see what we find.
Anybody know when this gets off the ground?
Have any of you been accepted?
For what it’s worth - I called today to ask about signing up.
I was told that there are 2 visits required, with a third optional visit. The first two visits have to be completed before the end of this year. Given my work schedule and family obligations, I cannot make two trips to the East coast in the next month and a half.
However, the good news is, I was told by the screener that the hospital is receiving the level of respondents they had hoped for. So at least it sounds like this first phase is to be completed soon and that participation is high. At least this is encouraging.
Whats the time scale for results? If they get all the tests done by the end of the year, and then compile them beginning of next…should we see it published sometime next summer?
I’ve read that the peer-review process – where in a panel of independent experts within the field weigh in on the methods, results and so on – on such studies can take as long as the studies themselves.
So if the study phase takes six months, and the peer review takes six months, we’re probably looking at these PFS studies being published in the fall or winter of 2014.
But, again, I am just guessing here based on what I’ve read.
This is great!
It is important for science and for us…it is huge that someone got interested in our case.
It’s so unfair though, because the money for these studies should come from MERCK…
Any news on this, Finatruth?
No updates?
lets do some crowd funding? anyone has experience on this?
The longer these studies take to come out the more PFS victims there will be because people think the drug is safe.
maybe ı am a fılthy guy but ı actually want to see to sufferıng pfs who dont belıeve us and laugh at us . Especıally thıs haırforum guys.
Keep goıng to take thıs shıt and keep goıng to not belıeve us morons. Yours end wıll be lıke us.
Finatruth,
The PFS foundation is still waiting for your generous donation. You made this post July 2, 2013. Its July 17, 2014. According to Awor, you still haven’t made any donation because you don’t agree with what the researchers are looking at.
I don’t understand why people on this forum think they know more than doctors and scientists who have been studying hormones and genetics for decades.
You know why? Because there is so much emphasis on sexual sides that everybody thinks that Fin causes only sexual sides. when these people go to see Drs they cry about their falling dicks, the drs and Scientists think too that these young people have sexual issue only. I am sick and tired of sexual talks here. Any body who visits this website may think about us as being a bunch of crazy sexually frustrated people. you will read a lot of posts here about guys are crying about their dicks and drs giving them cialis or viagra.This is not sexual issue only. Sexual sides are just the effects of deep rooted problem.
+1
Its pretty clear you have no fucking idea what the researchers and doctors are working on. THEY KNOW ITS NOT JUST SEXUAL. THEY KNOW “SEXUAL SIDES ARE JUST THE EFFECTS OF DEEP ROOTED PROBLEM.” Obviously altered neurosteroids affects more than just sexual function. Sure, the average private practice doctor doesn’t understand the problem. But, Dr. Khera, Melcangi, Bhasin, know that PFS is a multifaceted problem. Instead of complaining about the moronic doctors, you can try to help the few doctors who are dedicating their time and expertise to try to save a group of vain idiots that took a drug to keep their hair. Be grateful that we have doctors trying to help us, because many could said “I’d rather spend my time helping the poor patient that was born with endocrinological problems or had a traumatic accident they had no control over.”
spstriken, you are 100% wrong as is usually the case. All of the research institutions involved are very well aware of the all the sides and those who participated in the studies can attest to that. Have you spoken to these researchers? Have you seen the study protocols? Are you completely forgetting about the Italian neurotransmitter studies?
degreene is exactly right and nonsense like this is why I rarely visit this board any more. Fact is 80% of the guys here are delusional and are beyond any reason. The notion that any of us here are better qualified to direct the focus of the research than some of the top scientists in the world at Baylor and Harvard is completely ridiculous.
The truth is Finatruth was bluffing. That’s why the donation wasn’t made. I wouldn’t worry too much about it…just please get your asses to the research institutions so they can figure out what is going on.
Can I participate in either study if I am taking clomiphene (Clomid) and Adderal? I recently saw Dr. Goldstein as I was on the verge of losing my job and he said that he has good success with alleviating mental sides. Two weeks on the protocal and I already feel an improvement in brain fog.
I wasn’t bluffing, I asked for a well presented study once a solid determination of the root problem was determined to investigate a potential treatment. Obviously, nothing has come to fruition, and as far as Awor; I was told he had a potential study and I would be presented with it…never heard back
Unfortunately, the medical community barely recognizes adrenal disorders less serious than Kennedy and cushings disease; such as adrenal fatigue so I have very little faith anything will come to fruition.
However; good news is that it appears the syndrome is self limiting, even if it takes years and years to get better