I received an email back from the PFS Foundation and they said it costs $4,500 for the blood tests and sonograms for the Baylor tudy which they wont cover. However, there are no such fees for the Brigham study so that would be the cheapest one to attend, however it requires 3 visits.
If i dont know wrong, foundation can provide financial support for BAYLOR study.
I spoke to Allen at the Brigham study and he said that can condense it down to 2 consecutive days.
You also get paid to do the Brigham study - up to $800. Plus - email Phillip Roberts at media@pfsfoundation.org for funding help.
The only problem I see with the research is that the control group should have been men that have taken Propecia and not had any side effects. Merck could simply say in court that EVERYONE that takes Propecia and stops ends up with permanently upregulated AR. If we can close that loophole through research, then Merck may truly be fucked…
Also - I just came across this research:
ncbi.nlm.nih.gov/pubmed/24789081
Doesn’t this contradict the European findings?
I gotta say that reading this is just giving me so much hope. I can’t even imagine a world where I am recovered from this. It’s like a dream! Thank you so much to awor and mew for doing all of this. You two are legitimately heroes; if this website wasn’t around, and these studies weren’t in the works, I may very well have killed myself. You two saved me, for real. Thank you. When we are all out of this collective fucking nightmare, we should get together and celebrate.
I hear you on that one. I’m buying the first round, post recovery.
The more I think about the research, the more I realize the “Took Propecia, stopped, no side effects” group is less important. Merck is going to have a tough time explaining this one. I think this research has shifted the burden of proof from the victims to Merck.
Merck now needs to find a group of post - Finasteride men that DON’T have symptoms AND that have upregulated AR. I don’t think they can find a group like that, but even if they do, our attorneys can just say “Prove that they won’t GET side effects”
I think this research makes it VERY likely that Merck will have to fund research into this syndrome…I am extremely happy as well.
Do you think this study explains the CNS related side effects? Insomnia, anxiety, vision, ect?
I am less optimistic. 8 people is not enough to prove that finasteride caused upregulated AR. Also I am not sure if it is proven that upregulated AR causes our list of symptoms. Until we have studies proving the exact mechanisms and scientists explaining them in detail, we will have difficulties in court.
8 people not enough? Its not like there are millions of us… what if they found a treatment or cure but only tried it on 8 people and it worked on all 8 who had PFS would you dismiss this and tell nobody to try it too?
I am saying that in court 8 people wont be enough.
- Prove that finasteride caused AR upregulation
- Prove that AR upregulation caused our symptoms
I am sure you are right. Eight people is not quite enough.
That is why they are conducting more research, as we speak.
Then again, I am not a lawyer, so I have no clue, and am talking out of my ass.
I think the best thing for everyone would be to not concern themselves too much on these types of issues and make our main goal to get the rest of the study participants that are needed.
I wasn’t speaking totally in terms of its legal usefulness but in its overall usefulness in helping us know more about PFS.
This is definitely the key, you really hit the nail on the head with this.
Another possibly pertinent study out today:
medpagetoday.com/MeetingCoverage/ENDO/46497
CHICAGO – Simply giving estrogen to male-to-female transgender patients won’t completely suppress testosterone levels, researchers reported here.
In a study from a single-center experience, patients achieved good estrogen levels but only about half reached sufficient testosterone suppression with estradiol with or without a progestin, Matthew Leinung, MD, of Albany Medical College in New York state, reported at the joint meeting of the Endocrine Society and the International Congress on Endocrinology here.
Adding the anti-androgens spironolactone or finasteride didn’t help, and actually appeared to slightly raise testosterone levels, Leinung reported.
Any thoughts? Is this related to PFS in any way?
Not really - we’ve known all along that 5-ar inhibitors raise testosterone.
Completely ignores the level of androgenity though. Testosterone alone gives no impression of this - it’s dependent on all other opposing hormones and their interactions at the receptor sites.
It’s staggering how ignorant endocrinology is. Most doctors will test your testosterone within a wide range then make a diagnosis based on that. No E2, SHBG, DHT, or Free T even considered. It’s the type of thinking that rationalises inhibtion of DHT synthesis as a safe solution to hairloss. Fucking idiots.
In response to a previous comment.
Plos1 is a well-respected and most assuredly peer-reviewed journal. The journal’s philosophy is that any study with sound methodology should be published independent of the perceived importance of it’s findings. It has even been shown empirically that made-up studies, while published in other open access journals, were promptly rejected by Plos1.
theguardian.com/higher-educa … fake-paper
Did the immuno study on AR-positive cells in penile tissue report if the subjects with low testosterone were also ones with higher/lower ASEX scores or AR expression? Was serum T correlated with AR expression? There are many questions that they seemingly could answer but did not (unless I misread).
I am anxious to see any follow-up research on the effectiveness of signaling cascades/gene transcription downstream of ARs.
en.m.wikipedia.org/wiki/Gene_therapy
Look at what is currently possible. Once we pinpoint this, we are on out way I truly beleive it.
Even if research found something today to help us how likely is it that the FDA will bog it down. Merck got away with a weak ass clinical trial. I bet somehow they will find a way to screw us over again. I know most of us would jump at the chance to trail a fix but the FDA will step in to protect us.