Participating in Harvard, Baylor Studies

Science PFS Research
#1

I wanted to write a post to encourage you all to participate in the ongoing research at Harvard and Baylor. The PFS foundation was kind enough to organize and start these studies at two of the best research institutions. A few people have been kind enough to donate large sums of money to support these research efforts. Unfortunately, these studies are slowed down now because of lack of participation from those suffering from PFS. It is a disgrace.

For the past year I have been doing intermittent fasting, numerous 1-3 day water fasts, lifting weights, carb back-loading, and rotating testosterone boosting supplements (Tribulus, Maca, etc.) in an effort to naturally recover (I essentially implemented cdnuts “protocol”). A whole year has past and on the outside, I am in excellent physical shape. I have never been this fit in my life. Unfortunately, I still have PFS with all the sexual sides effects, brain fog, sleep issues, etc. The brutal reality is that there are a few very fortunate people who have been able to recover, that does not mean that you will be able to as well. Stop thinking that PFS is something that can easily be beaten, we all know its not. And stop waiting around for others to do what you fail to do yourself, which is participate in the research for a possible treatment. A whole year has past and only 15 out of the 25 people needed for the Baylor study have participated. I just cannot fathom the stupidity and laziness on this forum.

The foundation has decided to help those who cannot financially afford the travel expenses and tests for Baylor, so people please just go. The medical community has obviously become aware of the reality of PFS and are interested in helping to cure us. A good example is the Dr at Northwestern that Jorbie just had on his podcast. They are truly interested in PFS, and they want to help. But, THEY NEED TO KNOW MORE. They cannot do so unless they have the necessary information coming from the Harvard, Baylor, and other studies - which all require the participation of PFS sufferers. The Baylor study will reveal a lot about PFS in terms of genetics and epigenetics and will be a major step forward.

After you finish reading this post, if you have not participated in one of the studies, call immediately to schedule and go!

1 Like
#2

Just had a pre-screen call today with Allen. Going in less than 2 weeks and really happy about it. Day 1 has some more eligibility requirements I think to get past but I think I should be able to easy enough.

A lot of things had to go right on my end starting with time off from work. Got myself tickets for fenway park redsox vs jays, too.

Really pumped about my luck lately and hopefully it carries through into them learning something in the tests.

Just want to say that there is a real close hotel, the longwood inn medical and I just managed to get one of the last rooms with about a week and a half notice. Give yourself enough time to book a hotel. This one offers a bit of a discount for brigham patients. Thanks to Len for the tip!

#3

Great post dgreene, your efforts with promoting the studies are really valuable.

Also brilliant to see another participant in the studies. Now, there must be another nine people we can find in the woodwork …

#4

Bump

#5

Guys

I’m looking to travel to Boston ASAP to do the BRIGHAM study. Please would anybody be in a position to offer me a place to sleep for 4-5 days whilst I’m there?

I’m planning to fly from the UK on a Sunday to arrive in time to commence the study on the Monday morning, which should last Monday - Wednesday then fly home there after?

Let me know if you or anybody else can help me out.

Regards Paul

#6

My advice would be to PM every US member who has posted on this site, no matter how long they have been inactive, to inform them of the importance of what is happening and how to go about applying for the studies.

#7

A lot of what you post is bull shit because I’ve been actively trying to get on the Brigham study for months after phoning Allen to be told I could do the study except for the FMRI part of the study as I’m still on anti depressants.

Now I find out today that all places at Brigham are nearly full thanks to local advertising by Brigham

If I dont do either study, this will be the last you hear of me!

The recruiting of the studies and other background politics surrounding the studies is fucking bull shit

#8

yes, i think there should be a newsletter also, sent to all forum members, with updates from the foundation. This newsletter could also encourage all victims to participate and donate. the forum is a huge chaos… endless and countless threads, where the important information is lost inbetween.

#9

I wanted to add one more thing. If you’ve been reading the news lately, you would have heard that there is now a cure for Hepatitis C. This is a huge medical break through. This used to be a chronic disease for which there was no cure, and you would have to take medication for the rest of your life to keep the disease under control. If you didn’t, you liver would disease and die. Given that a lucky few have recovered from PFS indicates it is possible to reverse PFS. You couldn’t reverse Hepatitis C, until now. You can either waste your time and hope over the next decades you naturally recover, or you can help Dr. Khera, Bhasin, and Melcangi try to find a treatment that reverses PFS, the sooner the better.

#10

What is the update? How many more participants are needed? Are things just dead in the water until more participants are found.

Can we come up with a plan on how to get direct with people to push them to participate?

I myself have already tried but am disqualified from participation and it is pretty frustrating to not be able to do anything about this.

I’m assuming we get new members to this forum each day. Can we set up a team that takes an organized approach to PM’ing new members about the studies and following through on whether or not they respond?

Or why not take this systematic approach for a list of EVERY member registered to the forum? Create an excel sheet on google docs and get a team together. I’ll take members #1-10, someone else #11-20, etc. We message and message and message them until we get either a definitive answer or can tell that their accounts have gone inactive. I don’t pretend to know how running a forum works, but can we email the address they registered when they signed up?

Basically, no one should be able to sign up for this site without being bombarded with PERSONAL and direct messages to sign up for the studies.

I engage in discussions about theories and protocols mostly because there is nothing else I can do (I already donate). I’m sure many others feel the same.

#11

I am disqualified.

My advice as far as what we could do to promote getting involved in these studies is to get a list of the screening questions and start posting them in as many threads as possible. This way it will become clear to as many members as possible if they are or are not eligible to.

Hopefully if someone just sees that they are eligible they will go for it.

Only other thing I can say is I would be willing to chip in (along with 3 or 4 other members) to cover the bill of a members travel expenses/ hotel if that would get someone else in on it.

#12

I am also willing to chip in, i am disqualified too.

People who are promoting the enrollment you need to stress the fact that the participants are not doing it only for us, they will greatly benefit from getting advanced testing that we typically can’t…

#13

Guys, I just called Baylor to inquire about joining the study.
[b]THEY ONLY HAVE 13 people in the study so far and are LOOKING FOR 12 MORE.

It appears obvious they need 25 in total for the study. No wonder we have no study results, the sample size is not large enough yet.[/b]

I’m looking into joining the study, assuming I qualify. But I WILL NOT be getting another biopsy from the penis. My dermatologist did this years ago and it hurt like hell. Now I know why I saw the dermatologist and why he found nothing in the biopsy. He didn’t know what to look for and neither of us knew I had PFS at the time.

#14

these guys are fucking retarded… no joke. I have called 2 times, wirtten about 5 emails, in a course of more than 6 weeks but i havent gotten an appointment yet. Its amazing.

I have told them i need an appointment… nothing!

#15

Well then you won’t be participating in the study.

#16

Just got back from the Harvard study. Everyone there is very nice and professional, and the tests are all straight forward. I spoke with someone from the foundation, and they said I was meant to be the LAST required PFS patient for the study, but someone backed out prior to me or something, and now they only need one more.

That’s pretty great news. I also know they have completed another control patient as well. Things are moving forward much more quickly recently, and we need to KEEP IT UP. We’ll beat this bitch, boys. Let’s do it.

#17

I was the last PFS patient to complete the Harvard study on Wednesday

They now only need people who took Propecia got no side effects

They are studying with 3 control groups

Group 1: men who took Propecia and have long lasting side effects
Group 2: men who took Propecia but got NO side effects
Group 3: men who are healthy and never took Propecia

Group 1 & 3 are now full

#18

Out of interest, what are people’s opinions on why this specific group is taking so long to fill?

Are they looking for people who took Propecia and got no sides of any kind at all?

#19

Yes that’s correct GELHEAD

#20

There are several questions regarding this group:

  1. If they had no sides while on Fin - why quit?
    Perhaps they couldn’t afford it long-term. Maybe it wasn’t working as well as expected. It could be that some simply didn’t like the idea of taking unnecessary meds. Finally, there will be others who did indeed experience sides while on, but not off the drug.

  2. Where does BWH expect to find these guys?
    If they aren’t on Fin anymore, and have no sides, they probably haven’t given Fin a second thought. Therefore, how would they even know such studies existed? And if they did, it’s unlikely many would be keen to partake in an unnecessary biopsy - even if paid.

  3. If BWH are using paid advertisements, where are they advertising?
    Hair-loss forums? Those places are chock-a-bloke with Fin devotees who are quick to pooh-pooh such studies. And there are many who use hair-loss solution, that simply don’t frequent associated forums.