Cheers ihatefin 
Its for all our benefit.
Comparing my symptoms with most others, I’d say I have SEVERE PFS, hence the reason why I feel my participation would be valuable to the research.
[quote=“joshua.barnes”]
If anybody is interested in speaking to the program coordinator about participation, please PM me for his contact details. He will ask you initial screening questions on the phone to assess your eligibility. Be honest with him FFS. This is important!
The study will require two discrete visits to Boston with an additional optional visit.
The initial two visits will consist of additional screening questions and fasting blood draws. The third, optional visit is for an MRI brain scan.
Travel to and from as well as accommodations is the responsibility of the participant (you).
J[/quote
I just talked to him today they are in the process of making it one trip for a total of 5 days, that way people won’t be traveling back and forth.
Airbourne
I’m travelling there in September. They are hoping to condense it down to a 3 or 4 day visit.
Day 1: Blood Test to establish suitability for the next stages of research, these are basic blood tests such as white & red blood counts and glucose levels.
If Suitable:
Day 2: Blood results come back. Then you do some basic endurance training to measure muscle mass and body strength
Day 3: Biopsy taken (2 Samples Taken from two body areas)
Day 4: Brain Receptor Tests
Of course there is more to it including written tests as well to establish cognitive functions or impairment.
Fuck I hate MERCK !!!
Far as I know they aren’t having any problems finding subjects for this study…
Boston, that in itself speaks volumes does’nt it, but I will be there because I’m truly screwed more than most by this Med, hence my efforts. Plus, one of the exercises/tests I am sure I will complete with the most amazing results is in terms of brain imaging due to Propecia damage at the receptor sites. I see all things in life as a Tree now, dont think I need to expand.
I am now more aware than ever of Mercks evil PREY over this site !!! FU
Boston,
I agree ai asked him if they are getting enough responses for the study he said recruitment won’t be an issue… Hopefully things start moving faster.
HI what kind of sufferers are here to participate I mean it would be pretty cool to have a group of longterm sufferers ( 3+ years),
some who suffer 1-2 years and a few like Tigershull who suffer a few month-1 year . on the other hand this shit affects everyone differently … but from what I’ve heard that their recruitment is in about 3 months sounds very promising . another question is how long does it take to analyze these tests… I calculate on at least 8 months from now on. Is there somebody who has deeper insight about these tests ?
Thank you for all the efforts! This is great news!
Since travel and whatnot to Boston will be on your own dime, for those of you who are participating but are hard up for cash and need a place to stay, I can host people at my place. I live a short drive or train ride from Boston. PM me for more info, etc. Couchsurfing ref’s are a bonus.
Just so others aren’t discouraged from participating, TigersHull failed to mention that while he is paying 2K of his own money to travel to Boston, he will receive almost 1K in payment for his participation - so don’t be afraid of the cost, its not nearly as prohibitive as TigersHull would have you believe.
Jorbie
If I take part in the FULL research then yes, you are right, I should be re-imbursed with $700 but my flights return will cost me $1200 then I need food and a place to stay for 5 days. For those of you in the US already, it will cost you a lot less to take part. I still estimate my cost to be around 2k
Well…since you would be eating regardless if you were in Boston or not, you shouldn’t add that to your expenses. As far as staying somewhere, I am also involved in the research and used www.couchsurfing.com to find someone to stay with for free. That should help cut down on the expenses for all involved.
Thanks Jorbie, I will look into the site you posted.
I am excited to read this. The pfs foundation has outdone themselves in acquiring this study. This is the right track. I was already in a good mood today, and this made my day. We are all brothers here of a common illness, and we should all celebrate small victories for our cause. We are not alone, everyone here is strong. I feel connected to you guys who know what this pfs is like. I’m glad we have people such as Dr. Santmann, and countless others in our corner.
I haven’t contacted Brigham and Womens at all. I was just wondering if anyone knew what the parameters were for inclusion in the study i.e. whether prior history of mental health problems and anti-depressant use etc would automatically exclude you from taking part.
Does anyone know if the study is getting the number of participants the researchers expected? Just curious.
If they need more people, I will go. I can’t seem to generate the motivation to call though…
I have applied twice and over the past few weeks. I only live one hour a way and no one has gotten back to me.
Maybe Mew or Awor can give us an update.
Please be patient, they’ll get back to you.