I have contacted the studies as a result of these posts. I will need to travel to the U.S. from Ireland if I can travel that distance many others can make a journey. We cannot give out about any issues if we do not make use of this opportunity to discover what is causing our problem. If we squander this chance we may not have another for a long period of time. Please contact the study organisers and participate.
According to the Foundation’s website one of the current goals is to identify epigenetic alterations. Unless I misunderstand it epigenetic alternations are accumulative so it would not matter if you took an anti-depressant when you were 18 or if you took it last week.
Awor pretty much covered it. How do you know they aren’t making more of an effort to recruit?
On a personal aside I’m also discouraged that guys haven’t financially supported the Foundation more and continue to spend their resources on things based on sketchy science or out and out quackery.
Wait, we cannot even get 25 people to sign up? What is everyone waiting for? We have top class scientist ready to look at our problem, but no one shows up? Really? This is an amazing opportunity to learn more about our problem and hopefully get a better understanding what we are up against. This is step 1 on our long way to recovery.
I have been registered here for two years. When I started I was so depressed that I read almost every god damn post in this forum, looking for positives. There were dozens of threads started promising and then hit a dead end. There were hundreds of people that took ridiculous amounts of supplements based on dozen of theories. The problem has been “solved” dozens of times by armchair scientists. But we are still here and still suffering. People have jumped on countless bandwagons, visited obscure “doctors” and spent huge amounts of money on any silly thing that provided hope. Nothing solved our case. And now we are lucky enough to get a sophisticated agenda going to tackle this problem and we cannot get 25 people to sign up?
I know there are many people like me who are excluded for various reasons, but if you fit the profile, please sign up! If money is a concern, I am sure we can get that sorted.
This it, this is our shot. If we don’t go down this route, we have only ourselves to blame.
Right …
I applied to Brigham study over 4 weeks ago phoning Allen Papazian and was successful with his main part screening then I was asked to phone back almost a week later to the US from the Uk to speak with the FMRI department and was told they would feed back to Allen if I was suitable for the FMRI part of the studies… Three weeks later I’ve heard fuck all
Total fucking joke…
I’ve also had another half a dozen Uk members here say they been ignored by those suppose to be involved in the recruitment of these studies whilst I see people here venting anger at people not willing to take part in the said studies
Put it this way… Unless I get feedback ASAP from Boston they can go fuck themselves and the same for the PFS foundation too, I mean this 100%
I’ve stuck my fucking neck on the parra pit so to speak but if I dont receive correspondace from the study recruitment personnel or PFS foundation Im out of here !!!
Makes me laugh… People here bang on about the need for PFS victims to do the studies yet those willing are been ignored
Well, if this continues, there will be no more of my website, twitter, Facebook, newspaper, TV work
So it’s up you guys here if you want me to continue my work and fight like mad to help us all or else I’ll walk away? Just be a dad to my kids and Leave this arena?
In summary the foundation have funded these studies but the recruitment process is pathetic.
I read daily members saying ‘Take Part’ in the studies but if people are been ignored after applying then there is a big problem
It’s not fucking rocket science getting people signed up or replied to
You have to understand its one of the world’s largest research institutions - PFS research is far from their only project. Other groups need to use the MRI machine, and other equipment. It took me a month of phone calls to work out the timing - instead of bitching about it, I sent Allen several emails to make sure it was going to happen, and after a month it got done. I know this syndrome sucks balls, but don’t despair about a few weeks, or having to make an extra phone call or email. Just do it.
No reason to get angry about it, just keep reminding them. Unfortunately, we are the ones that have to be diligent in this. I understand they are being paid for this study, but the results are about 10 million times more important to us, so take that into consideration. WE need to fix this nightmare. It’s up to us. Do everything you can to take part in these studies, and if you are eligible, push to do it quickly.
Hang in there, THETIGERSHULL, mate. You’ve done a great job so far, just keep on contacting them and get it bagged.
(ninja edit. misunderstood something.)
Is there a funding concern here, are you asking for your flights to the USA be funded by the foundation?
What if we used antidepressants for off-label purposes? I used a tricyclic antidepressant (nortriptyline) to treat pain a while back.