With all the recent press and doctor’s given this the true study and attention PFS deserves there must be some of you out there that are communicating with doctors and or research teams on a regular basis, if so please report on this site what they are saying or better yet prescribing???
This too is what keeps giving me hope. Whenever Im down and think Im never gonna get through this, I just think back to my first year of pfs. I was in such a worse place then than I am now.
Personally, I would be incredibly surprised if they figured out PFS and absolutely floored if they figured out how to cure it. Perhaps they will eventually, but that’s so many years from now I’ll have blown my brains out long before then. Don’t sit around waiting for a cure to be found. It’s not going to happen, at least not in any kind of time frame that’s relevant to you. Keep trying different things. I’ve read a lot of recovery stories and I can only think of maybe two where the person got better by just sitting on their ass and waiting. 99% of recoveries happen because the person was doing something about it, whether that be diet/exercise over time or trying different things until they stumbled upon something that clicked everything into place for them. The very nature of PFS means that what works for person X may not work for person Y or may even make them worse. You just have to keep at it.
I agre with you as regards keeping at it and that those who have had some kind of relief have found this through trying many different things. This illness makes us all very pesimistic, but we simply can’t give up on it. I would like to get more ongoing progress reports as regards the 2 current studies that are underway. I am really hopeful that an underlying cause will be identified.
I think once they prove PFS is real it will be a major breakthrough. Nearly all the doctors I have met do not believe in PFS. When it is proved to be real doctors may actually stop treating us like mental patients and investigate PFS.
I’m not sitting around waiting for a cure. I am living my life to the fullest I possibly can. If you are suggesting that it would be smarter for me to pump random drugs/steroids through my body than wait for the results of the two studies being done, well… I disagree.
Best of luck!
while i agree about taking care of yourself, diet, exercise, blah blah blah … this statement is poor in terms of having any real relevance
i do not mean this as a personal attacks, but the guys on the forum who give their opinion of the scientists not being able to “figure this out” etc., really is just talking, and it makes no difference, whatsoever
we are not scientists, we need to stop trying to dictate what they are or are not capable of in this whole mess … it is just not the right attitude for the community to have in general, and no one here can put any kind of time frame on the things that are going on
with that said, you are entitled to your opinion, i just think people should have the opposite attitude about the research (which is amazing) and the potential for treating our PFS, if they have the frame of mind that you do … i fully acknowledge that medical research and finding a treatment are a very serious undertaking, but again, no one can put a time frame or a likely outcome on the situation and have it be relevant to anything … and in the meantime, take care of yourself and try to get better the best you can
What gets me right now is that there is information out there that only some are privy too that could help us but we have to wait for it to be “Published” as we waste more and more days in our life. This could be years!!! There has to be some way we can get some news or information in what direction we should be focusing on to treat ourselves.
Don’t get me wrong I am extremely great full for all the recent advances and the time people have put into finding a cure, raising money, raising awareness, but I would like to just see something a little more focused for us to concentrate on rather then the zillion theories and regiments that people are posting about that seem to be ever so complex and in the end do not show anything but a waste of time and money.
It seems to me that the data is just being collected at the moment. It will be published when it is more conclusive. In the podcast thread, sounds like Michael Irwig will be interviewed in a couple of weeks. That should give you at least SOME information if you are desperate for it. We have made more strides in the last year than we have EVER. Allow that to feel promising.
I’m not going to argue about it. I usually keep my opinion on the matter to myself for that very reason. If faith in the foundation keeps you going, more power to you. I don’t want to shit on anyone’s hope. I’m just saying it would be wise to continue trying different things in the meantime. It’s not “taking random drugs” if you research what you’re doing beforehand. CDnuts did a lot of research into fasting and what androhard does and spoke with the manufacturer then gave it a go. He’s cured. Tryingnottoworry did a ton of research into dolichol-whatever and gave his spinach thing a whirl. He’s cured. This guy read about a few things on an impotence board and gave them a go. He’s cured. You just gotta keep at it until you find what works for you.
So you don’t have faith in Brigham and Women’s Hospital or Baylor College of Medicine, but you have faith in an anonymous Internet poster who took two pills then claims to have found the yet-to-be replicated cure for PFS with Google. Seems incredibly sanctimonious. But if you have faith in the raw spinach diet, like you said, more power to you.
And jumping on what Second Amendment said, and Cap this goes to you more specifically, no one knows what really was the X factor in getting better, again the common denominator seems to be time and the fact that some of these guys seemed confident that they were going to get better even before their “plan”. I am saying this as someone who hasn’t tried anything and I think I’m slowly improving. At some point everyone needs to wake up and realize that when 15 people claim to tell you that after x amount of years their 15 methods are the proven way to get better, that something else is going on.
With regards to finding a cure, the foundation serves as our best hope. I pray everyday that something breaks from all this. I found the Italian studies incredibly important and hope that they are being integrated into the work done by the two universities.
Btw- if anyone is interested, Dr. Irwig wrote another article with regards to PFS in the Journal of Sexual health and medicine. It basically isn’t adding anything we don’t know, but he does mention the Italian studies and the three patients with similar reduced neurosterodid levels.
I appreciate everyone’s replies to my original post on this topic. I was really just trying to get a pulse on how others stay positive while dealing with PFS and whether the Foundation plays a part in that.
Personally, I have hope in the Foundation as one of, if not our best resource for uncovering the fin/PFS relationship and a possible treatment/cure. It’s just that so many people here have tried so many different things with no positive results, that I was wondering what kind of treatment(s) can be uncovered that can help us.
While some may disagree with being patient and lettting the Foundation do its work, this is the approach I’m taking (at least for now). That said, I do appreciate members taking time to post and report on things that have helped them.
As I’ve stated before, I’m sure on a long enough timeline they’re capable of figuring it out, but that’s a very, very, very long time from now. Waiting around for that day isn’t going to get anyone anywhere. The examples I listed weren’t meant as 100% watertight paragons of scientific research and recovery. They were the first ones that came to my head. The point was to tell everyone to keep actively trying to get better, don’t wait around for the miracle cure. Hopefully at some point your brain fog recovers enough for you to regain your reading comprehension.
True, I definitely think some were natural recoveries and they attributed it to whatever they were doing at the time, but some were so sudden and radical after years of no progress it must have been whatever they were trying. Again, the point I’m getting at is to keep actively fighting the condition. Even if you’re feeling better naturally (for which you are very fortunate), you’d probably be doing even better or cured if you started working out or tried a fast or any number of other things.
No one needs you to tell him to try get better. That’s completely stupid to you think you’re adding value here by stating the obvious. You’re just too fanatical about these raw spinach “recovery” stories.
Yes, I am totally fanatical about the raw spinach story I’ve mentioned once in the year I’ve been on the forum. I was planning to start The Cult of Raw Spinach later this evening.
Cap- your a nice guy but don’t go into law. That’s the absolute wrong logical deduction to draw from the spontaneous recoveries. It is more logical to assume that over time the body corrected itself an symptoms reversed, especially since so many of them fall within the same time frame of 3+ years. To assume that suddenly different people at roughly the same time discovered a breakthrough cure is absolutely ridiculous and has no basis in logic. In fact one guy says after 3 years he just started to get better and admits he wasn’t really doing anything. Do you believe this it do you think he stepped into some magical treatment? The real problem with this site, and I know many of you guys are younger in your 20’s, is you don’t allow logic to dictate
I think cap is just saying that sitting back and waiting for someone to cure you just isn’t going to get you very far. That is pretty good advice for anything, and being active and having a positive attitude can carry over to your physical health. If you’re chasing a cure, at least you have some direction, a goal, and an idea or dream of how to get there. Oh, and eating more spinach never hurt anyone.
We’re all hopeful for more knowledge and awareness from the two ongoing studies, but let’s be real here, no one really knows what will come of the tests. And it’s probably going to be 2-3 years before the results are even made public. I really pity anyone who thinks that waiting for the medical industry for an answer before moving on with their lives is the best course of action.
It seems like we are saying the same thing here, in so many words. And I hope no one thinks I am arguing or anything, because I am not. I also encourage anyone to explore any avenue they feel is best for them. There was a time when I was a lot more into experimenting with different things. It was at a point in time when I felt like “nothing could get worse.” And personally, for me, nothing budged. No amount of spinach eating, paleo-dieting, alcohol consumption or lack thereof, supplements, drugs, etc made any amount of difference. As I approached two years, things seemed to naturally get more manageable. At this point, I am so afraid of regressing or crashing again (which some people do after methods they SWEAR by) that I feel strong enough to just say… I’ll wait. I spoke to people affiliated with the studies, and they told me they hope to publish the results and have them peer reviewed within one year. That was several months ago. So - I look forward to this year. Even if its three years, I can handle it. I recently got a very high-stress job bartending in a busy pub, and I seem to be able to do just fine (which I couldn’t before). So, my life is definitely on the up.
But again, feel free to try whatever works best for you. No one should tell anyone else how to handle this, because none of us have any clue. Best of luck to you all.
P.S. I DO like hearing about what has worked for others. I am just skeptical to try out too many things at this point in time. That may change down the line if something really promising surfaces.
I’m only 8 months into this hell (nothing compared to most of you), but it’s been devastating just the same. For what it’s worth, I am optimistic about the current research—at least for its ability to serve as a springboard for an eventual treatment. Concerning the time frame some of you have mentioned, any action (the launch of further studies or potential remedies) doesn’t have to wait for publication in a peer-reviewed journal. I would imagine the Foundation would be informed of the findings via some form of a write-up (perhaps as a stipulation of the grant) prior to the entire peer-review process completely unfolding. Even after an “acceptance” from a journal (not including the several months of review), it could be well over a year before the article is published. And that is assuming that it IS “accepted.” I’m in the social sciences, not the medical field, but I couldn’t imagine a situation where someone would inquire as to my results and I would refuse. Publicly communicating results about research prior to publication is what you do at professional conferences all the time.