I’m just putting my thoughts out there, it seems to me that a cure for this man made disease isn’t going to come anytime soon from medicine and I hate to get peoples hopes up but I’d rather be realistic even if there is reluctance to welcome the thought. Epigenetics is a fundamentally new thing and really only started to kick off about 5 years ago although it’s been around for a while. For me this signifies that it will take at least another 2 decades before we start seeing in-depth studies to undo these types of epimutations caused by pharmaceuticals and it will be met with great resilience from the industry who will absolutely try and restrict these types of studies coming out that undermine their products. At the end of the day medicine isn’t as advanced as people might want to believe they can’t even cure maladies like tinnitus and have been used basic treatment for cancer for the last 60 years- radiation and chemotherapy; although diagnostics have improved. It may be probable through an environmental stressor like extreme exercise that the body will try to adopt to it’s environment and try to reconfigure these pathways but this is all guesswork and it’s been said that methylation can be basically permanent throughout ones lifetime- I guess in honesty we are up shitcreek without a paddle and with that my health is certainly sinking like the Titanic.
Try to stay positive. What we do know is methylation is reversible. Try not to make up time frames you will only make yourself depressed. Things may not happen overnight but developments can. I watched a documentary where they developed a gene therapy cure and it was on the market in like 6 months. I don’t know if there’s much interest in curing tinnitus as people can live with it. Cancer is known for being incredibly hard to cure, I wouldn’t use this as a comparison. I see people say this constantly on here and then others read it and repeat it. This creates a negative perpetuation of something that’s not even relatable, leading the desperate to feel more hopeless. We may be up shit creek but maybe our paddles may start arriving soon 
Let’s talk about that. This is my only hope i think.
I made a thread about exercise and epigenetic regulation. You also seem to have read a lot about epigenetics.
How likely is recovery to happen through exercise and is there credible evidence it happens?
Man, please consider other people when you make a post like this. I don’t know what kind of response you’re looking for but hope is genuinely the only thing that keeps a lot of members on here going and seeing posts like this can tip them over the edge. You might be right, you might be wrong. But none of us know for sure and while that’s the case, posts like this are best served kept to yourself. It’s neither enlightening or helpful.
We have to have hope–things are being researched and we can do our own research.
I tend to read research on epilepsy, multiple sclerosis, alzheimers, Fragile X syndrome, and neurological stuff in general, since there is now scientific evidence that finasteride works against nerves and nerve sheaths. The research coming from Melcangi on this is interesting.
Papasmurf, what do you think we should do ? I have a meeting in Berlin tomorrow with a man who has pfs at 6:00 pm. We’ll be thinking.
You want to know my honest answer? If the foundation wants Finasteride banned and we want a cure then they need start taking on individual cases and running tests on those PFS patients to show that Finasteride has did irreparable genetic damage while filing lawsuits and building up concrete cases that will be hard to refute against in court- if we really got organised and got behind this I can promise that there would be a major paradigm shift in us getting to the bottom of this all. If we want to hit these scum it’s in the pockets. What we are doing now is the equivalent to writing an angry letter and hoping that the FDA say “yup, you know what you’re right Finasteride is bad we’ll stop it from being sold and admit culpability” it’s not going to happen unless there is significant patient complaints reported. Setting up a task force and using every credible tangible piece of evidence we have at our disposal to fight our cases in front of a judge and jury is the only way that I see making a real dent in this disaster. What’s a damn shame is that the majority of these cases could be worth millions that end up running there course after the statue of limitations expires and the cases then become worthless. We could do a trial run to see if we could win a case with one PFS patient and then if it’s successful repeat.
I’m honestly not sure from my understanding DNA methylation is basically a covalent bond and I’m not sure what type of stressor it would take to undo the damage.
The papers that I posted show that de-methylation of methylated genes is not only possible but it is unavoidable in a range of tissues from muscles to sperm cells under environmental conditions such as weight loss and exercise.
We need more posts like this. People here need a reality check rather than burying heads in the sand and waving the hope flag. That petition and a few suicides isn’t going to get Fin banned. If anything it’s stoked the bear and pissed off Merck which is bad for us.
The FDA is far more lenient to big pharma. I shown this in the vaccine video I posted on here. Everyone here needs to watch that video and wake up.
Fear is a powerful motivator. These forums have dined off hope for the past 10 years. What’s really changed? The suicides continue to rack up, the drug continues to destroy lives and there’s still no cure. We have no definitive piece of research that identifies the root cause of PFS. The survey is the best thing I’ve seen on this forum. It’s the one thing that along with the admins paper could provide the proof scientists need to study PFS.
What we need is to having a private lab or something. Im serious. We need few experts and a lab that is ours. So that we can collectively examine the problem by the first hand. I have no idea what those people in Baylor University have done all these years. I trust them but feel skeptic at the same time. I mean, epignetics is a new study field but people cure cancer now, so really? Is this stupid PFS is that hard to solve? I don’t think so. If it was that hard to solve, some people shouldn’t be able cure themselves with god damn Tribulus or something, makes sense?
If we somehow establish our own lab and close ourselves in that building for months, out from actual life, we may get something important. Sounds cartoon-ish but just imagine the possibilities guys. We have also scientists in our forum too and some doctors could be hired, i wish i was so rich that i can hire some experts for all of us… i keep imagining even a 8hr discussion and examination of our problem in our own private lab with hired doctors that ACCEPTS PFS and put their all effort and mind to our situation. That would be a fast game changer 100%.
The best thing we sufferers can do is donate to the PFS Foundation. It is funding real scientific research, not just anecdotes from people on websites, and it is getting the word out through mainstream and social media so more people (including doctors) will know about it.
Before I became disabled due to PFS and PIsoS, I worked in the biomedical field. Research takes a long time, it has to be well designed, it has to be free from cherrypicking, it has to get funded, it has to be retested. We are already seeing results of research that has been done.
**The law, the courts, Congress, etc., respond only when there is enough data from reliable sources and enough people make it a big deal. We need BOTH us to be activists and active in this cause, and we need more studies, not fewer, from different institutions all over the world, to get to that point. IMHO.
It’s incredible how you think everyone of us who has hope is doing so by burying our heads in the sand
This forum has a group of pessimists that like to paint themselves as the only rationalists, without providing any sort of evidence
I said people here and not everyone here, there’s a difference which I’ll leave you to figure out.
If you want evidence there’s 10 years worth of sand piles on this forum so start there if you like.
Feel free to respond but I won’t be wasting anymore time on this, best.
I’m incredibly optimistic: I am still alive, I have people in my life, I have tried different treatments for 20 years, I got some good therapy to help with the feelings that come with chronic disease, I am not homeless or walking around angrily shouting at people.
I also have experience working in the field that produces drugs and treatments. I am passing on what I know. So many guys do not understand anything about science and biochemistry and they end up jumping on every herb, supplement, diet, fad, without any critical thinking.
My Drs don’t like mainstream media articles on health they need good studies and research. I don’t feel that their media campaigns are actually being seen by those who use Propecia. What market research has the foundation done to determine the backgrounds of Propecia users? Next has it run campaigns based off this data to target specific groups? No. Its just ignorant. A 16 year old business studies student could do better.
Harvard was a flop, Baylor is Baylor whatever that means and Melcangi’s studies will not cure PFS.
Did Dr Santmann ask any of us what we thought before he submitted that Petition? Merck has reason to go after all their US studies. Merck likely influenced our Harvard study and we are sat here waiting to see if the same thing has been done to Baylor.
The Foundation is ticking boxes just not the ones we need right now.
Andrew35 if you like I can email you a hundred pages of scientific research you can show your doctors.
I’ve done this and it has convinced them of what Fin and other meds can do to the human body.
this forum is some sort of objective indicator of how fast technologies that could help us, mature?
how fast we can get new resources using unique methods?
you seem very intelligent.
i have experience in high technology. not biotech, but i understand how technology progresses and how it iterates.
im also optimistic
We have to be. Sufferers who are not suffer twice. I think we can help as much as we can to make sure we all have some hope. Things take time.