Damn I didn’t know that about the CEO’s son. Certainly affirms his commitment to the foundation.
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I take heart that SAGE was mentioned again. Of course, to treat pfs it must first be defined. But if the cause of anhedonia and the complete absence of motivation is because of lowered allopregnanalone levels then this could be promising.
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Yes, it’s exciting. It’s a cool thing to keep us all in the game together, too. Notice that there is some potential improvement around the corner.
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Sorry guys, Depression and anhedonia can be cured without stage. I did it.
This stage is nothing when not helping other stuff like physical or sexual sides.
CEO Frazier: Who are you?
I am Rambo, John Rambo.
What do you want from me?
It is judgement day.
Wtf?! No, please, dont shoot me.
I wont shoot you. I will kill you.
But you havent any gun, any knife.
Have something better for you. I have finasteride!
No, John, no, dont do it. Pleeeaaasse! I kill myself.
To late. You all had the chance to say the truth and help. But you neglected. It is showtime.
Of course, no human was harmed in this scene.
Why is this annual adress letter not on the pfsf. org site published yet? I mean for the public viewers ?
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Generally, I appreciate very much the work of Dr. Santmann and his Team. The loss of his son due to a drug is a thing most parents couldnt react or act normally afterwords. Not so Dr. Santmann though suffering heavily from that loss.
But a cure has never been invented or presented by medicine. A treatment of symptoms, yes. Always. I dont see any reason why it should be different with pfs.
Thats why considering suiciding myself was somehow always an option. I absolutely dont have a problem doing so. I think I dont need to justify this way as I paid for a very long time for a “safe” drug. And what did I get in return?
So, if people get aware that this drug leads to suicide and other brutal stuff, what publicity is that for the producer?
I am not sure if M.has even calculated that but is sure to be able to sell it in the future. I guess.
So, for me personally, the newsletters are very good to keep us fighting but do they have any effect on the public field?
Studies are delayed or not showing real helpful and evident results. It is clear, there wont be a cure. Everybody has to try out different steps. Best
I am very close with someone who has Multiple Sclerosis. She got hit fast and hard in 2009 with double vision, loss of motor control to the point of being wheelchair-bound, loss of balance, bouts of severely slurred speech, and depression with the infamous emotional blunting. (Melcagni and others have found drastically reduced 5-ar and 3a-HSD mRNA and neurosteroid products in the brains of MS patients, and I believe neurosteroid deficiency is the source of emotional blunting/anhedonia described by people on this site, after hearing this)
She was to the point of wishing for death and a gauntlet of failed classical MS treatments had made her feel much worse. Then along came a new monoclonal antibody. It turned her life around and she recovered much of her old self to the point of only having some residual effects affecting her balance, likely stemming from damaged brain tissue. Depression and emotional blunting is dramatically improved, according to her. 8 years of successful treatment and she is looking forward to a decent life.
Bottom line is that many who lost family members to the effects of MS encouraged research and undertook fund-raising initiatives, just as John Santmann is doing, and it finally worked! Perhaps not as an outright cure, but as something that has given many MS patients their lives back. Where would they be today if the primary focus was on a garbage pile of supplements, self-experimentation by aimlessly taking harsh drugs, and blind faith in woo therapies, rather than solid research into the disease?
Take a look at Hepatitis C, a life-long disease, and a flat-out killer in the past before liver transplantation. There are now several drugs that act directly on the viral RNA and replication mechanisms to eliminate the virus completely. It is a CURE, although our friends in the pharma industry are gouging the recipients.
All sorts of things on the horizon thanks to medical research.
It is clear that there will be a cure for PFS eventually. How long it will take will depend largely on patience and commitment to keeping the research going strong. It has already been said that the studies are poorly funded for all that is involved in the research. Considering what is at stake, how could this not be everyone’s primary focus?
Everyone taking different steps will result in everyone being lost.
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Well this was probably the most encouraging and happy post I’ve seen in a long time, thanks Dubya for sharing as i feel like the girl with MS now, broken in every way with no reason to live other than hoping I’ll get better, but that’s the thing, science is amazing and such a mechanism has caused this to happen to us, so i have no doubt it can be corrected, we where not born genetically with this, we where all “normal” till a trigger flipped, but fighting to get our old life or at least near to it is what we must do, it’s great to hear shes even recovered from double vision and other things, its very encouraging to hear that sort of stuff. I have no doubt in the next 10 years medecine and the way we look at recovering from injuries will be very different, regenerative medicine for nerve damage, joint damage etc, its all on the horizon thanks to science and the only way we’ll get there is helping them fund their research.
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If you believe in a cure, congrats. I do not.
And I dont want to wait 10 years and thinking maybe, there is a cure. I am trying my best in the next months and awaiting Baylor Studies. If nothing gets better, I decide myself how to leave and say thank you for this bs.
Mr. Santmann is an incredible man. He could have succumbed to his grieve like many parents that loose a child, or he could have tried to move on and ignore his grieve. Instead, he channels his grieve to provide help to other (young) men who go through what his son went through, although any help for us will arrive to late for his son. I am sorry for his loss and extremely grateful for what he is doing.
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You just said you do not believe in a cure but you’re awaiting studies that can help find an etiology to this disease, which can potentially help develop a treatment or cure.
With that said, 95% of your posts do not make sense and you continue to spam this site like you did over at solve. Help newcomers out, defend one position and stick to it.
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If you dont mind going once through my posts you can see that I am convinced that pharma and standard medicine will never find a cure. Though cancer is curable, they dont damit it and cure just the symptoms. If we can find the Route, we must find a cure privately means getting huge funds and let develop forex a private crispr Laboratory.
The other way round, never will be a cure. NEVER. And never FDA approved. This is my opinion. It would if ppl would pay the highest price. You are thinking in the box. Maybe you havent realized who stays behind the pharma companies and why fin was developed. Giving false hope is not good. Just distraction This is my opinion.
You don’t seem to understand how CRISPR works. We can fund studies to find out what is wrong with us genetically/epigenetically, and once we do that it’s a matter of just fixing the messed up genes with CRISPR. I make it sound very easy but it is that straightforward. Find out what’s causing these epigenetic issues and rectify them. The technology to do that will coming ahead very quickly, it’s the hottest thing in biotechnology, the hottest thing in science even.
I personally do not care if the same committee of fine men and women that allowed this disaster to happen do not approve the treatment. We can get the procedure done privately, the US is not the only place that has/will have CRISPR.
I’m very interested in Crispr especially the reverse aging properties it could unlock for humans, I have a lot of excess skin body wide now and it’s very odd, i can move it around easily, it’s very loose and my fat feels like polystyrene under the skin, soft and lumpy really terrifying and my lower arms sag and droop along with ever so slight facial sagging compared to me a year ago, but i only really see that. It’s either it triggered some genetic response which i doubt or it’s PFS doing this, regardless I’m hopefull since im so young my body can tighten up if it’s helped to do so with Crispr. Once i rule out all other options, Ehlers Danlos, Cutis laxa, mixed connective tissue disease i may try fight them legally as this all happened over the same time I crashed with my eyesight and libido etc. So frustrating seeing myself as I’m veiny and look ugly body wide now, but I’m still hopeful regardless 
you simply cannot give up, you can only go up from rock bottom and trying to stay positive. Might try upload a video sometime as a link of me moving the skin around just to show I’m not making it up.
Okay, so you maybe know some labs offering crispr. Of course, crispr could help. I wonder why the Baylor studies are delayed again. I assume that they have found something but dont want to communicate. I guess for a personal reason that those studies are surveilled. Yeah, surveilled.
So, they know for sure what crispr could do. But they dont want that. For sure. Fin was invented to destroy men. In turkey, it is not prescribed.
So, I am not sure if we will find the route.
We would need a private lab.
With all due respect noprop, Finasteride was invented for a different purpose but it was used with the intention of helping men, for prostate as well as hair loss issues. The FDA approves drugs to help people. That’s it’s purpose. To suspect Merck deliberate designing a drug to harm people is irrationally stupid at best and frighteningly delusional at worst.
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You better hope it doesn’t get worse…The physical part…I am up 90lbs still going from 160 to 250 now…This is insane my body is like mashed potatoes stuffed inside a pillow case is the best way to describe…Jelly like filled water all over pretty much
I’ve been through your posts and I am only left with conflicting opinions and word salad.
Cancer is variable and it depends on the severity of it. They can only treat some cancers palliatively due to metastasizing and extremely poor prognosis.
I respect your opinion but I also do not think you understand how CRISPR works or why we need these studies first before we can even think about CRISPR.
And if you’re alluding to you thinking Fin was developed as a weapon, I would argue highly against that. I understand you’ve been hit terribly by this disease and want answers but thats a delusional statement you are using to justify what has happened to you.
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I personally think you are making salad.
Sorry, re cancer you seem to know only the standard medicine way. This way is just symptomatic relief. It takes time to understand that there are different ways to cure even severe cases.
Fin = weapon It is not my idea and guess. There several people saying so before me. DHT blocking kills men. Periode. If you dont understand that matter, sorry for you. They have been researching other ways in order to reduce dht other than blocking 5ar.
A hint: Read all possible information and use your brain instead of attributing my comments to my state of pfs AS you dont know my state.
I am following crispr and can say that done inproperly it even can cause cancer if I remember well.
Important is just to wait and see if your strong believe in a cure is still there when the next five years will pass by without a cure. 
Then you can tell us how great all has been progressing since today and that it wont take a bunch of time to get a cure. :)
In order for something to be created as a weapon there needs to be intent. There is no rational explanation why Merck would want to deliberately create such a product if they are running the risk of getting sued big-time later down the track. It is essentially never in the interest of a company to make a product that will come back and bite them. IF you can’t provide a logical reason as to why a ‘weapon’ would be created, your arguments are null and void.
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