PFS Foundation 2018 Annual Address from John Santmann

General Discussion Media & Awareness
#8

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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#9

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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#10

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.

#11

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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#12

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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#13

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.

#15

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.

#16

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 :blush: 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.

#17

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.

#18

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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#19

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

#21

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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#22

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. :slight_smile: 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. :):thinking:

#23

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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#24

Man, sorry for you. Do you know the story of Rife and cancer? Do you know all the things which can cure cancer or other diseases like autism? They are not allowed in some countries (having such things listed on a website is forbidden). Cause you cannot make money with it. But with chemo etc., you can. Man, even scandals cannot hurt pharma. Cause the law is on their side. Who do you think owns pharma? You should read more and investigate a bit for yourself. Do you really thing one of those guys would ever touch fin or get amalgam or vacc.? How do you explain the uprising rate of cancer in the first world? With genetics? We eat healthier than in the third world, right? Have the “better” medical system but the rate is much higher. I think you dont know a lot about medicine history. What a pity. But I respect your opinion. You know mine. And some people had this opinion prior to me. Even docs. You seem like a defender of this product. You really think that the obviously brilliant people in pharma didnt know what side effects could occur after having tested on rats? Really? If so, I cannot do anything for you re understanding things.

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#25

You sound bitter like they fed you finasteride, didnt you know how dangerous it was before you swallowed it?

#26

I took it for twenty years. You know the label at that time was completely different. Never would I have taken it now with the information to be found online AS well. I trusted docs, studies, science and pharma. I dont do at all anymore. Never would my GP given this SH . to his son, I am convinced. Lots of docs are psychop. Even today, they are lying to you cause dependent on pharma and your diseases in order to get a living. Every doc wants money. He only gets it when you are sick. Simple calculation.

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#27

Finasteride was not invented with the intention to help men. It was invented with the intention to make money. That’s a very big difference.

Merck knew full well what the side effects of Propecia would be, even before any clinical trials of the drug, as any competent researcher on Finasteride would. Prof. Belknap has said it too – that Merck must have known given the available studies.

The role of DHT for male sexual function was very clearly elucidated in numerous animal studies well before Propecia went on the market. This paper by Prof. Traish goes through some of the early animal studies on DHT and finasteride:

The point is, Merck knew this would happen but they saw an opportunity to get away with murder so they proceeded with launching Propecia. They knew that most people would not get the life-threatening side effects until many years later. This is all that mattered to them. For all intents and purposes, this is equivalent to deliberate harm. To this day, Merck denies the existence of PFS:

“Merck does not believe that reliable scientific evidence supports the existence of Post-Finasteride Syndrome. Merck stands behind the efficacy and safety profile of Propecia.”

They continue to advertise and sell Propecia to innocent men knowing full well they are going to murder a fraction of them and completely destroy an even bigger fraction. But first they are going to make a couple of tens of dollars of profit from each of them, so it’s worth it. This is pure unmitigated evil and absolutely no different than deliberate harm.

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#28

So glad the PFS Foundation is trying to find out scientifically what is wrong with us. I spent years buying dozens of different supplements that forum member recommended with no help. Certainly have given up on trying to cure myself. Mostly just eat well and exercise these days. Baylor must be on to something or else they never would have taken so long to publish. Gives me hope to hear Dr. Santmann state that they have made good progress this year. Let hope they publish their report next year and we finally have a scientific cause for our illness.

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#29

This sounds very promising
To be honest its just made my day it would be such a relief to know exactly what went wrong for us all and wouldn’t it be great to take the information back to those ignorant belittling doctors that don’t really put the heads into gear to help us out of this rabbit hole.

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