Finding a cure for 3 rare diseases? Not in our lifetime, it would essentially be the cure for baldness wouldnt it. Take finasteride if you get sick then we have a cure.
Can you attach the quote where you heard or read this?
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I believe they just made a proposal kinda thing and there wasnât enough interest to move forward. The institute probably already has a huge line up of things they are interested in pursuing. Which is why Iâm interested in pushing the YouTube project. This will drum up a lot more interest and make it seem less like an underground problem that no one cares about. From the outside this doesnât look life threatening or important enough. This needs to change. We need to pool together for this one, especially a multi substance video.
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I think your idea is great, I wish you luck. You should try to get yourself on the Rogan experience after. That would get a ton of publicity as well. Apparently he has had a strip harvest hair transplant but is clearly bald. He must have all kinds of stories of people taking finasteride being also involved in the body building world, and must have friends /celebrity friends with both good and bad experiences.
If I get you right youâre afraid that these researchers wonât continue with us as they fear severe consequences from big pharma?
I believe one of Rogans friends ari shaffir experienced extreme depression and was suicidal while on finasteride. They talk about it on one of the podcasts.
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Heâs had Mark Gordon on a few times talking about PFS and finasterideâŚI got treatment from him for awhileâŚHe costs a fortuneâŚ
Thanks , Iâll check it out.
Did you consider it worth it or not really?
What @bunny88 said seems to be the case more than anything.
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AFAIK, they werenât supplied with the 23andMe data, if thatâs what you meant, only survey results.
I personally wasnât involved in communications with them. The idea is to get a researcher interested enough to make it worth designing a study protocol, then see what could be done in regards to funding.
Yeah, I think after Baylor, researchers directly affiliated with universities should be avoided if possible. And I am forced to wonder how far the sinister hand of pharma reaches after BWH.
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âŚor something else.
Possibly just no capacity to take on the work. Perhaps he was offered something that was too good to pass up.
Thereâs no need to immediately jump to the worst case scenario.
We of course donât know why the researcher has decided not to go on. If we are to believe outspoken pharma critics like Gøtzsche however itâs unfortunately entirely frequent that big pharma enterprises massively bribe and threaten the government, research etc.
Something I couldnât have believed years ago actuallyâŚ
Anyway I do hope we find someone else to collaborate with and Iâm sure the admins know what theyâre doing.
On the other hand one also have to admit that EMA acknowledged pssd (sexual symptoms), renown doctors and professors are warning about pssd/pfs and research, even if rather sparsely, is taking place. So big pharma is influential but not omnipotent and there are professionals supporting and (potentially) advancing our cause. Itâs a twisted system.
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Thanks for the inputs Doomed. I ll see about getting new blood tests done. All these chemicals you listed, do they come normal for everyone? E.g - Are DHEA levels consistently low for us sufferers, or can it be normal too? Similarly for the other chemicals.
My reasoning for asking this is, why are blood tests useless for us. Nobody looks at blood tests here.
I thank you so much Crossroads for not giving up on me. I got tears while reading this.
I promise you man, I promise you I have put this condition off time and again and lived like its not there. My condition doesnât improve. This is why I have been quiet for the past months, I lived like I am ok and just came here to check on the people here.
I am desperate now because this has failed once again and I am at the end my rope.
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Guys, I am asking everyone, not just the mods. Please try and get someone onboard here who can talk to us actively. I have contacted the Indian doctors on PFS foundation. One said they didnât know a solution and the other hasnât responded. I have approached a MINIMUM of 15 doctors who either
- Scoffed at me
- Didnât understand me
- In one case literally pushed me out of the office.
- Sympathized but didnât express interest.
- Looked at my blood tests, told me I am fine
But there must be ONE person out there whoâs interested in helping us. The survey data and the 23andme data will help so much. WE WONT BE SITTING HERE FEELING HELPLESS if this person is online and we are in touch with them to go through all possibilities.
We can pay this person collectively.
We need research into this, we have had enough of trial and error and it has obviously not worked out.
But hereâs the issue with a research team, finding them is unknown ETA, supplying them info and convincing them to move in correct direction unknown ETA, waiting for their research behind closed doors UNKNOWN ETA, waiting for their results UNKNOWN ETA. This is what I said in the literal first post of this thread. Many of you have the patience to live like this until then. Me and A LOT of others canât simply live on without hope.
We can get a totally normal doctor here, no need for a specialist. Have them look at the data, have them look at the member stories, interact with them online in real time. And get their opinions. As soon as they hit a dead end, we ask them to refer us to someone else. That sinking feeling of hopelessness will not be there anymore.
I promise you guys this condition is not as hard to figure out as cancer or HIV. So many people here have been able to figure out some small portions of the etiology from their homes atleast. @Sibelio, etc.
Lets not wait for the big guns. Lets start now with the first thing we get. I have been trying to get someone onboard on my own. It didnât work out, THATS WHY IAM HERE BEGGING all of you. I m definitely not sitting here on my throne wagging fingers at the admins to bring me solutions. I am begging each one of you, to try now whatever we can do. Getting people to do survey is paramount, that is the data that is needed. This is where the diagnosis will start.
I have PMed the members of the reddit thread I linked earlier and I will try to get them here. I have been granted access to an isotretinoin side effects group last week and even found one person who has full blown PAS ( that group is about all side effects of iso, not just PAS). I will try to get them here.
I donât want to die thinking there was something I could have tried and I didnât. Please do it for me if not for no else. @Greek @Dubya_B mates, is there something wrong with this plan. I am not asking this gloatingly, I am asking geniunely if this plan might work out or not. What could be the kinks in this plan and what could we do differently. Obviously we need a full team for research in the ideal case, but we havenât been able to get that. As for convincing people for surveys, I am already on that. But that anyways will lead to a solution for the next generation and we are now.
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Or if we are not able to get a doctor onboard, fuck that. Lets plan a live meeting, discuss a possibility, all of us diagnose that possibility and move on to the next one. Obviously this is pretty much what we do in threads but atleast we ll be fast tracking the stuff.
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Blood tests are very important IMO for PFS and any other disease for that matter. Most fellas here and elsewhere usually jump into treatments solely based on anecdotal experiences from others who claim to have success with XYZ supplement(s) only to report later that their symptoms either (1) did not improve or (2) actually got worse. I too belonged to this same subset. We (humans) tend to look for shortcuts. We essentially come from different backgrounds and thus our biochemistry isnât necessarily the same. So it stands to reason that one needs to establish a baseline first for his current condition and try to look for any red flags that merit further investigation.
PFS isnât one single disease in my opinion, itâs more like the sum of all diseases that share similar profile e.g. low libido, depression, brain fog, tiredness, anxiety, anhedonia, ED and whatnot. Thereâre far too many issues that may lead to these same exact symptoms! Low Testosterone cause them, so does low E2, low DHT, inflammation, gut issues, adrenal insufficiency, hypothyroidism, infections, extreme stress, vitamin and/mineral deficiencies⌠etc.
And then thereâre those posters here who have used entirely other drugs and report similar symptoms as PFS. Accutane, SSRIs, Saw Palmetto, Minoxidil, Ketoconazole to name a few. Heck there are even a few posters who say they have PFS-like symptoms despite never taking anything.
So it stands to reason that one must try and find the individual root cause (s) thatâs causing the problems and try to target them first.
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I am on the same rope, but it does not have an end. All of us are hanging on and we have each other. Maybe it seems silly but it is really the truth. We are supporting each other, no matter if or when any kind of research study comes out or notâwe are here and we will remain here for each other. Ups and downs are okayâeveryone has them. We are not alone, we are connected. As my favorite politician says âmy spirituality is: we are all in this together.â
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I can appreciate the desperation and have been there for many years now. But asking a doctor, any doctor, to navigate through this uncharted territory will get us nowhere.
What can they do that hasnât been done already? How can wasting more time and money taking pot-shots be justified?
How can it be said that anyone has figured out any part of the etiology of this condition on their own until their hypothesis is tested?
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I donât want this to sound harsh, but I donât know why youâre asking other people to contact doctors. You could do that.
Every doctor has an email address, you have an email address. The majority of the world speaks English, you speak English. You are able to explain what you want to do, as you have done so here.
You could do this without any assistance from anyone else, instead of asking people here to do it, why donât you make the enquiries yourself? You donât need a team to send an email.
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And if you are feeling bad or helpless, remind yourself that it is just a feeling.
And join forces with us or one of us to do what you can do.
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