Back to the basics

General Discussion
#5

I agree that we should talk more with scientists and not just from the sponsored clinical trials. If anyone wants to cooperate on sending well thought gentle emails to some reasearchers about our case, tell them that some data are already available, tell them that we have a population that is reading to do testing and has been doing, and so on.

The reason this could be very productive is that we are in an area very close to the research on prostate cancer which is decently funded. So there are a lot of scientists out there who work day in day out with anti-androgens and receptors, albeit from a v ery different angle, who might be interested in staring a new line of research.

On a related point, but also could be very relevant on its own I was watching the following presentations:

[youtube]https://www.youtube.com/watch?v=OmwZwiiL61U[/youtube]

At 4:40. What you will see is a well documented case in SOME cancer patients of a Antiandrogen withdrawal syndrome of what she calls a paradoxical withdrawal, in which once they quit the anti-androgen therapy the PSA levels (which are typically high when circulating androgen are high) DROPS. They say this typically happen somewhere between the treatment is stopped to about 4 weeks after…

I thought it is interesting, might have to do with a similar paradoxical shock that we experience …

People in the know let’s get in touch…

#6

First things first, how about we draft some veteran members of the forum who have the most knowledge about pfs, with a diverse background and perhaps several theories about causes (even conflicting). Any suggestions? Once we have a group of people, they can have an initial chat and seek researchers either already working on pfs or independent.

So let’s start with you, numbduck. Who else to add? Ideally I’m thinking 5-6 people.

Maybe this is crazy but it’s possible that putting the right team together - pairing brains from the forum with scientists and researchers, may lead us somewhere. This isn’t to take for granted any of the work already being done either :slight_smile:

#7

Thanks nopecia. I think the idea is a good one and i would like to help implement it. I believe every small effort counts.

I am however relatively new to the site. The site has been up for 10 years or so, so i need veterans to guide me on where the knowledgable sciency veterans are.

I wait for recommendations from you, moderator or anyone who knows who would be a good candidate…

#8

We should call at least some medical students here. They have more time to help us and more open minded than doctors.

#9

Maybe I could start a new thread to ask everyone. Once we have a team we can talk about our actions. I’ve definitely been impressed by contributions of people who’ve posted here over the last couple of years, so let’s put those guys together, pool our ideas and see what happens.

#10

Sorry but I don’t think this would be a valuable use of researchers’ time. The studies are taking their own carefully-devised path and there is no way we are going to advance the research by having an internet chat.

#11

This isn’t the 90’s, the internet is as valid a way as any for people to collaborate. Indeed, the studies were a result of this forum in the first place and I am sure there are a few guys here whose knowledge on this topic rivals the researchers. Why? Well some of us are already very well educated and this isn’t about our livelihoods, it’s our lives. One conversation could spark a chain of events that cures this. Why rule anything out at this point? I’m not suggesting myself for any of this for the record. I am talking about nominating a team of representatives with the best knowledge to talk to researchers in the relevant fields and brainstorm.

#12

That’s what the PFS Foundation is doing. They have the authority, backing and connections to make things happen.

#13

True. Do you think that some of the knowledgeable members of the forum could contribute somehow? There may be some untapped potential amongst us. Just a thought.

#14

Nopecia was not suggesting this in anyway as a substitute for research, that would be crazy, he is saying that in addition it would be important for us to discuss these things between us - which is what the forum is partly about. The novelty here is that he is proposing for the sciency people to get together and talk on one thread, about ideas, theories, …

He is right that there are some really knowledgable people around and would be good to bounce theories and ideas with them…

Yes it might not lead anywhere, but still worth it for people like us…

#15

Cheers numbduck. You’ve got it and I agree it can’t harm to supplement what’s already being done. The hardest part will be figuring out who the most knowledgeable people on the forum are. Should I create a separate topic and ask for feedback?

#16

Numbduck, do you think we have 5ar receptor damage or deficiency? I searched 5ar deficiency symtpoms on net but didnt find big things.

#17

Nopecia sounds a good idea. I agree it is hard, people come and go but let s try. Let s call on the biologists and endo-geeks to identify themselves and let s keep the discussion moving.

Depressed guy, short answer i don’t know, but as i suggested earlier another hypothesis that has merit is that 5ar is not what is causing the sexual dysfunction but rather the problem is at the androgen level and the receptors, the latter most likely given the normal results for many here. I discuss my thoughts above.

#18

By the way I agree with your idea about the signature thing. I just joined a forum for Chronic Pelvic Pain Syndrome and it’s pinned that members must offer a description in their sigs.

Here is the post:

Copy and paste the exact code below into the signature area of your profile, and fill in the missing details. Do not remove the formatting codes.

[color=grey][size=85]Age:  | Onset Age:  | Symptoms:  | Helped By:  | Worsened By: | Other comments: [/size]

It would probably help us understand each other a little quicker.

#19

The Theories section already exists and is littered with dead end theories, red herrings etc from armchair scientists for nearly a decade now. Personally I’m done with theorizing, I leave that to the scientists who have the education, knowledge and abilities to investigate the root causes of why Finasteride causes side effects to persist. Hence why studies are underway. If you’d rather discuss yet another theory, feel free but do not let it detract from the real goals – raising media/social awareness of PFS, holding the drug company accountable, contributing funds towards future research and the PFS Foundation.

#20

Agree with Mew, to many people are jumping to conclusions based on their own crash experience. Best to just participate in official research. I got my appointment at Baylor. How about you? Help us close out this round of official research so we can move on.

#21

Mew definitely there is no reason to think that discussions should detract from the studies, I can’t see how, particularly that the forum is giving due priorities, publicity and emphasis wise, on the studies.

As I said I was one of those who did not qualify for the trials. But even if I am participating I would still be interested in discussing things here.

I understand the studies had low take up, I wonder why that is the case and whether we can do something about it. Approach each member and ask them to make the call and tell them we are ready to compensate…

#22

From wikipedia

Italian study shows we have altered neuroactive steroids, so this may cause androgen upregulation.

Root cause may lay on neuroactive steroids…

#23

I agree with Mew and mcibofh.

People have tossed around theories on the forum for years with 0% returns. Now some members are proposing to increase the amount of time wasted. Are you unable to learn lessons from what has already happened?

The areas where we can exert influence are, in no specific order:

  • Raising funds to donate to the PFS Foundation
  • If you can’t afford to donate, working on increasing your income so that you become able to donate
  • Working on media awareness projects/PR
  • If you are not aware of PR techniques then look at blogs or read a book on the subject until you can assist
  • Participating in studies
  • Encouraging others to participate in studies
  • Raising awareness that there are open studies waiting for participants

These are vitally important areas. If we invested the same amount of time into these areas instead of pointless theorising, we would get significantly better returns.

The map which nopecia made was a good idea and interesting to look at, seems like it would be a good PR tool.

#24

Thanks. I think I’ll add it to my signature. According to my stats it’s only had 68 visits, so it’s certainly underused considering how powerful it is.