How will this End?

[Daveman]

This is a good place to also debate the question. I think it is vital that we decide a route for ourselves, one that is not going to go on indefinitely.

The results of this poll can fuel a more definitive debate to determine a functional structure for the forum that adapts to the desires of the whole.

We will likely be mixed, and that's not bad, our own contributions can and will feed the direction for more formal research.

There needs to be a place for chat and socialization just as there needs to be a place for the unpleasantries of donating, organizing and international marketing.

BTW even if we all vote that "Research is the ONLY solution", we still need socialization or if we all vote that "We can find the cure ourselves", at the very least we
need to better our public presence.

This poll will only set the stage for a more definitive debate.

[demografx]

Brilliant, Dave, maybe we'll finally know where we sit as a group!

[kurtosis]

Brilliant, Dave, maybe we'll finally know where we sit as a group!

I think we'll know where we stand/sit by how many votes are made in total. I saw posts on the NSF to the effect that there were hundreds of posters. Is this true and, if so, where is everybody. There are far less than a hundred active posters on this forum. Unless they're posting on topics I'm not seeing, there's less than 50. When it came to promoting the online funding campaign there was less than 30. These are just ballpark figures and I'm sorry if they're wrong but it seems the basic problem here is that there's only a small number of people willing to really engage. Perhaps everyone else is nervous or depressed or both. Perhaps they've given up on the forum.
I'm not blaming anyone, just saying that it does not seem realistic that we'll raise our funding target unless we can convince someone who has lots of money and a willingness to fund rare disease research to cough up some cash OR the hundreds of POIS sufferers start engaging and donating.

Even if a wave of donations come in, we may still need a lump sum from a philanthropic organisation. It's really small money for these organisations but a large amount for individuals in the middle of a recession/depression

Otherwise the pressure of raising tens of thousands will come down to tens of people, all of which would happily pay for the full amount if they could but none of which are capable of doing so.

I'm sorry if this sounds unduly harsh guys but I've got to say it as I see it.

[Daveman]

Well you've hit the nail on the head.

325 people here and 400 on NSF (most of which are the same) ARE willing to let 30 or so do all the dirty work!
And I don't for a moment believe that it's because only 30 have money to donate.

Almost all have $10 to spare, most have $100. And NO, it's not easy! Just ask any of those who have already donated.

As far as "it not being realistic that we'll raise our funding target unless we can convince someone who has lots of money and a willingness to fund rare disease research",
this is quite possibly right too! Our hope is that this "sugar-daddy" pops up from somewhere, but even that doesn't happen by itself.

We need to be seen, and recognized. We have been on international TV and in magazine and newspaper article. These have brought us the closest, and
probably represent our best hope. But we're more than 5 yrs old and still no "sugar-daddy". Who does all this work of publicizing and reaching out to people, make our name heard?....
yes those few 10s of dedicated individuals among us.

So what do we do? What more do we do? Not really a rhetorical question. All ideas accepted.

[demografx]

This is a great thread.

[kurtosis]

OK but why have so many people disengaged? If people are unhappy with something about the forum or are not finding it helpful then they should say it.

In terms of a sugar daddy (or mommy) we have a few possibilities.

• A celebrity or person who is quite well known with a high profile illness who can help promote our cause.
• Same as above but someone who is wealthy enough to donate some / all of the balance and help raise funding for future research (which will be almost certainly needed)
• A charitable organisation that funds medical research in general. e.g. Bill & Melinda Gates Foundation.
• Charitable organisations that fund specific medical research. For example in the UK there's an organisation called AMRC http://www.amrc.org.uk which is aware of all charitable organisations supporting research funding
• Combinations of points 1 and 4 above. For example see the press release from the American Autoimmune Related Diseases Organisation. http://www.aarda.org/press_release_display.php?ID=59

A list of organisations that fund research grants in the US is at http://phpartners.org/grants.html

[Green]

OK but why have so many people disengaged? If people are unhappy with something about the forum or are not finding it helpful then they should say it.

I used to be a regular poster on the NSF forum. For quite some time I've been plagued with severe issues in addition to POIS, although I always keep up to date with the postings on both forums, it becomes very difficult to engage and participate in the forum and in a state of POIS a sometimes reading a sentence can just become a collection of words so replying can be extremely difficult.

I agree we need to get more people participating, there's a better chance of reaching the target for research. I am working through my problems, as soon as I'm back on my feet I'd like to go through and deliver my pledge atleast.

[poisioq]

i think it's not only a matter of money but also number of subscribers on this forum, because the more we are the higher is the probability to get donations.
but also, supposing that we reach up our target and that for example the study will take place in USA and carried on human beings and not on rats , how many of us will be available for travelling or can afford it?
i think 300 of subscribers is a very small number.
i believe we need to let as many POIS sufferers in the world as possible join this forum for many reasons. because also we need their experience in dealing with symptoms as well as they need ours, etc...

before joining this forum i thought it was prostate issue, so i subscribed on the italian prostatitis forum (which is quite big) trying to find some cure for my prostate. one day casually i read about dr. Waldinger study on a newspaper, so i googled for POIS and i've found the NSF and this forum. I also found hundreds of blogs talking about the study.
So i think some way to find POIS sufferers lost in the net are the following:

1) i am sure in each country there is a prostatitis forum ( or UTI or Interstitial Cystitis or similar forums). we should subscribe on each of them and try to redirect pois sufferers from there to this forum. so we need to do it in each language. i've already done it on that forum

2) leave the link to this forum on each blog talking about POIS. i am sure there is at least one for every language

3) we already have a multilanguage post which describes POIS symptoms. i think we should put a multilanguage tread that also summarizes all the effective remedies we have found out  until now and most important about the NORD research fund

[Daveman]

OK but why have so many people disengaged? If people are unhappy with something about the forum or are not finding it helpful then they should say it.

In terms of a sugar daddy (or mommy) we have a few possibilities.

• A celebrity or person who is quite well known with a high profile illness who can help promote our cause.
• Same as above but someone who is wealthy enough to donate some / all of the balance and help raise funding for future research (which will be almost certainly needed)
• A charitable organisation that funds medical research in general. e.g. Bill & Melinda Gates Foundation.
• Charitable organisations that fund specific medical research. For example in the UK there's an organisation called AMRC http://www.amrc.org.uk which is aware of all charitable organisations supporting research funding
• Combinations of points 1 and 4 above. For example see the press release from the American Autoimmune Related Diseases Organisation. http://www.aarda.org/press_release_display.php?ID=59

A list of organisations that fund research grants in the US is at http://phpartners.org/grants.html

Yes, in part this is why I brought this thread up, to see what we are missing what more we can do.

As far as possibilities for a BIG donor, our small group of about 10 works on exactly these kinds of things just about daily. As you probably know, there's about a 10% response rate which is usually negative, so it's heavy going. I appreciate what these 10 (or so do, and that they can hang in there). It would be fantastic if we could multiply these doers. They're worth much more than donations!

I of course would love to do more, but just can't. We'll see if we can't get the above references somehow into the wheels of action. There really is a lot more going on in the background than is evident.. parhaps we should be posting more about that. When things don't go through (which is often), they don't get talked about... it's a lonely effort!

With any luck, we MAY have a celebrity on the horizon... but again, can't talk about it until it happens!

[Daveman]

i think it's not only a matter of money but also number of subscribers on this forum, because the more we are the higher is the probability to get donations.
but also, supposing that we reach up our target and that for example the study will take place in USA and carried on human beings and not on rats , how many of us will be available for travelling or can afford it?
i think 300 of subscribers is a very small number.
i believe we need to let as many POIS sufferers in the world as possible join this forum for many reasons. because also we need their experience in dealing with symptoms as well as they need ours, etc...

before joining this forum i thought it was prostate issue, so i subscribed on the italian prostatitis forum (which is quite big) trying to find some cure for my prostate. one day casually i read about dr. Waldinger study on a newspaper, so i googled for POIS and i've found the NSF and this forum. I also found hundreds of blogs talking about the study.
So i think some way to find POIS sufferers lost in the net are the following:

1) i am sure in each country there is a prostatitis forum ( or UTI or Interstitial Cystitis or similar forums). we should subscribe on each of them and try to redirect pois sufferers from there to this forum. so we need to do it in each language. i've already done it on that forum

2) leave the link to this forum on each blog talking about POIS. i am sure there is at least one for every language

3) we already have a multilanguage post which describes POIS symptoms. i think we should put a multilanguage tread that also summarizes all the effective remedies we have found out  until now and most important about the NORD research fund

Yes boissioq, it really is all about numbers. Both greater numbers in the base and greater percentage of those contributing.

One of our biggest focuses for the near future is to bring in more members. We were hit hard by the NSF ruling, it set us back about 8 months. We were on a roll, and the mechanism was torn down. So we have to restart it. Even so, not everything is / will be done at a forum level, however cooperation and participation of our membership is vital, and it was seriously damaged.

We are going to be undergoing an international publicity campaign, hitting more magazines, TV, newspapers, and stepping up SEO (Search Engine Optimization). In very small part, the international multi-language POIS symptoms descriptions are pointed at raising visibility to all parts of the world. As we step up the SEO, those will become more available to those looking for the solution to their POIS problems.

I would love to accept any and all ideas to help in this area... only problem is that our present active members are up to their eyeballs already.

But shoot away anyways.

I would love to put together some good incentive programs as well, to help stimulate participation.

[Daveman]

OK but why have so many people disengaged? If people are unhappy with something about the forum or are not finding it helpful then they should say it.

I used to be a regular poster on the NSF forum. For quite some time I've been plagued with severe issues in addition to POIS, although I always keep up to date with the postings on both forums, it becomes very difficult to engage and participate in the forum and in a state of POIS a sometimes reading a sentence can just become a collection of words so replying can be extremely difficult.

I agree we need to get more people participating, there's a better chance of reaching the target for research. I am working through my problems, as soon as I'm back on my feet I'd like to go through and deliver my pledge atleast.

Yes, I'm confident you will. Conversion of the pledges we have will  be a God-send. If we can convert a good portion of those we would be very close to our goal. Even with $12,000 raised, it's incentive to an outsider to help out. If we got it to $20,000, and I know we will, it will be easier still.

This first part is the hardest. Always is.

[BoneBroth]

We will find a cure ourself (many claims to have already) but others will not know about this and might not find the way to forums like this. Until Big Pharma will look into natural unpatentable remedies (which will never happen in the current western medicine regime) each and everyone has to find the cure themself. We should still TRY to make the school medicine to embrace any natural sollution that we find here and studies of such (miracles could happen right?). But there's a better chance of helping people by spreading the knowledge of such cures throught the Internet (make it easy found on google) and among natural therapists. Western medicine have yet not found any cures for things lika diabetes, arteriosclerosois, cancer, psoriasis, MS  and basically most of the hundreds of variants of the chronical degenerative diseases (and most are just variants of the same cause). Neither will they offer a sollution to POIS. Thats just how it is.

[Spartak]

I understand privacy ishues behind having a POIS, but no one is guilty for having an illness. And this would make such people heroes in this community.
I?ll explain.

I think for this to end faster it would be beneficial if someone would step out by a full name and a full story. As some did in that Dr Waldingers documentary.

At least you guys who happen to live in a big countries Canada, China, US, Russia, India, Brasil, UK, Germany etc
You have that advantage that you can reach huge audience, via all these TV shows about disiases, rare diseases , problems of people and-or  humanitarian organizations, funding organizations, and all other ways to make very public.
 
Big amount of doctors and researchers will hear about this, as well there would be a huge base of people willing to donate for a research, or to give some other support.
My my opinion.

[Muon]

Probably with a bullet through my head...and it has nothing to do with POIS. Society, which is a disgrace, is to blame.

[hurray]

I suspect that there are many different causes of POIS symptoms. Even POIS symptoms can vary greatly from person to person. What works for me may only work for 1% or 10% of other people.

The thing that links this community is that all of us have POIS symptoms triggered by O. There could be many different underlying causes, which might involve trying to find several different treatments. I would be delighted, but surprised, if there turned out to be one cure that worked for everybody.

[demografx]

Re: How will this End?

Probably with a bullet through my head...

please forgive me if I misinterpreted the above!
Demo


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