Free Flow Discussion about POIS

[Vincent M]

I wonder what sort of study we would want. I was thinking perhaps a brain scan of some sort of a group of POIS sufferers while they're in their worst stage of POIS similar to the PET/CT scan that found physical evidence for chemo brain. If we could prove beyond a reasonable doubt that our bodies undergo some physiological change during POIS it would be a great step forward into being more recognized by the medical community.

I'll have to read over the waldinger papers again since I don't remember how many subjects tested positive for semen allergy. If a decent number did then I suppose a repeat with a control group would be good.

[demografx]

                                               http://rarediseases.org/


POIScenter's Research Fund thermometer (above left):
Awaiting end of February for final tally of Promo
Final values must be confirmed. It won't hurt to go over as Stef writes below:

So, my suggestion --> if you men can afford to kick in a bit of extra money for your grant -- do it!  I have a sense that there will be numerous, excellent applicants for your one grant -- which will increase the chances of tied scores -- ending up with you having two researchers and two entirely separate grants!  So far, every time this has happened (3-4 times), the researchers have ALWAYS been thrilled to receive the funding -- even if it's reduced to half  of the the original amount.  They end up making up the difference from other resources within their institutions.  Our MAC checks everything, including what other resources may be available to the researcher and his team.

But if you men can't afford to kick in some extra money, it's OK!!!  It all works out, so I
don't want any of you to worry about donating extra money! It simply just occurred to me -- the tied-score possibility and -- best of all -- two, separate grants!!!!! I HOPE THAT HAPPENS!!!

Stef
 

[Suppertime]

Thank you everyone who donated!

If this means any remedy for our disorder, then I can finally live a normal and healthy lifestyle! Even if it takes half a decade to develop anything, I am still glad. Thank you!

[demografx]

We also thank you, Suppertime for your forum contributions

[demografx]

http://rarediseaseday.us/

[demografx]

Thank you everyone who donated!

If this means any remedy for our disorder, then I can finally live a normal and healthy lifestyle! Even if it takes half a decade to develop anything, I am still glad. Thank you!

I empathize greatly. I waited 30 long years for relief, starting with FORUM access (2007). A miracle of sorts.

[Daveman]

Everybody.

I am really sorry about having to have curtailed theoretical discussions and trial relating to POIS cause/remedy, but it really WAS effecting donations.
This was amply demonstrated in how quickly donations increased and continued until we made it to our minimum (AND BEYOND!).

So first I can't express my gratitude and happiness for the acheivement we have made.It is VERY RARE for a forum where nobody has even seen each other face to face, to be able to unite together and put tegether more than $33,000.

Second, given that the big pressure is off, I would like to invite (if you are so willing) moe continued conversation as to theories and ideas. At this point we will be having many researchers checking us out, and we don't want to leave any stone unturned.

I have my pet theories, as does everyone else. But I know I can't say that mine is THE theory, and the investigation and backing that we may put into it does not guarantee anything either, without a thourough and highly controlled program with pre-defined goals.

We cannot hope to implement the level of professionalism that is needed, none of us. But that said. We are a showcase, where ideas and concepts can be displayed for those who have the experience and knowledge to actually do something with it.


We will only ask that we don't use the forum as innocent guinea pigs. We are desparate, and will try anything. Until something goes terribly wrong.

So any tests must go with very strong and specific warnings and should all be accompanied by medical supervision of some type.

Remember, we are being watched by professionals. Let's try to give them something useful, something they would probably do (test) themselves.

Thanks for your cooperation and a job very well done.

BTW. I have checked with those who have made comittments, and I am assured that once details are managed, WE WILL BE OVER $33,500 US DOLLARS.

Congratulations to Amijgoro for being the sponsor who took us over the TOP. And than every donor on the forum, without your $5 or $12.50 we couldn't have done it either.

[demografx]

Major Congratulations to everyone again!

[Vandemolen]

I want to thank everybody who made this happen!

But this is still the beginning. We reached the minimum amount for the fund. Research is very expensive. So the guys who pledged money, but didn't give the money yet: please do.

[demografx]

I have checked with those who have made comittments, and I am assured that once details are managed, WE WILL BE OVER $33,500 US DOLLARS.

Congratulations to Amijgoro for being the sponsor who took us over the TOP. And than every donor on the forum, without your $5 or $12.50 we couldn't have done it either.

[demografx]

Research is very expensive.

Yes it is. This is why we are very fortunate to initiate a  "seed grant" -- paid for by POIScenter members.

But this first grant will hopefully attract even MORE funding (next time not $$ from us, but from Government and Industry!), once we have our first POIS research done that is conducted with state of the art controls, systematic theoretical testing and experiments, and top scientific medical research investigators.

[Stef]

Hi Everyone!

Some of you may know that February 28th (one week from today) is global Rare Disease Day (RDD).

Rare Disease Day was started by NORD's sister organization in Europe -- EURORDIS -- in 2008.  That year, the last day of February occurred on the 29th -- a leap day (a rare day!! -- one that only occurs once every four years).

We have a close working-relationship with EURORDIS, and partner with them on many international projects. Our missions are exactly the same -- to help people with rare disorders.

In 2009, EURORDIS invited NORD to be the official sponsors of Rare Disease Day in the US. We took on the challenge (it is a challenge -- a huge undertaking!) and have been sponsoring Rare Disease Day in the US since 2009.

Rare Disease Day is a MAJOR awareness-raising event that takes place around the world.  Here are the websites for the EURORDIS and NORD RDD sites -- in case any of you are interested in finding out what's going on around the globe for this event:

EURORDIS -- www.rarediseaseday.org
NORD -- www.rarediseaseday.us

***EURORDIS recently made a RDD video that I thought you might like to see.  It's unique -- unusual -- not what I expected.  I think it's a terrific video, and is only ~ three minutes long.  I think it really captures the message that rare disorders cause the same difficulties, regardless of where on this earth one lives.

Here's the link to the EURORDIS video -- http://www.youtube.com/watch?v=n6HReXaUUSw&feature=youtu.be.

I hope that it touches you.

Stef

[mellivora]

Thanks Stef! The film has a nice message that people with rare diseases are people like anyone else - with feelings, ambitions, hopes and love like anyone else.

-------

In my first post on the Naked Scientists forum back in 22 August 2007, I wrote:

"I'm not sure of the best way to make this condition of ours more widely recognised and researched but I think that is what it needs. Lets try and club together and work towards that."

On 6th September 2007 I wrote:

"We now have eight people on this forum (including myself) who have come forward with POIS or seemingly related conditions and I think the forum is evolving into a persuasive tool toward gaining wider recognition for our syndrome. I suggest we start (if you haven't already!) to make any sexual medicine professionals that we are in contact with aware of this forum thread to raise awareness. I have included the link to this thread in emails to two doctors well respected in sexual medicine  and I hope you are all ok with me taking this step. It seems to be all of our aims to raise awareness and get our conditions more widely researched. I'll let you know if I hear of any developments."

It took more people and in many respects bigger people than me to make it happen and I'm grateful to every one of you. It seems we'll get our research grant this year

Let's not forget John21 who made the first post on the NS forum. That was 6 YEARS AND 3 DAYS AGO!!! 6 YEARS!!! I think its inevitable given the existence of the internet that we'd have found each other although I'm glad it wasn't any later than 6 years ago! Feel lucky that you live in a time when we've been able to find and communicate with each other. Things could be much more lonely without this amazing technology, as they actually were for some of us for so long in the days when POIS didn't even have a name and seemingly wasn't recognised by anyone except the isolated people that suffered its life-ruining symptoms in silence.

Thank goodness for the likes of Demo and B_Jim and later Daveman who kept the cogs turning for so long. We've meandered all over the place but like a river we've gathered volume and momentum and managed to flow in roughly one direction. Soon a whole sea of people will know about us and hopefully we'll wash up on paradise island, POIS-free.

We all have each other and ourselves to thank. Here's to us, to NORD and to medics who want to help us. We are no longer just treading water. In fact we might have just built ourselves a raft..

[demografx]

Here's to us, to NORD and to medics who want to help us.

As B_Jim writes: "not to be confused with orgasm"
(we don't want to be responsible for any POIS as a result of viewing this post ).

[Stef]

Thanks Stef! The film has a nice message that people with rare diseases are people like anyone else - with feelings, ambitions, hopes and love like anyone else.

-------

In my first post on the Naked Scientists forum back in 22 August 2007, I wrote:

"I'm not sure of the best way to make this condition of ours more widely recognised and researched but I think that is what it needs. Lets try and club together and work towards that."

On 6th September 2007 I wrote:

"We now have eight people on this forum (including myself) who have come forward with POIS or seemingly related conditions and I think the forum is evolving into a persuasive tool toward gaining wider recognition for our syndrome. I suggest we start (if you haven't already!) to make any sexual medicine professionals that we are in contact with aware of this forum thread to raise awareness. I have included the link to this thread in emails to two doctors well respected in sexual medicine  and I hope you are all ok with me taking this step. It seems to be all of our aims to raise awareness and get our conditions more widely researched. I'll let you know if I hear of any developments."

It took more people and in many respects bigger people than me to make it happen and I'm grateful to every one of you. It seems we'll get our research grant this year

Let's not forget John21 who made the first post on the NS forum. That was 6 YEARS AND 3 DAYS AGO!!! 6 YEARS!!! I think its inevitable given the existence of the internet that we'd have found each other although I'm glad it wasn't any later than 6 years ago! Feel lucky that you live in a time when we've been able to find and communicate with each other. Things could be much more lonely without this amazing technology, as they actually were for some of us for so long in the days when POIS didn't even have a name and seemingly wasn't recognised by anyone except the isolated people that suffered its life-ruining symptoms in silence.

Thank goodness for the likes of Demo and B_Jim and later Daveman who kept the cogs turning for so long. We've meandered all over the place but like a river we've gathered volume and momentum and managed to flow in roughly one direction. Soon a whole sea of people will know about us and hopefully we'll wash up on paradise island, POIS-free.

We all have each other and ourselves to thank. Here's to us, to NORD and to medics who want to help us. We are no longer just treading water. In fact we might have just built ourselves a raft..

Mel,

How beautifully you write!!!

In the US a popular slogan is, "It takes a village."  

In the world of POIS -- it took a forum of men -- who often could barely eke out a living due to the disability that POIS inflicts -- to trust the process and make donations when they were able.

From my outsider perspective, one of the most amazing things to observe was the support and encouragement here.  If you men only knew how truly AMAZING that is!!!!!!

I keep thinking of Demo -- how he struggled for probably more than 50 years before realizing why he was struggling so terribly -- that it was not a personal character defect!  I guess we'll never know how he made it through.  (Even Demo says he doesn't know how he did it!)  

And then he had the fortitude to tough it out -- brave the push-back -- and forge ahead.

You have all passed an incredible milestone -- and you will not be disappointed.  I am certain of this!!  

There is nothing except solid, scientific research into this miserable, rotten, son-of-a-gun condition.

And just think of the countless others whose lives you will have vastly improved -- or even saved!

Stef