Hi Stefanie,
Thanks for the notification. That's very interesting. Just for our understanding, what would be the "deliverable". Is it the type of thing where they will characterize POIS sufferers and their symptoms etc. or would it involve a medical evaluation of a number of us? How would it differ from Dr. Waldinger's papers that characterize the spectrum of experiences and propose a treatment. Thanks.
Willem
Another good thing about the NORD program, aside from the anonymity, is that it's open to the public for donation once the account is openned.I clicked on the NORD-site. But is NOT possible to donate anonymous.
We can open a research fund with $10, and it's there for the world to contribute to. They have much more exposure than we do. Even someone who goes there for other reasons could find out about us there and help out. So inasmcuh as we need to cought up, we don't have to be the only ones.
Another good thing about the NORD program, aside from the anonymity, is that it's open to the public for donation once the account is openned.How did you organize that? Did they make over the money on your personal account? Or is there already a POIS-bankaccount? And is the 6000 dollars already spend?
We can open a research fund with $10, and it's there for the world to contribute to. They have much more exposure than we do. Even someone who goes there for other reasons could find out about us there and help out. So inasmcuh as we need to cought up, we don't have to be the only ones.
I think a POIS-account, trough NORD or in another way, must be opened very quick. So we can fund money. It would be wise if the money goes to dr. Waldinger and his team. They have a head start. So he can make a bigger team and things go faster.
As I explained to demografx and Daveman, and this is a major point that everyone needs to be comfortable with--you will not have a direct say in the direction of the research or in who would be awarded the grant. This is all determined by NORD's MAC. However, the RFP will be explicit about the goals of the study, and you can definitely have input on those goals. Since I've already explained this part to demografx and Daveman, please ask them to share anything I've written to them with you. There are no secrets about this.
I guess you probably are refering to Demo's post above right, I'll leave it to him to answer. Although I don;t think that any money ever changed hands, just offers.Yes I was refering to Demo's post. I thought the fund was already given. But if it is open for all researchers that is better.
BTW, Dr. Waldinger could apply to respond to the same NORD fund. It's open to ALL researchers in the field.
the pledges were just verbally declared nothing has been given yet.I guess you probably are refering to Demo's post above right, I'll leave it to him to answer. Although I don;t think that any money ever changed hands, just offers.Yes I was refering to Demo's post. I thought the fund was already given. But if it is open for all researchers that is better.
BTW, Dr. Waldinger could apply to respond to the same NORD fund. It's open to ALL researchers in the field.
We wouldn't want to gather all this money and have some researcher use it to look for psychological causes of POIS (when there are none), thinking all of our symptoms are made up in our heads......
We wouldn't want to gather all this money and have some researcher use it to look for psychological causes of POIS (when there are none), thinking all of our symptoms are made up in our heads......
This just isn't a concern of mine - it's really not. I highly doubt that the researcher carefully selected by NORD's MAC to try to help us further our cause, will be an ignorant pinhead whose goal is to prove that we're all a bunch of hypochondriacs.
I've been putting a lot of thought into this and I'd like to pledge a $5,000 donation.
We wouldn't want to gather all this money and have some researcher use it to look for psychological causes of POIS (when there are none), thinking all of our symptoms are made up in our heads......
This just isn't a concern of mine - it's really not. I highly doubt that the researcher carefully selected by NORD's MAC to try to help us further our cause, will be an ignorant pinhead whose goal is to prove that we're all a bunch of hypochondriacs.
B_Daniel, I really wish I could agree with you. But my personal 35 year experience - as well as the hundreds I've seen at NSF-POIS - suggest otherwise. STRONGLY.
Pinheads abound!! (Sadly). Regardless of their expertise in other areas (urology, endocrinology, etc.). Most recently, I was yet again shocked by Johns Hopkins' top endocrinologist's written response to "Pharaoh", a forum member (who posted at NSF) that "POIS is psychological"! And Johns Hopkins' sexologist and my mentor, Kate Thomas (whose boss works with this endo) is where I first learned about Waldinger's physiologically-based work and a Czech researcher who first steered me to investigating testosterone - - in 2002!
Pinhead "expert" right next door!
The issue isn't hypochondria, the issue is "psychological/psychiatric causation" of POIS, e.g., our intense sexual guilt/shame/fear/frustration/stress/excess is the genesis of POIS.
But you're right, it's a thin line between that and hypochondria.
And B_Daniel, actually I hope you're right about the careful NORD screening result and that I'm just hyperventilating :) I'm only suggesting that we keep an eye out for this recurring problem.
We wouldn't want to gather all this money and have some researcher use it to look for psychological causes of POIS (when there are none), thinking all of our symptoms are made up in our heads......
This just isn't a concern of mine - it's really not. I highly doubt that the researcher carefully selected by NORD's MAC to try to help us further our cause, will be an ignorant pinhead whose goal is to prove that we're all a bunch of hypochondriacs.
B_Daniel, I really wish I could agree with you. But my personal 35 year experience - as well as the hundreds I've seen at NSF-POIS - suggest otherwise. STRONGLY.
Pinheads abound!! (Sadly). Regardless of their expertise in other areas (urology, endocrinology, etc.). Most recently, I was yet again shocked by Johns Hopkins' top endocrinologist's written response to "Pharaoh", a forum member (who posted at NSF) that "POIS is psychological"! And Johns Hopkins' sexologist and my mentor, Kate Thomas (whose boss works with this endo) is where I first learned about Waldinger's physiologically-based work and a Czech researcher who first steered me to investigating testosterone - - in 2002!
Pinhead "expert" right next door!
The issue isn't hypochondria, the issue is "psychological/psychiatric causation" of POIS, e.g., our intense sexual guilt/shame/fear/frustration/stress/excess is the genesis of POIS.
But you're right, it's a thin line between that and hypochondria.
And B_Daniel, actually I hope you're right about the careful NORD screening result and that I'm just hyperventilating :) I'm only suggesting that we keep an eye out for this recurring problem.
Well I, perhaps naively, have much faith in the NORD MAC. I understand they have complete say in who is selected for the grant. Based on the RFP. The RFP is written by others, but we have the opportunity to look it over make comments and I think, even accept or reject it. That would be necesary I think. If the RFP is not to our liking, then we should be able to reject it and go somewhere else.
Where are we going to go if we can't find satisfaction at NORD? We'll just be jumping from the frying-pan to the fire. We aren't expert enough to make independant decisions about who the best researcher should be.
And I wouldn't want to let down our good friend B_Daniel et al here.
We wouldn't want to gather all this money and have some researcher use it to look for psychological causes of POIS (when there are none), thinking all of our symptoms are made up in our heads......
This just isn't a concern of mine - it's really not. I highly doubt that the researcher carefully selected by NORD's MAC to try to help us further our cause, will be an ignorant pinhead whose goal is to prove that we're all a bunch of hypochondriacs.
B_Daniel, I really wish I could agree with you. But my personal 35 year experience - as well as the hundreds I've seen at NSF-POIS - suggest otherwise. STRONGLY.
Pinheads abound!! (Sadly). Regardless of their expertise in other areas (urology, endocrinology, etc.). Most recently, I was yet again shocked by Johns Hopkins' top endocrinologist's written response to "Pharaoh", a forum member (who posted at NSF) that "POIS is psychological"! And Johns Hopkins' sexologist and my mentor, Kate Thomas (whose boss works with this endo) is where I first learned about Waldinger's physiologically-based work and a Czech researcher who first steered me to investigating testosterone - - in 2002!
Pinhead "expert" right next door!
The issue isn't hypochondria, the issue is "psychological/psychiatric causation" of POIS, e.g., our intense sexual guilt/shame/fear/frustration/stress/excess is the genesis of POIS.
But you're right, it's a thin line between that and hypochondria.
And B_Daniel, actually I hope you're right about the careful NORD screening result and that I'm just hyperventilating :) I'm only suggesting that we keep an eye out for this recurring problem.
Well I, perhaps naively, have much faith in the NORD MAC. I understand they have complete say in who is selected for the grant. Based on the RFP. The RFP is written by others, but we have the opportunity to look it over make comments and I think, even accept or reject it. That would be necesary I think. If the RFP is not to our liking, then we should be able to reject it and go somewhere else.
Where are we going to go if we can't find satisfaction at NORD? We'll just be jumping from the frying-pan to the fire. We aren't expert enough to make independant decisions about who the best researcher should be.
And I wouldn't want to let down our good friend B_Daniel et al here.
Please don't misunderstand: I HAVE COMPLETE, UTTER FAITH AND TRUST IN NORD.
I just want us to inject as much information as possible TO NORD about this medical bias that is so pervasive about psychological/psychiatric causes.
As I said, I hope that this overcautious approach is totally unnecessary with NORD! I certainly know that Stefanie Putkowski is perfectly aware of this bias.
Sorry if I miscommunicated: I am VERY enthusiastic about NORD!
I'd like to pledge $1,000 towards research.
before opening an account have you read this.
http://www.rarediseases.org/medical-professionals/research-grants/policy
go to donating for rare disease research.
it pretty much says if account dosn't reach a certain amount after a certain amount of period, the money money will be transfered to a general account of something similar.
if this rule is not flexible May be we should tally it up first within us before starting an account.
how do we know how much is in account, a meter will be cool.
how do we know how much is in account, a meter will be cool.
Not at all. Perfectly clear.
I don't have a lot right now, but even I could put 100$ for this, and over the whole time while it's developing maybe even more. As you say, it's not money that goes to something expendible or a doctor that needs to buy his 5 yr old another game for his Xbox 360.
NORD-POIS WILL BE THE NEXT BIG QUANTUM LEAP. So let's make it agoodGREAT one!
What I said, or tried to say previously, about contacting me re: anonymity -- is related to not receiving an acknowledgement (a thank you) from NORD if a donation is made through the web site.
I just made a $100 donation on the NORD website to the POIS fund!
I would be happy to donate $100 to begin with once the international donation page is up.
I will try in about a few days at the post office [to send in a NORD-POIS donation]. Thanks.
Just sent my first $100 to the fund. I intend to add at least $900 more to equal my original pledge of $1000 if it looks like we can get enough participation.
Come on everyone! Let's get this [NORD] thing cranked up and beat this ghastly thing we call POIS!!
http://rarediseases.org/about/support/research-donations/fg_base_view_p3
When the international credit card option is available on NORD, I will donate $ 1,000.
As soon as the international way of donation is efficient, I want to start with a 100$ donation and then see how the 33 500 $ are reached to put more money in the bank ;D
BIG THANKS to rock27 for extracting all emails from our POIS Survey Database. These names will be added to Martin88's work in progress of extracting usernames from this forum.
All names will be mailed a plea to donate to our NORD-POIS Research Fund!
I'd like to say I intend to donate to this fund and that it seems to be an incredibly worthy investment of money.
I gave 100$ for the POIS fund.
I just made a donation to NORD. Keep up the good work everyone!
I donated $100 towards the NORD research fund.
[From NORD:]"Thanks for your input.
Thank you for your donation! Your generosity will help us provide vital programs and services for the nearly 30 million Americans affected by rare diseases."
I just made a $100.00 donation to NORD for POIS :)
You can put me down to pledge $500.
i wish some billionaire in this world already has POIS and he reads this forum and donates all the money needed for the NORD research in 1 shot....
As mentioned earlier, no-one is really going to want to explain the meaning of many of the ideas we could put on a T-Shirt. But we might find something like "I Support Great Sex", or "Big O, V2.0".
Anybody have any ideas?
As mentioned earlier, no-one is really going to want to explain the meaning of many of the ideas we could put on a T-Shirt. But we might find something like "I Support Great Sex", or "Big O, V2.0".
Anybody have any ideas?
I like the ideas! I'm on a pois day so I won't be contributing creatively for a few days :(
i wish some billionaire in this world already has POIS and he reads this forum and donates all the money needed for the NORD research in 1 shot....
Haha that would be great! But there are about 1,000 billionaires in the world. So what's that? About .00001% if my math is right. And then about 1% or less of the population has POIS. So the odds of someone with pois ALSO being a billionaire... not so high :P.
Nope, I think we're gonna have to all pull together and fund this research ourselves. The good news is that the goal is very attainable! With everyone giving what they can, we can totally do this!
(http://i111.photobucket.com/albums/n159/crebello/Niacin%20Flush/NFsticker.jpg)
Hi Nordnurse,
Thanks for clearing that up. I was just surprised to see that POIS was on NORD's funding page but not on the information page. Make no mistake I'm very grateful for the existence of NORD, the help you have given us thus far and the huge potential for the future. Do you have any information about whether POIS is officially listed in the UK? I know there are UK researchers (Dr Goldmeier's team) working on it but I wonder if its on a national database. I know a couple of years ago, before the NIH listing, my GP coudn't find any reference on his database that supposedly covered every officially recognised illness. If its still not listed here, I wonder if there are steps I could take to get it listed in the same way Demo and Daveman did for the USA. I guess I could check with Dr Goldmeier next I see him.
Thanks again.
Good luck with this, and I hope you get listed!! Ophanet is a highly-respected database.
Good luck with this, and I hope you get listed!! Ophanet is a highly-respected database.
I have written to Orphanet today asking for POIS to be listed. I attached to my email the 3 papers by Dr Waldinger, the one by Dr Ashby and Dr Goldmeier and the Nature Review by Dr Farley. I also mentioned NORD, the NIH database listing, sent the address of both POIS forums and gave them contact details for Dr Waldinger and Dr Goldmeier. I'll post an update here as and when there's any progress.
It's interesting in the Orphanet listing that they list 3 "expert centres" in Germany under health care resources for this disease. It could be that these represent some of the people they consulted in verifying the existence of POIS, I'm not sure. It might be worth our while knowing more about this and I'll ask. I notice 'patient organisations' doesn't list our forums at present. I certainly made them aware of our forums in my original letter and I'll query this at some point.
Ah, just found this info about "expert centres"
http://www.orpha.net/consor/cgi-bin/Clinics.php?lng=EN
I don't want to wait until late 2013 or 2014 before we can get dedicated (NORD-funded) POIS research under way. At the moment, that is the best we are heading for.
We've got 2 months to get to our NORD target this year and save ourselves from waiting this long.
We've had some very generous donations recently but some of these are to be made over a period of months. I'm certainly no less grateful to the donors for this fact but it does mean the current NORD pledge tally can be misleading as it uses the total that will be donated by 2013, not by March this year. We are still currently not in a good position to make the March deadline this year. To me it looks like we're half way at best.
After we reach our $33500 target, it'll likely be some months before a researcher is appointed to work on POIS through NORD. It may be some time after this that work finally begins. I believe I'm right in saying that we really need to make the March 2012 deadline (2 months time) if we're going to see any benefits from NORD funded research within the next two years. There isn't a quick fix. But it'll be quicker if we begin now. Also, things will cost more in years to come. $33500 might not be the minimum required in future years, it might be more.
We have some things that help some of us (eg. Niacin, immunotherapy) at the moment. But these are not cures so far or 100% effective treatments. And we still don't know what causes POIS. We have much better theories than we used to and even evidence for some of them but all POIS sufferers are not the same and what works for some doesn't work for others. We need to push this if we're going to help everyone. We need to know what POIS is, what causes it, what varieties of POIS there are and use this to get as close as possible to being cured/ being POIS-free. For us and for future sufferers.
2 months is all we have. So far I have pledged $500. On the condition that we make the March 2012 deadline, I'm upping my pledge to $1500 (seriously, no clappy applause gifs for this please, lets just get that total)
Nordnurse, is there something as to big of a company when asking for donations.
i would like to donate something trought he nord website but it asks for our home address. will it ship anything?
i'd prefer not receive any stuff at home.
another question. if for example i want to donate 50$, should i put 050.00?
thanks
i would like to donate something trought he nord website but it asks for our home address. will it ship anything?
i'd prefer not receive any stuff at home.
another question. if for example i want to donate 50$, should i put 050.00?
thanks
Hi boissiog!
Nothing will be sent to your home address. Our Accounting and Development Departments are very aware of the POIS forum's anonymity request.
The home address is needed because a charge card is used. I believe this is always the case when a charge card is used online.
***We will NEVER give any information out to anyone -- this is a policy that will never change at NORD. Having your address on file through your donation is only because a charge card was used. All personal information is held in strict confidence here.
I'm notified of all research fund donations, so POIS fund donors will receive an email only from me -- acknowledging the donation and specifically asking if he/she wants a formal postal letter sent. (The letter would be for tax deduction records -- this really only pertains to people living in or doing business in the US). So far, only one person has requested that a letter be mailed.
I understand that our online donation page has some areas that can be confusing. So --
If someone wants to donate $50, just type in 50.00
If someone wants to donate $100, type in 100.00
If someone wants to donate $1, type in 1.00
Don't use any $$ symbols.
One more important item -- if you enter your donation information, press the "submit" button, and then receive an "error" message, please note the error number. Either post it on the forum or send it to me (PM or email). Our IT manager will figure out the error (often it's very minor) and I'll get back to you right away so that it can be fixed.
Last but not least, when someone makes a donation to NORD -- for any fund -- he/she receives an automatic email reply that states that a letter will be sent by mail, thanking the donor for the donation. Just ignore that!! We aren't automatically mailing "thank you" letters for the POIS donations. Instead, you'll hear back from me via email, as I just explained.
I hope this answered your question, boissiog.
Stef
Hi boissioq and demografx,
You're both welcome!
(Sometimes our online donation page can seem more bewildering than POIS!)
Stef
the praise is great guys but i was just trying to make due on the 700 i prosmise which is small compared to others
the praise is great guys but i was just trying to make due on the 700 i prosmise which is small compared to others
Thank you, "SPONSOR"!!!
This is an incredibly wonderful and motivating gesture on your part!
Demo
Much love for the sponsor.
i really dont know how to say thank you, what you are doing is incredible.
Much love for the sponsor.CertainlyPOIS -- your post is beautiful!
i really dont know how to say thank you, what you are doing is incredible.
My greatest gratitude to the anonymous SPONSOR.
I’ve donated $100 yesterday night.
Thanks,
Mat
My greatest gratitude to the anonymous SPONSOR.
I’ve donated $100 yesterday night.
Thanks,
Mat
Great Going Matt, you've been with the POIS movement forever!
You've doubled your money, Thanks!
Mat, you created 2 teriffic websites for POIS - can you post the links again?
Thank you!!!
My mother made a donation of 200$ and my father one of 300$ for a total of 500$ for NORD research :)
Message for everypeople willing to donate : benefit from the SPONSOR so that we convert our pledges into real research and the 33.500 $ is reached this month !
My mother made a donation of 200$ and my father one of 300$ for a total of 500$ for NORD research :)
Message for everypeople willing to donate : benefit from the SPONSOR so that we convert our pledges into real research and the 33.500 $ is reached this month !
My mother made a donation of 200$ and my father one of 300$ for a total of 500$ for NORD research :)
Message for everypeople willing to donate : benefit from the SPONSOR so that we convert our pledges into real research and the 33.500 $ is reached this month !
Very good going Mr. and Mrs. "Habibou"!!
Thank you very much. Thank your parents for understanding!!
This is a great message for us everybody! It is likely a lot better and easier to let family know. They probably understand more than you think.
I'll put the total up right away.
To Stefany from NORD. I've also sent this question to NORD directly a moment ago.
I would like to donate but I don't have a credit card and it's not an option for me to get a credit, debit or prepaid credit card.
Is there a way for me to just pay by bank transfer or by paypal?
Although it is common in the US to own a credit card, in many other countries it is not common at all. I think you will miss out on many donations this way.
Can you please respond as soon as possible? Because I would like to donate before the end of this month.
Hello Stefanie,
That's very nice, thanks. I'll contact you about it.
I think it should be mentioned on the donation page though, that it's also possible to donate by bank transfer, so you don't miss out on people who want to donate but can't use a credit card.
I've just donated $100. I hope more POIS Heroes join me.
This is not the first time I donate, but I hope this is almost the last time... if we all make a little effort today we can change our lives.
How much would you pay to be POIS free forever???
I don't live in the USA or in Europe, but I still donate as much as I can.
I can avoid having POIS by abstaining from sex... but that's not the life that I want.
Do it for your family, do it for your girlfriend, do it for the future, do it for you!!!
Come on people! Don't wait to your neighbor to donate (he doesn't have POIS), you are the only one that can change your future!!!
You've already donated a lot? Well... it's time to donate a little more. We are almost there!!!
$5, $10, $20, $50, every dollar counts!!!
As Demo said in another post, maybe there is one guy among us that can donate all the money we need... but I can't wait for a miracle to happen... and you?
Join the POIS Heroes movement by donating today!
Thanks,
Mat
I've just donated $100.
,
Mat
What a great thing !
When does the research start?
Just donated $250. I know its too late for the first grant...just found the site. Plan to do it again. Couple of questions: Are the research cycles yearly? Would there be any value in funding another research grant with a different company?
Just donated $250...Plan to do it again.
Any news on how the POIS research is going with the $30,000 NORD grant? Or any news on when there will be some more news?
hello
demografx
When will the [POIS] research [begin with NORD]?
thank you
This December.
I should be getting an update first week in December, maybe not who or what yet, but they are in the final throes of choosing the researcher.
So very soon we should know.
The first real professionally administered and controlled research on POIS.
Whatever the results, it will have to be useful.
I'll let you all know when the news comes out.
daveman
I and my Russian friends will be waiting impatiently
thank you
news? :)
Amijgoro, don't be concerned, everything is proceeding perfectly!
POIS GRANT AWARDED/ACCEPTED 5:00 PM EST THURSDAY EVENING!
POIS GRANT AWARDED/ACCEPTED 5:00 PM EST THURSDAY EVENING!
Excellent news Demo!
Thanks everybody for contributing to do POIS Research a reality!
We could say it's one of the best Xmas presents we could have.
Happy Xmas and happy New Year!!!
Regards,
Mat
Sounds promising. I hope he examines as many sufferers as possible. The wider the range, the better. Separate teams of people with mainly mental / mainly physical symptoms could perhaps help to faster establish a specific pattern.