[hurray]

Another thought: $35,000 is what NORD wants. If we started more independently, who's to say $5,000 couldn't get us rolling? We should all think about the first steps and perhaps take it a step at a time, as they say, while we're looking for Bill Gates to write us a big check.

Absolutely - if we have some funds to offer, it's possible that the likes of Dr. Waldinger and Dr. Schweitzer may look into conducting more research into POIS. I'm not sure how you would go about fundraising on a forum, perhaps a combination of public and private pledges for funds towards a specific goal? Must catch up on my beauty sleep now  []

[martin88]

repetitive lab tests, scans, etc is probably more than 2000$/person (but this can perhaps be paid by our own insurances). So 5000$ seems to me to be low to conduct a serious study.
I think the money could be sent directly to NORD (?) or to the organization where the researchers are. But definitely they should find something for sure if we send money. At least they should be able to rule out some of the possible causes we have explored.

[demografx]

Good point, Martin. I just threw out the "$5,000" figure as a starting point, not for any significant research. But I think that the NORD email we initiated, and got a reply from, was good in that it now has us talking about the next step for more serious POIS research.

We also know that $35,000 is realistic for some research. Before that, I had no idea what a minimum might be.

[demografx]

I had nothing to say except that this is my 2,000th post on POIS!     []



                         

[demografx]

            To all: our naturopathic friend's been banned.

[demografx]

I think we're not so far of a research on POIS. If 100 pois sufferers give 350$ to the persons in charge of the research then it's the required 35000$ !

If we have some funds to offer, it's possible that the likes of Dr. Waldinger and Dr. Schweitzer may look into conducting more research into POIS. I'm not sure how you would go about fundraising on a forum, perhaps a combination of public and private pledges for funds towards a specific goal?

 

Martin, and hurray, I re-thought what was said and realized that we have had approx 150 individuals posting here at the POIS thread. Presumably, even though they're inactive, a Private Message to their username here will be forwarded to their regular email address!

And, possibly B_Jim has another 100 that could be tracked down from his out-of-forum research?

Perhaps we could conduct a small fundraising drive? Also, we might find additional willing participants for a POIS research study.

[demografx]

Maybe we should follow NORD's advice and create a more formal POIS Group?

For example, yesterday I noticed that the prestigious W. M. Keck Foundation accepts grant proposals from groups, but not individuals.

[demografx]

repetitive lab tests, scans, etc is probably more than 2000$/person (but this can perhaps be paid by our own insurances). So 5000$ seems to me to be low to conduct a serious study.
I think the money could be sent directly to NORD (?) or to the organization where the researchers are. But definitely they should find something for sure if we send money. At least they should be able to rule out some of the possible causes we have explored.

Martin, sad to say, there are no guarantees as to what the researchers will find - for ANY amount of money!

That's why it's absolutely critical for us to VERY critically review the researchers' credentials, and monitor progress, and generally be as fully involved as possible in the research study process.

[Dean93]

Hey everyone,

Now that the issue of funds is being discussed, I think this would be an appropriate time to seriously consider a POIS website, as it could be used to collect donations an further spread the word about POIS. While this is a great place for us, the sufferers, to converse, I think it's a  pretty generally accepted opinion that it, being so huge, is highly unapproachable to anyone outside of the group.

[hurray]

Congratulations on 2000 posts Demo - hope there will be many more milestones to come  []

Unless we eradicate POIS that is, then we wouldn't have anything to post about  []

[hurray]

I can't see how a fundraising drive would hurt - I would be happy to pledge some money - so long as it clear to everybody what we are raising funds for. If we are planning on PMing everyone who has posted here, we need to have a clear goal to aim towards. The $35000 to get NORD involved sounds like an excellent idea, I wonder if NORD could tell us how far that money would go?

Creating a formal POIS group sounds like a great idea - I consider everybody on this forum as part of the group, although I'm not sure how that could be formally recognised!

An official POIS website is a great idea - I hope somebody with the relevant skills and knowledge will build one some day! Whether we would need that to collect money or not I don't know - for example I mentioned to Demo that I would be happy to pledge $1000 towards POIS research if we fully identify a worthwhile way to spend the money.

Informal pledges via this forum may be the best way to get things moving initially - the money doesn't need to be collected until we have reached our target.

[Limejuice]

Raising money out of pocket for NORD seems worth while but some of us have insurance we can use. We pay for insurance so we can use it when were sick and help mitigate high cost of medical assistance. That sounds a lot like what we need for POIS.

[mat780]

Dear All,

I’ve been following the posts from time to time since the beginning of this year, when my andrologist told me that I had POIS (that same day I found this forum).
I remember saying, when he told me what I had: “Well… it doesn’t have a cure, but at least it has a name”.

In the same situation as I am (passive readers), I suppose there are probably many more.

I think that a POIS website would be a great idea to diffuse what POIS is. I believe there are thousands (highly probable a lot more) of people suffering the same as us, but they haven’t found this forum (as it’s a little hidden), and the only way to find it is when you already know that it’s called POIS.

Limejuice: Please, don’t get me wrong… but I doubt too much that your medical insurance company will pay for a POIS investigation in a million years  []

Thanks to all of you that contribute to this great forum!!!
Demo keep on with this hard work!!!

PD: I apologize for my writing; I’m not a native speaker of English  []

[hurray]

Raising money out of pocket for NORD seems worth while but some of us have insurance we can use. We pay for insurance so we can use it when were sick and help mitigate high cost of medical assistance. That sounds a lot like what we need for POIS.

If your medical insurance will pay to investigate POIS this would be an enormous help to everybody on this forum! I admit that I had doubts that medical insurance would cover an illness that so little is known about by the medical community, but I hope you can persuade your insurers to help Limejuice! Good luck and let us know what happens!

[hurray]

Welcome mat, hope to hear more from you  []

[demografx]

Limejuice, I agree. And I think that's because it's a bureaucratic route to take.

Which is only one option. We have a tremendous amount of resources and knowledge about POIS from the 2+ years at this forum, and we have a bright and motivated group of people here (with the exception of your moderator).

So one option is to simply raise funds, then spend them very, very carefully. At the same time, there's no reason we can't continue to send out appeal emails, like we did with WHO and NORD.

And what you point out about insurance is true. I've been working with a major university hospital's endocrinology program, and even though it's outside my medical-network, the insurance still covers quite a bit!

The brain scan, for example, cost about $3,000. I paid a tiny fraction of that.

[demografx]

mat780, welcome to the POIS thread of The Naked Science Forum!




Here are some POIS forum resources which may be helpful to you:

Please see "B_Jim"'s POIS Forum Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only study on POIS by Dr. Marcel Waldinger,MD and Dr. David Schweitzer, MD.

If you want a copy (PDF), send me a Private Message with your regular email address and I'll send you back the PDF.

To send a Private Message, click on "Messages" at the top of this page. At the Messages page, click on "New Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.

Remember to put a quote around my name, i.e., "demografx".


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition to serving our own informational interests, the resources listed above can be useful for you to show the medical world - which often shows little understanding and is sometimes skeptical of our condition - that POIS has scientific underpinnings and that POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapist community. This can help fight the immediate reaction of some: IT'S NOT "ALL IN OUR HEADS"!

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum for over 2 years, which has attracted over 100 POIS sufferers worldwide who have posted here, plus more than 300,000 page visits. Not bad for a rare malady!

[demografx]

mat780, this post below might help you find answers easier by tailoring a Google search to this POIS forum:

SEARCH POIS FORUM WITH GOOGLE

We have an overwhelming amount of data: over 2 years' worth of posts from 150+ Forum members.

In the Google search box, type
whatever you're interested in finding[space]site:http://www.thenakedscientists.com/

for example, I tried
demografx site:http://www.thenakedscientists.com/

and 1,000+ results came up for "demografx" within POIS Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.

[Limejuice]

Thanks Demo.

I've had over 10 doctor visits, over 10 blood draws, and over 30 hormone tests all for POIS.  And I've paid maybe $100 because of insurance.  As long as the doctor orders the tests with a diagnosis - it doesn't need to be called POIS, it can be called severe brain fog, or intense apathy or whatever because your sick and that what matters for insurance - insurance will likely cover the expense.  That's what it is there for and why we can use it.

[martin88]

At the same time, there's no reason we can't continue to send out appeal emails, like we did with WHO and NORD.

I agree, and that's why since last week I'm working on a form to collect emails. It was initially Counterpoints who talked in the forum about collecting emails, so thanks to him for this.

For the research I'd say that if the resarchers could contact our own MDs then insurance will have to pay, but perhaps it doesn't work like that. Maybe NORD can give more information about this because they know people who went through the same way.