[Quasar]

Guys,

I think my Pois is getting worse...Some time ago i needed 3-4 days to be at 100%. Now i need 1 full week, and even then, i still have symptoms. I don't know if it's because of the cold winter, but the throat pain, headache and skin dryness last a lot more...

Niacin is helping me, but the problem is that you need to plan your "o", 30 min - 1 h., and sometimes is not possible.

[Vandemolen3]

Guys,

I think my Pois is getting worse...Some time ago i needed 3-4 days to be at 100%. Now i need 1 full week, and even then, i still have symptoms. I don't know if it's because of the cold winter, but the throat pain, headache and skin dryness last a lot more...

Niacin is helping me, but the problem is that you need to plan your "o", 30 min - 1 h., and sometimes is not possible.

In my case POIS is much worse in winter. That's because there are more virusses in winter. And because of the dry air at home. And because of the cold. I get sick too for 2 weeks. So now I decided to have an O. only for my injections and wait until spring.

[B_Daniel]

Guys.

Daveman has taken a lot of time to create a survey for us.  Yes, the survey will be modified / added to / and improved in the upcoming weeks, so you will need to take more surveys.

But this isn't a bullshit AT&T asking you to answer questions on your customer service experience.  This is UNBELIEVABLY IMPORTANT.

When this is done, you will have the ability to sort through and find users with similar problems to yourself, and see what treatments work and don't work for them.  Also, this survey will be used by researchers later to help find a cure.

This is the next big step forward for our forums, and so far only a disappointing 8 people have filled it out.  This community can't help you if you don't contribute.  It takes 10 minutes to do, so PM daveman or Demo for the PW and please do it.

www.poiscenter.com/surveys.htm

[Finally]

I was looking through tv listings and Oprah winfrey network is showing the Strange Sex episode now (10:30PM EST Saturday)  And repeating at (1:30 AM EST Sunday) In US

Sorry for short notice.  I don't get that channel in  my cable  package 

[kurtosis]

Guys.

Daveman has taken a lot of time to create a survey for us.  Yes, the survey will be modified / added to / and improved in the upcoming weeks, so you will need to take more surveys.

But this isn't a bullshit AT&T asking you to answer questions on your customer service experience.  This is UNBELIEVABLY IMPORTANT.

When this is done, you will have the ability to sort through and find users with similar problems to yourself, and see what treatments work and don't work for them.  Also, this survey will be used by researchers later to help find a cure.

This is the next big step forward for our forums, and so far only a disappointing 8 people have filled it out.  This community can't help you if you don't contribute.  It takes 10 minutes to do, so PM daveman or Demo for the PW and please do it.

www.poiscenter.com/surveys.htm

Perhaps I'm not the only one but I'm having a problem logging into it with the login that enables me to get into the poiscenter forum. Is there another login I should use and, if so, it's not at all obvious.

[questforlife]

[/quote]

Perhaps I'm not the only one but I'm having a problem logging into it with the login that enables me to get into the poiscenter forum. Is there another login I should use and, if so, it's not at all obvious.

[/quote]

i too have tried logging in without success.  I think also it is not obvious...osrry guys, maybe its just me.  I requested a password but I have not been sent one, this was over 1 week ago.  Im keen to do the survey.  Please help

[kurtosis]

Perhaps I'm not the only one but I'm having a problem logging into it with the login that enables me to get into the poiscenter forum. Is there another login I should use and, if so, it's not at all obvious.

i too have tried logging in without success.  I think also it is not obvious...osrry guys, maybe its just me.  I requested a password but I have not been sent one, this was over 1 week ago.  Im keen to do the survey.  Please help

My apologies, read it again and noticed that I need Daveman to give me a password. I presume the username is the same as for the poiscenter forum?
Can you oblige Daveman?

[daveman]

OK, sorry folks. Yes, it's true, the password for surveys is unique, not the same as NSF or SMF.

However, I think I have simplified the process. To the same surveys page www.poiscenter.com/surveys.htm, I have added code which sends  the correct password to  your EMail.

If you have been using the surveys page, (url above) and don't see the place to click to receive your passwords, you may need to press "F5" to refresh your cache. You should see an extra paragraph:

"If you don't have your password yet, click here
and it will be sent to the EMail we have registered for
you in our survey system."

Clicking the word "here" will lead you to a page where you enter your NSF username. Submitting this will send your password to the EMail we have on register. Some of you may have changed your EMails since we created our database, or if you are new, the information may not be in our database. If you don't receive a password, it will still be necessarily to PM Demo or I to be registered or have your EMail changed in our database.

[daveman]

It was 10 hours after an O ! the next morning ! unfortunatly, I have a kind of constant POIS so it is hard to value...

OK, 10 hours is good!

[mellivora]

Hi everyone,

I'll be away for the rest of this month with little/no internet access - back in March. Unfortunately, as I've said, this means I won't be able to take on the reddit fundraiser, writing more letters to companies and other things on my to-do list, at least not until I get back.

Lately, I've had a lot of motivation to tackle POIS  I haven't always had this. Sometimes in the past I've been guilty of just wanting to get on with my life and enjoy things when I haven't had POIS symptoms. When I have been in POIS,  well  the motivation hasn't always been there either - that's a symptom of POIS!

There are people on this forum doing a lot of work to further our fight against POIS including several who have put in much more work than me over the years. I wondered a while back if it might be helpful to someone if I posted a message about why I've been so motivated lately. I started drafting a message...

Motivation comes and goes. Right now, I'm seriously motivated to do something about POIS. I haven't always been. I joined this forum in 2007 but I've had long periods of silence along the way. I understand how its possible to not visit the forum for months or read it without posting much.  I thought it might help to give some insights as to why I'm so fired up right now.

1. Dating
2. Being nearly 40
3. A chance to achieve
4. We're getting really close

1. I've been trying to get a relationship off the ground. I signed up to an internet dating site a while ago. Let me tell you there are some fantastic ladies out there. I've been on several dates and met one person in particular recently  I liked a lot. POIS has held me back when it comes to trying to take things beyond friendship. If, like me you've been avoiding seeking a relationship for a long time because of POIS, I can tell you that going on some dates has given me serious motivation to sort POIS out. Why? Because it properly reminds me and makes me realise what I've been missing out on - for years and years.  I'm still unsure whether its fair on the women for me to be on a dating site as a POIS sufferer but of course if I end up getting close to someone on there I'll explain things to them. Actually, a doctor I saw encouraged me to go ahead and start dating again and I was reassured that some people on here manage relationships despite POIS. Some are even married! When my POIS was at its worst, I would agree a relationship was out of the question. I'm at a stage when I'm still unsure but I can see its getting more and more possible.

2. I'm getting pretty close to 40 years old. I'd like to settle and have a  family. It feels like I'm light-years away from that. The clock is ticking and I feel I'm running out of time. If its too much longer, its likely I'll be left trying to start a relationship with a woman who can't have kids anymore. And I'll be a pretty old dad if I manage it.  If you're a lot younger it can be hard to get motivated by this. I know, I was there. Don't be fooled, time wastes quickly when you're in POIS.


3. I grew up used to achieving, in my case academically. 15 years ago POIS turned my life upside-down in ways that you all know it can. 15 years!!! And Demo's had POIS for 30+. In my professional life I haven't achieved what I planned to. I've underachieved  since I've had POIS (although I tell myself that I've done pretty remarkably given I have it). Through these forums I've realised that I have a chance to achieve something great. A chance to to beat POIS, make a difference and improve not only my life but the lives of all POIS sufferers present and future. I want to be able to look back and feel I made an effort and helped a little in the fight against POIS. For a long while I don't think I did make much effort. I wouldn't wish POIS on anyone. It feels good to have a sense of purpose and to try to help.

4. We are closer now than we have ever been to solving POIS and that too is motivating. POIS is more widely known and accepted than it has ever been. In 2007 it was amazing to find the forum and there were some great discussions but things felt a lot more helpless than they do now. We were scrabbling around in the dark. Now we have much clearer directions to go in. At some point I'm certain we're actually going to figure this out. I've been going on about the NORD fund lately. I want to meet that March 31st deadline. Maybe Prof Waldinger will announce he's solved everything. But I think its unlikely what he finds will work for all of us given the varying success different remedies have had across our group We've got a chance to start research on POIS. With it and the few people that are already looking into POIS, we'll have a much better chance of solving POIS for everyone.

I don't know what your life is like but, based on experience I think I can safely say it would be transformed if you didn't have POIS. I'm sorry if some of this sounds patronising, that's not my intention. You may be skeptical about the NORD fund. You may be right to be. But can you afford to take that risk? Please don't waste time. Fight through this. The time to do something is now.

There's never been a better time because we finally have doctors that are sitting up and taking notice. As I said, I've had POIS for 15 years and some have had it much longer than that. I feel like a huge chunk of that time, especially the early years of POIS was wasted/taken away from me. I don't want you to  reach this stage. For most of the time Demo and others had POIS, the condition didn't even have a name, wasn't recognised by the medical community and there were no fellow sufferers around to turn to. Please don't waste your life or sit back hoping someone else will do something about it and solve your problems for you because the days of POIS being unknown have passed.

Its easy to feel helpless but you're not. Here are some things you can do:

CCconfucius drafted a letter to send to companies. I did too. They're not perfect but they're a good start. Write to companies for outside funding.

We are trying to launch fundraising on the site reddit.com. Someone needs to take this on for us. Nightingale, it was your idea in the first place - and a great one at that. I don't want to put pressure on you, you've contributed greatly by just coming up with the idea but is it something you could do?

Make sure your doctor knows about POIS. He likely won't be able to help but you'll be raising awareness and paving the way to make things easier for other people in future.

If you are in the UK, or in a nearby country go and see or at least make contact with Dr Goldmeier in London. The more sufferers he sees and has available for studies, the easier it is for him to understand POIS and help us.

At least think about other ways of fundraising and suggest them on the forum

Fill out the surveys Daveman is putting together for us. Its important that we organise our data.

At the risk of being repetitive and losing the message through being long-winded…

Please take a serious look at how much you can donate to the NORD fund. In terms of the potential gains, I'm going to be bold and say that very very little is as important to you right now as resolving your POIS issues. I know especially when you are young, money can be very difficult to come by and to part with. I am not wealthy - not even remotely so. I've had my fair share of financial struggles, not least because of POIS. But trust me, money goes and money comes. If you part with some, you'll have more soon and you'll get by. In a year's time, money you give away now will likely not even register because you'll have found a way to make up for it. You might even be well on your way to being POIS-free. If you solve your POIS you'll earn more, that I am sure of. POIS-free! - don't pass an opportunity to make that real.

As I said, some of these are bold statements. I hope you have read this far because its important for me to acknowledge that I know pretty much nothing about any of you so forgive me if you feel I'm making sweeping statements I'm not qualified to make. But I do know what its like to have POIS for a long time and I know we've never had better opportunities or resources to do something about it. Help yourselves and your loved ones and don't end up looking back wishing you'd done something earlier.

[daveman]

BTW, over at SMF, I've noticed that the "read recent posts since you were last here" doesn't always seem to work. Not sure why. It says that there are no new posts, butif you look down you can see that there have been some posted.

So keep that in mind. Check the board below to see if there have been any posts made "Today".

[daveman]

Thanks for your post Mel. Yes, you have helped a lot and are helping a lot, very much appreciated. It's alot of work to take it on alone (figuratively).

We'll try to make your post last the 3 weeks you're away. I'll bet that Demo will even higlught out bits and pieces from time to time and repeat them. 

And yes, we are getting close. We have to keep the vision on the near horizon. Very soon it's all going to make it to the summit and then the pushing will be a lot easier.

We'll be glad to see you when you get back. Take care, I miss you already!

[demografx]

DEAR MEL,

DAVEMAN SAID IT ALL!

THANK YOU!!

All the Best,
Demo

[Stef]

Hello All,

I’ve read some of Demo’s and Daveman’s posts about the current survey that they’re asking everyone to fill out.  I was interested in what this survey consisted of, so Daveman shared a link to it, just so that I could see it.

I now understand the importance of this initial survey, and why each of you really will benefit by completing it. 

FYI, it consists of 21 very brief, general questions about the POIS experience, and should take no more than 10-15 minutes – at the most – to complete. All you need to do is check off the answers as they apply to you.

Daveman has taken great care to assure anonymity in this survey. Only your screen name, a password (to access the survey) and the email address that you provided when registering for the forums are required.

This initial, general survey will foster more specific surveys as time goes by. For example, Daveman is working on one specific to niacin usage right now. I'm under the impression that a very reputable researcher has expressed some interest in this!!!

These upcoming surveys – which will likely each be brief -- will connect data about POIS in an orderly, organized fashion.  The importance of this is MAJOR -- there  is no other repository of data on POIS – anywhere! 

Between the NSF and SMF forums, there is a ton of information about POIS.  But it needs to be organized. 

Researchers won’t be able to use your POIS data unless it’s organized and highly coherent. (The hope is that they will be able to formulate scientific data for POIS, based on your data. I think this is Daveman’s main point in asking you to complete these surveys). 

And -- YOU will be able to put some of the pieces of the POIS puzzle together more easily for yourselves.

It is definitely worth filling out this initial survey -- even for those of you who generally don’t post, have never posted, or are extremely private about the POIS experience. 

I needed some clarification about some of the questions, and Daveman did answer my questions.  Basically, for the few questions that ask you to rate a specific statement on a "1 – 5" basis – you need to check off each of the specific replies – even if they don’t apply to you.  You’ll understand this when you fill out the survey!

As far as a time/effort commitment from each of you – you’ll just be checking off boxes.


FYI -- I will never be privy to your responses.  Just letting you know! :-)

So go do it! It really will be a gift to all of you. AND IT'S CONFIDENTIAL!!

http://poiscenter.com/forums/index.php?topic=299.0

(Also posted on SMF)

[Stef]

Dear Mel,

That was an amazing post!!!

I miss you already also!!!!!

[questforlife]

Has anyone taken a supplement that has brought on feelings similar to what you get when your in POIS?  I have been experimenting again with different supplements and yesterday I took Alpha Lipoic Acid.  This stuff really sets me back which is strange as it was a low dose.  The symptoms I get with it appear within the hour and last for about 24 hours. They are very similar symptoms to my POIS:
Very poor co-ordination
Derealization
extremely poor lack of concentration / cognitive
Joint aches
Facial Muscles pain which effect my facial expressions / talking etc (this is my most unbearable POIS symptom which comes around straight after an O)

I thought it was strange how a supplement can bring on such similar symptoms and thought maybe there was a relationship between it.  Other supplements do make me feel much better and so I convinced there must be a chemical/neuro imbalance that is extremely sensitive. 

[CertainlyPOIS]

http://poiscenter.com/forums/index.php?topic=316.0

CAN YOU PLEASE COME OVER TO THIS SECTION TO SHARE HOW MANY YEARS YOU HAVE LOST AND WHAT YOU HAVE LOST IN THOSE YEARS AND HOW THOSE YEARS COULD HAVE GONE BETTER. 
COULD BE A GREAT STARTING POINT FOR REDDIT.

[B_Daniel]

Mellivora, your post was very moving.  They're the sincere reflections of someone who has suffered.  Every word you wrote resonates with me: the hope, the frustration, the call for action. So thank you for posting that, it meant a lot to me.

[badgerstripe]

Mellivora, your post was very moving.  They're the sincere reflections of someone who has suffered.  Every word you wrote resonates with me: the hope, the frustration, the call for action. So thank you for posting that, it meant a lot to me.

Thanks Mel fro your post, it was moving and great to read.

In retrospect i can see how POIS has wreaked havoc in my love life, it can seem to partners like i'm just not interested in sex - far from the truth!

I have an appointment with Dr Goldmeier in about 6 weeks time.

[demografx]

I couldn't help but chime in once again for mellivora.

Thanks, B_Daniel and badgerstripe, for speaking up about our great friend!