[martin88]

Am just curious when the other forum gets bigger and starts becoming more of the focus of attention, it is going to result in NSF traffic reducing which will result in NSF loosing its ranking in search engines.  i was wondering if there is a plan for that in the future.
I know one way is to index the new site in google and also find ways to broadcast the site around the internet and also volume helps.

I remeber it took three years before NSF went up to number 1/ number 2, we cant afford that with the new forum, if it is becomes the main focus.

Hi CCconfucius,

Huge though our thread is, the POIS posts only account for a fraction of their overall traffic. TNS has an enormous PageRank of 7/10 - by comparison, the Yahoo directory has a PageRank of 8/10 (10/10 only goes to the likes of Google, Youtube and Facebook). There is so much POIS-related unique content on this forum that this thread will always rank highly for POIS and its accompanying symptoms.

No matter how big the new forum gets, it will always be a lot harder to find due to its relative obscurity (with regards to search engines). Not much we can do about that, but there will always be plenty of new posters coming from TNS.

Plus I don't really think the traffic on this thread will slow down too much, if at all. More and more people are discovering POIS, especially since the recent major news coverage. It was only a short time ago that we passed the 1,000,000 views milestone - we are already past 1,100,000

Since the new forum allows a variety of simultaneous discussions to take place, I find myself logging in and posting things that I would not post on the TNS thread - I don't want to clutter this thread up with too many posts, not an issue at the new forum. I suspect many TNS regulars feel the same way, and traffic will continue to grow at a healthy rate on both forums.

This thread keeps me up to date when I don't have time to go through the other forum - when time is plentiful, I can contribute over there also. A win/win situation for everybody.

Interesting point Hurray with page rank, thanks for that. I tend to agree the traffic here will never decrease for the pages already indexed but we have to make sure our traffic will continue to increase, and this is not done by posting in a hidden forum.
TNS pagerank is 7/10 but the first page of the POIS forum is only 3/10, proof that Google treat it separately than TNS, at least partially. There are other topics at TNS with 0/10 pagerank. Maybe it's the number of links toward the topic that make the difference and perhaps for a small part the number of pages with the same title...
It would be really nice to have a main forum bigger than what we have now at TNS and very well exposed in search engines with a good pagerank.

An other point about search engines, Google does not recommend to have duplicate content within or across sites. I don't know if cross posting can be considered as duplicate content. After years of doing this the amount of duplicate can be huge but I would not think it's a problem if only a small part of each page is duplicate.
From Google guidelines:
http://www.google.com/support/webmasters/bin/answer.py?answer=66359

[demografx]

I just got diagnosed with vitamin D deficiency after getting a low result on a blood lab.  !  Apparently this can make one very sluggish, and has been connected with depression.  I'm on a 3 month regimin of supplements, with a giant 50,000 unit dose once a week for 3 weeks.  I'll let y'all know

Very interesting!

[daveman]

I just got diagnosed with vitamin D deficiency after getting a low result on a blood lab.  !  Apparently this can make one very sluggish, and has been connected with depression.  I'm on a 3 month regimin of supplements, with a giant 50,000 unit dose once a week for 3 weeks.  I'll let y'all know

Vitamin D does seem to help feel better. The effect that sunshine has is notable (on many of us) I wonder what dosage the sunshine gives, because it seems to be just right without causing side effects.

From what I've ssen over time ( on NSF ) is that it isn't a cure, but helps the symptoms.

That's the problem with doctors unfamiliar with POIS, they see the defficiency as THE problem, and treat it as so. And it's NOT. It's a side effect. I wonder why they don't ask WHY we have the Vit. D defficiency? That's a question that even a lowly engineer would ask.

[spence23]

Hey all, I've stumbled on these forums about 6 months ago but could never bring myself to post.  I've been dealing with some form of POIS for almost 10 years now.  Similar to a lot of other people its been a horrible thing to deal with but somewhat manageable with the ups and downs.

Unfortunately about 3 years ago the "ups" stopped altogether, it went down and has just stayed there.  I only managed to the read 75 or so pages on the forum so i'm not sure if this has happened to anybody else but i'm sure you can all understand that finding a solution to a rare variation of an already rare condition has left me extremely frustrated and tired.

Lately it seems like i have nowhere else to turn, nothing more to try, so at this point i am looking for ideas or suggestions from anybody on something to try.  Could be medication, could be therapy, could be herbal remedies, anything at all.

Any input would be greatly appreciated, thank you.

[daveman]

Hi spence23,

There are several others who have very little to no "up" time, and me myself, sometime feel as though the up time is reducing.

I've had it now, maybe 6 to 8 yrs. and over that time it's gotten progressively worse. But whereas 2 yrs ago, I had definite up's and shorter downs, now it's the opposite.

The main POIS cycle lasts me anout 4 or 5 days, but some residual symptoms extend up to 2 or 3 weeks. I usually never make it that long between O's so I'm almost always with something.

Fortunately for me my cognative symptoms are not strong..... they only last up till day 3 perhpas.

Anyways, I think you've come to the right place. Whereas we still don't have serious enough definitive results to say we can implement someting sure for anyone, we're closing in on several good possibilities.

There'll be lots of things here meantime that I'm sure will help to relieve symptoms. Also visit our other forum too.

[rock27]

Spence,

For me: 15+ years of experience.
I am also in POIS most of the time and it is very frustrating to never have a good condition, while I exercise a lot and don't drink and don't smoke.

Anyway, statistically our situation has never been as good as now!
Dr. Waldinger published 2 studies in January in a scientific journal. He advocates it's an allergy and he has treated 2 POIS patients using desensitisation therapy. One patient has 90% success, and the other 60%, so far.
What can you do? Contact allergy clinics / universities close to you, give them the Waldinger papers and get tested.

We don't know if this allergy applies to all of us. Some others on the forum have had low testosterone levels and were treated for that, so you could also check for that. There's probably some more causes but I can't think of them now.

For a quick solution:
- For allergy: The use of anti-histamines (like used for hay fever) has seen mixed but not too encouraging results on the forum. I notice a difference, but far from a cure. Or try remedies to reduce inflammation.
- Testosterone: There are plenty of herbal remedies for more energy.

[spence23]

Thank you both for the reply's, its always comforting to hear about other folks getting results from this.

The idea of Testosterone is something that intrigues me, its always something that i couldn't help but felt i was missing over these last 3-4 bad years.  However i'm not very up to date on supplements/remedies, would anybody be able to recommend some Testosterone supplements available in Canada?

Also i know its asking alot but where might i find the papers from Dr. Waldinger? 

[Animus]

Thank you both for the reply's, its always comforting to hear about other folks getting results from this.

The idea of Testosterone is something that intrigues me, its always something that i couldn't help but felt i was missing over these last 3-4 bad years.  However i'm not very up to date on supplements/remedies, would anybody be able to recommend some Testosterone supplements available in Canada?

Also i know its asking alot but where might i find the papers from Dr. Waldinger? 

No problem at all! You should be getting a welcome newsletter from demografx soon. It has a lot of great reference information in it- including on how to get the articles.

[John21 (OP)]

Hey all, I've stumbled on these forums about 6 months ago but could never bring myself to post.  I've been dealing with some form of POIS for almost 10 years now.  Similar to a lot of other people its been a horrible thing to deal with but somewhat manageable with the ups and downs.

Unfortunately about 3 years ago the "ups" stopped altogether, it went down and has just stayed there.  I only managed to the read 75 or so pages on the forum so i'm not sure if this has happened to anybody else but i'm sure you can all understand that finding a solution to a rare variation of an already rare condition has left me extremely frustrated and tired.

Lately it seems like i have nowhere else to turn, nothing more to try, so at this point i am looking for ideas or suggestions from anybody on something to try.  Could be medication, could be therapy, could be herbal remedies, anything at all.

Any input would be greatly appreciated, thank you.

Spence, here is what has helped me:
1. Avoiding milk products (this was just recently reinforced) and  2. Consuming anti-inflammatory foods like sweet potatos, blueberries, etc.

For herbal supplements Relora has helped, nutmeg (the spice) has helped ( careful: is dangerous to take too much), and fenugreek has had an anti-depressant like effect. 

[hurray]

Interesting point Hurray with page rank, thanks for that. I tend to agree the traffic here will never decrease for the pages already indexed but we have to make sure our traffic will continue to increase, and this is not done by posting in a hidden forum.
TNS pagerank is 7/10 but the first page of the POIS forum is only 3/10, proof that Google treat it separately than TNS, at least partially. There are other topics at TNS with 0/10 pagerank. Maybe it's the number of links toward the topic that make the difference and perhaps for a small part the number of pages with the same title...
It would be really nice to have a main forum bigger than what we have now at TNS and very well exposed in search engines with a good pagerank.

An other point about search engines, Google does not recommend to have duplicate content within or across sites. I don't know if cross posting can be considered as duplicate content. After years of doing this the amount of duplicate can be huge but I would not think it's a problem if only a small part of each page is duplicate.
From Google guidelines:
http://www.google.com/support/webmasters/bin/answer.py?answer=66359

You make a good point about the difference between the TNS pagerank and the POIS thread internal pagerank. Internal pageranks can be misleading, though - the biggest subforum on google webmaster central "Crawling, indexing & ranking" has over 50,000 threads and shows an internal pagerank of 0! However, the content there is still very heavily indexed.

The vast majority of websites have a front page with a pagerank of less than 3 - for a single thread on a subforum, 3 is pretty darned impressive. The number is derived from external links that go directly to this thread and the internal link(s) from our PR7 friends at TNS.

It's entirely possible that we could get the pagerank of the front page of the new site up to 2 or 3 with lots of unique content and some high-quality external links. The internal pages would almost certainly have a lower pagerank though. I would predict that both forums will continue to co-exist for many years to come, and that's no bad thing.

Duplicate content is a real issue with SEO, but it mostly affects sites that steal content wholesale from other websites. If you have 90%+ original content, you are fine - I see no harm in people cross-posting messages between forums where it is appropriate; we have so much unique content on this thread already that the chance of us getting penalised by google for duplicate content is negligible.

While it's hugely important that POIS sufferers can find our websites and contribute, it's even more important that we can have relevant detailed discussions about POIS and share our findings with one another - the new website has really improved our ability to do that, and if it means that somewhere along the line we take a slight SEO hit, so be it. But my own opinion is that the TNS thread will remain very visible to search engines, while the new forum's visibility will grow organically over time.

[Habibou]

Demo, do you have some news from Prof Waldinger? how the research is going and so on? thank you  []

[hurray]

Some good points hurray. Particularly what you say about both forums being quite active.

One of the MOST important factors to consider in the creation of the new forum, was the potent pull that NSF has.

The desire was to provide a new forum where a focus in activity could be achieved through the ability to separate topics. We didn't want two NSFs, nor to take away from what NSF had. The new forum has a completely diferent style, and initial reactions to this new style and interactions desired by the users tended to stay tied to a NSF way. But now that the forum is up and running, a natural feel and usage style is setting in for each forum, just as you indicate; you go to one for one thing and another for another.

What we want to do, to further facilitate access and a more seamless interactivity is join everything together with a well designed POIS Center.

We are in the process of preparing conditions and implementing an integrated Search Engine Optimization Scheme. Part of this plan in a second stage involves dedicated sponsors which will initially help pay for Google Ad exposure.

Google Ad exposure is very efficient for our application. Whereas it may have a 1% efficiency per click at best for normal sales applications, it has an efficiency closer to 80% per click for POIS sufferers looking for a "home".

So although in this moment it seems like forums here and forums there, and databases in other place and compendiums etc. we are going to unite into one entity. And new resources are and will be attracted, like NORD and other rare disease facilities, where you tend to find community in the understanding of little understood suffering.

I feel that we are JUST getting started, and with OUR group, it's going to be really exciting!

You are going to use Google AdWords? That should be interesting! The more people who find out about our forums, the better. The new forum has certainly flourished thanks to the work that you and Demo have put into it - I admit to being pleasantly surprised by its success so far  [] I have every faith that you can achieve what you are setting out to do - good luck, you have set yourself a big challenge  []

[hurray]

i agree with your all your points, but i believed the goal was to eventually make the move to the other website so things can be more organize. I was not sure about how quickly that transition was going to happen that is why i was curious why we are not trying to create visibility as early as possible and using all the tools available.
As long as we are taking it slowly, nsf is definately taking care of the exposure we need, evident by the current flow of new people.
When it is time to get a domain i believe there is a ways we can share the cost one person shouldnt just do it. 

Thanks, CCconfucus! It sounds like Daveman is working to achieve greater visibility for the new site - of course, the biggest thing that will make it visible is the unique content (POIS posts) that we are contributing. This will build up over time and gradually give us google rankings for all kinds of search words - perfect for finding new POIS sufferers who can contribute with their ideas. I'm not sure we will ever entirely move over to the other site, but that doesn't mean that both sites can't be valuable together.

[martin88]

Thanks Hurray. Some people will think this subject is disruptive but in my opinion is very important to discuss to increase our chance to attract more cases, so potentially more interest from researchers. I remember how Dr Waldinger was impressed by our number of cases. I think it's great you help with this. I agree with you for duplicate content, what decided me to post about it was to prevent copying entire pages and because Google said they want to keep some quality for the users who are forced to read two times the same thing so I had a little doubt.

I'm sure you know that the exact ways search engines are managing rankings is somewhat secret so it's hard to be perfect.
Yes forums with low pagerank are indexed and I think they won't appear first in the results compared with best PR, even for Google, the web is big.. If an other topic at TNS is 4 then we can do it too by following your suggestions, we are 3/10! But it's not only pagerank. Keywords are important, if someone talk about Lyme disease in the new forum and not here, then maybe for the next two years we'll fail to attract new POIS cases who have Lyme disease and who could help us with treatments as well. I know we must start somewhere but indexing should be done asap.

I agree with you 110% for what you say about the new forum and I'm now reassured it will be indexed because it was not sure at the beginning.

I think we definitely need a MAIN forum with more complexity (but not too much!) ---because the way we are discussing here is not adapted:
I understand we should have the discussions topic after topic rather than posts after posts in one topic, this has many advantages:
e.g: we can come back easily on unanswered points - There's a search functionality in all SMF forums limited only to the first pages of a topic- More keywords are in the title of the topics page (better for search engines)--- but the question is will everybody post in the new forum?  I'll go with the majority.
btw we can do polls at forumup.org

Perhaps there would have been serious other places on the web ready to give us a childboard and we can try again here first in case they changed their opinion. There are medical forums, science forums, where we can ask. Like Demo said one day, we can have several churches.
This could be a temporary solution the time everything is in place at the new forum. And I really think having our own forum with our own domain name is an advantage if the site represent the majority of the POIS sufferers.

About adwords it can be good and can add something but personally I avoid to click on sponsored links to have reliable scientific info. Except maybe if I see "fatigue after orgasm"..

[demografx]

Demo, do you have some news from Prof Waldinger? how the research is going and so on? thank you  []

Habibou, unfortunately nothing has changed since my last post below:

Prof. dr. Waldinger status

Some of the forum members/readers here have had difficulty in communicating with Dr. Waldinger, such as not getting a reply with his 2011 papers.

I spoke to him, and while he is very committed to POIS, he has many obligations that keep him extremely busy, such as teaching PhD's, medical responsibilities with hospital patients, writing/publishing papers in other areas of sexual medicine, conference presentations, and much more.

Keep in mind that his POIS funding is like ours: bootstrap. Which is another way of saying self-funded.

He will proceed with the POIS surveys, but that might take several months to get going

If you write to him asking for the 2011 research study papers and get no reply, PM me with your email and I will send it ASAP.

[demografx]

Interesting point Hurray with page rank, thanks for that. I tend to agree the traffic here will never decrease for the pages already indexed but we have to make sure our traffic will continue to increase, and this is not done by posting in a hidden forum.
TNS pagerank is 7/10 but the first page of the POIS forum is only 3/10, proof that Google treat it separately than TNS, at least partially. There are other topics at TNS with 0/10 pagerank. Maybe it's the number of links toward the topic that make the difference and perhaps for a small part the number of pages with the same title...
It would be really nice to have a main forum bigger than what we have now at TNS and very well exposed in search engines with a good pagerank.

An other point about search engines, Google does not recommend to have duplicate content within or across sites. I don't know if cross posting can be considered as duplicate content. After years of doing this the amount of duplicate can be huge but I would not think it's a problem if only a small part of each page is duplicate.
From Google guidelines:
http://www.google.com/support/webmasters/bin/answer.py?answer=66359

You make a good point about the difference between the TNS pagerank and the POIS thread internal pagerank. Internal pageranks can be misleading, though - the biggest subforum on google webmaster central "Crawling, indexing & ranking" has over 50,000 threads and shows an internal pagerank of 0! However, the content there is still very heavily indexed.

The vast majority of websites have a front page with a pagerank of less than 3 - for a single thread on a subforum, 3 is pretty darned impressive. The number is derived from external links that go directly to this thread and the internal link(s) from our PR7 friends at TNS.

It's entirely possible that we could get the pagerank of the front page of the new site up to 2 or 3 with lots of unique content and some high-quality external links. The internal pages would almost certainly have a lower pagerank though. I would predict that both forums will continue to co-exist for many years to come, and that's no bad thing.

Duplicate content is a real issue with SEO, but it mostly affects sites that steal content wholesale from other websites. If you have 90%+ original content, you are fine - I see no harm in people cross-posting messages between forums where it is appropriate; we have so much unique content on this thread already that the chance of us getting penalised by google for duplicate content is negligible.

While it's hugely important that POIS sufferers can find our websites and contribute, it's even more important that we can have relevant detailed discussions about POIS and share our findings with one another - the new website has really improved our ability to do that, and if it means that somewhere along the line we take a slight SEO hit, so be it. But my own opinion is that the TNS thread will remain very visible to search engines, while the new forum's visibility will grow organically over time.

Many thanks for discussing this!! A most important topic in my opinion.

[demografx]

Also i know its asking alot but where might i find the papers from Dr. Waldinger? 

Write to him as suggested in your Welcome Post. If no reply, send me or daveman your email address and we'll get the papers to you ASAP.

[Hoping]

John21 and B_Jim, I will be getting a dvd copy of the show after it airs. Once I do, I'll see if I can try to get it to those of you who want to see it! Or somehow upload it.  Thanks!

I haven't posted here in a while -- been pretty busy. I just wanted to say that there are several software programs that might help with recording and/or uploading the DVD. You can rip (which basically means "record") the DVD to your hard drive. I use free software called DVD Shrink (http://www.afterdawn.com/software/cd_dvd/copy_dvd/dvd_shrink.cfm) and have never had a problem. You can also do a screen capture, which will record anything (sound, visual, movies, etc.) that appears on your computer screen. CamStudio is a good free software for that (http://camstudio.org/). As to uploading and sharing... I'm sure there's a good way to do it. As others have mentioned, youtube might be difficult due to copywrite stuff. I'm pretty sure there's a way to upload videos and share them so only people with a link can access them -- in other words, it's not open to the public. This might be a possible solution? Just brainstorming.

[Habibou]

Demo, do you have some news from Prof Waldinger? how the research is going and so on? thank you  []

Habibou, unfortunately nothing has changed since my last post below:

In fact, the best thing would be to  tell our condition to real seekers!... I am contacting some in France thanks to my family's relations to have more answers.

[rock27]

Martin, to me it all sounds very technical so not easy to understand, but I agree we need to be high in search engine rankings.

I just added a signature to my profile: "POIS, fatigue, brain fog, can't find words, can't concentrate". This to give us high rankings and to make us easily found by new cases. B_Jim was the first to do this.  Unfortunately my signature is not displayed here, because TNS says they only display it when you are a "trusted member", to prevent spam. So apparently I am not a trusted member.