Author Topic: POIS Wikipedia page vs a link to Poiscenter.com  (Read 8454 times)

Quantum

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POIS Wikipedia page vs a link to Poiscenter.com
« on: June 15, 2016, 09:01:55 PM »
Hi everybody,

Lately, in another thread, I wrote:

(....) It is important to gather POIS sufferers here.  One of the thing that amazes me is, I have last year put the link to this forum in the "External links" section of the wikipedia article about POIS, and it has been deleted  ( it seems that wikipedian reviewers have decided, as policy for every health conditions, that links to support groups are not acceptable in wikipedia).

I think than that we should be creative, as have been done for the Multiple Sclerosis page.  There is a wikipedia article that has been created, called "List of multiple sclerosis association", and a link to it has been put in the "See also" section of the Multiple sclerosis page. For now, It seems that non-scientific links in the "See also" section are accepted on Wikipedia ( as years go by, rules are more and more complicated on Wikipedia, so who knows if ti will stay like that...)  .  If a Wikipedia page about POIScenter was created, we could than put the link on a "See also" section of the "scientific" POIS page, which can be found at https://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome .  But, I have not enough experience with Wikipedia to create a POIScenter wikipedia page, and create a "See also" on the medical POIS page to insert a link to this page.  Is anyone well-versed in Wikipedia article creation that could help with that?

I use this new thread to draw some more attention to my suggestion, because I have posted this in a thread related to another subject, so I think it went pretty much unseen. 

So, is there a member here who is knowledgeable with creating wikipedia sections and links, and that would be able to do for poiscenter what multiple sclerosis has done for MS support groups, as I have described above ? 

I think it would be important, because with any major search engine, what wilt come up with "POIS" is mainly the POIS wikipedia page, so most POIS sufferers will be directed there.  It would be best to have a link from the wikipedia page to here at poiscenter.com, in a way that is tolerated by the wikipedians reviewers.  POIS sufferers clearly benefits from being able to communicate with other in the same situation, and get the most information possible on POIS and on POIS research.  Poiscenter is still the main ressource and main suport group for POIS sufferers, and one of the only POIS research ever done has been funded by this very forum.

You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Defsync

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #1 on: July 06, 2016, 07:15:35 PM »
yeah i suppose i could do that. are you trying to list this site and nakedscientists forums then? any other support groups?

Quantum

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #2 on: July 06, 2016, 09:42:52 PM »
yeah i suppose i could do that. are you trying to list this site and nakedscientists forums then? any other support groups?

Yes, those are the two main places where POISers can find information and support. Poiscenter is the most active and up to date now, and is the forum that has payed for the NORD study currently going on, but the archive at NSF contains valuable information.

There is also a reddit discussion at https://www.reddit.com/r/POIS/ , which seems to have been active lately, but I do not participate there and do not have any opinion on its value.

Thanks in advance, Defsync !
« Last Edit: July 06, 2016, 10:11:05 PM by Quantum »
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #3 on: July 06, 2016, 10:28:39 PM »
I second the advance thanks, Defsync.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Defsync

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #4 on: July 06, 2016, 10:53:18 PM »
okay so heres the problem

still need to reference each of these "support outlets" from a wikipedia approved type of source.

as in, going to need to find a publication that mentions the reddit page, here, and nakedscientists

or one or all or whatever.

if there isnt one, sorry out of luck thank you come again.

pretty sure there isnt, so yeah.

gonna have to get someone or a site in some kind of media to want to write an article at the very least.

i know you would all be looking at me right about now but not about to solicit anyone for a POIS article just to make the "links to support group" page a reality.

Quantum

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #5 on: July 07, 2016, 07:12:57 AM »
As I said, my "model" was multiple sclerosis.  On the wikipage of Multiple Sclerosis, and the "See also" section, there is a link to the other page ( https://en.wikipedia.org/wiki/Multiple_sclerosis#See_also ).

The other page is called, currently, " List of multiple sclerosis organizations".   Se at https://en.wikipedia.org/wiki/List_of_multiple_sclerosis_organizations .  It may have changed since I was it some time ago - Wiki is changing on a constant basis. But what I note on this page is that these organisation have their own wikipage, and the list point to htose page.

Poiscenter is not an "organisation" , but it does have gathered founding for a clinical study, so it is not only an informal group, so it deserve to be cited. Does this means that POIScenter should have its own wikipage, with history, and how it came to found a NORD study?

Demo and Daveman, how, legally, poiscenter has been cited has the foundraiser of the study, in NORD papers?  Do POIScenter has a legal name that could be use for a wikipage name ?



« Last Edit: July 07, 2016, 07:14:43 AM by Quantum »
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #6 on: July 07, 2016, 10:36:39 AM »

Demo and Daveman, how, legally, poiscenter has been cited has the foundraiser of the study, in NORD papers?  Do POIScenter has a legal name that could be use for a wikipage name ?


I just asked NORD for the name they use in their records.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #7 on: July 07, 2016, 11:26:31 AM »
Jacqui is on vacation so I emailed Sue Rossov/NORD.


« Last Edit: July 07, 2016, 11:31:33 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #8 on: July 07, 2016, 03:09:20 PM »
So far, it looks like "POISCenter.com" is our complete name, and hopefully Wikipedia will accept that.

We are not a nonprofit, corporation, charity, etc. We are a rare-disorder-support group/forum/website.

And we members funded (100%) NORD's $33,500 grant award to Rutgers' POIS Study, headed by Dr Komisaruk.


« Last Edit: July 07, 2016, 03:12:37 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #9 on: July 07, 2016, 06:21:33 PM »
On Jul 7, 2016, at 1:11 PM, Jacqueline Kraska/NORD wrote:

No worries, truly. I will look into it. Let's confirm if you were listed as a funder, and if not let's go from there. I can confirm funding with finance etc.,...

Hopefully I can get you an answer by tomorrow but if not it may need to wait to next week. I think we can view the RFP relatively quickly, but if not listed it may take a few days to confirm. I'll work on it.

You take care!

All the best,
Jacqui
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #10 on: July 07, 2016, 06:24:05 PM »

On Jul 7, 2016, at 1:18 PM, Jacqueline Kraska/NORD wrote:

Hi demo,

Well good news here is the RFP which certainly mentions you. So you can use this if you like?

BW
Jacqui
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #11 on: July 08, 2016, 02:48:55 PM »
On Jul 8, 2016, at 12:45 PM, Suzanne Rossov/NORDwrote:

Hello

According to our records I see both POIS spelled out Post-Orgasmic Illness Syndrome as well as reference to POISCENTER.COM.

I hope that this helps.

Best Regards
Sue

Sue Rossov
Research Program Associate
National Organization for Rare Disorders
55 Kenosia Avenue
Danbury, CT 06810
Phone: (475) 289-6855 ext. 222
Fax: (203) 798-2291
srossov@rarediseases.org
www.rarediseases.org
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

b_jim

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #12 on: July 08, 2016, 10:42:38 PM »
By looking Pois classification in google, I find a newf reference :
https://www.ncbi.nlm.nih.gov/pubmed/26921646

Abstract

Ejaculatory disorders lie along a conceptual continuum with premature ejaculation anchoring one end, normal ejaculation in the center, and difficulties with delayed or anejaculation at the opposite end. Retrograde ejaculation, painful ejaculation, and postorgasmic illness syndrome can occur at any point on the continuum. This manuscript defines the ejaculatory dysfunctions, reviews the anatomy and physiology of orgasm and ejaculation, and summarizes the pharmacological, psychological, and combined treatment approaches to ejaculatory dysfunctions.

[POIS above: mod highlighted]


« Last Edit: July 09, 2016, 03:20:00 PM by demografx »
Taurine = Anti-Pois

demografx

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #13 on: July 09, 2016, 12:04:53 AM »
Thank you, b_jim!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #14 on: July 09, 2016, 10:57:52 PM »
Defsync, I hope the above gives you sufficient info to help our Wikipedia/other media placements!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #15 on: July 11, 2016, 12:45:11 PM »
I just re-read Quantum's opening statement on this thread about support group links nixed on Wikipedia.

I guess we need to emphasize NORD at Wikipedia to get our story across?

Thanks everyone, for all your Wikipedia efforts! :)
Best,
demo
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

manhei1994

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #16 on: September 22, 2016, 02:05:25 PM »
Has the problem been fixed? Could I know what is the biggest hurdle in setting up a link to this forum?

I think that Quantum's suggestion is quite good, but Defsync said there were some technical problems. I don't fully understand them as I have never edited a page on Wikipedia. Can Defsync or others explain a little bit? I really hope we can let readers of the "POIS" wikipage find this forum.

Besides, I would like to mention an idea not very relevant to this post. I see that there are currently only nine language versions for the "POIS" wikipage, could members who speak other languages set up pages in those languages? It would be nice if you volunteer to do it, but I think I can contribute some money for the task if necessary. As a student, I may not be able to contribute a lot. But at the moment, I would like to know the approximate budget for a single task (one language) from those who are interested.
My life has been affected by this disease over the last 10 years

demografx

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #17 on: September 22, 2016, 06:26:10 PM »
...I see that there are currently only nine language versions for the "POIS" wikipage, could members who speak other languages set up pages in those languages? It would be nice if you volunteer to do it, but I think I can contribute some money for the task if necessary. As a student, I may not be able to contribute a lot. But at the moment, I would like to know the approximate budget for a single task (one language) from those who are interested.
Thank you for helping our international efforts, manhei1994!


10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Quantum

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #18 on: September 22, 2016, 10:34:05 PM »
Has the problem been fixed? Could I know what is the biggest hurdle in setting up a link to this forum?

I think that Quantum's suggestion is quite good, but Defsync said there were some technical problems. I don't fully understand them as I have never edited a page on Wikipedia. Can Defsync or others explain a little bit? I really hope we can let readers of the "POIS" wikipage find this forum.

Besides, I would like to mention an idea not very relevant to this post. I see that there are currently only nine language versions for the "POIS" wikipage, could members who speak other languages set up pages in those languages? It would be nice if you volunteer to do it, but I think I can contribute some money for the task if necessary. As a student, I may not be able to contribute a lot. But at the moment, I would like to know the approximate budget for a single task (one language) from those who are interested.

Hi Manhei,

Thanks for your interest on this Wikipedia thread.

No, The problem has not been fixed.  The main hurdle is that the Wikipedia is now "managed" by an ever growing number of wikipedians, and guidelines for editing are more and more strict.  This is not maybe not the case in every field for now, but in health related wiki articles, links to support groups are no longer tolerated - they are systematically erased by reviewers/health pages "watchers".  Only scientific references are accepted, mainly.

I am not sure that there is a way anymore to include a link to a support group direclty  on the related condition wikipage without having it erased in quite a short time.  But, even if we won't be able to put a link to Poiscenter on the POIS page, I have made some research, and I think it would be possible to put up a Poiscenter page, a page for the online support group itself, because this category now exists on wikipedia ( see https://en.wikipedia.org/wiki/Category:Online_support_groups ).  hehehe..... ;)

On such a poiscenter wiki page, the word "POIS" would definitively be present, so a search for "POIS" in the Wikipedia search bar would bring up the POIS wikipage, and, also, the poiscenter page as well.  This could be an interesting solution.

The poiscenter  wikipage would not have to be very long:  mentioning its existence,inception date and brief description, and include a section about its role in the recognition of POIS at NORD, and another section about its 100% founding of the ongoing study by the Rutgers team, through NORD.  If the page is about Poiscenter, it will be 100% ok to include its web address.



A first step would be to get a first draft of what would be on a poiscenter wikipage.  But then, the biggest problem will be the reference problem.  I have quick;ly reviewed some of the wikipages of the support groups listed in the wikipedia category linked to above, and all of those groups seems to have been the object of an article or a description in some mainstream media, so their existence is somehow "referencable".  Maybe a first step would be to have poiscenter being the object of an article on some internet media like the Huffington post, for example, or some well known health website.  When we will have an article on poiscenter that could be linked to, than we will be able to put that reference on the Wikipage.  It looks like "self-presenting" your group or activity on Wikipedia is seen as a promotion or publicity, so you have to be "presented" and cited by other sources than yourself  ( I understand this is called for by probably the hundred of thousand of abuse cases where pages put up where only disguised advertisement ).

Well, this would have to be a long term project.  Anybody interested in putting up a team?


About Defsync, he may be very busy, his profile shows that he has not logged in here since July. 


 
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

manhei1994

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Re: POIS Wikipedia page vs a link to Poiscenter.com
« Reply #19 on: September 23, 2016, 07:57:25 AM »

On such a poiscenter wiki page, the word "POIS" would definitively be present, so a search for "POIS" in the Wikipedia search bar would bring up the POIS wikipage, and, also, the poiscenter page as well.  This could be an interesting solution.

The poiscenter  wikipage would not have to be very long:  mentioning its existence,inception date and brief description, and include a section about its role in the recognition of POIS at NORD, and another section about its 100% founding of the ongoing study by the Rutgers team, through NORD.  If the page is about Poiscenter, it will be 100% ok to include its web address.

[...]

Well, this would have to be a long term project.  Anybody interested in putting up a team?


Thank you for your elaboration. Just a quick question, is it possible to make a link to "poiscentre" wikipage under the
"see also" part of "POIS" once the "poiscentre" page is put up?

I am interested in joining the team. Although I have no experience in editing wikipages, I hope I can contribute to it.
My life has been affected by this disease over the last 10 years