Author Topic: Let's help Dr. Wise and the Rutgers Team!  (Read 28134 times)

Nightingale

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Let's help Dr. Wise and the Rutgers Team!
« on: February 20, 2015, 11:47:23 AM »
EDIT: If you have questions for me, please ask on another topic or send me a private message. I'll be happy to share more of my talk with Dr. Wise with you that way. If you want to hear from Dr. Wise, send her an email (nanwise@psychology.rutgers.edu)

Hello gang!

Dr. Nan Wise and I just had a Skype call to talk about POIS. It was such a great pleasure to speak with her! I gained a strong confidence in her abilities, she is a very smart and fun person! Wonderful fit for our study coordinator!

First, I would like to speak on her behalf by saying she sincerely apologizes for the delays and waiting for this study. She shared my frustration in this. She says academia can make one feel frustrated so often, making you feel like you are engaging in a game of "hurry up and wait". Dr. Pooja Lakshmin left the study to do her residency as a physician, and Dr. Wise was on another project until just now when she began communicating with us.

I am so excited because I learned that a lot is about to begin. Dr. Komisaruk has received his heart rate variability monitors. Dr. Wise says his enthusiasm is so great, he was like a kid with a new toy when he got his hands on them! This monitor will help determine what effect orgasm will have on our heart rate (I know my heart rate is low).

I want to point out that Dr. Wise wanted to talk with me because I am one of the people who can conveniently reach Rutgers (7 hour drive, and I have family close to Newark), and thus she wants to get to know me to begin the process of getting me involved in the study. I feel privileged to have this chance, and I want you all to be able to share in the excitement what you can! We have all been so deprived for so long, to finally be listened to by truly skilled AND compassionate people is a major morale booster! Dr. Wise is going to "get the party started!" (her words ;) ), and I wanted you all to know I think she's gonna be a great ally to us all! I also believe we are in for the highest level of transparency we have yet to experience. What a relief! It has been SUCH a long wait, and we have been SO patient. Dr. Wise totally empathized with me on this. She wants very much for us to be COLLABORATORS with this study!

So with that said, she wanted me to get something going on the forum that would be useful to the team. She would like a survey of symptoms, as well as a timeline of when they begin and when they end for as many of us that we can gather information on. This would help with identifying patterns. I know there was some concerted effort already to do something like this on these forums, does anyone know where to look? Dr. Wise and the team would be happy to have that data!
« Last Edit: February 20, 2015, 11:53:23 AM by Nightingale »
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

demografx

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Re: Let's help Dr. Wise and the Rutgers Team!
« Reply #1 on: February 20, 2015, 12:02:11 PM »




Nightingale!


« Last Edit: February 21, 2015, 02:08:31 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

Colm

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Re: Let's help Dr. Wise and the Rutgers Team!
« Reply #2 on: February 20, 2015, 04:03:34 PM »
Great to see the engagement. Well done Nightingale !!!

A couple of thoughts come to mind.

Firstly, some of this data is obviously available on the forms from the 15 or so who applied into the study

Secondly, as this is research, would it make sense to provide a structure to the feedback on symptoms and timelines, through a few headings, or specific headings, from the original forms or does Dr. Wise just want random feedback? I will have a look at creating a subset of relevant questions from the original forms from Dr. K over the weekend, if you guys think that'd be helpful. Just let me know here.

Third thing that comes to mind. There is SO much valuable information on this forum (all buried and hard to find). Is there a small budget within the funds raised to employe a part time student researcher for two weeks, with the task (as directed & assigned by Dr. K/Dr. W or us) to mine and search for information in a way that would really add value to Dr. Wise & Dr. K needs. Btw, just out of a particularly bad POIS cycle, so maybe I'm not thinking so clear.

If there is no money left in the pot, it may be worth considering raising a few hundred $'s for this down the road.

Anyone else able to find the data....all the best
« Last Edit: February 20, 2015, 04:07:24 PM by Colm »

Nightingale

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Re: Let's help Dr. Wise and the Rutgers Team!
« Reply #3 on: February 20, 2015, 04:32:55 PM »
Great to see the engagement. Well done Nightingale !!!

A couple of thoughts come to mind.

Firstly, some of this data is obviously available on the forms from the 15 or so who applied into the study

Secondly, as this is research, would it make sense to provide a structure to the feedback on symptoms and timelines, through a few headings, or specific headings, from the original forms or does Dr. Wise just want random feedback? I will have a look at creating a subset of relevant questions from the original forms from Dr. K over the weekend, if you guys think that'd be helpful. Just let me know here.

Third thing that comes to mind. There is SO much valuable information on this forum (all buried and hard to find). Is there a small budget within the funds raised to employe a part time student researcher for two weeks, with the task (as directed & assigned by Dr. K/Dr. W or us) to mine and search for information in a way that would really add value to Dr. Wise & Dr. K needs. Btw, just out of a particularly bad POIS cycle, so maybe I'm not thinking so clear.

If there is no money left in the pot, it may be worth considering raising a few hundred $'s for this down the road.

Anyone else able to find the data....all the best

Congrats Colm, you made it out of a bad POIS cycle and still made a lot of salient points! I especially like the idea of having someone mine our forums for data. Creative.

Dr. Wise definitely is looking for specifics, especially the progress and duration of symptoms after orgasm. I don't believe that was part of our feedback with the forms. The original forms are a great place to start.

I'm sending a direct link of this thread to Dr. Wise, and I'll highlight your third point with her.
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

demografx

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Re: Let's help Dr. Wise and the Rutgers Team!
« Reply #4 on: February 20, 2015, 05:03:52 PM »
Thanks again, Nightingale!!! :)
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: Let's help Dr. Wise and the Rutgers Team!
« Reply #5 on: February 20, 2015, 05:08:01 PM »

Dr. Wise definitely is looking for specifics, especially the progress and duration of symptoms after orgasm. I don't believe that was part of our feedback with the forms. The original forms are a great place to start.


Would it help to start a new thread...for those who are "forms-shy". Like me ! :)
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

Nightingale

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Re: Let's help Dr. Wise and the Rutgers Team!
« Reply #6 on: February 20, 2015, 05:54:46 PM »

Dr. Wise definitely is looking for specifics, especially the progress and duration of symptoms after orgasm. I don't believe that was part of our feedback with the forms. The original forms are a great place to start.


Would it help to start a new thread...for those who are "forms-shy". Like me ! :)

Maybe? I worry about the messiness of it all sometimes. I would imagine it would help to keep this somewhat standardized, so that gathering the information isn't a nightmare. That's what I fear with a new forum post, but if there is some kind of format we can develop beforehand maybe a new topic would work?

Things that need to be on there are: Name (Forum name is ok I think), Symptom, Onset, Duration....  what else? Maybe that's it. Onset should be written as "X after ejaculation" (where X = seconds, minutes, hours)
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

demografx

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Re: Let's help Dr. Wise and the Rutgers Team!
« Reply #7 on: February 20, 2015, 05:59:59 PM »
Anyone else want to start a new thread on "POIS symptoms"?

Please do! :)


« Last Edit: February 20, 2015, 06:21:48 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: Let's help Dr. Wise and the Rutgers Team!
« Reply #8 on: February 20, 2015, 07:52:46 PM »

Third thing that comes to mind. There is SO much valuable information on this forum (all buried and hard to find). Is there a small budget within the funds raised to employe a part time student researcher for two weeks, with the task (as directed & assigned by Dr. K/Dr. W or us) to mine and search for information in a way that would really add value to Dr. Wise & Dr. K needs. Btw, just out of a particularly bad POIS cycle, so maybe I'm not thinking so clear.

If there is no money left in the pot, it may be worth considering raising a few hundred $'s for this down the road.



Stef is traveling -- perhaps, when she settles back home -- and might let us know if NORD funds we raised above & beyond the Rutgers Grant (several hundred $$'s I think) -- might be available? Perhaps to Rutgers students?
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: Let's help Dr. Wise and the Rutgers Team!
« Reply #9 on: February 21, 2015, 01:39:16 AM »

...[Dr Nan Wise] would like a survey of symptoms, as well as a timeline of when they begin and when they end for as many of us that we can gather information on. This would help with identifying patterns. I know there was some concerted effort already to do something like this on these forums, does anyone know where to look? Dr. Wise and the team would be happy to have that data!


Nightingale, your post was a breathtaking, inspirational LEAP! :)


Some possibilities for POIS symptom info:

-The Welcome Page here http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
-The Pois Information Website https://sites.google.com/site/poiswebsite/
-Threads here at POISCenter??? (Anyone??)
-Counterpoints study (deleted??Anyone?)
-Our user profiles here at POISCenter? (At bottom of each of our posts, e.g.., Sameer's posts)
-Google search of "POIS symptoms" @ NSF: 
pois symptoms site:http://www.thenakedscientists.com
(put preceding/above-as-shown-in-bold in Google search box - keep spacing 'as is' )

        Here's first page example of NSF Google search (summary/truncated link shown here):
Search Results
Post Orgasmic Illness Syndrome (POIS) - The Naked Scientists
www.thenakedscientists.com/forum/?...0
Feb 18, 2007 - The cluster of symptoms is named postorgasmic illness syndrome (POIS). To date, no explanation has ...
What about the women who have Post Orgasmic Illness Syndrome (POIS ...
www.thenakedscientists.com/.../index.ph...
May 23, 2008 - 7 posts - ?7 authors
find any POIS referring to women. But I must say ... I have had many of the symptoms described here
Post Orgasmic Illness Syndrome (POIS) - The Naked Scientists
www.thenakedscientists.com/.../index.ph...
Mobile-friendly - I have problems with what i think is pois, i have a few symptoms that arnt really listed. If anyone has any comments ...
Post Orgasmic Illness Syndrome (POIS) - The Naked Scientists
www.thenakedscientists.com/.../index.ph...
Mobile-friendly - First Day of POIS (less the myalgia) symptoms, popped a Levitra again as an experimental "cure." Also recently ...
Post Orgasmic Illness Syndrome (POIS) - The Naked Scientists
www.thenakedscientists.com/.../index.ph...
Mobile-friendly - Jul 28, 2012 - I seem to get POIS when I get aroused...the symptoms are significantly worse after ejaculation than ...
Post Orgasmic Illness Syndrome (POIS) - The Naked Scientists
www.thenakedscientists.com/.../index.ph...
Mobile-friendly - I've had POIS symptoms (no myalgia)for decades! I thought testosterone injections would help, but that turned out to ...
Post Orgasmic Illness Syndrome (POIS) - The Naked Scientists
www.thenakedscientists.com/.../index.ph...
Mobile-friendly - Feb 7, 2014 - 'Almost' all the symptoms should match in order to suffer from POIS. For example POIS symptoms ...
Post Orgasmic Illness Syndrome (POIS) - The Naked Scientists
www.thenakedscientists.com/.../index.ph...
Mobile-friendly - Until this forum I always associated POIS as being symptoms of Chronic Fatigue Syndrome which I have had had on ...
Post Orgasmic Illness Syndrome (POIS) - The Naked Scientists
www.thenakedscientists.com/.../index.ph...
Mobile-friendly - Jan 24, 2015 - I have been facing the POIS symptoms for past 7 years or so. I am 31 years old and have been reading ...
Post Orgasmic Illness Syndrome (POIS) - The Naked Scientists
www.thenakedscientists.com/.../index.ph...
Mobile-friendly - Symptoms and circumstances are different, but I think the theme of 1) DAYS of postorgasmic symptoms, 2)fatigue and 3) ...

-Google search of "POIS symptoms @ POIScenter.com:  Dave? Anyone? I didn't have any luck trying...EDIT: this seems to work:
pois symptoms poiscenter.com
(Put preceding/above-as-shown-in-bold in Google search box - keep spacing 'as is' )
     Here's First Page Google results (summary/link truncated)
Recent Posts - POIS
poiscenter.com/forums/index.php?action...
Nightingale - demografx. Anyone else want to start a new thread on "POIS symptoms"? ... General Category / Support and Miscellaneous / Re: People unable to register to POIScenter forums. : Today at ...
Post Orgasmic Illness Syndrome (P.O.I.S.) - Index
www.poiscenter.com/forums/index.php
POIS Cause/Treatment Discussions. General Advisories Notes from Administration and Moderators about use of this ...
To what extent does Cowper's fluid (or pre-cum) cause POIS symptoms?
poiscenter.com/forums/index.php?topic...
Mobile-friendly - Mar 8, 2013 - Poisperson, I am really glad that you have found us. I think it definitely causes - in my case - some minor symptoms.
getting rid of pois symptoms --> b3 + O?Nov 9, 2012?
Xanthiol Nicotinate - Benefits, Risks and Function in POIS?Mar 19, 2012?
Something to read - POIS?Mar 18, 2012?
My most unusual POIS symptom?Mar 18, 2012?
More results from poiscenter.com?
POIScenter.com Announces Fundraising Effort to ... - Marketwired
www.marketwired.com/.../poiscentercom...
Aug 20, 2012 - SOURCE: POIScenter.com ... Finding a cure -- or at the least -- a treatment for POIS -- has become a ...
POIScenter.com Announces Fundraising Effort to Combat ... - Topix
m.topix.com/.../TJFPAV7PB9PRAO6FC?...
Mobile-friendly - Aug 21, 2012 - Visit POIScenter.com to find the best resource on the ... The symptoms are both physical and mental.
POIS Compilations By VM - Google Sites
https://sites.google.com/.../poiscompilatio...
http://poiscenter.com/forums/index.php?topic=524.msg7463#msg7463. He tested low in free .... Fenugreek + garlic reliably improved his pois symptoms for at least a month. It worked for him whether ...
Post Orgasmic Illness Syndrome (POIS) - The Naked Scientists
www.thenakedscientists.com/.../index.ph...
Mobile-friendly - Dec 27, 2012 - Yes i have the POIS symptoms after an O (mostly mental ... So why there are no symptoms after this ... Most of the discussion about it has been at our main forum at poiscenter.com.
POIScenter.com Announces Fundraising Effort to ... - Yahoo News
news.yahoo.com/poiscenter-com-announ...
Mobile-friendly - POIScenter.com August 20, 2012 3:43 PM ... Finding a cure -- or at the least -- a treatment for POIS -- has become a ...
Orgasm illness - POIS - YouTube
Video for pois symptoms poiscenter.com? 5:37
m.youtube.com/watc...
Nov 21, 2013
Post Orgasmic Illness Syndrome (POIS) | Facebook
https://m.facebook.com/profile.php?id...
Mobile-friendly - Post Orgasmic Illness Syndrome (POIS). 83 likes ยท 1 talking about this. For people who get fatigue and flu like symptoms ...


I  just got outta the hospital from a nasty diverticulitis attack. I'm recovering slowly but getting well!! Glad to be out again amongst the living!!

Hope someone else can pick up where I left off on symptoms for Nightingale &Rutgers!
All the best! :)
Demo

« Last Edit: February 21, 2015, 01:59:46 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

BluesBrother

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Re: Let's help Dr. Wise and the Rutgers Team!
« Reply #10 on: February 21, 2015, 11:55:11 AM »
Thanks Nigthingale, Colm, demo, great posts! I think it is a very good idea to collect data in an organized way. The more information we can provide, the better for the research at Rutgers.

I think it would be good to set up a questionnaire, and do so in coordination with Dr. Wise / Prof. Komisaruk (would be a pity if we missed out on items they find very important). I believe forms allow us to collect data in a structured way which for instance more easily allows us (and the people at Rutgers) to recognize different POIS patterns (e.g. it might be that there is a clustering of symptoms / treatments which work along the dimensions of cognitive vs. physical symptoms). The questionnaire for the study at Rutgers can be a first start.

In addition to symptoms and durations, we might also want to include treatments tried and their success / failure. And in any case there should be a comment field in which people can just fill in free-form text, for anything which is not well captured by the questionnaire items.

We might use a tool such as SurveyMonkey (https://www.surveymonkey.com/ ) or Google forms (http://www.google.com/forms/about/)

@demo, as forum admin, do you have the ability to send out emails to everyone registered on the forum? Once we have set up the questionnaire, we could then send out a link for filling in the questionnaire to everyone (in addition to posting it here). I believe this likely gives as a higher response rate.


    Third thing that comes to mind. There is SO much valuable information on this forum (all buried and hard to find). Is there a small budget within the funds raised to employe a part time student researcher for two weeks, with the task (as directed & assigned by Dr. K/Dr. W or us) to mine and search for information in a way that would really add value to Dr. Wise & Dr. K needs. Btw, just out of a particularly bad POIS cycle, so maybe I'm not thinking so clear.

    If there is no money left in the pot, it may be worth considering raising a few hundred $'s for this down the road.


I think this is a great idea! I had started to do something like this myself (go to the forum entries, and systematize them, using a software for qualitative research) but due to time constraints have quickly given up. Maybe some of the experiences I gained while trying to do this can be helpful.

In order to organize forum entries, I used a software for qualitative data analysis called NVivo (http://www.qsrinternational.com/products_nvivo.aspx) which allowed me to mark certain parts of the text and tag them, for example with 'symptom',  'treatment', etc. Once this has been done, the software allows one to organize the content by tags, but also to find relationships between the tags.

I know that it is not allowed by the forum guidelines to mass-scrape information from the forum, but this might be a good reason to do so: I could e.g. write a little script which downloads the posts in such a way that they can be organized such that it becomes easier for e.g. a research assistant to classify them (the posts would be organized in tabular form - which can be analyzed in NVivo)

Concerning the funds for paying a research assistant to do so: If there are no funds left, I'd for example be very willing to donate money for this purpose - and maybe others as well.


P.S.
I  just got outta the hospital from a nasty diverticulitis attack. I'm recovering slowly but getting well!! Glad to be out again amongst the living!!
@demo, that sounds nasty, indeed. Good to hear that you are on the way to recovery.
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

Nightingale

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Re: Let's help Dr. Wise and the Rutgers Team!
« Reply #11 on: February 21, 2015, 04:09:14 PM »
BluesBrother, I was hoping someone would speak up about database experience. I'm glad you have a sense of how it works, it could be very useful and fast to use such methods. I linked this thread to Dr. Wise, but if you mentioned to her directly the methods you were using, I'm optimistic she would either understand how it would be helpful or maybe have even done something similar herself. She is a very accomplished researcher.

I too think a collection of treatments and who it has been effective for would be useful. For the sake of time though, starting with the symptoms and onset/duration would be most helpful to the research team at the moment.

I like the power of software! This approach would be so effective, and we would not need to ask *again* for people to fill out more forms!

I will tell Dr Wise we could use some help in this area, she has connections. Going through the research team on this would just make sense!

I encourage the rest of you to contact her with helpful ideas, I only have so much time myself. Let's get this party started!
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

demografx

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Re: Let's help Dr. Wise and the Rutgers Team!
« Reply #12 on: February 21, 2015, 04:14:08 PM »


I  just got outta the hospital from a nasty diverticulitis attack. I'm recovering slowly but getting well!! Glad to be out again amongst the living!!


@demo, that sounds nasty, indeed. Good to hear that you are on the way to recovery.


Thanks, BluesBrother! :)
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: Let's help Dr. Wise and the Rutgers Team!
« Reply #13 on: February 21, 2015, 04:47:44 PM »

I will tell Dr Wise we could use some help in this area, she has connections. Going through the research team on this would just make sense!

...Let's get this party started!


GREAT, Nightingale!! :)
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: Let's help Dr. Wise and the Rutgers Team!
« Reply #14 on: February 21, 2015, 04:53:29 PM »

@demo, as forum admin, do you have the ability to send out emails to everyone registered on the forum? Once we have set up the questionnaire, we could then send out a link for filling in the questionnaire to everyone (in addition to posting it here). I believe this likely gives as a higher response rate.


Daveman knows how. We've done it for fundraising here for NORD.
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

Daveman

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Re: Let's help Dr. Wise and the Rutgers Team!
« Reply #15 on: February 22, 2015, 06:41:13 AM »
EDIT: If you have questions for me, please ask on another topic or send me a private message. I'll be happy to share more of my talk with Dr. Wise with you that way. If you want to hear from Dr. Wise, send her an email (nanwise@psychology.rutgers.edu)

Hello gang!

..........


Hi Nightingale,

It's so good to see that we are beginning to get things started.

There must be some data that we can get our hands on, we did a survey some time back and also compiled information from a more manual survey.... we'll see how we can get that cleaned up and available. However, even in our peak, with hundreds of visits per day, it has been very difficult to get large enough responses to these surveys. I think our most concerted effort, (the manual survey/questionair) only got about 40 respondees. It's likely that POIS makes it difficult for us to commit to getting into a detailed questionair.

My time availability is very difficult right now, I have to dedicate all the focus I can muster to my present (and crucial) lifes tasks. Organizing and commiting to other things is extremely difficult.

But I think perhaps the best approach, given this difficulty, would be to start fresh. Perhaps those few who ar still reading the forum are likely the most dedicated, and probably among the few who actually participated in previous surveys, so a start there should have greatest punch in the short term. Next we could try to reach "retired" members thrhough a mailout, capturing as many of those who's EMails are still valid as possible.

And then involving members in a REAL form of progress. Perhaps members felt that previous surveys were not really related to any real research. Now they know that someone with "credencials" cares and is listening.

So I suggest activating the POLLs section. We'd have everything in one place, where members, including Dr. Nan Wise could go. We'd have to organize the polls to gather information which most benefits the given dorection that the research team is taking. I guess, as you indicate, focusing on onset timing and symtom descriptions.

We'd want to create more than one poll per item: instead of "what is the amount of time before onset?", several polls: Can you tell by the orgasm if the POIS session will be worse or better and how?, What are the very first symptoms you feel after orgasm? How long does it take to feel these first symptoms? How does the onset progress? What is the time from first onset to a stabilized initial onset? Etc etc.

I don't know if we can have Dr. Wise's input on the structuring of these polls, or perhaps they can create a questionaire which we can detail through polls.

Any ideas welcome.



WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Daveman

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Re: Let's help Dr. Wise and the Rutgers Team!
« Reply #16 on: February 22, 2015, 06:49:20 AM »
PS. It will be good to clean up the SPAM situation in the process.

There are links in the hosting service WEB site (www.superior.host.com), but I have a direct link to the owner of the service. He has given me direct rates for maintenance, but I haven't discussed a regular plan. I don't think he would respond to anyone who is not the manager of the account.

I'll talk to him and get rates, and set up a method for contributing to the "pre-paid" fund for our account. Then I'll post the information. We could eventually coordinate to authorize others.

Once we know how much it will cost, we can coordinate to keep the fund at a steady level. We don't want to over load the fund, but want to try to assure that we always have a positive balance.
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Stef

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Re: Let's help Dr. Wise and the Rutgers Team!
« Reply #17 on: February 24, 2015, 06:31:13 PM »
EDIT: If you have questions for me, please ask on another topic or send me a private message. I'll be happy to share more of my talk with Dr. Wise with you that way. If you want to hear from Dr. Wise, send her an email (nanwise@psychology.rutgers.edu)

Hello gang!

Dr. Nan Wise and I just had a Skype call to talk about POIS. It was such a great pleasure to speak with her! I gained a strong confidence in her abilities, she is a very smart and fun person! Wonderful fit for our study coordinator!

First, I would like to speak on her behalf by saying she sincerely apologizes for the delays and waiting for this study. She shared my frustration in this. She says academia can make one feel frustrated so often, making you feel like you are engaging in a game of "hurry up and wait". Dr. Pooja Lakshmin left the study to do her residency as a physician, and Dr. Wise was on another project until just now when she began communicating with us.

I am so excited because I learned that a lot is about to begin. Dr. Komisaruk has received his heart rate variability monitors. Dr. Wise says his enthusiasm is so great, he was like a kid with a new toy when he got his hands on them! This monitor will help determine what effect orgasm will have on our heart rate (I know my heart rate is low).

I want to point out that Dr. Wise wanted to talk with me because I am one of the people who can conveniently reach Rutgers (7 hour drive, and I have family close to Newark), and thus she wants to get to know me to begin the process of getting me involved in the study. I feel privileged to have this chance, and I want you all to be able to share in the excitement what you can! We have all been so deprived for so long, to finally be listened to by truly skilled AND compassionate people is a major morale booster! Dr. Wise is going to "get the party started!" (her words ;) ), and I wanted you all to know I think she's gonna be a great ally to us all! I also believe we are in for the highest level of transparency we have yet to experience. What a relief! It has been SUCH a long wait, and we have been SO patient. Dr. Wise totally empathized with me on this. She wants very much for us to be COLLABORATORS with this study!

So with that said, she wanted me to get something going on the forum that would be useful to the team. She would like a survey of symptoms, as well as a timeline of when they begin and when they end for as many of us that we can gather information on. This would help with identifying patterns. I know there was some concerted effort already to do something like this on these forums, does anyone know where to look? Dr. Wise and the team would be happy to have that data!

Hi Nightingale and Everyone --

Warm greetings from the polar deep freeze of CT.  We returned late last night from a week in Florida, visiting our son. I'm just catching up.

What a great post, Nightingale! 

I had the same impression of Dr. Wise (via email, not Skype) -- she's empathetic, understanding, open-minded, respectful -- and has a great sense of humor. :-)

I must tell you that Dr. K is the same -- he's your ally -- have no doubts about it.  He just needed a study coordinator to open up communications.
 
Question, Nightingale -- did Dr. Wise advise when participation will begin?

Stef

 

demografx

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Re: Let's help Dr. Wise and the Rutgers Team!
« Reply #18 on: February 24, 2015, 09:53:32 PM »


Warm greetings from the polar deep freeze of CT.

Stef




<waving>      Hi, Stef! :)


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

Nightingale

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Re: Let's help Dr. Wise and the Rutgers Team!
« Reply #19 on: February 25, 2015, 01:51:10 AM »
We didn't discuss that during my Skype call. I'm hoping to get a chance to talk with her again soon, in the meanwhile she sent me this by email:

Quote
Just a quick update to let you know that I am perusing the information on
the posts.  There is great info here.  Thanks, again. More to come.

Nan

I'll let you all know what I hear, maybe Dr. Wise will post on here before she gets to me.
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.