Author Topic: Announcement by Dr. Wise: New online survey study starting  (Read 20871 times)

DrNanWise

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Dear POIS Community,

My name is Dr Nan Wise. I am the Clinical Coordinator for the Rutgers University POIS study funded by the National Organization for Rare Disorders. 

I am pleased to announce that we are now rolling out a comprehensive online survey to collect qualitative and quantitative data regarding POIS.  This survey is in addition to the laboratory studies we are conducting for the POIS grant and will give us more information from more individuals to shed light on the syndrome 

As this survey has been updated and revised, please do take the opportunity to complete it, even if you have previously completed an online POIS survey.

Instructions will be posted to assist you with taking the survey. If you have any further questions, please email survey@poiscenter.com


Please know that we are committed to doing everything we can to help.

Nan Wise, Ph.D
Certified Sex Therapist, AASECT
Associate Research Professor, Rutgers-Newark
Fellow, The American Psychotherapy Association
Fellow, The National Board for Clinical Hypnotherapists
Board Certified Diplomate, The American Board of Examiners in Social Work
 

Nightingale

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #1 on: May 11, 2015, 02:00:25 PM »
As stated above, an online survey has been constructed to aid the team in gathering more information about this disease. It includes questions from the original Rutgers application, as well as new ones that the team has decided were important!

I have been excited to be working with Dr. Wise on how to best provide them this new information while making sure the Rutgers team is in charge of every detail. User BluesBrother and myself both worked to construct this survey, while making sure that anything new that was not in the previous documentation was approved by Dr. Komisaruk. The process was documented extensively by email, if you have any questions about how this survey was created please ask here. I want to make sure everyone not only understands why there is a survey, but why it should be trusted.

We are not going to be posting a direct link online, and we ask that no one do so. This will invite spam, and make it more difficult for the team to collect relevant data.

**EDIT: The newsletter has a broken link to the survey. In the link, please change the word "forum" to "form" to fix this. A new newsletter with the correct email will be sent soon.

So, without further delay:

You will either

1) get an email newsletter containing a link for the survey as well as instructions on how to complete it EDIT: the link in the newsletter is broken, a new newsletter is going to be sent with the correct link. You can fix this yourself by changing the word "forums" to "form" in the link!, or

2) if you do not recieve an email newsletter please email survey@poiscenter.com You will be sent a link and instructions from there

There are a number of people who are part of the online POIS community who are on other social media such as Reddit and Skype. Some of you have not been able to register here, so I would encourage those of you who are not to email survey@poiscenter.com

« Last Edit: May 12, 2015, 07:48:08 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.

Nightingale

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #2 on: May 11, 2015, 06:00:09 PM »
We understand the link in the newsletter is broken, a new newsletter is being worked on. If you already received the newsletter, in the link please change the word "forum" to "form" and it will work.

Apologies!
« Last Edit: May 12, 2015, 07:50:09 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.

Nightingale

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #3 on: May 11, 2015, 08:32:03 PM »
I have had a few people message survey@poiscenter.com thinking that it is a direct email to Dr. Wise and the team. It is not, it reaches me, BluesBrother and Daveman who are assigned to work out technical issues. BluesBrother and I designed the survey, so we are best able to deal with technical issues. Dr. Wise CAN be contacted, but it's best to first participate in the survey. We decided it would be a bad idea to put Dr. Wise's university email online because of spam.

This survey is your best way to tell Dr. Wise and Dr. Komisaruk your story! Please fill it out, there is room for as much detail as you would like to add!
« Last Edit: May 12, 2015, 07:58:34 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.

Daveman

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #4 on: May 12, 2015, 06:45:43 AM »
Hi everybody.

Please be patient! In the process of testing the mailout sent from here, two things happened:
   The mailout was inadvertently sent before it was fully tested, therefore the link to the survey wasn't completely functional
   Spam protection on the server limited the mailouts to a certain quantity per hour, so the mailot can't be sent to everybody on the list. (I'm working on that)

I hope that later today I can send out another mailout.

The mailout doesn't reach everybody, so in the meantime the mail survey@poiscenter.com is available. There should be no problem of server load using that mail.

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: Announcement by Dr. Wise: New online survey study starting
« Reply #5 on: May 12, 2015, 01:10:23 PM »
It's not an easy fix for the mail program. I have to limit the send rate to less than 150/hr. without the script timing out.

I know how to do it, but don't have the time to do it today. Maybe in a couple or three days.

Anyone who received the mailout, the link was close.... remove the u from ..../forums/....

Sorry for the mixup. Trying to do too much too quickly.

 
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: Announcement by Dr. Wise: New online survey study starting
« Reply #6 on: May 12, 2015, 04:10:49 PM »
It's not an easy fix for the mail program. I have to limit the send rate to less than 150/hr. without the script timing out.

I know how to do it, but don't have the time to do it today. Maybe in a couple or three days.

Anyone who received the mailout, the link was close.... remove the u from ..../forums/....


Sorry for the mixup. Trying to do too much too quickly.

Hi All,

I've been privy to the behind-the-scenes activity on this survey. The amount of work and detail required to get it mailed out is mind-boggling. One tiny, extra, little letter... and a link goes bad. I've done it so many times, myself.

Your comrades, Nightingale and BluesBrother, have been working on this round the clock -- while in different time zones! They're focus, without any question, is to assist the Rutgers POIS research team in any way possible.



Daveman -- don't you be concerned! Getting the survey mailed out is NOT an emergency.

Having lived in Israel for a few years, one of their often-used expressions comes to mind for me in this situation --> "L'at, l'at."

Translation: "TAKE IT SLOWLY."

Best to everyone,
Stef

PS -- Applause graphic inserted  by  demografx. :-)













« Last Edit: May 13, 2015, 09:23:14 AM by Stef »

Quantum

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #7 on: May 12, 2015, 09:17:44 PM »

Survey completed :-)   

I have received the link through PM by Nightingale, and it got me there easily.


Thanks to Nightingale, Bluesbrother, Daveman, and everyone else who have helped for this survey.

« Last Edit: May 12, 2015, 09:24:42 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

Colm

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #8 on: May 13, 2015, 08:22:36 AM »
Thanks lads for all your graft on the survey. It was very professionally presented. Just did it last night, only took about 30 mins. Go for it !

Keeping this survey front of house is important, is it not?

Can I make a suggestion that you find some way of also linking it to a clearly described forum entry on the home page, one that we also request no one to post anything else to.

I can do it later, if someone suggests the best thread.

The issue is, like a lot of great content here on poisforum it will just get buried when a lot of irregular visitors come back. Bear in mind also, that many will have used a temporary email address (setting up on this forum) one that they don't check very  often.

We need to support Nan and the team by ensuring we get as many people as possible to contribute. Their diligent work is deserving of this.

All the best ;-)
« Last Edit: May 13, 2015, 08:30:27 AM by Colm »

G-man

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #9 on: May 14, 2015, 10:46:27 PM »
Great work on the survey guys
31 years old. POIS since puberty. Cognitive and physical symptoms.

Scotymonty

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #10 on: May 15, 2015, 07:56:47 PM »
Nice work on the survey! It covered everything and left you an option to give lots of personal experience and insight.
I have had P.O.I.S. for 26 years now since I hit puberty. Muscle and joint pain along with brain fog are the worst symptoms. I unfortunately have not found much that helps. Always trying vitamins, exercise and to refrain from ejaculating.

BluesBrother

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #11 on: May 16, 2015, 05:06:07 AM »
Can I make a suggestion that you find some way of also linking it to a clearly described forum entry on the home page, one that we also request no one to post anything else to.

I can do it later, if someone suggests the best thread.

The issue is, like a lot of great content here on poisforum it will just get buried when a lot of irregular visitors come back. Bear in mind also, that many will have used a temporary email address (setting up on this forum) one that they don't check very  often.

Thanks for your suggestion. Maybe we can put the link to this thread in the News Box in the upper right corner?
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

ve-to

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #12 on: May 16, 2015, 05:15:52 AM »
Did it. thanks

Prancer

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #13 on: May 17, 2015, 01:32:51 PM »
How are my fellow POISer buddies? Great! I love the survey, and thanks to Nightingale, BluesBrother and everyone else for it. I'll also be completing it soon no doubt about it. I hear it takes around 30 mins. so I'll be filling it out when I have plenty of time to look at it and give it plenty of focus. I think it's a great idea! No question another big step in the right direction toward solving our problem. Thank you guys, you guys are amazing, and the survey looks and feels perfect!

Quantum

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #14 on: May 17, 2015, 09:27:20 PM »
Thanks for your suggestion. Maybe we can put the link to this thread in the News Box in the upper right corner?

I think it is a good idea, Bluesbrother, the News Box would be a good place to make members aware that there is a survey to complete
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: Announcement by Dr. Wise: New online survey study starting
« Reply #15 on: May 21, 2015, 08:49:06 AM »
I have not taken the survey yet, and here is why: I would like to know if you ask specific two questions on this survey, which I cant check because it only shows you one of four pages before you can continue (a feature I think was poorly thought out, as we should be able to see the whole survey in order to ask questions about it before answering). This doesnt mean I dont appreciate the hard work! Here are the two questions I believe need to be on this survey, and I will explain why if they are not:

1) Do you have an overbite?
2) Have you had chronic neck pain or neck muscle strain since puberty?

I do apologize for not bringing this up before in regards to the creation of this survey, which is lazy on my part. Now here is why I think it should be on the survey if it is not, especially in regards to this specific research study:

This research study is targeting the vaso-vagal response, which is a function controlled in part by stimulai received by the vagus nerve. The vagus nerve travels through the neck, where constriction of the nerve is known to occurr but is a rarely diagnosed condition that can affect the stimulai reveived by said nerve. Constriction of major branches of this nerve can also occurr in lower areas within the body, but are also much more rare, and even far rarer still to show up in diagnosis. Current testing has a hard time showing whether the vagus nerve constriction is a problem (nerve conduction study?). Anyways I know you cant ask questions covering every little thing, but I think this one has huge implications for ruling out a significant possible cause.

The reason for the first questiobn, is that unadressed overbites can also cause neck problems severe enough to cause permanent muscle tension and spinal misalignment, and therefore maybe the vagus nerve as well.

If the questions arent included on the survey, I will answer it in the section "List any other medical conditions that you think might be important" which I am positive you must have included on the survey. But I at least wanted to bring it up in hopes that if it ISNT included, people will voluntarily answer them in said section.

« Last Edit: May 21, 2015, 08:52:58 AM by Defsync »

Ccconfucius

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #16 on: May 21, 2015, 08:28:37 PM »
I believe at the end of the survey there is an option to add more in case the survey misses something particular to you.

BluesBrother

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #17 on: May 22, 2015, 04:07:26 AM »
I have not taken the survey yet, and here is why: I would like to know if you ask specific two questions on this survey, which I cant check because it only shows you one of four pages before you can continue (a feature I think was poorly thought out, as we should be able to see the whole survey in order to ask questions about it before answering). This doesnt mean I dont appreciate the hard work! Here are the two questions I believe need to be on this survey, and I will explain why if they are not:

1) Do you have an overbite?
2) Have you had chronic neck pain or neck muscle strain since puberty?

We have developed the survey in close coordination with the research team at Rutgers University. The questions you suggest are not included. The survey offers two text fields (on the bottom of page 1 and page 4) in which you can fill in everything you would like the research team to know which is not covered by the rest of the survey.
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

Starsky

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #18 on: May 22, 2015, 12:33:12 PM »
I have overbite and this is causing a lot of tension. Thats interesting that after orgasm this tension in jaw gets worse.

Nightingale

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Re: Announcement by Dr. Wise: New online survey study starting
« Reply #19 on: May 27, 2015, 08:57:24 AM »
I wanted to let everyone know that we have collected 50 entries in the survey, and growing daily :)
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.