Re: Applications for participation in Dr. K's POIS study

[Pflug]

Hi Stef,
I am a new member to this site. Is it too late to fill out a questionnaire and participate in the study? I live in California. Would this disqualify me from participating?


Thanks,

Paul

[Pflug]

Stef,
I left out the fact that I have been tested by an allergist in Berkeley, Ca. I gave a sample and did the skin prick test and was proven to be allergic to my own semen. I started hypo sensitization shots but had some issues and had to stop. Didn't know if this would make me a better candidate than others for the study. Thanks


Paul

[Stef]

Stef,
I left out the fact that I have been tested by an allergist in Berkeley, Ca. I gave a sample and did the skin prick test and was proven to be allergic to my own semen. I started hypo sensitization shots but had some issues and had to stop. Didn't know if this would make me a better candidate than others for the study. Thanks


Paul

Hi Paul,

Welcome to poiscenter!

From what we know, there may still room for a few applicants -- so I suggest that you fill out the questionnaires and send them via Fed Ex. 

Living in California would not be an issue for Dr. Komisaruk. But please keep in mind that you could end up having to stay near Rutgers for several days (I think at the most, 9 days, depending on your response to the Cerbomed ear stimulator).

Re: the semen allergy testing and the subsequent hypo-sensitization shots -- I can't answer for Dr. Komisaruk. But it doesn't seem that this would affect participation one way or the other. In fact, he might find it of interest. So if you can get hold of your records from your allergist (which should be easy to do), you should probably send them to Dr. K as follow-up. I'd advise letting Dr. K. know in your questionnaire (there's space for additional comments) that you were tested, received some shots, and that you'll send the records on to him. 

But get the questionnaires sent ASAP.

Wishing you the best of luck!!

Stef

[Pflug]

Stef,
Thanks for the quick response. I will get the questionnaire to the Dr. asap. Cerbomed ear stimulator? Wow. 

[demografx]

Welcome to POISCenter!
 



Here are some POIS resources which may be helpful to you:

We are proud to announce our first POIS research grant, awarded in December, 2013, to be managed for us by the National Organization for Rare Disorders (NORD). Grant awarded to:

Barry Komisaruk, PhD (Principal Investigator), Distinguished Professor of Psychology
Rutgers University
Newark, New Jersey, USA
Study title: Is POIS a Case of Vagal Dystonia? -- An fMRI Brain Activity Analysis

More about our Grant:
You can start here, continue reading following pages and other forum threads:
http://poiscenter.com/forums/index.php?topic=426.msg11042#msg11042

Click here to see Mat780's excellent YouTube POIS Channel.   Mat's YouTube videos include (1) our great new April 12 POIS TV Documentary. A must-see. And (2) The Learning Channel documentary, featuring our forum member "Animus".

Click here to see The POIS reddit post.  Outsiders (non-POISers) spontaneously gifted NORD's POIS Research Grant $1,000+ from this reddit post. Thanks to "mellivora" and "CertainlyPOIS"!

Our POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
Just click here first, and then look for "CHAT" button towards top of page, 6th button to your right!

Our POIS Forum - architectural genius: "Daveman" - for detailed subject-by-subject discussion.
http://www.POISCenter.com/forums/index.php

Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

The POIS Information Website is home to the POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g


Post Orgasmic Illness Syndrome "POIS": Case report

Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt

For more info, check out emi_b's  SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen


POIS Research Studies available Upon Request:

1. and 2. POIS Research Studies, 2011

These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggest one possible avenue of treatment.

3. First POIS Research Study, 2002

We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD, Ph.D., and Dr. Dave Schweitzer, MD.

   
4. Recent POIS Research Study, 2010

CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781


5. British Medical Journal Case Report, 2010

Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


How to get any or all of the above 5 studies: send the Administrators "demografx" or "daveman" a Private Message (PM) with your regular email address (e.g., jim@abc.com) and we'll send you back the PDF(s).

To send a Private Message, click on messages link at the very top of this page. Then click "Send Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "





It can be very  helpful to you when dealing with medical professionals to point this out. Click to see

POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research:

And in Europe: Orphanet now lists POIS on their website. - Click here.

The Post Orgasmic Illness Syndrome (P.O.I.S.) Forum is listed in the organization database of the National Organization for Rare Disorders (NORD) -- http://poiscenter.com/forums/index.php.  The link for this, through their home page, is --
http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail.


POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal (Dr. Selwyn Dexter's study), and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 5 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus our pages have been read nearly 2,000,000 times. Not bad for a rare malady.

Show some of this to your doctor - with pride. Chances are, you know far more about POIS than s/he does. Don't be intimidated by fancy diplomas. It's almost impossible for any one doctor to know much about POIS before you walk into his/her office. Unfortunately, it's up to you to educate them. And if you happen to find yourself with a disagreeable "student"-doctor (you're the teacher), find another doctor. Quickly!

SEARCH THE NSF FORUM ARCHIVES WITH GOOGLE

We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over  10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/

for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.

[demografx]

Community guidelines

We created POISCenter so that everyone would have a safe place to discuss health and wellness. These guidelines are the things we expect all POISCenter members and visitors to do, and not to do.

Do's

Be nice, be supportive

POISCenter works because we support and care for one another. Be nice, and be supportive. Do your best to respect  differing points of view.

Take your time and be safe

Please take your time getting started with POISCenter. After signing up, check your privacy settings and make sure that you are comfortable with how your personal information is being shared. If anything is confusing to you, drop us a line. We're here to help. We strongly recommend you not use your real name or e-mail address as your screen name. Your screen name is public, which means anyone on the Internet can see it, and find it. If you want to change your
screen name, you can do so here. We also recommend you not post personally identifiable information like your full name, e-mail address or phone number in POISCenter. If you want to exchange this information with someone you feel comfortable with, do so in a private message.

Let us know if something is wrong

If you see a member doing something that is contrary to these guidelines or simply feels wrong to you, let us know. If your instinct says something is wrong, it may very well be. We never reveal who reported a problem to us. Every post and member profile has a link to report the item for review, and you can submit your report anonymously.

Take a deep breath

The Internet makes it easy to forget that we're talking to other human beings, and tomisunderstand one another. If a member says something that bothers you, take a deep breath and pause before replying. You're replying to another human. They may be having a bad day or may be upset. You may have misunderstood them, or they may not have expressed themselves clearly. You may simply not see eye-to-eye. POISCenter works because we respect one another.

It's rare that we need to shut down a discussion, but when we feel that a discussion is generating "more heat than light," we do.

Respect the privacy of others.

Please respect the privacy of members and their right to remain anonymous. Do not post personal information about others in POISCenter unless you are a family member or have been directed to do so by the member, or their family. This often comes up when a member is hospitalized or otherwise away from POISCenter for a time. We understand that you want to know how your friend is doing and share that information, but the member's privacy must be respected. In some cases, you may know an POISCenter member in the real world. Perhaps you were in treatment together, or attend events together. When conversing in public settings -- such as discussions and journal entries -- please avoid posting information that could be used to identify the person. For example, don't post the member's real  name, or names of their children, if they haven't made that information public themselves. When in doubt, err on the side of caution and leave those details out.

Finally, please do not re-post information about a member from another site, like Facebook, in POISCenter. The information may not have been intended for a wider audience.

Do not's

These are the things we must ask you not to do, for the safety of members and to keep POISCenter running smoothly.

Do not use POISCenter as a substitute for, or to give, medical advice

POISCenter is not a substitute for professional medical advice or treatment. Always consult your physician and do not rely on the information in this site when making decisions about your health. The content in POISCenter is for information only and is not reviewed by medical professionals. Similarly, do not use POISCenter to give medical advice. You may share information about your experiences, but do not play the role of health professional.

Three week Rule

If you have found a treatment which seems to work very well to alleviate your symptoms and are dying to tell everyone about it, respect our three week rule. If you think you have found a treatment, make a short announcement that you think you have found something very useful, but that you will respect the three week rule before describing the treatment to others. The reasons for this are many-fold: the success you perceived may have been circumstantial, give the procedure time to prove itself, the treatment may only work for you and only in certain conditions and we don't wish to raise false hopes with our members unnecessarily.

And remember, the previous rule always has supremacy over this one.

No commercial use, promotion or solicitation

You may not use POISCenter for any commercial purpose, marketing, promotion or solicitation. This includes promoting a company, product, service, person, treatment, therapy, Web site, support group, non-profit, charity or fundraiser; recruiting members to participate in market research, clinical studies, or surveys; soliciting donations for charitable causes or for yourself; presenting your resume or using POISCenter to seek employment; and soliciting malpractice clients. Commercial entities are not permitted to sign up or create profiles in POISCenter.

Do not include links other than Email in your profile. Permission must be granted explicitly for any links on the site, including the profile area.

Member found using POISCenter for these uses will be banned, reported to appropriate SPAM databases AND deleted.

Do not post inappropriate content

We work hard to keep POISCenter a safe and comfortable place for members. Content, including avatars, that is obscene or violent, refers to material that is obscene or violent, or contains hate speech or remarks that are disrespectful to any race, religion, gender, sexual orientation or individual is not permitted. This includes derogatory remarks, attacks, or threats against POISCenter or POISCenter partners. Content that is potentially libelous, violates an individual's privacy, or violates the legal rights of any individual or entity is not permitted. Links to other sites which contain such material are also not permitted. You may not post information which is false or misleading, or misrepresent yourself. A "reasonable person" standard applies and we reserve the right to remove any content or profile that we feel violates this guideline.

Do not interfere with the operation of the site

We reserve the right to remove posts and block access by individuals which interfere with the normal operation and use of the site, at our discretion. Examples include off-topic posting, bumping posts, posts that excessively advance a personal agenda or make it difficult for other members to be heard, creating multiple accounts or aliases, and abusing the friend or private message features.

No copyright infringement

If you find an article or other information online that you think will interest members, post a short description, with an explanation as to why you think it is important and include a link to the original document if possible. That will allow your fellow members to retrieve the source document. Do not post the entire item or significant portions of it. If we think a post violates someone's copyright, we will remove it.

No scraping or data harvesting

You may not scrape, harvest or otherwise collect information in bulk from POISCenter. You may not copy content from POISCenter for another site, or for any other purpose.

Don't use POISCenter to offer or exchange medication

No part of POISCenter may be used to facilitate the donation, exchange or receipt of medication, as it is against the law to do so. If you are interested in donating unused medication to help those in need, you'll need to determine how the laws of your country and locality govern such donations. In the US, many states have programs through which unused medication can be donated for distribution to those in need. Good starting points for learning about these programs are your state's Web site, your physician, and your pharmacist. You're welcome to share information about such programs here, but you may not use this site to engage in or facilitate the exchange of medication.

The moderators have the last word.

These rules are general guidelines that follow a "reasonable person" rule, but they are not the last word. Situations may arise and new rules may need to be born, or considerations for the site and it's direction may need to be adapted. The moderators will always have the last word in the resolution of conflicts, situations and problems.

[Pflug]

Stef,
Do you know where I can find the consent form?

[Stef]

Stef,
Do you know where I can find the consent form?

Hi Paul,

The consent form is at the beginning of this thread, on page 2. It consists of two pages, so you'll need to print out both.

Demo used photobucket to post them on poiscenter:

Pg. 1 (Starts with "Attachment #4") --  http://i858.photobucket.com/albums/ab143/demografx/4FC82148-63D0-4AEF-81F0-52E13AA7D6D9.jpg

Pg. 2 (Starts with "Research Participant Initials") -- http://s858.photobucket.com/user/demografx/media/0D97E424-BB36-48A2-A52E-C14F1D1A1AA4.jpg.html

Staple them together, fill out second page, and include with the other questionnaires.

If this doesn't work -- please let me know.

Good luck!

Stef


 

[Brian VI]

Hello all,

Paul, California sure seems to be late on the news! lol - I am also from California.

I am aware that I am tardy due to a new position in my life that kept me off of the forum for awhile.

I have filled out all of the recommended forms that Demo has posted to mail to Dr. K. tomorrow.
Thank you Demo & the community for sharing the forms and valuable information on this website.

The fact that it should not be a problem for me if everything else checks out on my application.   I'm more than happy to help and equip as much support to those who can't make the trip.

Regardless, if I don't get accepted, I just want to show Dr K. and the team that are assembling this study, that there are more people who need to be let known-- a lot of people who are suffering from this unknown and rare syndrome, that hopefully this  study will get sent to other researchers and Scientist/doctors and to NORD and to NIH and cause awareness.  Unfortunately this may not  happen with this study very soon. Its also another step.

There is a previous thread conversation on this site regarding an online discussion room concept.  I would like to participate in future online conferences and phone meeting discussions, etc..  I think that will be a good concept to do in the future. It will give us confidences and will give me a positive vibe for the trying days ahead.  An assembly for a common purpose and act or process of someday coming together.


Knowing that we actually can talk to people who have or might have this syndrome.  Perhaps this could be done once a year, or maybe even a monthly meeting.

[demografx]

Welcome, Bryan!

[dean93]

Hi guys.

I'm assuming that now, 2-3 months later that it's a bit late to apply for the study (really I probably couldn't make it anyway, nor would I be a very good candidate).

But would it be in any way helpful to the research team to fill out the forms and send them in anyway?

[Stef]

Hi guys.

I'm assuming that now, 2-3 months later that it's a bit late to apply for the study (really I probably couldn't make it anyway, nor would I be a very good candidate).

But would it be in any way helpful to the research team to fill out the forms and send them in anyway?

Hi, dean93 --

It's not too late to apply for the study, just FYI.  According to a brief email message from Dr. Komisaruk ~ 3 weeks ago, he is still accepting applications.

Dr. K. is definitely interested in responses to the questionnaires, even if one won't be able to participate.  So -- please do fill out the forms and send them in, and include a note that you probably can't participate but want to help out by providing responses.

I don't know why you feel you wouldn't be a good candidate for this study, but we (Demo, Daveman and I) don't know how Dr. K is choosing participants. You could be an excellent candidate for participation!

Not pushing you -- just wanted to let you (and everyone else) know.  Dr. Komisaruk's  choices for study participation are his and his alone, and completely confidential.

Best wishes,
Stef

[Nightingale]

Hello all,

Paul, California sure seems to be late on the news! lol - I am also from California.

I am aware that I am tardy due to a new position in my life that kept me off of the forum for awhile.

I have filled out all of the recommended forms that Demo has posted to mail to Dr. K. tomorrow.
Thank you Demo & the community for sharing the forms and valuable information on this website.

The fact that it should not be a problem for me if everything else checks out on my application.   I'm more than happy to help and equip as much support to those who can't make the trip.

Regardless, if I don't get accepted, I just want to show Dr K. and the team that are assembling this study, that there are more people who need to be let known-- a lot of people who are suffering from this unknown and rare syndrome, that hopefully this  study will get sent to other researchers and Scientist/doctors and to NORD and to NIH and cause awareness.  Unfortunately this may not  happen with this study very soon. Its also another step.

There is a previous thread conversation on this site regarding an online discussion room concept.  I would like to participate in future online conferences and phone meeting discussions, etc..  I think that will be a good concept to do in the future. It will give us confidences and will give me a positive vibe for the trying days ahead.  An assembly for a common purpose and act or process of someday coming together.


Knowing that we actually can talk to people who have or might have this syndrome.  Perhaps this could be done once a year, or maybe even a monthly meeting.

Hi Brian!

Find me on Skype: thomasslowikowski

I can share contacts of other POIS members with you

[dean93]

Thanks, Stef. I just sent Prof. K and his team the forms.

[demografx]

Great going, dean!

[Alex]

Hello. Still do not know when to start the practical part of research? Probably after the new year? As I understand correctly, the end of the study in June 2015? That is, patients have not yet arrived at the place of research.
Sorry, do not speak English fluently, so I can not follow all the news actively.

Best regards,

Alex.

[demografx]

Alex, you can submit your application for study approval...or your experience!

[Alex]

demografx, I would do it with great joy, but, unfortunately, there is no possibility for me. I'm just a student from another country.

[demografx]

Thanks, Alex!

[dean93]

Alex, one of the forms says that it "expires" in June of 2015, but I am not sure what that is referring to. Maybe the document itself? Maybe when people can officially apply? It might be that the whole study must be completed in a year, but that seems really fast. I don't really know, maybe another member knows.

Where are you from, Alex?

I know this is a somewhat difficult question to answer, but does anyone know how long it's going to take to actually get results from this study? I know it won't happen tomorrow, but I'm just looking for a general timetable, if anyone has any knowledge or experience with this sort of thing.