Post Orgasmic Illness Syndrome (P.O.I.S.)
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: New POIS survey (2018) -- preliminary info  ( 709 )
La_pet1te_mort
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« : July 30, 2018, 09:50:58 AM »

Healthcare providers and people in general don't know about POIS and don't know what POIS involves. It is up to us, the POIS community, to get the information to them. 

To that end, I would like to conduct a survey of the community. I am a researcher, and am working on this project completely outside of my regular job, in my spare time. The result of the survey will be:
* Scientific papers on POIS published in medical journals, written by me.
* A publicly available data set, which will make it easier for other researchers to investigate POIS.

https://docs.google.com/forms/d/e/1FAIpQLSe0BbwBanIHuOMh3S6zGm8o9YJw635PVDP70qVETKHAl8cjNA/viewform?usp=sf_link

This is the DRAFT of the survey. Please go through the entire survey (as someone with POIS and as someone without POIS), and SEND ME COMMENTS about it. How can I improve it? What items should I add / remove / change / move? I would like to receive AT LEAST 10 reviews of the survey before I move further. The best way to reach me is through Reddit: /u/La_pet1te_mort

Please let me know if you are a researcher / healthcare provider / statistician or similar -- I would appreciate your help down the line in analyzing the data or preparing manuscripts.

UPDATE (2018-08-11).
* 14 amazing people took the survey and provided very useful feedback! That's more than the 10 that I hoped for. We're still at the very beginning of this project, and already my expectations are being exceeded. We can do something really good here.
* I especially want to thank Quantum from POISCenter.com, who provided extensive feedback.
* Based on all this feedback, I reworked the survey. I thought it was pretty good before. Now, it's much better and more thorough.
* PLEASE PROVIDE FEEDBACK on this NEW VERSION. Even if you have already provided feedback before (thank you!), please do it again. The new version is different.
* Please check everything you can think of, including wording of the questions, question descriptions, question clarity, and anything else you can think of. Every DETAIL counts. The survey will be filled out by both POISers and non-POISers. Is everything clear for someone not familiar with POIS? Any comments, big or small, are appreciated.

PRELIMINARY STATS.

* Once the survey begins, I plan on providing preliminary stats based on the responses thus far.
* Based on the 14 responses to the previous draft of the survey, we see that people of all ages have POIS. The ages ranged from 18 all the way to mid-50's.
* I found out about a couple of POIS forums that I didn't know about before. One of them is in Russian. POIS affects men around the world.

« : August 11, 2018, 08:14:59 PM La_pet1te_mort »
Nas
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« #1 : July 30, 2018, 02:48:30 PM »

Ok, I'm done doing your survey; pretty good survey in general.
I wonder when will you start recording your actual surveys?
Also if you need help with soreading this survey we can help.
La_pet1te_mort
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« #2 : July 30, 2018, 03:33:52 PM »

Thank you! You are the first person to respond to this. I hope there will be a lot more.

I've changed a couple of questions a bit based on your responses. This was very useful.
MirkoThiel0
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wenn du deutsch bist dann schreib mich an :)


« #3 : August 02, 2018, 05:23:27 AM »

Happy to see progress, did take part.

Fernando from Brazil
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36 year old. POIS Since I was 28. Vagus Nerve Heal


« #4 : August 02, 2018, 03:05:41 PM »

I did it.

My POIS only happens with masturbation. Normal sex does not generate POIS symptoms. When I have no back pain and I masturbate the POIS symptoms are weaker and last for at most 2 days. My POIS is related to the health of my thoracic and cervical spine. Postural and Aerobic Exercise heal the vagus.
Quantum
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« #5 : August 03, 2018, 01:20:07 PM »

HI LPM,

I have done the survey.

Here are my suggestions:

- The early section with the "groups" of symptoms, and the later one on p.5 with the "clusters" of symptoms should be regrouped in only one survey section on POIS symptoms

- I would suggest that this POIS symptoms survey section would be a choice from individual symptoms, that is, a long list of symptoms, each having a box in front, so that they can be individually checked.  This would produce more raw data, so the interpretation part is left untouched for the researchers looking at the data  ( clusters or group of symptoms contain a "pre-interpretation" of data ).  And, of course, a place to list other symptoms, at the end, like you did, is important.

- I would make the list of symptoms to check from as long as possible, from known POIS symptoms  ( you can see a list I made from reports on the forum, to add to those you already have, at http://poiscenter.com/forums/index.php?topic=2027.msg15927#msg15927 - just forget about the cluster grouping)

- at the very least, you should separate cognitive symptoms ( brain fog, memory problems, ...) from emotional symptoms ( anxiety, irritability, ....)

- On page 5, about the impact of POIS on ADL ( Activities of Daliy Living), I would add a few other similar sections, because only this ADL section, at least in my case, do not show the full extent of POIS negative effect on life. So,  I would add 1 to 10 impact scales on "Social Interactions" ( which are not ADL, but a significant part of life, which is usually adversely impacted in POIS ), and also very important, another section on impact on "Work and/or Studying", which is a major problem in POIS.   You could also add the question for IADL ( https://en.wikipedia.org/wiki/Activities_of_daily_living#Instrumental ), but the two previous ones  ( social relations and work/studying) are more representative of POIS burden in personal life.

- I would suggest to add a section on normal and abnormal test results

- I would also suggest a section about methods that help alleviate symptoms

Thanks for your initiative, LPM :)

« : August 03, 2018, 01:24:59 PM 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
La_pet1te_mort
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« #6 : August 04, 2018, 10:31:02 PM »

Hi Quantum,

Thank you very much for providing such extensive feedback. You make some excellent points, some of these I've been thinking about myself as well. I'd like to talk through some of these issues ? I am thinking out loud. PLEASE let me know what you think.

(Also, thank you for all that research you did back in 2015 in the link that you give. I can see it took a lot of work.)

Symptoms/
The survey needs to be relatively brief. The longer the survey, the less people will take it. The survey is meant for both POISers and non-POISers. The "POIS details" section is only asked of POISers ? all other sections are asked of everyone. The other sections will allow us to compare POISers to non-POISers. The POIS details section will allow us to say something about POISers without reference to non-POISers. POISers would be willing to spend more time on the survey, so it's fine making the "POIS details" section a bit longer. But non-POISers probably are only willing to take a brief survey, so making the other sections much longer is risky.

Symptoms questions ? does it make sense to ask them in the General section or POIS details section? I've gone back and forth on this. Tell me what you think. I am somehow overthinking this.

I have a personal hypothesis that POIS might be related to another disease. The 3 groups of symptoms in the General section are the groups of symptoms of that other disease. IF it turns out that POISers have these symptoms more than non-POISers, that will support this hypothesis.

THEN, in the POIS details section, I ask about 7 clusters + 2 additional symptoms. These 7 clusters + 2 additional symptoms are from Dr. Waldinger's research. He says that POISers have these symptoms. The items are there to test or confirm his assertion.

How should these items be combined (also to include the symptoms that you've collected)? In what section? How to keep them relatively brief?

ADL/
The only reason that I am using this scale is that I found it in a reference (https://www.webcitation.org/6Ag75MDIq). I don't think it's a great scale. However, I do want to use a scale from the literature. Can you find other scales that you'd rather use on a site like pubmed? That would be a big help.

Test results + Methods/
I could add these as optional sections. What specific items should I put in these sections?
Quantum
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« #7 : August 05, 2018, 09:22:32 AM »

Hi LPM,

I am glad that my feedback is helping you in refining your POIS survey.

So, here are my feedback on your thoughts ( only my point of view, so you do as you prefer, since it is your project):


- Symptoms section(s):

Now, I understand that there will be 2 different versions of the survey, depending on the subject answer about having or not having POIS ( correct me if I'm wrong).

If so, I would present the general section only to non-POISers, as a way of validating with a control group.   At the end of the symptoms section for non-POISers, I would aslo include a question like "Do you have any symptoms after orgasm?", to clearly define the non-POISers as a control group.  And, I would present the detailed, long list of symptoms to check from, only to POISers, obviously, and not having done the previous general section, there would not be a sense of duplication.   The data from non-poiser do not have to be specific, it is there only as comparison to POIS sufferers.  On the other hand, if you want to know what percentage of POIS sufferers have red eyes, and want to see what percentage have skin rash, and want to see if all those who have red eyes also have skin rash, you absolutely need an individual assessment of each symptoms.

I would resist the temptation to group the POISers symptoms section in clusters, if your goal is to present raw data to eventual POIS researcher.   Research teams work from their own understanding and own hypothesis, and they will want data as objective as possible.   

Your own hypothesis is leading to regrouping the symptoms in one definite set of clusters.   There are Waldinger 7 clusters, and I bet that he may come up with a different clusters regrouping in a coming article, because his view on POIS has changed since then ( I do not really like his 7 clusters anyway, to be honest).  If you look at my symptoms list, you will see my 4 clusters are also different, because my hypothesis is different.   If you would ask someone with another hypothesis, he would come up with another clusters regrouping.   So, I think you may separate the symptoms in a few, very general sections, like "muscular and bodily symptoms", and " Cognitive and emotional symptoms", but, still list them individually, so they can be check individually.   I feel that a list to check from is not very long to go through, and will lead to much more rich data, because when you choose a cluster where you have at least one symptoms from a variety of symptoms, it tells nothing about the symptoms you have.  I really like the idea to be able to give a precise percentage for any symptoms, and compare its occurrence with any other symptoms.  I also like the idea of being able to look at very precise and complete pattern of symptoms for any POIS sufferer that had filled the survey.


So, it all depends of you do the survey in order to to a study on your own hypothesis, leading to publish your own conclusions, or you want to do a survey to publish objective data for the scientific community.   If you still hesitate between the two, I think you will have to make a definitive choice, so that it is mentioned to those who will do the survey.  If you are not a medical researcher, and say " I gather data to confirm, or not, my personal hypothesis", you will have less participants than saying " I gather data, and will publish those POIS data in order to fuel the scientific community with good, objective data about POIS".  If you choose the later, and I think this would be more useful for the POIS community, the data collected should contain the least interpretation possible.

For the POIS sufferers section, I would list any symptom once only, and list all those you have, and insert all those in my list that you do not have.  There is no problem in listing similar symptoms in a given order, so "muscle pain" and "muscle twitching" will be side by side ( rather than a list that is all mixed up), but any subject would be able to check one, or the other, or both, allowing for better data.

- Symptoms scale

the 0-10 pain scale is a classic scale used every day by health professionals.   You will find many reference to it, in different versions, like the one from the wikipedia you mentioned, and , for example, at http://compass.rehab/patient-resources/medical-pain-scale .

I would adapt for Social interaction, and then for work/study. 

This would give, for social interactions:

When you are in POIS acute phase, what is the level of interfering of your POIS symptoms with your social interactions ?

0  no interfering
1 very minor interfering
etc....( following the example I gave the link to)

Same thing for work/studying

If you want 10 very detailed level, you can use the model in the link I gave.  Otherwise, you can use the wiki reference model, and use 4 levels:  no interfering (0 ), mild interfering  ( 1-3), moderate interfering (4-6), and severe interfering (7-10).

- Test results section

Many options are possible, but to keep it short, you can put open questions like:

1.Normal blood tests:
2.Abnormal blood tests:
3. Medical imaging:
4. Other test results:

It's up to you to see if you want to list some standard tests ( but we know that standard blood works are almost always normal, so I am not sure at this point if it worth it to list some specific tests.  So may be better to leave it open) .

- Methods of relief

My suggestion would be:

1. Are you using supplement(s) before orgasm that brings you some relief for your POIS symptoms?
if yes:  name(s) of supplement(s)
Level of relief ( %):

2. Are you using supplement(s) after orgasm that brings you some relief for your POIS symptoms?
if yes:  name(s) of supplement(s)
Level of relief ( %):

3. 1. Are you using supplement(s) on a daily basis that brings you some relief for your POIS symptoms?
if yes:  name(s) of supplement(s)
Level of relief ( %):

4.Are you following a specific diet that helps you with your POIS symptoms?
a.gluten free
b. Paleo
c.AIP
d. other:
Level of relief ( %):


5. Are you using any other method that brings you relief for your POIS symptoms?
if yes, please describe:
Level of relief ( %):

Just a fast draft, to give you some ideas for this section.

--


Don't hesitate to come back with other thoughts, LPM. This project is an interesting initiative.


« : August 05, 2018, 05:29:20 PM 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
CarloFrancesco
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« #8 : August 06, 2018, 05:16:19 AM »

Just signed up to the forum to thank you for your efforts. I did the survey. Would be great if it leads to a public available database which can be used for some data wrangling. Maybe in the future it can be combined with some blood test parameters to dig deeper into the matter.
La_pet1te_mort
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« #9 : August 08, 2018, 10:18:30 PM »

Hi all,

I have made substantial changes to the draft survey, a lot of them based on Quantum's feedback.

Quantum -- I would very much appreciate it if you review the new version of the survey.

See what I've done with the symptoms. I've realized that sometimes breaking up a larger symptom category into smaller symptom categories does not work. Sometimes the larger symptom category is more understandable. I don't think Waldinger's clusters can be easily broken up into smaller categories. Many of the words that he uses to describe each cluster basically refer to the same thing.

I also added all the symptoms that you've cataloged (thank you!). You mentioned the possibility of repetitiveness. Which symptoms in which questions should I remove?

I improved the questions about symptom severity, based on your feedback. I also added a section for test results and additional sections for methods for alleviating POIS.

I need a few fresh pairs of eyes, especially you Quantum.

Everyone's input is appreciated.
Quantum
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« #10 : August 09, 2018, 10:29:46 AM »

Hi LPM,

I just went through your new version, and I think it is a much more powerful tool to get really interesting data about POIS :)

( for those wondering, the survey is at https://docs.google.com/forms/d/e/1FAIpQLSe0BbwBanIHuOMh3S6zGm8o9YJw635PVDP70qVETKHAl8cjNA/viewform?usp=sf_link .  If you already did it, choose "modify" and you will go through the new version)


Here are my comments:

-  I have noticed that if you answer "No, never had POIS" on page 4, you then are taken directly to last page ( page 11), and no further question.  I would see another questions to the non-POIS group, like an open question along the lines of " Do you have any fatigue or any symptoms after sex, be it alone or with someone else?", and if yes, description .  This would give a more complete picture of the "control group".  I do not know if it is possible to insert a different "page 5" for them, but I think it would be valuable data from non-POISers who take the survey.

-  on p.6 of the "POISers version", I would skip the top part with clusters, , because I think the later part with individual symptoms covers the symptoms description better, but it is as you prefer.  But it does not hurt to let the clusters section there - it is not a problem to have more data than less, and I think that the time needed to complete the survey as it is is fine ( maybe someone else will give his opinion about this, too)
  I feel the individual symptoms part ( from "Local genital skin irritation" and after, emotional symptoms, and so on...) is far more flexible and interesting, so a researcher can build very interesting analysis ( differential incidence, absolute incidence, grouping, any analysis a researcher want to do , like "what percentage of dose having muscles twitch also have rhinitis?", if it seems relevant for his hypothesis, etc...).

- I am comfortable with the individual symptoms list to be long, because POIS is not the same for every POISers, so every POISer will feel "included" in this POIS survey, finding at least most of his symptoms mentioned in the list.

- The image you have chosen for the scale part is very descriptive, and all this part is great ! it can really give a clear picture of POIS negative effects on someone's life, which is not obvious for non-POISers - and for researchers.  This will matters in taking this syndrome more seriously, seeing that it is a real nuisance for many aspects of life.

-  on page 9, I would change a word:   in the answer about protocol , "it completely or almost completely cures POIS", I would definitively change "cures POIS" for "relieves POIS symptoms".  To cure is to completely get rid of, once and for all....which is not the case of our known protocols - they are efficient if we continue to use them, unless POIS will manifest again.

- still on page 9, on the question about what our protocol involves, only one choice can be made.   In my case, I would have marked 3 choices:  supplements, diet, meditation.  I can check supplement, and mention the others in the "other" section.   I do not know the technical aspects behind the survey making, so I do not know if it is possible to program a question for possible multiple answers.   

Thanks again for your involvement, LPM, this project is something very valuable for the whole POIS community :)

I hope others will look at your survey and make comments, too.




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
La_pet1te_mort
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« #11 : August 09, 2018, 01:48:13 PM »

Symptoms of non-POISers. I do want to add a section for non-POISers about their post-sex / masturbation symptoms. What exactly it will look like I don't know yet. Still thinking.

Protocols. My initial idea was that people will enter each protocol individually. A particular supplement, a particular exercise, each one would be entered individually as a separate protocol.

I currently have sections for 2 protocols. I was going to add more sections once I / we were happy with these ones.

Or is this wrong? Do people do a whole bunch of things at once (a bunch of supplements and exercises all at once)? In that case, they can't separate them out, they can't tell what part of the protocol is really helping. If that's the case, I have to rework this section. Suggestions?
demografx
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« #12 : August 10, 2018, 10:15:29 AM »

Excellent undertaking, LPM!

Best wishes!

demografx




Usually have major 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 associated with it.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business.
La_pet1te_mort
Newbie
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: 19



« #13 : August 11, 2018, 08:11:37 PM »

UPDATE (2018-08-11).

* 14 amazing people took the survey and provided very useful feedback! That's more than the 10 that I hoped for. We're still at the very beginning of this project, and already my expectations are being exceeded. We can do something really good here.
* I especially want to thank Quantum from POISCenter.com, who provided extensive feedback.
* Based on all this feedback, I reworked the survey. I thought it was pretty good before. Now, it's much better and more thorough.
* PLEASE PROVIDE FEEDBACK on this NEW VERSION. Even if you have already provided feedback before (thank you!), please do it again. The new version is different.
* Please check everything you can think of, including wording of the questions, question descriptions, question clarity, and anything else you can think of. Every DETAIL counts. The survey will be filled out by both POISers and non-POISers. Is everything clear for someone not familiar with POIS? Any comments, big or small, are appreciated.

PRELIMINARY STATS.

* Once the survey begins, I plan on providing preliminary stats based on the responses thus far.
* Based on the 14 responses to the previous draft of the survey, we see that people of all ages have POIS. The ages ranged from 18 all the way to mid-50's.
* I found out about a couple of POIS forums that I didn't know about before. One of them is in Russian. POIS affects men around the world.
Quantum
Administrator
Hero Member
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: 1047



« #14 : August 12, 2018, 09:57:17 AM »

Thanks for you words of appreciation, LPM   !   :)

I do not have time at the moment, but I will soon take a look a the new version and give you my feedback.  However, I hope other members will do it before I do, in order to have another perspective and a fresh look at the survey.


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
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