Author Topic: Members' Compilation and Suggestions for POIS Summary  (Read 59445 times)

Daveman

  • Administrator
  • Hero Member
  • *****
  • Posts: 1634
Members' Compilation and Suggestions for POIS Summary
« on: January 12, 2012, 11:50:35 AM »
We wish to provide a one stop orderly summary of POIS for both outside researcher as well as new and potential future members.

We wish to compile information from all our diverse sources, which have been developed over the last 5 years. As you know the NSF forum was organized as a one thread forum, so some information is deeply buried, and most of it not very organized, however there exists a treasure chest of highly detailed and relevant information there.

There are other sources like the POIS Compendium, surveys that have been developed over a large period with excellent demographic profiles, a collaborator data base, vsarious lists of user symptoms and medication attempted with corresponding results.

The first attempt will be to compile and summarize our experience. A second pass will produce formated relational databases which will allow us to find and compare characteristic.

This thread is to receive and process suggestions and solicit help in the processing and organization of this information.

A parallel thread will be created for a formal documentation and summary of the information.

The goal is to provide to you, the opportunity to help assure that the future of POIS will be resolved with the best of possible available information on the subject.

The actual generation of the format and documentation of the Summary thread will be undertaken by a committee of hopefully 3 volunteers plus Demo and I, to help assure that no decision is seen to be "personal". We will accept any volunteer applications by PM. The accepted volunteers will have moderator access to this category.

Thank you
« Last Edit: January 12, 2012, 11:56:51 AM by Daveman »
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!

mellivora

  • Full Member
  • ***
  • Posts: 191
Re: Members' Compilation and Suggestions for POIS Summary
« Reply #1 on: January 12, 2012, 05:26:53 PM »
Great Daveman, thanks,

SOME THOUGHTS:

INTRODUCTION:
I think for an introduction to the condition, Dr Waldinger's summary here is a good, brief description of what POIS is:

http://post-orgasmic-illness-syndrome.com/en/pois.html

We could use this for the basis of our own summary, adding our own collective experience to modify some sections. There is the summary in the POIS compendium too.

Some initial comments on the summary as Dr W has written it:

-"a medical disorder that only affects males" We have had one or two women complaining of similar symptoms after O on NSF. We could mention this although its clear that the sex ratio on this forum(SMF) is 1:0 M:F and of course the symptoms in the women could well have a different cause/ be later categorised as a different condition.

- It could be worth pointing out that its often perceived that we have 2 broad categories of people. Those who suffer mainly cognitive symptoms and those for whom physical symptoms (aches/pains) are a major issue. (the compendium does this). There seems to be a whole spectrum of severities and symptom mixes though so we need to look at the wording of this carefully to ensure we're being accurate.

- "The complaints last 2-7 days" -Its clear in some people that symptoms can last longer than 7 days so we should extend this (one of our polls shows this and I have experienced it myself in the past) or at least put something like 'most commonly' 2-7days.

Other things we need to summarise:

POIS RELIEVERS
Summary of things that have relieved POIS in sufferers and an idea of the overall success rates of these things.  (eg Niacin, Fenugreek, Testosterone). The success rates of most of these things could be summarised in two or three sentences. If we can get statistics on the number of people that have tried a given thing and the range of relief (as an estimated percentage/range of percentages) experienced by those people that would be good. We are some way towards this with Niacin. (However it can be tricky to separate such figures out as people are trying several things at once). Then we could give a link to more detail as required/if possible. Eg for Niacin we have an initial (and still evolving) collection of people's trials and experiences here: http://poiscenter.com/forums/index.php?topic=235.0


POIS AGONISTS (things that people have reported make symptoms worse)
There doesn't always seem to be  common ground here between sufferers but collecting data on this from forum members and summarising it would be really interesting I think. Things that have been mentioned in the past include stress, lack of sleep, carbohydrates, sugar. If possible,  lets try to find out what proportion of people are affected by each of these and other reported agonists.

SYMPTOMS IN MORE DETAIL
We could summarise the prevalence of symptoms as percentages. If so, we should state the number of sufferers that were included in working out the percentages for each symptom:

eg.
Brain fog/impaired cognitive function: 95% ( out of 80 sufferers)
Mental tiredness: 90% (out of 80 sufferers)
Joint aches 50% (out 60 sufferers)
(OBVIOUSLY I'VE MADE THESE FIGURES UP FOR SAKE OF EXAMPLE).

Ideally we'd have the same sample size (number of people surveyed) across all symptoms but depending how we manage to collect the data (eg old forum posts and questionnaires or new survey) this might not always be possible.

POSSIBLE CAUSES OF POIS:
Summary of existing theories (semen allergy/ autoimmunity etc)


PEOPLE KNOWN TO HAVE WORKED ON POIS
ie. Waldinger, Goldmeier etc with a list of their publications on POIS.

So my initial thoughts - and no doubt this will evolve with time and contributions from others

-SUMMARY OF POIS (similar to Dr Waldinger's above)

-PREVALENCE OF EACH SYMPTOM AS A PERCENTAGE OF SUFFERERS (this could be a link from the main summary if its too unwieldy)

-POIS RELIEVERS - things that have helped people (with an idea of how successful each is)

-POIS AGONISTS - things that make POIS worse with an idea of the prevalence of each (ie an idea of how many people report this)

-POSSIBLE CAUSES OF POIS

-PEOPLE KNOWN TO HAVE WORKED ON POIS (Waldinger, Goldmeier etc) with a list of their publications on POIS.

These summaries should be concise, clear and accessible.The more we can stick to facts and objective summaries rather than individual perceptions the better. We should be able to back statements up with real data where possible. Any detailed elaborations / breakdowns of data should be in separate sections that are linked to from the summaries rather than being part of the main body of the summaries otherwise we risk losing/diluting the main points and the readability of the documents will suffer
« Last Edit: January 12, 2012, 05:41:16 PM by mellivora »

Daveman

  • Administrator
  • Hero Member
  • *****
  • Posts: 1634
Re: Members' Compilation and Suggestions for POIS Summary
« Reply #2 on: January 12, 2012, 06:48:16 PM »
That's a pretty good start, thanks Mellivora,

My suggestion is that we take a bit of time to mosey on around NSF, and maybe the Compendium and start remembering bits an pieces that were key at the time.

I wnt back to page 10 of NSF, looking for B_Jims the list of user profiles. That was back in 2007, and on post leads to another and you can begin to see the beginning of history.

I think a casual walk around NSFs past will stir up lots of memories and help to stimulate the formulation of key points for our summary.

Also we have papers and general "theoretical directions" we can reference from about 6 different specialists.

Although we have our theories on what POIS is, I would like our summary to be as open as possible, yet informative.
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!

mellivora

  • Full Member
  • ***
  • Posts: 191
POIS SUFFERERS BY COUNTRY
« Reply #3 on: January 12, 2012, 06:59:10 PM »
A suggestion: We don't want to bias research activity to/ confine it within one country or other but I think it would be useful for researchers to know the distribution of known cases of POIS. We have attempted to show this using maps in the past and I started a thread on this elsewhere a while ago.

I've tried to think of the most basic system to make this data easier to collect. How about we just do a simple list of countries and the number of POIS sufferers (in this case forum members) in each country. Please post your country of residence in reply to this and I will update this post with the totals. I'll start with myself which makes one for the UK as I have posted below. I'll add other countries and update figures as you post them.

(If there is any reluctance amongst members to post their country of residence it would be good to know this. We haven't had too many people identify their countries in the past but my impression is that most people wouldn't have a problem doing this, its just that they happen not to have answered past attempts to collect this data).

One more thing: Since this thread will hopefully get replied to a lot, it may appear frequently as the most recently updated thread in this section (i.e.'What is POIS' )of the forum.  I don't wish for it to distract from Daveman's important main thread which he meant to be the focus of this section so please ensure you have also visited that here:
http://poiscenter.com/forums/index.php?topic=299.0


ARGENTINA: 1
AUSTRIA: 1
CANADA: 1
CHILE: 1
DENMARK: 1
FRANCE: 2
GERMANY: 1
INDIA: 1
ISRAEL: 1
ITALY: 2
NEPAL: 2
NETHERLANDS: 2
SPAIN: 2
U.K.: 4
UKRAINE: 1
UNITED ARAB EMIRATES: 1
U.S.A.: 10
« Last Edit: April 02, 2012, 03:56:12 PM by mellivora »

Habibou

  • Lab1
  • Sr. Member
  • **
  • Posts: 263
Re: POIS SUFFERERS BY COUNTRY
« Reply #4 on: January 12, 2012, 07:11:44 PM »
France
Brain fog 90%  + tired all the time ,sport intolerance, fast heartbeat, colon inflammation

badgerstripe

  • Newbie
  • *
  • Posts: 20
Re: POIS SUFFERERS BY COUNTRY
« Reply #5 on: January 12, 2012, 07:24:11 PM »
U.K.

Vincent M

  • Sr. Member
  • ****
  • Posts: 477
  • Physical overshadows cognitive symptoms. 10yrs.
Re: POIS SUFFERERS BY COUNTRY
« Reply #6 on: January 12, 2012, 08:21:20 PM »
United States
Taking ginger tea, no wheat, fenugreek+green tea/garlic, saw palmetto, niacin, boswellia, huperzine, B complex and nutmeg. See my treatment summary post for more info: http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513

victor.kons

  • Jr. Member
  • **
  • Posts: 80
Re: POIS SUFFERERS BY COUNTRY
« Reply #7 on: January 12, 2012, 10:50:51 PM »
Ukraine
3 day POIS sessions, brain fog, heartbeat, digestion problems. Currently using XN for 95% relief from POIS symptoms.

b_jim

  • Hero Member
  • *****
  • Posts: 1003
Re: POIS SUFFERERS BY COUNTRY
« Reply #8 on: January 13, 2012, 04:15:05 AM »
France
Taurine = Anti-Pois
Suffering from lyme disease

mellivora

  • Full Member
  • ***
  • Posts: 191
Re: POIS SUFFERERS BY COUNTRY
« Reply #9 on: January 13, 2012, 04:54:07 AM »
Based on some other posts on the forum I have added the following folk to the data:
B_Daniel: USA
Daveman: Chile
Demografx: USA
EDS: USA
Nightingale: USA

Vandemolen

  • Hero Member
  • *****
  • Posts: 851
Re: POIS SUFFERERS BY COUNTRY
« Reply #10 on: January 13, 2012, 06:26:52 AM »
The Netherlands.

Another member of NSF already made a list where the members are from:

http://sites.google.com/site/poiswebsite/pois-map
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

mellivora

  • Full Member
  • ***
  • Posts: 191
Re: POIS SUFFERERS BY COUNTRY
« Reply #11 on: January 13, 2012, 07:01:34 AM »
Thanks Vandermolen,

I knew about the map but couldn't remember the link. I certainly don't mean to fly in the face of similar work that has been done before or double up on work already done. I acknowledge that the map and graph on the link is a great visual tool.

However I would like to attempt to get data from more people. The map has 28 people listed.  To date, there are 111 people who are members of this forum and we know there are more POIS sufferers out there. It will also be good to get all this information in one place.

Also, it would be useful for future researchers to be aware of who is in which country, even if this is by anonymous forum names. This at least gives a future option of researchers being able to contact members via the forum to make people aware of their research and recruit them for a study. Who wouldn't want to be contacted to be involved in a study or at least be told of one happening in their country? By knowing our distribution in terms of forum usernames as well as just numbers, we potentially give ourselves an improved facility for helping recruitment onto research projects in the future.
« Last Edit: January 13, 2012, 07:03:24 AM by mellivora »

Observer

  • Global Moderator
  • Sr. Member
  • *****
  • Posts: 375
Re: POIS SUFFERERS BY COUNTRY
« Reply #12 on: January 13, 2012, 07:34:31 AM »
Spain here!

Daveman

  • Administrator
  • Hero Member
  • *****
  • Posts: 1634
Re: POIS SUFFERERS BY COUNTRY
« Reply #13 on: January 13, 2012, 10:03:27 AM »
The Netherlands.

Another member of NSF already made a list where the members are from:

http://sites.google.com/site/poiswebsite/pois-map


Thank you Van. We also intend to link in more of the Compendium, thank you.
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!

fsol

  • Newbie
  • *
  • Posts: 29
Re: Members' Compilation and Suggestions for POIS Summary
« Reply #14 on: January 13, 2012, 10:33:56 AM »
Denmark.