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.htmlWe 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 RELIEVERSSummary 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=235.0POIS 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 DETAILWe 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
