Data

[winding_road]

In one of the recent posts, somebody have mentionned the estimated number of people viewing this site, and it is Huge. Even the number of registered users is quite large. Those users are generally , as I feel it, well informed people (thanks to this website) and people who are trying many tests, sometimes different routes , medications and herbals.

I really believe that there is a BIG Opportunity and benefit from collecting data from the users. I think that the data will be able to show some trends that somoene might not be able to see just looking through the posts. I think I do not need to tell you about the importance of Data collection, that's the basis of any reserach in any science. I also see that most of the papers have very low population and this Website can provide the best data yet available, for chronic prostatitis / chronic pelvic pain syndrome sufferers. ( partly because of the number, but also the characteristics of the viewers as I mentionned earlier).

Even if the Data did not show any significant results ( WHICH I REALLY DOUBT AND CAN BET ON THAT) having simple statistics ( such as means and variance, and durational models estimates is necessary).

Indeed this is a suggestion that I wish the moderators will accept , and find interesting
I do research in Statistics (Ph.D.) and although I am extremley busy I have a lot of devotion for this subject. I will run all the estimates and tests, and take into account many possible bias (such as people who healed might not reply to the survey).
Anyway I will explain later what I will do exactly, with which software what models, for anyone interested in knowing the details.

But what is needed is of course two things : cooperation. Of course If the moderators ( which I thank 10000 times for this site) are interested in such project, you can design the survey. Since you have a better knowledge in the condition, and protocols and medications...ect, cause it is important to collect as much data as possible on the characteristics and the events together with the progress. ( I would say it should be a survey of at least 30 questions).

I think this could serve as a historical thing too, to see 10 years from now, if the increased awarness of this NON-Batcerial problems, will make a difference in the oneset of symptoms and presribed drugs and wasted money...

Hope to hear from you soon.
If you think it's not worthy no offens. Trying to help, but also Very Curious. ( you can be sure that I work with professors who wrote books on statistical methods applied to med science...)

Thanks for you time

[webslave]

What parameters would you be interested in collecting? I'm doubtful we could uncover much that is not already known statistically, because there have been quite a few high-powered studies in the last few years with numerous participants.

[winding_road]

Thanks for your reply. I would be interested to see those studies you are talking about . I am sure one could always add something. I am not saying that one is guaranteed to UNCOVER something, did all the studies did so ? I guess not. Looking for patterns, this is a feasible and always important scientific quest.

Besides a data could have many other useful objectives other than some sort of discovery. I am not a webmaster, is it very difficult to implement the questionnaire ?

Looking through the posts I noticed that there might be some patterns, of course they hardly distinguishable when it comes to reading 10 posts a day ( and generally you tend to forget afterward). I noticed some pattern with people suffering from ED ( pattern in the symptoms and their history), also people that are sensitive to food seem might have a characteristic that is different from those who don't.

Maybe people who think they developed this because they had some sort of excessive sexual life (or masturbation) might be the one might be who heal more easily (bc of trauma ?) than those who naturally tense their muscles because of their permanent stress or those who are genetically prepared... Man lot of things are interesting, talking with some people I noticed that their chronic prostatitis / chronic pelvic pain syndrome started at the same age they started balding. For how many people is this true. If a lot, if significant, then there might be something about hormones or whatever I'll leave the explanation for the professionals. Besides a data pushes people to talk about their condition and where they are at. If you send an email to all members asking them to fill a data, maybe the one who already healed and forgot about this board, are gonna go back and tell us where are they at. I did contacted a guy from here, a while ago, although he didn't say on the board, he had ED and he said that PT healed also his ED. This is incredible, nobody yet have claimed this, not even Dr Wise was able to tell me an example like that. We need to register those facts. And if we notice a big Outlier, we can try to verify it.

The parameters I was thinking about ( the idea was also to get YOUR opinion about the important variables) , beside of course the main characteristics of the individual and his pain : (this is just scratch, making a questionnaire takes a lot of thinking and time)

• history of depression
• depression after the onset of Symptoms
• nutrition : "lot of parameters.."
• medications
• relief from medications : (relief could take a ordered discreet number value, from 1: short term relief...to some number say 4: cured !)
• same for herbals and vitamins and enzymes
• sleep pattern, before and after the one set of symptoms
• age at which this started
• duration
• Historical pattern of the pain : did It increased than decreased, or it started at its peak and decreased since then.
• longest period of symptoms free
• expectation for the future optimistic, not so much, pessimistic
• you blame chronic prostatitis / chronic pelvic pain syndrome on : -sexual habits (excessive masturbation, long sessions,...) - Stress - anxiety - OCD -..other
• effect on sexual life ED, no orgasms,...
• historical pattern of the sexual dysfunction if any : - reached a peak in the middle, in the beginning, you're at a peak (I can put in a much elegant way.. I am just throwing the Idea)
• family (any related problem in the family?... (btw my brother had similar symptoms like me, although they vanished, but this is not the first time we hear this, we don't have numbers yet..)
• medical history
• PT sessions (number, period, effect...)
• how many PT sessions were needed to get a bit of relief (say 10%)
• before after Pt sessions
• Had any prostate massage, how many, results...
• meditation (?)
• Yoga (?)
• body building (or life weights at work or...)? (before and after CPPS)
• other sports (before and after). effects.
• here you can include other survey that quantify depression as I said before, but also OCD, or any other condition.
• family medical history
• by the time this questionnaire is going to be ready, lot of people would have tried enzymes, (I did started) and we can include that.

am sorry for my English, and also for writing quickly, I am surprised that the idea did not receive much interest. I thought everybody was will be interested in any project that might have some added value to our knowledge...

thanks

[kevin]

winding_road has some excellent ideas. I am certain we can uncover an enormous amount of information if we organize our data more systematically. There are a ton of basic things about the population of this forum that I'd like to know about: treatment (success rate of Stanford/Wise-Anderson Protocol, Valium, antihistamines), background (muscular pain, other chronic illnesses, presence of stress/anxiety/OCD/depression, family history of pelvic pain). These are all discussed quite frequently on the forum, but even after 6 months of using this forum I couldn't even give a rough estimate of their frequency. I am stunned that there is not more interest in this. Anyway, I'll write more when I have more time, but for now I'd like to agree with winding_road that some data mining by the members of this online community is more than merited.

Kevin

[winding_road]

Thanks Kevin.

Can you imagine a data collected from 300 people ? ! This will insure that some rather simple questions that you always wondered about like ( do all chronic prostatitis / chronic pelvic pain syndrome patients have this , or don t have that, or .... ) can be answered with a very high level of confidence.

Besides, as Kevin said, what is one of the common reasons people post here, and read through, many times they know they r not gonna find an answer, they r just needing input ...DATA ! to see if what they are living is related to CPPS, if it s normal, if it's not gonna go worse.

By the way I looked at the research papers on the webpage of UCPPS Data Archive and they are very interesting, but they mostly belong to another category of research. They're mostly testing some protocol, or sometimes other interesting and very specific questions. That s why they have such a low population.

Other studies could also be more useful even if they are not based on a particular experimentation. Where can you find a study that have together variables from medical history, to Chamomille tea and yoga, and masturbation....
HERE

[Canbob]

Webslave - Can you tell me if this survey was ever conducted? I would be really interested in the results. If not, can you refer me to a source for this kind of information? I know that everyone is unique but I'm really interested in numbers and trends. I have read many many posts but am only processing the information one post at a time and not statistically. Just wondering if anyone has ever actually done this?

[webslave]

No, not, because this is basic research and I cannot conduct it (no time, no money, no credibility). I highlighted in red a sentence in his post above that I think interesting in light of Dr Dimitrakov's recent work. And BTW, I did have a sudden balding episode right during my worst chronic prostatitis / chronic pelvic pain syndrome time. Since then it seems to have slowed down a lot.

[carld]

If all users would be more specific in their signature

Age on onset

specific symptoms

what makes you feel better

what makes you feel worse.....etc

That can be a start by simply getting the info from our signatures, because not every one is specific in our signatures.

[strobers]

I think that's a great idea too. I seem to be the only person whose chronic prostatitis / chronic pelvic pain syndrome started right after an orgasam and after years and years of high level sexual activity. I would like to know who else on this board, past or present, had there onset of chronic prostatitis / chronic pelvic pain syndrome start for the same reason and what they did or are doing to deal with it.

Even if it's not "scientific" research, I think we all can agree that it would be of interest and value to put something together in a way that everyone can understand; not just doctors, intellectuals and mathematicians. We may uncover some things that are practical and pragmatic as they pertain to chronic prostatitis / chronic pelvic pain syndrome that might help us deal more effectively with our particular symptoms.

[ramana]

I ABSOLUTELY support this idea. In fact, I was earlier wondering that it would be very good if we can have at least a statistical measure of how many people improved in what time. I can volunteer time if needed.
Webslave, it doesn't have to stringent clinical research. Even some rudimentary data mining can be useful.
From what I understand you had coined the term pelvic myoneuropathy. I see it at various sites on the internet so this board (and you ) does have some influence on the medical community.
So some statistical results may be utilised in broader research. If we can list the tasks, then we can see if the idea is feasible or not. Right now, my simplistic brain can see 3
a) Decide on the questionnaire
b) Make people fill that out (maybe letting them post only once the questionnaire has been filled, irritating but useful)
c) Do analysis and then post on website.

[webslave]

It's just that we went through all this before with a poster called Hepcat:
viewtopic.php?f=4&t=265

His email address is [email protected] and he hasn't visited the forum since 2004. We never did get a usable tabulation of the results of the questionnaire / survey either from him.

To do it again, we would need someone who knows how to put up a website, program a survey and store the results.

[BrettP]

Yea, all the website would need to be is a few radio buttons with a form return, pump the returned data into excel, and crunch the correlations. I think it would be a very simple website, maybe even something that the site itself could have people answer. I think data is extremely important in uncovering hidden trends, and being a number cruncher myself, would be more than happy to contribute my data. I think an important factor is what people believe contributed to the onset of the symptoms.

A domain from godaddy.com is like ten bucks for a year right? I just think this could be a very simple thing, have all the questions with radio buttons and maybe a text box to capture any text data, and then have the survey results emailed to the data collector. Make sure that people are only allowed to go once.

Does anyone know if there are various blogging programs that have this sort of functionality already programmed? I know there are surveys, but you just can't collect data....

[ramana]

I looked at the thread that webslave posted and I can understand his reluctance. Though I am not sure how much effort it takes to do that. Seems like something worth pursuing even if it falls on its face (worst case scenario - isn't that catastrophizing ). I think at this stage we can at least list the tasks and then see whether it is feasible or not

[webslave]

A lot of people reading this forum have IT jobs and could easily set it up. I leave it in the community's hands.

[kevin]

This idea has always interested me. Two things:

(1) There is already a website doing something even more advanced than this: PatientsLikeMe.com . However, at the moment they aren't studying CPPS/IC. As far as I know they plan to add diseases, and maybe in the future they'll let chronic prostatitis / chronic pelvic pain syndrome patients register. I think there's a request form on their website to add support for a certain disease.

(2) If someone wants to set up this type of informal study, it should be pretty easy. (Webslave and I are very busy at the moment.) I think it can be done without a website. For example, complex polls can be made using Google Documents:
http://googledocs.blogspot.com/2008/02/ ... start.html
Or one of those websites like surveymonkey.com . However, for privacy reasons we would need to do it without needing recipients' email addresses, which might get tricky. There might be an option to have a link to the survey. But before you decide to go ahead with something like this, get in touch with me or one of the other moderators/webslave, so we can make sure this is going right.

(3) I don't think the goal should be to create academic research; that is not realistic in any case. It would just be interesting for our own knowledge.