[Guthrie]

Demografx,

No, I didn't mean to indicate any opposition to getting a research endocrinologist involved.  I just thought it could be helpful to have a different format of organizing the material we have already compiled and that we continue to compile. 

For instance, it would be good if we had a way of subdividing the different messages we post into different categories, so that if someone wanted to see all posts relating to, for example "bloodwork and results", they could have them all pulled up, without having to search through the entire 27 pages of the thread. 

This French POIS blog is like ours, in that you can read all the posts in chronological order--but you can also use the "Categories" sidebar on the left to select out different categories of posts.  http://fatigueapresorgasme.over-blog.com

Or, another option is a forum that is divided into different threads, each with its own sub-topic, such as this one: http://recover.forumup.org/

It seems that finding a way of organizing our posts would also make things easier for a researcher to read through.

Anyway, I don't know what the best way of doing this would be, but it seems like something that could be helpful.

[Guthrie]

I also noticed that our POIS thread is over three times longer than the next-longest thread in the "Physiology and Medicine" section of the Naked Scientists forum (664 posts vs. 215 posts)!  This adds further weight to the sense that our thread might be getting a bit unwieldy.   

Is there a way for the Naked Scientist moderators to allow us to mark our different posts with different category-labels?  Or is that impossible, given the way the website is set up?

[imre1]

Pyropeach and I have found that we are physically the same height and body build. Also we have the same temperament.

This would indicate that POIS is genetically determined at birth.

[imre1]

Also, you might find this article interesting: http://www.reuniting.info/science/articles/acute_dopamine_depletion_causes_psychological_distress

I have read this text and I can not find any symptoms described that would match POIS symptoms.

This is absolutely not the cause of POIS.

Actually if you can identify with this text you are not even close to having POIS.

[Counterpoints]

Also, you might find this article interesting: http://www.reuniting.info/science/articles/acute_dopamine_depletion_causes_psychological_distress

I have read this text and I can not find any symptoms described that would match POIS symptoms.

This is absolutely not the cause of POIS.

Actually if you can identify with this text you are not even close to having POIS.

Anxiety, loss of fluency of speech, confusion, difficulty concentrating, dizziness, etc. 
following orgasm?  From what I've read, that seems to fall under the symptoms that people have described here.  Not that I would WANT to have POIS -- you act as though you are some kind of authority who is excluding me from his precious group.  Grow up.  POIS at this stage is not particularly well defined, and I would be glad not to have any unusual anxiety symptoms following orgasm.  In fact, POIS was initially defined as a condition that affects middle aged men.  I suppose if you are not middle aged, you absolutely do not have POIS: you are just one of the very few people who has an unusual reaction to orgasm, but you have something different entirely *rolls eyes*.  I get the sense the motivation for your post was quite malicious; it makes me not want to help you.

My symptoms do match most of the ones described in that article.  Perhaps what I and others are feeling is partly a result of dopamine depletion following orgasm.  Who else identifies with this?
http://www.reuniting.info/science/articles/acute_dopamine_depletion_causes_psychological_distress
The only symptoms that *don't* describe how I feel are "visual and audible stimuli were less sharp", and "he felt a loss of control over his ideas", "maskface and tremor".

[Counterpoints]

Pyropeach and I have found that we are physically the same height and body build. Also we have the same temperament.

That indicates absolutely nothing as far as POIS being genetic.

[girlwind]

I'm more inclined to submitting our data to a research endocrinologist than a neurologist or psychiatrist. I'd like to know
the CAUSE of this condition and to treat that, rather than to treat it symptomatically with psychiatric drugs or other exper-
mental medications. In my case specifically the only imbalances found in my blood work and other tests throughout the
years have pointed to hormonal imbalances. These have included thyroid, cortisol, and DHEA levels.

I think it's a great idea for all of us to submit our personal histories with POIS to a data sheet that includes:
1) Sex, current age, current medical status and medical conditions (diabetes, heart disease, CFS, etc.)
2) Age of onset of POIS symptoms, (including whether it was a sudden or gradual onset);
3) Inventory of POIS symptoms specific to each of us (including severity of debilitation and duration);
4) Personal history relevant to POIS symptoms (Total number of years afflicted/how that's affected our lives);
5) Diagnostic tests done in attempt to find cause (blood work, MRI's, etc);
6) Any significant abnormalities discovered in those tests;
7) Attempted treatments, duration of treatments and their results;
Personal observations and theories about our experience with POIS.

We really do need a place to post this info in an organized way, and we need someone to compile it all for a study.
Does anyone have a concrete plan about that yet?

[Bizzy]

I dont think there is a need to create a new forum with better compiled subsections, although anyone who feels the need can do so. We dont have a large volume of novel information. All the details listed so far can easily be incorporated into a letter. A comprehensive record of member details can be created but we should first try and get the attention of some research group or professional.

[Counterpoints]

Does anyone have a concrete plan about that yet?

It would be very easy to write an online data form like you suggest, that people could fill out and submit.  One of the entries could be the internet handle used on this forum, so the data could be associated with a post history in this thread.

I could write the code for the form, although I would need someone else to host it.  The application would obviously take up negligible bandwidth and data space.  Of course, I couldn't guarantee this information would be kept private, though it would likely be associated with whatever internet name you choose to submit it under, not your real name.  We could have the forms available for browsing as they are submitted, and then also continue the discussion we're having in this thread.  And we could make the form available in French as well, and have the contents translated into English and vice versa, in order to combine resources with the other French effort.

[demografx]

I'm more inclined to submitting our data to a research endocrinologist than a neurologist or psychiatrist. I'd like to know
the CAUSE of this condition and to treat that, rather than to treat it symptomatically with psychiatric drugs or other exper-
mental medications. In my case specifically the only imbalances found in my blood work and other tests throughout the
years have pointed to hormonal imbalances. These have included thyroid, cortisol, and DHEA levels.

I think it's a great idea for all of us to submit our personal histories with POIS to a data sheet that includes:
1) Sex, current age, current medical status and medical conditions (diabetes, heart disease, CFS, etc.)
2) Age of onset of POIS symptoms, (including whether it was a sudden or gradual onset);
3) Inventory of POIS symptoms specific to each of us (including severity of debilitation and duration);
4) Personal history relevant to POIS symptoms (Total number of years afflicted/how that's affected our lives);
5) Diagnostic tests done in attempt to find cause (blood work, MRI's, etc);
6) Any significant abnormalities discovered in those tests;
7) Attempted treatments, duration of treatments and their results;
Personal observations and theories about our experience with POIS.

We really do need a place to post this info in an organized way, and we need someone to compile it all for a study.
Does anyone have a concrete plan about that yet?

Girlwind, I have already initiated contacts for a research endocrinologist through Chris/TNS and pyropeach here, for Cambridge University and Oregon Health - OHSU - respectively.

If you have ideas for a University or other contact, please let me know and I can send an email invitation.

[demografx]

I dont think there is a need to create a new forum with better compiled subsections, although anyone who feels the need can do so. We dont have a large volume of novel information. All the details listed so far can easily be incorporated into a letter. A comprehensive record of member details can be created but we should first try and get the attention of some research group or professional.

Thank you, Bizzy, I agree. I think at this stage of the game it would be a bit confusing to carry on multiple efforts. But I am not opposed to ANYTHING that will bring us closer to a universal cure. So let's not shoot ourselves in the foot with confusion.

[demografx]

ATTENTION EVERYONE PLEASE: RESEARCH ENDOCRINOLOGIST

Since this effort is underway for some time, yet ideas have been formulated only recently for other directions, I should ask the question: is anyone here opposed to the track I'm on? i.e., B_Jim and I have created a letter to find a research endocrinologist who will go through these 27 pages of posts and make concrete recommendations for low-risk cures to test. We are already in progress with Cambridge University and Oregon Health (OHSU) - per pyropeach, a top-10 rated medical research facility.

Please post your "Yes" (agreed) or "No" (opposed) here by June 8. This will also tell me who is "on board" with this project.

Thank you very much. I look forward to hearing from you.

[demografx]

Anxiety, loss of fluency of speech, confusion, difficulty concentrating, dizziness, etc. 
following orgasm?  From what I've read, that seems to fall under the symptoms that people have described here...

MULTIPLE DAYS of severe physical/psychological/emotional EXHAUSTION following orgasm is the key, most common underlying trait for POIS.

[Counterpoints]

ATTENTION EVERYONE PLEASE: RESEARCH ENDOCRINOLOGIST

Since this effort is underway for some time, yet ideas have been formulated only recently for other directions, I should ask the question: is anyone here opposed to the track I'm on? i.e., B_Jim and I have created a letter to find a research endocrinologist who will go through these 27 pages of posts and make concrete recommendations for low-risk cures to test. We are already in progress with Cambridge University and Oregon Health (OHSU) - per pyropeach, a top-10 rated medical research facility.

Please post your "Yes" (agreed) or "No" (opposed) here by June 8. This will also tell me who is "on board" with this project.

Thank you very much. I look forward to hearing from you.

"Yes".  Though an online data form would serve to organize whatever track you're currently on, not change it entirely.  It could only help.  Why don't you post your letter?

[Counterpoints]

And, by the way, I think it was extremely out of line for someone to say, "Actually if you can identify with this text you are not even close to having POIS", given that the symptoms in the article are ANXIETY, DIFFICULTY CONCENTRATING, EXHAUSTION, etc -- pretty much EXACTLY what people have repeatedly described in this thread.  Not to mention that people in this thread have also said that doctors have suggested dopamine depletion may be the cause of their symptoms. 

I have read the posts here too.  You are no more of an authority on this condition than anyone else who has read the posts and suffered from significant post-orgasmic symptoms for several years.

I would also guess that the intensity and duration of symptoms not only greatly vary from person to person, but from year to year.

[Guthrie]

Demografx--"Yes" to the Research Endocrinologist direction.

Counterpoints--I think you're right that the symptoms in that article are similar to what has been posted by people on this POIS thread.  Imre1--if you had specific reasons for thinking that that article was not similar to POIS, perhaps you can state what you had in mind.  In any case, further open discussion will probably be a more productive and scientific path than will exclusionary or absolute claims. 

[Bizzy]

Demografx--"Yes" to the Research Endocrinologist direction.

I would'nt worry about Imre1 folks. I find that he is a good guy but often confused, probably POIS overdrive and the valium he is taking.

[pyropeach]

ATTENTION EVERYONE PLEASE: RESEARCH ENDOCRINOLOGIST

Since this effort is underway for some time, yet ideas have been formulated only recently for other directions, I should ask the question: is anyone here opposed to the track I'm on? i.e., B_Jim and I have created a letter to find a research endocrinologist who will go through these 27 pages of posts and make concrete recommendations for low-risk cures to test. We are already in progress with Cambridge University and Oregon Health (OHSU) - per pyropeach, a top-10 rated medical research facility.

Please post your "Yes" (agreed) or "No" (opposed) here by June 8. This will also tell me who is "on board" with this project.

Thank you very much. I look forward to hearing from you.

Demografx -- "Hellz yes to the Research Endocrinologist Direction"

Posting that letter would be helpful too because I will soon be putting together a concise description of what we're going through and what we require for someone I know who has connection to OHSU.  Reading your letter would help me do this.  I will try to do this ASAP, its just hard because its dead week for me now and tons of HW and projects + POIS = X_X

[demografx]

LETTER TO ATTRACT A RESEARCH ENDOCRINOLOGIST

The following letter to Chris at TNS (after reading it, he agreed to inquire at Cambridge U.) can be used as a template to send to other contacts. The bold type is B_Jim's addition, which B_Jim created after the letter was sent to Chris.

Everyone: feel free to initiate a contact! But please let me know who/where so we don't duplicate efforts!
-----------------------------------------------------------------
Hi Chris,
 
Many thanks for coming by and telling us about the second life broadcast.
 
I recently became moderator at the POIS Forum, with 200+ postings and a very strong desire to see a cure for everyone of this vicious malady (average 4 days' severe exhaustion, brain fog and other nasty symptoms following orgasm) - It has ruined a chunk of my life, and I daresay most listmembers at TNS/POIS.
 
Chris, with your connections to Cambridge University, would it be at all possible to refer us to a research endocrinologist there? Someone who could go through all the postings and make recommendations leading to  a low-risk cure. I have already cured myself 75% with Levitra, but that is risky for those who don't have ED.

We also have a case of someone who has been totally cured after taking a small dose of DHEA just after ejaculation. That's why some of us think that perhaps the adrenal glands are the main source of the problem. Our adrenals may be "slowest" to restore the normal levels of hormone cycles induced by ejaculation (cholesterol => Pregnenolone => DHEA => testosterone) in the mitochondrial adrenal glands cells. We think stress (cortisol) is probably an increasing factor of the problem.

Maybe in my case, Levitra could have an effect on dopamine and it may have a stimulation effect on the adrenal glands, as a side effect.  

It seems to me that finding a cure through this research would be an incredible medical breakthrough that could be published. There was much fanfare when Dr Marcel Waldinger, a European medical researcher, completed his pioneering study of this ailment some years back, but since then he has not been very responsive to the next step. Dr Waldinger formulated a hypothesis that POIS could be an auto-immune problem. But we don't think it's the only explanation. There are different forms of POIS. The cases described by Dr. Waldinger are extreme (7 days flu-like state)and his experience is with only a very few patients.  

Chris, your help would be greatly appreciated!
 
Thank you very much,
 
Demografx

[demografx]

ATTENTION EVERYONE PLEASE: RESEARCH ENDOCRINOLOGIST

Since this effort is underway for some time, yet ideas have been formulated only recently for other directions, I should ask the question: is anyone here opposed to the track I'm on? i.e., B_Jim and I have created a letter to find a research endocrinologist who will go through these 27 pages of posts and make concrete recommendations for low-risk cures to test. We are already in progress with Cambridge University and Oregon Health (OHSU) - per pyropeach, a top-10 rated medical research facility.

Please post your "Yes" (agreed) or "No" (opposed) here by June 8. This will also tell me who is "on board" with this project.

Thank you very much. I look forward to hearing from you.

"Yes".  Though an online data form would serve to organize whatever track you're currently on, not change it entirely.  It could only help.  Why don't you post your letter?

Have you seen the posted results of the data form B_Jim compiled? Also, I posted the letter. As I mentioned previously, anything that can help would be most welcome!