[Vandemolen3]

I know that not every allergy is the same, but it's worth trying. I used to drink probiotics for my intestines. But that didn't help. Now I know that my problem them was UTI and stress.

[Animus]

NORD-POIS International Option


The research fund online donation site can now accept international donations.  NORD received two today (not POIS) -- one from London, the other from Australia.

Go to:  
http://rarediseases.org/about/support/research-donations

Write street address, city, and country in "Address 1"


Click the drop down for State, and the word International comes up -- click that.

The rest is self-explanatory.

THANK YOU, STEFANIE!

demo-
your new avatar...

[lidridop]

This probably seems a little bit too obvious and I'm sure it's been tried by a member at some point. But a good friend of mine takes an ANTIHISTAMINE daily for relief from a whole load of symptoms and allergies including : wheat, dairy, chocolate, yeast, hay-fever etc.

If POIS (arguably) is a reaction to semen, am I naive enough to hope that an antihistamine or something similar will have a positive effect on the level of symptoms felt?   []

[Vandemolen3]

This probably seems a little bit too obvious and I'm sure it's been tried by a member at some point. But a good friend of mine takes an ANTIHISTAMINE daily for relief from a whole load of symptoms and allergies including : wheat, dairy, chocolate, yeast, hay-fever etc.

If POIS (arguably) is a reaction to semen, am I naive enough to hope that an antihistamine or something similar will have a positive effect on the level of symptoms felt?   []

A lot of members tried it, but no result.

[demografx]

POIS is now on Facebook
http://www.facebook.com/pages/Post-Orgasmic-Illness-Syndrome/129914263717751?sk=wiki

[demografx]

demo-
your new avatar...

Thanks, Master Yoda!

"Ben"

[daveman]

This probably seems a little bit too obvious and I'm sure it's been tried by a member at some point. But a good friend of mine takes an ANTIHISTAMINE daily for relief from a whole load of symptoms and allergies including : wheat, dairy, chocolate, yeast, hay-fever etc.

If POIS (arguably) is a reaction to semen, am I naive enough to hope that an antihistamine or something similar will have a positive effect on the level of symptoms felt?   []

A lot of members tried it, but no result.

I wonder if it's not because the antihistamine is more effective for type I allergy. And although it could reduce the type I reactions, it leaves the type IV relatively untouched. So we don't notice a big relief, especially for those who have deeper type IV influence.

[John21 (OP)]

It's great to see everyone contributing what they can to research. Before contributing I would like to know more about where the money goes, and who decides what to do with it. I searched around on the NORD site but I didn't see this information. Could someone like Waldinger have access to it? Is that determined by NORD?

[Counterpoints]

It's great to see everyone contributing what they can to research. Before contributing I would like to know more about where the money goes, and who decides what to do with it. I searched around on the NORD site but I didn't see this information. Could someone like Waldinger have access to it? Is that determined by NORD?

Yes, this is something that occurred to me also.  How much of this money does NORD get?  How do they decide who to give the money to?  Would the money just go to one person (or group), or multiple researchers?  Will they be specific about how they will spend our money?  Can we specify somewhat how we want the money to be spent, or have a 'veto' if we do not like how a group plans to spend our money?  e.g. ideally we would want to spend it on things like diagnostic tests, functional imaging, and so on, and not on 'administrative costs', etc.  We would also want to make sure that some group who was already doing research on this doesn't just grab the money.  We need our money to make a difference.  We would want it to encourage people to do some really world class research on this rare disorder, which wouldn't have been possible, or would have been really unlikely, without our money.

I am sure some (but not all) of the answers are on the NORD website, but it may be useful to have them addressed in the forum somewhere. 

[demografx]

Lots of previous POIS Antihistamine discussion:
http://www.google.com/search?q=antihistamines+POIS+site:http://thenakedscientists.com&ie=UTF-8&oe=UTF-8&hl=en&client=safari

[demografx]

Many of your NORD-POIS questions can be answered here:
http://poiscenter.com/forums/index.php?PHPSESSID=bdb9f2cf9372f713b754b1a70c9e59fb&topic=125.0

Whatever has not been already answered, I'm sure Stefanie will address here.

You can also write to her at:
rn@rarediseases.org

[demografx]

As an added note, you are obviously free to choose another funding venue. Many of us feel very strongly about NORD and their incredible dedication to us specifically at the POIS forums. But if you disagree, then by all means don't contribute.

[Counterpoints]

Many of your NORD-POIS questions can be answered here:
http://poiscenter.com/forums/index.php?PHPSESSID=bdb9f2cf9372f713b754b1a70c9e59fb&topic=125.0

Whatever has not been already answered, I'm sure Stefanie will address here.

You can also write to her at:
rn@rarediseases.org

Thanks for the link.  This answers most of the questions.

[Counterpoints]

A response to something she wrote in that post:

it's unclear whether "post-orgasmic illness syndrome" is the best name for this syndrome, since apparently an ejaculation is not always necessary to go under the spell of POIS. "autologous semen illness," or "autoimmune seminal fluid syndrome," may be a more succint term. Just a thought that I wanted to share.

We have discussed this here at some length.  I think post-orgasmic illness syndrome is a good name, precisely because, as you say, ejaculation is not necessary.  Orgasm does not imply ejaculation.  The Semen illness and autoimmune X would be much worse than POIS, because we don't whether this has anything to do with semen, and we don't know whether it's autoimmune.  The name POIS says broadly what this problem is without making incorrect assumptions.  (Yes, it may not include absolutely everything described here, but it is true that everyone here does suffer from symptoms following orgasm -- they do have some sort of post orgasmic illness -- and often it is exclusively after orgasm).

I am skeptical of the autoimmune hypothesis.  I think it is possible, and even somewhat likely, but no more than 50% likely to be true.  There are other major contenders.  I think it's absolutely critical that hormonal and neurological possibilities are also looked into.

[demografx]

I am skeptical, too re autoimmune as the one-and-only. Hormonal, neurological, and WHATEVER-is-a-reasonable-hypothesis must all be taken into account.

[demografx]

CP, I argued the same point about the  POIS name privately with Stefanie. NORD is ok with POIS  now.

The main consideration in the future: what is the BEST name to attract maximum $$$$ for researching our condition?

[Counterpoints]

The main consideration in the future: what is the BEST name to attract maximum $$$$ for researching our condition?

It's a good question.  I think POIS is a reasonably good name.  No false assumptions, easy to understand, and relevant papers have already been written using this name.  I can see some people thinking it does not sound technical or specific enough.  But I do not think, at this stage, we have a good enough understanding to be more precise. 

I agree with what Stefanie said about how funding will get progressively easier the more credible research is done.  And it was nice to see an emphasis on scientific rigour in her post.

[demografx]

Thanks for that, CP. I am, however, concerned about the lack of control subjects in previous research and how that may possibly affect our credibility. But...it could be argued that it's better than nothing.

[lauracostis]

I created a topic called "Blood tests results" on the new forum = General Alternatives Causes and Treatment.
I suggest this part to be the one where we can post all our blood tests results since we have POIS.
We could check the fail common standards, compare and investigate more clearly.
As it is expensive, we can see which standards are the most important.

Thank you! []


Mod Edit: Edited in the URL

good job, we cant figure this thing out if we cant look at all the data as a whole.

[John21 (OP)]

Many of your NORD-POIS questions can be answered here:
http://poiscenter.com/forums/index.php?PHPSESSID=bdb9f2cf9372f713b754b1a70c9e59fb&topic=125.0

Whatever has not been already answered, I'm sure Stefanie will address here.

You can also write to her at:
rn@rarediseases.org

That is what I was looking for, thanks. I agree, NORD sounds like a great place to get more research rolling.