Author Topic: Potential opportunity to launch a scientific POIS study  (Read 11055 times)

mellivora

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Potential opportunity to launch a scientific POIS study
« on: October 18, 2011, 02:06:56 PM »
I had a discussion with a colleague of Dr Goldmeier's in London today. As I have mentioned before, they are willing to do some tests with proper controls into aspects of POIS such as immune response to semen etc. However they need a minimum of around 30 POIS sufferers to do this. So far in the UK (plus one person in France!), they have seen around half this number of people. Hopefully all of them would be willing to participate in a study but even if so, its not enough people to get statistically rigorous results.

Today, I raised the subject of doing a collaborative study whereby they might use people in other countries working in conjunction with a doctor or doctors local to those sufferers, all using identical methods to pool results. Dr Goldmeier's colleague thought this could work. She also said that such a study could be relatively cheap to do initially. So I left believing this is a real possibility. I shall email Dr Goldmeier himself with the idea to get his reaction and to learn what we would need to do and where funds might come from. (don't stop giving to the NORD fund!!)

I suspect this might work best if there were several POIS sufferers overseas who were close to one medical centre where they could all go to make up the numbers, thus making the logistics easier (in a similar way that 15 people have already journeyed to London to see Dr Goldmeier).  Of course, I don't want to exclude anyone who wants to get involved wherever they live but I am trying to think in practical terms. For starters, we have a map of POIS sufferers somewhere don't we? I don't know whether pooling results with Dr Waldinger would work. I suspect this would be better as an independent study to replicate, or not,  his findings amongst other things. That is just my opinion.

For starters, does anyone know if there is a group of sufferers outside the UK that could potentially get to the same place for testing? I'm guessing we'll need at least a couple of other centres overseas to make up the numbers. Also, if there is anyone out there in the UK who hasn't yet been to see Dr Goldmeier, I would encourage you to do so if you can - for yourself and everyone here. Send me a message if you want details on how to arrange this.

Please post here if:
(i) you would like to be involved in a study such as the one I've outlined loosely above.
(ii) if you know of anyone in your area that might be able to work with Dr Goldmeier's team in a collaborative study
(iii) if you live in an area in which you know there are other POIS sufferers near enough that you could all travel to one place if a study were to be done in your area.

I hope that makes sense. Remember, I have only raised this possibility with Dr Goldmeier's colleague so far. If we can approach him and his team with the details of enough POIS sufferers willing to take part with an idea of where they are based and perhaps even suggest people he could collaborate with then we might get somewhere. Its up to us to start shaping this into something that could work. The easier we can make it for the research team, the more likely it is we can get a study off the ground. I think we can make it happen.

Please reply to this asap to voice your thoughts and your willingness to participate

Nightingale

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Re: Potential opportunity to launch a scientific POIS study
« Reply #1 on: October 18, 2011, 07:01:15 PM »
I am not aware of other POIS sufferers in my area, but I am posting here to show I am willing to travel for help.  I live in Virginia (U.S.), and the closest metropolitan area would be Washington D.C.

A major research institution close by would be the University of Virginia.  I have some contacts at their Immunology research center.
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

demografx

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Re: Potential opportunity to launch a scientific POIS study
« Reply #2 on: October 18, 2011, 10:50:13 PM »



Mellivora, thank you!!


10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

B_Daniel

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Re: Potential opportunity to launch a scientific POIS study
« Reply #3 on: October 18, 2011, 11:10:53 PM »
For this study, do we need to just make one visit, or multiple visits?  If it's just one visit, I'm much more flexible on how far I can travel for this project.

I live in San Fran.

I'd also be happy to ask my doctor.  I think he would just need to know what all it entails.

mellivora

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Re: Potential opportunity to launch a scientific POIS study
« Reply #4 on: October 19, 2011, 02:57:29 AM »

I am not aware of other POIS sufferers in my area, but I am posting here to show I am willing to travel for help.  I live in Virginia (U.S.), and the closest metropolitan area would be Washington D.C.

A major research institution close by would be the University of Virginia.  I have some contacts at their Immunology research center.

Great, thanks Nightingale.

For this study, do we need to just make one visit, or multiple visits?  If it's just one visit, I'm much more flexible on how far I can travel for this project.

I live in San Fran.

I'd also be happy to ask my doctor.  I think he would just need to know what all it entails.
Thanks B_Daniel. I don't know how many visits this would require. If an initial study is just determining semen allergy via say skinprick testing, and maybe doing certain bloodtests, I imagine one visit may be enough. But those are just my thoughts. I need to hear back from Dr Goldmeier to answer your question. Also I emphasise that at this stage I have only talked to a colleague of his. I am hoping to hear from him soon as to what he himself thinks about a collaborative study and what aspect of POIS he thinks should be studied first and what it would entail.



Habibou

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Re: Potential opportunity to launch a scientific POIS study
« Reply #5 on: October 19, 2011, 03:47:13 AM »
I am the French person mentionned in the text  ;D Yes, very good idea !Because with technics now, it takes so looong time...
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Daveman

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Re: Potential opportunity to launch a scientific POIS study
« Reply #6 on: October 19, 2011, 09:35:03 AM »
Thank you very much Mellivora for your great sleuthing!!

As far as statistics we could manage those from here.

This could be a great opportunity to get our local doctors involved. Dr. Goldmeier, as "Master Doctor" could order specific tests, most likely tests that are realizable in most central cities. Local doctors or facilities would be much more available to respond to a central researcher. And we would just have to assure that any testing facilities are duly acredited, which should not be a problem.

A local doctor could assure that other aspects of the "controls" are being followed and do the final validation of any tests before sending them to Dr. Goldmeier. We could keep stats and numbers in a local database as well. So, in this "modern world" it shouldn't be a problem that the patient base is spread out.

We could organize a small team above and beyond the individuals being tested and maybe even open a thread dedicted to maintaining order.

« Last Edit: October 19, 2011, 04:37:06 PM by Daveman »
WITHOUT RESEARCH THERE WILL BE NO CURE!
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mellivora

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Re: Potential opportunity to launch a scientific POIS study
« Reply #7 on: October 19, 2011, 10:48:57 AM »
I am the French person mentionned in the text  ;D
I thought so Habibou! But I thought I would leave it up to you to reveal yourself!

Vincent M

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Re: Potential opportunity to launch a scientific POIS study
« Reply #8 on: October 19, 2011, 10:23:01 PM »
I live in upstate New York.
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

demografx

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Re: Potential opportunity to launch a scientific POIS study
« Reply #9 on: October 20, 2011, 02:09:25 AM »


Southern California.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

EDS

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Re: Potential opportunity to launch a scientific POIS study
« Reply #10 on: October 20, 2011, 07:43:52 AM »

I am located on the coast of Alabama (US) and willing to participate in a collaborative effort, but let's not forget NORD.

Can we get the world map of POIS sufferers that was developed on the other web site placed on this site?

mellivora

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Re: Potential opportunity to launch a scientific POIS study
« Reply #11 on: October 24, 2011, 06:33:34 AM »

but let's not forget NORD.
Can we get the world mahttp://poiscenter.com/forums/index.php?action=post;topic=233.0;num_replies=10#topp of POIS sufferers that was developed on the other web site placed on this site?

Absolutely EDS. I'm still 100% behind the NORD fund.

In fact this effort to organise ourselves could be just as vital to research funded by NORD or anyone else. Getting together enough people to get good data is always going to be a potential difficulty for studies of rare disorders I think. The easier we can make things for researchers the more likely it is that future studies on POIS can succeed. If we start trying to figure this out now, we'll be ready when we an opportunity comes.

I hope you agree and will continue this effort,
Thanks to those who have already come forward,

demografx

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Re: Potential opportunity to launch a scientific POIS study
« Reply #12 on: December 12, 2012, 09:18:26 PM »
Most may remember "Squiqqy" in Laverne and Shirley's TV sitcom... he has gone much of his life with a
complex disorder that makes living a pain! It's not POIS, but if you watch this video you'll see
that we have a lot in common.

http://www.youtube.com/watch?v=ubgURSn45jE&sns=em

He knows about us and offers us all of his wishes, that we push hard, as he has done in his life, to beat
this thing. Our solution and the solution for all the POIS sufferes of the world... even those who haven't
heard about our forum, is through RESEARCH

We are ALMOST THERE!!!

ONLY $9,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!

Please give generously. To yourself! NOW!

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« Last Edit: December 12, 2012, 10:33:21 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business