Author Topic: Free Flow Discussion about POIS  (Read 661126 times)

demografx

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Re: This may seem like a familiar place.
« Reply #2080 on: May 03, 2018, 11:46:16 PM »
The research department I contacted last week on a medicine university told me today, that after analysing the information (RFP). They will not apply because they research for rare diseases related with the mutation of only one gene (monogenetic deseas). According to them these diseases represent the 80% of all rare diseases. And POIS is not due to a gene mutation.

Seems finding a researcher it's not going to be easy...

Thank you, fernab!

You’re right, it’s not easy! I’ve had difficulties for 10 years. That’s why we are asking everyone here to help us...and NORD.


« Last Edit: May 03, 2018, 11:50:51 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

fernab

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Re: This may seem like a familiar place.
« Reply #2081 on: May 04, 2018, 07:42:32 AM »
And POIS is not due to a gene mutation.

We don't even know what POIS is that's the whole point of research LOL! Without doing any research they already seem to know that POIS is not due to a gene mutation  :o

You are right Moun, we still don't know if it is due to a gene mutation. A research should be done first. But they said no. Seems It is only a pretext. This leads me to think if there is another reason behind, for example, It's not politically correct
to say the real thing. I don't know...

Quantum

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Re: This may seem like a familiar place.
« Reply #2082 on: May 04, 2018, 09:57:52 AM »
And POIS is not due to a gene mutation.

We don't even know what POIS is that's the whole point of research LOL! Without doing any research they already seem to know that POIS is not due to a gene mutation  :o

You are right Moun, we still don't know if it is due to a gene mutation. A research should be done first. But they said no. Seems It is only a pretext. This leads me to think if there is another reason behind, for example, It's not politically correct
to say the real thing. I don't know...

Hi fernab, and everyone,

About those reasons that may not be politically correct, here is my understanding of how medical research works. 

I think there are 2 main motivations behind the choice of what a medical research team choose to work on:

1- Money (attracting money from investors, with good perspective on the return on investment), because you need a lot of funding to support research.
2- Scientific recognition through the publication of a breakthrough article

POIS has obviously no chance for the first ( big money), we are too few for being a "good investment", and even if a drug or treatment was found, no chance for it to become a blockbuster and bring billions of dollars in sales per year, like it does if you find a new treatment for diabetes, asthma, hypercholesterolemia, cardio-vascular diseases, or the like.  If you had 500 millions to invest in medical research, hoping to get profits in return, would you invest in diabetes research or in POIS research?   hehehe......

The chances for the second ( scientific recognition following a breakthrough), considering that not much is known yet about POIS, are moderate to low. The researchers have no idea what to do or try first, and the risk of losing time and not making any advance or breakthrough, even on the understanding of POIS, are high.  So, they may prefer a safer bet to invest their time in.  However, what is very good for us is that other sexual health problems have been so much researched that any breakthrough is hard to achieve in those topics, so, some teams that allows a small percentage of their time to some risky research topics will one day or another accept the POIS challenge.  A team will hardly come up with a breakthrough about premature ejaculation, since thousands and thousands of books and articles have been published on it.   You may then look for uncharted territories....et voil , why not POIS !

So, from my point of view, our better chances come from:

1-  A specialized team in men sexual health that has some place in its busy schedule for a more risky venture....maybe by an undergraduate or graduate student looking for an interesting topic that could bring some attention to his work and help launch his career, mentored by researcher that already knows about POIS ( or something along these lines).

2- We can also hope that Dr Waldinger or another researcher that have already published on POIS will come up with a breakthrough article.

3- Another great opportunity would be a clinical researcher who have POIS himself, or have a close relative who is a POIS sufferer, and invest a lot of time in research for this rare syndrome.  What comes to my mind is the example of Dr Jacob O Levitt, who has hypokalemic periodic paralysis, and who made great contributions to the advancement of the treatment of this rare disorder ( see https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-6-18,   and the website of the foundation he has created at https://www.periodicparalysis.org/site/ )

So, we have our chances.  the important thing is not to be too naive, and think that the medical community will rush to help us.   We already know and feel it is not the case...  Having realistic expectations is advisable, as it protect us from becoming too frustrated about how slow the POIS research is going.

Till a major POIS study will be published, we will see POIS reviews articles ( not so risky, just a summary of what have been done so far), and case reports, which are not a breakthrough, and are not so demanding in term of time, and usually present only one case, or a few, and state what have been observed, what have been tried, and the results obtained.  That's positive, but not enough.

I do hope our grant offer will motivate some researcher to invest some time in clarifying what POIS is about.  Once a path finding research is done on POIS, then other teams will be more likely to invest time in POIS, based on what have been found in that previous study.

What I understand from the answer of the team you have contacted, stating that POIS is not caused by a single genetic mutation, is :  " it is much safer for us to work on a disease that has already been proven to be linked to a single genetic mutation, so that we will not lose our (precious) time trying to figure out what causes you rare disorder".  Just my opinion, here, but I do believe it is approximately what happened.  In my contacts with many research teams,  I had once an "accidental" proof that medical research teams, at least the big ones in universities, have a legal/financial team analyzing each project request, and giving advice to the research team about whether or not they should go on with a particular research project.  No doubt, medical research is a very well organized business.
« Last Edit: May 04, 2018, 10:09:42 AM by Quantum »
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fernab

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Re: This may seem like a familiar place.
« Reply #2083 on: May 05, 2018, 02:20:07 AM »
Thank you Quantum, for your good and precise answer.

I agree with you. We also may think that there are still POIS sufferers that they are not aware they are. Just the same it has happend to many of us. After 4 years and a half I recentlly discovered the illness I have is POIS. We all know that almost all doctors don't have any idea about it. And this represents also an added problem to this complex illness. Because maybe we could be a bigger number of people If doctors were able to at least identify more posible POIS sufferers.

Not only to help the number of sufferers becomes bigger. That maybe would revert in more posibilities that it becomes interesting on being researched. But also to contribute in the medical and cientific community to be known.

I think, It is very important for us to spread the word to as many doctors as we can. And people in general. As you said, you never know how close is a researcher to a POIS sufferer.

And also, we maybe could take advantage of the fact that sex sells. It is something interesting to some peolpe when they discover this problem exist. Of course, you have to take care of your privacy. But, this illness is linked directlly to sex.


demografx

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Re: This may seem like a familiar place.
« Reply #2084 on: May 05, 2018, 08:51:28 PM »

I think, It is very important for us to spread the word to as many doctors as we can.


Yes!!


« Last Edit: May 05, 2018, 09:21:06 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

fernab

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Re: This may seem like a familiar place.
« Reply #2085 on: May 24, 2018, 05:55:34 AM »
Hi All,

Continuing with this I recently contacted with a biomedical research laboratory. And sent them the RFP. Initially they showed me to be very interested. We will see with some more time if they really are...

And I also gave it to an endocrine I visited two days ago.

Hoping one day we have a good surprise....

By the way... We are now on May 24. Is the candidacy to sign up still open? No deadline defined??
« Last Edit: May 24, 2018, 12:29:06 PM by fernab »

demografx

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Re: This may seem like a familiar place.
« Reply #2086 on: May 24, 2018, 11:12:40 PM »
Thank you, fernab!

We hope to have information soon as to the search status.
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

fernab

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Re: This may seem like a familiar place.
« Reply #2087 on: May 25, 2018, 05:46:22 AM »
Ok Demo. Thanks. And about the deadline? Any date is defined as deadline? They are asking me on the biomedical research Laboratory...

demografx

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Re: This may seem like a familiar place.
« Reply #2088 on: May 25, 2018, 02:24:37 PM »
June 8. 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

Pbear

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Re: This may seem like a familiar place.
« Reply #2089 on: May 30, 2018, 01:06:10 PM »
I'm a newbie here. You guys do a great job! I didn't know there was a name for what I have experienced for years, and grateful a group like this exists. I'm not really used to this format though, with disparate topics in a variety of folders. I'm wondering if you have more of an interactive chat hiding here somewhere, or if you know of any?

I also have had CFS for over thirty years, and CIRS, and other infections. My experience is that these different manifestations seem to be connected at some root level. I know people with serious mitochondrial disease who experience similar things. I have so many questions and thoughts, but I'm not sure where to share them. I also have some benefit as a lay researcher for years and have taken training with Dr. Ben Lynch and others.

There are no simple answers, but I'm happy to add what I can, of value to the dialogue. Thanks for reading!

Quantum

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Re: This may seem like a familiar place.
« Reply #2090 on: May 30, 2018, 08:28:18 PM »
I'm a newbie here. You guys do a great job! I didn't know there was a name for what I have experienced for years, and grateful a group like this exists. I'm not really used to this format though, with disparate topics in a variety of folders. I'm wondering if you have more of an interactive chat hiding here somewhere, or if you know of any?

I also have had CFS for over thirty years, and CIRS, and other infections. My experience is that these different manifestations seem to be connected at some root level. I know people with serious mitochondrial disease who experience similar things. I have so many questions and thoughts, but I'm not sure where to share them. I also have some benefit as a lay researcher for years and have taken training with Dr. Ben Lynch and others.

There are no simple answers, but I'm happy to add what I can, of value to the dialogue. Thanks for reading!

Hi Pbear,

Thanks for your good words, and welcome to the forum!

There is no chat on the forum, but take the time to explore the different forum boards, and you will find plenty of good information.  On the forum front page, you will find a search box, on top right, so you can search for specific terms on the forum.

You can also use this link to create a RSS feed and track the 25 latest posts:  http://poiscenter.com/forums/index.php?action=.xml;type=rss;limit=25

For your questions and suggestions, I suggest you open your own thread, and ask there your questions, and share what you have found through your personal research ( If you do not know in which board to start it, put it in the alternative Causes and Treatment board, http://poiscenter.com/forums/index.php?board=7.0 )

Take your time and look around, it may take you weeks, if not months, to get familiar with all the information that is available here :)

« Last Edit: May 30, 2018, 08:30:41 PM by Quantum »
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demografx

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Re: This may seem like a familiar place.
« Reply #2091 on: June 04, 2018, 09:52:26 AM »

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

demografx

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Re: This may seem like a familiar place.
« Reply #2092 on: June 14, 2018, 07:03:54 PM »
Ok Demo. Thanks. And about the deadline? Any date is defined as deadline? They are asking me on the biomedical research Laboratory...

I mentioned June 8, but I can ask NORD for an extension if you wish!

Let me know. Post here or PM me.

Regards
Demo


« Last Edit: June 15, 2018, 03:06:42 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

Hopeoneday

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Re: This may seem like a familiar place.
« Reply #2093 on: June 20, 2018, 02:28:25 PM »
This lucky man got pois in 0.33sec video.
https://www.youtube.com/watch?v=NOhyduxTOGo
Dr-pois.

Meshal

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Re: This may seem like a familiar place.
« Reply #2094 on: August 28, 2018, 10:19:14 PM »
for the past 2 days I tried VOLTAREN RETARD 100mg, Just had three O's in a row, had a light fatugie for a couple of minutes and now I'm jumping like a little baby with no symptoms at all, It's been 6 hours since my last O and I haven't slept yet. I have a feeling POIS will strike back after I sleep, but something fishy is happening, POIS always starts minutes after O but this time I don't know what happend. could be a placebo but we'll see in a couple of days

Quantum

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Re: This may seem like a familiar place.
« Reply #2095 on: August 29, 2018, 06:55:37 AM »
for the past 2 days I tried VOLTAREN RETARD 100mg, Just had three O's in a row, had a light fatugie for a couple of minutes and now I'm jumping like a little baby with no symptoms at all, It's been 6 hours since my last O and I haven't slept yet. I have a feeling POIS will strike back after I sleep, but something fishy is happening, POIS always starts minutes after O but this time I don't know what happend. could be a placebo but we'll see in a couple of days


Hi Meshal,

I am glad you have found a way to relief your POIS symptoms. I hope you will make follow-ups about how it goes, not only for this time, but in the coming weeks and month, so we know if this will be for you a stable relief method in the long run.   If not, please give us some feedback anyway, but I wish you it will.  There are other case of members who have relief with anti-inflammatory drugs, and I would be glad to ass you to these in my chart :)
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Vandemolen

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Re: This may seem like a familiar place.
« Reply #2096 on: September 25, 2018, 05:44:08 PM »
The last years I have far less throat and nose problems. 5 years ago my tonsils were removed. That helped me a lot to reduce throat issues after POIS. I think I have less nose problems because the last years I have a policy of being sexual py active only max 1 or 2 times a week. Before when I was sexually excited I couldn’t control myself. So sometimes I had sex/mb 2 days in a row. So if you have a lot of problems with your throat because of POIS it’ best to remove your tonsils. Even when you are older. I was 36 years old when they did the operation.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

demografx

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Re: This may seem like a familiar place.
« Reply #2097 on: October 02, 2018, 01:11:01 PM »
One of the worst POIS episodes *ever* yesterday because I took a hot shower some time after POIS onset! I’ve written here before about it. Maybe now I’ll learn my lesson.

Don’t know why, but......it was pure torture! :(


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

Vandemolen

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Re: This may seem like a familiar place.
« Reply #2098 on: October 02, 2018, 01:39:22 PM »
Hot showers help me a lot. When it’s late and I am finished I used to clean only a bit and go to sleep. I would take the shower the next morning. Since I forced myself to shower directly after sex I have maybe 10% less symptoms.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Vandemolen

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Re: This may seem like a familiar place.
« Reply #2099 on: October 02, 2018, 02:44:47 PM »
The last two years my POIS has changed. I don’t have throat and nose problems anymore. That was my main problem. Now my main problem is UTI/bladder/prostate/urithitis. The only thing that has changed is that my vitamin D level has increased in this period from level 18 to 160.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.