Upcoming French article on 3 POIS cases and possible follow up study !!!

[Quantum]

Hi everyone,

Great news! A few days ago, I have been told by POISse, that he had discovered that a new article by a French Research team from La Sorbonne University in Paris is available, as corrected test paper - the final publication is expected to be in around 6 months.  Here are the links I have received from POISse:

Bonjour ? tous,

Je suis tomb? sur une ?tude r?alis?e par des chercheurs fran?ais et qui date du mois d'avril 2017:

http://www.em-consulte.com/article/1119147/resume/syndrome-de-la-maladie-post-orgasmique

http://www.sciencedirect.com/science/article/pii/S1166708717300696

https://www.clinicalkey.fr/#!/content/playContent/1-s2.0-S1166708717300696?returnurl=http:%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1166708717300696%3Fshowall%3Dtrue&referrer=http:%2F%2Fwww.sciencedirect.com%2Fscience%2Farticle%2Fpii%2FS1166708717300696

L'?tude est payante mais je pense l'acheter pour voir ce qu'elle contient. L'?quipe de chercheur est relativement renomm?e et on peut donc s'attendre ? quelque chose de consistant m?me s'il faut ?tre prudent.

Le GREEN est un groupe de recherche clinique en neuro-urologie:
https://grc01-green.jimdo.com/

Bonne soir?e,

POISse

In the last few days, I have exchanged a few e-mails with Professor Gerard Amarenco,  MD, from the GREEN ( Group of Clinical Research in Neuro-Urology ), who is a renowned neurologist.  First, I have sent him the link for our grant with NORD, and he seemed interested to make a proposal.

He also gave me a preliminar pubmed link, already defined for the upcoming publication of their case study article :  https://www.ncbi.nlm.nih.gov/pubmed/28431830 .  He added that when it will be published, in the medical journal "Progès en Urologie", in about 6 months, it will be freely accessible to everybody.

Even before knowing about the NORD grant, his research group had plans for a study on how the Autonomous Nervous System behaves in POIS, compared to a reference group ( he mentioned it would be half a day of non-invasive tests , and then, from the data obtained, try to figure out possible therapeutic approaches ) .  I had already told him that our members would be glad to participate in any project they would have on POIS.  So, he told me that they would surely need our group to find enough subjects for their study, considering that our syndrome is rare.   

So, it seems to me that, even if the GREEN / GRC-01 research team is not selected for the NORD grant, they intend to do a study on POIS. 


That is great news !!!   First, that a new POIS article will be out soon, and, also, that an internationally known neurologist and his specialized neuro-urology research team is interested in POIS research !

[Quantum]

Take note that this upcoming article is a brief description of 3 POIS cases, there is nothing in there about treatment, so do not raise expectations about any comment in this paper about a treatment option, there will be none.

However, this article is good news, because it will make many physicians aware of the existence of our rare syndrome, give them a basic description of POIS, and, above all, it also means that a major clinical research team has now interest in POIS and intend to invest further time in this research topic.

I think this is a new landmark:   more than one research team is working on POIS.  This means that POIS as a medical research subject is coming out of the age of ignorance and darkness.   Now that premature ejaculation and erectile dysfunction had millions of study done and that those issues have been extensively covered, research teams in the urologic/sexual/neurological field seems to open to new challenges like rare disorders such as POIS

[demografx]

Indeed, great news, Quantum! Many thanks for posting this.

[Habibou]

Since I am French, I read this article today and it is interesting they investigate about it.
I live in London now but can be a patient if needed in Paris since I still go there sometimes!

[Quantum]

Yes, it is great that a well-known research lab is investigating about POIS

Merci, Habibou, pour ta candidature     I have told Dr Amarenco that we have members in Europe, and that I was sure that many would be interested in participating.   He replied " Bien noté", "Duly noted",   to my e-mail about the NORD grant being open to European researchers, and about the availability of our members for any project of his team about POIS.

I am sure he will come back at us in the coming year about this, even if his team is not selected for the NORD grant.

[Quantum]

The case study article of Pr Amarenco's team has lead to a very good article in "Le Monde", a French newspaper:

http://realitesbiomedicales.blog.lemonde.fr/2017/05/22/quand-lorgasme-rend-malade/

the journalist has taken the time to make a very good research.   Almost all the information of the upcoming paper about the 3 studied case by Dr Amarenco is released in this article of "Le Monde".  There is even some new info that is not in the upcoming paper, like, that they have found, since April, a 4th case of POIS.

This blog article talks about Waldinger, , too, ant the Chinese study as well, and discuss the various hypothesis about POIS ( immunologic, neurologic, hormonal, etc...).

the article is referenced, and there is even a link to poiscenter at the end


I think that using a web page translator, you will get a good understanding of what is said in this article by "Le Monde" journalist Marc Gozlan.

[certainlypois2]

    I have the urinary problem the youngest person in the article has but mine becomes a problem at night when i go to sleep. I didn't connect it to pois because it was not part of my original symptoms. I started having symptoms about 4 years ago and it has progressively gotten worse. It went from about getting up four times a night to almost 8 times to pee.  I didn't originally have the problem where immediately(seconds) after peeing i have go back to pee because i feel like there is still a very small amount that needs to come out.  It has gotten so bad i am no more pushing back making an appointment with a urologist because of cost.

https://www.epainassist.com/pelvic-pain/urinary-bladder/bladder-sphincter-dyssynergia-or-neurogenic-detrusor-overactivity
According to this websites  this problem is found along with some heavy diseases like parkinsons and multiple sclerosis and also it can be evidence of the begining of a neurologic condition.

[superfrancais]

This French study and this article are great news.

I am French and live near Lyon. I am available if the research team needs an additional sufferer and wants to contact me.

Maybe we could build a list of people living in France or around.


 

[Daveman]

WOW, wonderful. It's amazing how such possibilities just open up out of open space!

[demografx]

Out of the blue! We're lucky!

[FloppyBanana]

The case study article of Pr Amarenco's team has lead to a very good article in "Le Monde", a French newspaper:

http://realitesbiomedicales.blog.lemonde.fr/2017/05/22/quand-lorgasme-rend-malade/

the journalist has taken the time to make a very good research.   Almost all the information of the upcoming paper about the 3 studied case by Dr Amarenco is released in this article of "Le Monde".  There is even some new info that is not in the upcoming paper, like, that they have found, since April, a 4th case of POIS.

This blog article talks about Waldinger, , too, ant the Chinese study as well, and discuss the various hypothesis about POIS ( immunologic, neurologic, hormonal, etc...).

the article is referenced, and there is even a link to poiscenter at the end


I think that using a web page translator, you will get a good understanding of what is said in this article by "Le Monde" journalist Marc Gozlan.

It might be worth baring in mind that Waldinger told me he expected his study to be completed Dec 2017.
FB

[Habibou]

Do we have any news regarding the study carried out in Paris?

[Quantum]

I have recently send an E-mail to Prof Amarenco, of the French team, hoping that they will apply for our RFP.

I will let you all no when he will have send me an answer.

[demografx]

Wonderful, Quantum!

[Habibou]

Hi everyone,

I have contacted Pr Amarenco that I actually met in 2010 when I had no idea I had POIS...

He wants to see me in Paris to do the same tests as in the studies the team made in 2017.

I will update you regarding the outcome as soon as I have some answers

[demografx]

Hi everyone,

I have contacted Pr Amarenco that I actually met in 2010 when I had no idea I had POIS...

He wants to see me in Paris to do the same tests as in the studies the team made in 2017.

I will update you regarding the outcome as soon as I have some answers

Thank you very much for all your efforts, Habibou!

[Quantum]

Hi everyone,

I have contacted Pr Amarenco that I actually met in 2010 when I had no idea I had POIS...

He wants to see me in Paris to do the same tests as in the studies the team made in 2017.

I will update you regarding the outcome as soon as I have some answers

Thanks Habibou, looking forward for your feedback!

I have added Pr Amarenco to my  "List of Doctors Who Knows about POIS and are seeing POIS patients" - see http://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 .  This list now contains 3 doctors.

[Vandemolen]

Hi everyone,

I have contacted Pr Amarenco that I actually met in 2010 when I had no idea I had POIS...

He wants to see me in Paris to do the same tests as in the studies the team made in 2017.

I will update you regarding the outcome as soon as I have some answers

Any news about this French research?