Author Topic: POIS 2021-2022 NORD RESEARCH STUDY  (Read 67404 times)

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #460 on: April 03, 2022, 03:12:49 PM »
IronFeather, I greatly appreciate everything you said, including the criticism. As you know, I have corrected some of what you suggested in the past - - and will continue to do so.

Many Thanks again,
Demo

post-edit - I just made a significant change to my post regarding your concern about  “public shaming”.

ps - there are extremely valid concerns regarding confidentiality. I will private-message you about that when the timing is appropriate.

pps - I disagree with some of your comments, but I’ll let you have the floor for now :) :)

Bottom line: I appreciate your forum involvement.
« Last Edit: April 03, 2022, 04:09:57 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

Quantum

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #461 on: April 03, 2022, 07:45:41 PM »
I think Muon is not the only person here who has expressed mistrust in the way the research process is being conducted and in the possibility of obtaining any positive result from this study. And I'm glad to see the numbers are growing. It wasn't enough to let the money go to a study conducted by a psychologist, now the process has to be obscure and confidential too. As far as I know, the funders are the people here, not only the moderators, so, actually, the funders have very little information as to how the process is going and what exactly they are waiting for. All we get is flashy posts about NORD news and podcasts.

But of course, the answer to the very legitimate demand for transparency is to try and publicly shame a forum member. How nice and democratic.

I'm glad I wasn't here when the funding was happening, as I would have donated and would now be deeply regretting having contributed to this particular study. Let's hope we can at least express our opinions here without being censored, right? Since forum members who are literally calling us neurotic and anxious and saying that all we need to do is visit a psychiatrist and read poetry are perfectly allowed to express their wonderful opinions of all of us.

Personally, I can't be more disappointed in this forum, it isn't physically possible. And yes, great things have been done, I'm very grateful to many people here for their ideas and support, I think and it's wonderful that this place exists. But that's not what I'm talking about. Just wanted to state it.

I think many members seem to have forgotten that it is NORD , the National Organization for Rare Disorders, that is responsible for the legal and scientific supervision of this study.

Many years ago, it had been chosen that poiscenter would go for a credible organization, in order to end up with a credible scientific study, not a low-level quality study that no researchers and no MD will read.  There are many parameters to be considered for real, professional supervision of all the steps in the study:  submitting the study projects, choosing the best project, then accepting the study design, revising the ethical aspects of the study, the financial aspect, and so on. You need a fine Board of Supervisors for this, and NORD has it.

When you say that "I think Muon is not the only person here who has expressed mistrust in the way the research process is being conducted and in the possibility of obtaining any positive result from this study", you are clearly expressing that you do not think NORD is a trustworthy organization, and that they cannot supervise correctly a scientific study, and that they may not have chosen a competent research team, and they may not be doing a vigilant follow-up on the study. 

Now, I would like to remind everyone that, the way it works, NORD is responsible for what happens with the funds and the study, and the only information the funders will receive are, first, what research team will be awarded the grant, a brief description of the study, and then, the Interim Reports that we receive after some milestones have been attained in the study, once it is started. I think we will receive the article and complete results when they will be published.  Apart from this, NORD is not accountable to us, but, however, they do all they can to keep us informed, even if they have much on their plate (helping over 300 rare disorders associations like ours). This supposed right for the "funders" you are referring to, to receive more explanations from NORD, simply does not exist.  However,  Demo , for years, has done everything in his power and used all of his (excellent) PR abilities to extract information from NORD, and every little bit he gets, he shares it on the forum. 

So, this discourse about expressing "mistrust in the way the research process is being conducted" and lack of transparency does not make sense at all, from my point of view.  NORD's Medical Advisory Committee is made up of experts who work voluntarily! ( https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/research-grant-program/ ), and NORD has limited staff and still helps over 300 groups like ours..  We should thank them for their generosity, not complaining about not being updated as often as we would like to.  Asking for more from NORD staff is just not appropriate, let us just be grateful for all the help we get from them.

Also, still in line with your disappointment about NORD, could you explain, please, what you would suggest as an alternative for a professional and recognized organization to supervise a POIS study that you would organize along with all those who are disappointed with what is going on with the study on poiscenter?  You could organize a few Zoom think-tanks with all those who are dissatisfied with NORD tenure and poiscenter.  You say they are growing in number and that you are happy with it, so you will get all the help you need for this rather demanding task.  For my part, I will be happy to read your detailed strategy and your project plans. Don't forget to take into consideration that you need to have the money to pay the supervising organization in order to do a professional job and lead to a valid research publication.  This cannot be done by a group of laypeople, but need highly qualified persons. Of course, It will be quite hard to beat NORD's price, since their Medical Advisory Committee is made of volunteers experts...

I would also like to remind everybody that POIS research is in an embryonic state, at this point in history.  For now, just to have a research team being interested in going ahead with a real POIS study is to be valued in itself.  We have to start somewhere, and not all researchers are willing to take the risk of finding absolutely nothing!  Researchers all think about their career plan and their professional evolution, you know - they do not want to be associated with a project that goes nowhere and have no clue, they want a breakthrough and hope for recognition.  So, for now, we should be grateful to have a team willing to really help us and make things move ahead.  The other teams wait and see, they want to have some solid evidence, some gained knowledge, before diving in the pool.
And, please, to everyone, I would like you to realize that a first study will not be enough to heal everyone's POIS, be realistic.  We may get very good leads about the main types of POIS and what causes them, and possible investigational treatments. Maybe this will be enough for certain members to find major relief for their symptoms.  But please, don't set your expectations too high, for a first real POIS study.

I would also like to refer all those who are deeply disappointed to read my account of what has been done so far by poiscenter.com about research:  https://poiscenter.com/forums/index.php?topic=3781.msg40119#msg40119 . This will give you a better perspective and how it really works.

Personally, I cannot recall how many emails I have written, in the last 8 years, to so many research teams and doctors who have written scientific papers about POIS, in order to build connexion and foster new POIS projects.  It has sometimes produced interesting results, like the 2019 POIS survey, and in 2021, Dr. Nathan's experiment, and some interactions with a new POIS Panel made of many specialists and doctors. 

We all were very disappointed that a troubled subject ( who we don't know the identity) made us lose 3 years because of an undue complaint that ended up in a lengthy investigation, and finally, the cancellation of the Rutgers study.  And again, we are all very upset and downhearted by this new delay created by the COVID pandemic, that made us lose another year. at the least.   We have to be resilient and have to be patient.  And the meantime, try to find at least some personal method to lower your symptoms and mitigate the negative effects of POIS in your life.  In other words, brace yourself and be ready for a rather long wait before modern medical science brings you a solution.
« Last Edit: April 04, 2022, 10:00:01 AM by Quantum »
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

demografx

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #462 on: April 03, 2022, 08:12:25 PM »
Quantum, I can’t thank you enough for clearing up the myriad misconceptions about NORD and ALL medical research.
« Last Edit: April 03, 2022, 08:28:50 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

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #463 on: April 03, 2022, 09:26:22 PM »
Re. 2022 POIS Research Study.
More information about NORD for everyone to please consider:


1. NORD has over 300 associations to help, and a limited number of office employees, so communication is kept for the essentials: official documents, RFPs, Interim Reports, etc...

2. $31,000 was the *minimum* amount for a NORD grant ( now $35,000), and this does not entitle us at all to have a "VIP" attitude. 

Each of the 300 Rare Disease associations they help are equally important.

3. To better understand NORD’s Grant policies, Please visit

https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/research-grant-program/

and

https://rarediseases.org/wp-content/uploads/2019/05/NORD_Rare_Disease_Research_Grant_Policy.pdf

and

https://rarediseases.org/about/leadership/medical-advisory-committee/

4. Importantly, you should know that NORD's Medical Advisory Committee (MAC)  is composed of experts who work voluntarily!  From the first link above: 

"NORD grants are competitive and international. NORD’s Medical Advisory Committee is composed of rare disease medical experts who generously donate their time to help NORD provide this program on behalf of its members and the rare disease patient community."

Yes, NORD'S MAC is composed of volunteers ... Members of the forum should know about this.



« Last Edit: April 03, 2022, 09:51:07 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

berlin1984

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #464 on: April 04, 2022, 02:11:27 AM »
We have to be resilient and have to be patient.  And the meantime, try to find at least some personal method to lower your symptoms and mitigate the negative effects of POIS in your life.  In other words, brace yourself and be ready for a rather long wait before modern medical science brings you a solution.

This.
Huge improvement is possible, there is a lot of examples in the forum.


demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #465 on: April 04, 2022, 02:50:36 PM »
We have to be resilient and have to be patient.  In the meantime, try to find at least some personal method to lower your symptoms and mitigate the negative effects of POIS in your life.  In other words, brace yourself and be ready for a rather long wait before modern medical science brings you a solution.

This.
Huge improvement is possible, there is a lot of examples in the forum.

Berlin,
I agree.

The last 15 years here have not been wasted. I’m sure that POIS is doing far better overall
than…most rare disorders!
« Last Edit: April 05, 2022, 08:55:21 AM 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

IronFeather

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #466 on: April 05, 2022, 07:14:05 AM »
Thanks, Demo and Quantum, for the detailed replies!

As far as the research itself goes, I understand the time and effort it takes to complete all the process and bureaucracy that makes a scientific study possible, especially one in the field of medicine, where everything is so controlled and exaggeratedly regulated. Since I didn't donate for this, because I wasn't here back then anyway, it's not like I have any say in the matter (and it seems that none of the funders do), but I just wanted to make clear that it's not the delay that I'm complaining about. Plus, I also think it's nice that the study progressed towards a coordination between NORD and UCLA, as I agree that it gives more visibility to this project and to POIS in general.

There is, however, one thing that does irk me about the way Dr. Prause replied in Twitter. She said something to the extent of "we are in constant contact with the funders regarding progress", and it doesn't seem like that is exactly the case. If there are confidentiality issues and the researchers don't want to (or can't) give us information regarding what stage of the process they're exactly in, I don't find her reply reasonable or truthful. If, on the other hand, the mods here have more information than we do, I suppose there are reasons for this. Anyway, I don't really care much about this study as I don't believe it will solve anything apart from helping us have more visibility in the medical community (sorry, I hope I'm wrong but I'm just not optimistic at all in this regard).

But my real concern is, will this increased visibility be good or bad for us? With a disease like POIS, that is constantly belittled as a psychological or psychiatric problem by doctors and patients alike, what will happen if nothing at all is found in a study like this? Have you thought of the implications of this for the future of POIS research? If a psychologist and a neuroscientist (because that's exactly what our researchers are, and yes, I very much doubt the work of NORD in choosing them for a study on POIS) find nothing physically wrong in patients with POIS, not for the lack of a physical issue but for a lack of funding to perform a broad enough investigation, we're done for. Doctors are dismissive enough of us already without researchers with authority telling them we're people with a psychosomatic illness.

Again, I hope this won't be the case, and I will be immensely happy, same as probably everybody else here, if some clue is found. But I personally wanted to share my opinion that the outcome might be worse than most people are realizing. Do you want to know what happened to me a week ago?

I visited a doctor for the first time in years and talked to him about POIS. He doubted that it was a disease that existed and told me I was making things up until I showed him about the NORD and the study that is currently underway. As soon as he looked up the researchers, he smiled and told me that there must be a reason why a prestigious organization like NORD, that clearly knew what is was doing, had chosen a psychologist for our study. He wrote me a referral for a psychiatrist and that was it. Laughing in my face, basically.

Do I think that these doctors are not capable of conducting the study? No, it's not that. They might as well greatly help us by making huge progress, we never know, and I hope that is the case; I don't doubt their capabilities, I do wonder why they were chosen. But this is the reality of what is happening, and what will happen if, for example, they conclude that nothing is wrong with us and the NORD decides to remove POIS from the list of rare diseases, thinking it's psychological, psychosomatic, or psychiatric, because professionals with authority in those fields said so?

I'm very, very worried about the future if this study goes wrong. That's all I'm saying, and I think it's a valid concern and that the situation is very delicate. But I also understand that nothing can be done now, and that all we can do is wait. Thanks for listening anyway.
« Last Edit: April 05, 2022, 07:18:15 AM by IronFeather »
26-year-old Spanish woman with POIS symptoms for the last 13 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #467 on: April 05, 2022, 10:54:36 PM »

I M P O R T A N T

From the NORD 2022
POIS Research Study Team
Dr. Tierney K. Lorenz
Dr. Nicole Prause



We appreciate the concerns and frustrations with the pace of the research project. We are similarly frustrated by the roadblocks that we’ve encountered, from the pandemic and from administrative/bureaucratic issues. As you all may know by now, Dr. Prause is now with UCLA, which means that we need to make arrangements across UNL[University of Nebraska - Lincoln] and UCLA, with coordination from NORD (i.e., the foundation administering the grant). Throughout the pandemic-related research shutdown and subsequent re-starting of the project, we have been in contact with the grant administrators, foundation, and with the forum (via Demo) to try to communicate the situation as it changes. This all has taken much, much longer than we had hoped, but we are moving forward as best we can. We appreciate the community’s continued support and patience as we work through these details.

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

Iwillbeatthis

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #468 on: April 07, 2022, 06:16:11 AM »
Yeah don't really know what people are expecting to come out of this study, best case scenario they may be able to prescribe a drug that alleviates some symptoms. POIS is a very abnormal condition so getting conventional doctors to research it isn't a great idea. Not being negative just being realistic.

Just look at ME/CFS (similar to POIS) which has had lots of research and they still don't really know much about it or have any effective treatments for it.

Other chronic conditions like MS, ALS, Parkinsons, Crohns, the treatment for it sucks, no cures, mainly just drugs that reduce symptoms and probably cause further problems in the long run.

Thanks, Demo and Quantum, for the detailed replies!

As far as the research itself goes, I understand the time and effort it takes to complete all the process and bureaucracy that makes a scientific study possible, especially one in the field of medicine, where everything is so controlled and exaggeratedly regulated. Since I didn't donate for this, because I wasn't here back then anyway, it's not like I have any say in the matter (and it seems that none of the funders do), but I just wanted to make clear that it's not the delay that I'm complaining about. Plus, I also think it's nice that the study progressed towards a coordination between NORD and UCLA, as I agree that it gives more visibility to this project and to POIS in general.

There is, however, one thing that does irk me about the way Dr. Prause replied in Twitter. She said something to the extent of "we are in constant contact with the funders regarding progress", and it doesn't seem like that is exactly the case. If there are confidentiality issues and the researchers don't want to (or can't) give us information regarding what stage of the process they're exactly in, I don't find her reply reasonable or truthful. If, on the other hand, the mods here have more information than we do, I suppose there are reasons for this. Anyway, I don't really care much about this study as I don't believe it will solve anything apart from helping us have more visibility in the medical community (sorry, I hope I'm wrong but I'm just not optimistic at all in this regard).

But my real concern is, will this increased visibility be good or bad for us? With a disease like POIS, that is constantly belittled as a psychological or psychiatric problem by doctors and patients alike, what will happen if nothing at all is found in a study like this? Have you thought of the implications of this for the future of POIS research? If a psychologist and a neuroscientist (because that's exactly what our researchers are, and yes, I very much doubt the work of NORD in choosing them for a study on POIS) find nothing physically wrong in patients with POIS, not for the lack of a physical issue but for a lack of funding to perform a broad enough investigation, we're done for. Doctors are dismissive enough of us already without researchers with authority telling them we're people with a psychosomatic illness.

Again, I hope this won't be the case, and I will be immensely happy, same as probably everybody else here, if some clue is found. But I personally wanted to share my opinion that the outcome might be worse than most people are realizing. Do you want to know what happened to me a week ago?

I visited a doctor for the first time in years and talked to him about POIS. He doubted that it was a disease that existed and told me I was making things up until I showed him about the NORD and the study that is currently underway. As soon as he looked up the researchers, he smiled and told me that there must be a reason why a prestigious organization like NORD, that clearly knew what is was doing, had chosen a psychologist for our study. He wrote me a referral for a psychiatrist and that was it. Laughing in my face, basically.

Do I think that these doctors are not capable of conducting the study? No, it's not that. They might as well greatly help us by making huge progress, we never know, and I hope that is the case; I don't doubt their capabilities, I do wonder why they were chosen. But this is the reality of what is happening, and what will happen if, for example, they conclude that nothing is wrong with us and the NORD decides to remove POIS from the list of rare diseases, thinking it's psychological, psychosomatic, or psychiatric, because professionals with authority in those fields said so?

I'm very, very worried about the future if this study goes wrong. That's all I'm saying, and I think it's a valid concern and that the situation is very delicate. But I also understand that nothing can be done now, and that all we can do is wait. Thanks for listening anyway.
« Last Edit: April 07, 2022, 03:38:37 PM by demografx »

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #469 on: April 07, 2022, 03:48:21 PM »

Demo , for years, has done everything in his power and used all of his (excellent) PR abilities to extract information from NORD, and every little bit he gets, he shares it on the forum. 


Quantum, thank you! I’m so happy that someone here appreciates my efforts over the last 15 years!

;D ;D ;D
« Last Edit: April 07, 2022, 08:47:24 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

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #470 on: April 07, 2022, 08:32:56 PM »

Demo , for years, has done everything in his power and used all of his (excellent) PR abilities to extract information from NORD, and every little bit he gets, he shares it on the forum. 


Quantum, thank you! I’m so happy that someone here appreciates my efforts over the last 15 years!

;D ;D ;D

I’m very grateful for the warm response I received today in my inbox.

Thank you, everyone!

:) :)
« Last Edit: April 07, 2022, 08:47:04 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

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #471 on: May 09, 2022, 07:15:12 AM »

Dr Nicole Prause - co-Investigator
2022 POIS RESEARCH STUDY
(the Study is mentioned in this video)


“Advancing Research In Sexual Psychophysiology, Sexual Biotechnology, And Sex-Tech”

https://youtu.be/rFiehQLjPpk


Dr. Nicole Prause, PhD is an American neuroscientist researching human sexual behavior, and the physiology of sexual response.


=======================
After 3 years of working with them, I firmly believe that Dr. Prause - - and Dr Lorenz,
2022 POIS Research Study’s Primary Investigator - - are both strongly committed in the long run to eliminate the scourge of POIS. To find a cure for our misery!

Best wishes to us all,
Demo
=======================
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

Slight0

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #472 on: May 16, 2022, 03:28:16 AM »
What we, the millions of people with POIS, need is a consolidated effort from all of us to make something happen. This meager research effort that NORD is undertaking is cute and all, but they may not outpace the heat death of the universe. Even if they manage to, the size of the study may result in next to no results. I read they have what? Like $32k worth of funding? That's nothing. Most of these people are working as volunteers.

There are enough of us that if we could come together and focus on generating crowd sourced funding for a real study that moves fast and attracts serious research, we could make massive leaps forward. Maybe even multiple studies.

Like I said there are millions of people, that if we all only donated $1 dollar we'd have a massive study or even series of studies all under way ASAP. Now imagine donating 5, 10, or even 20 dollars. Donating a single lunch and coffee's worth towards the thing that can change our lives. We all have the power to do this and we've already shown that by pooling our collective knowledge and research we can make strides on treatment for ourselves alone. This NORD study is happening because of us, it's just not enough, we need more than this. Imagine 5 studies all actively turning out more insight with millions of dollars pushing it forward.

We need a new or at least more engaging website that filters information better, grabs attention, and helps the members of our community engage better. Helps them catalog their experiences and information in a readily accessible and easily sharable way. I have spare time and am a software developer by trade with a few friends that are looking for a hobby project. Maybe I could prototype something? That could serve as a nexus to snowball a social movement bringing more people in, start a real funding campaign, and get progress moving at a real measurable pace that we can count on. That we can put our hope into. Look at how fast the world responded to covid. Effective vaccine's in a years time and full breakdown of the virus's capabilities and mutation tracking at unprecedented levels. The power is out there to get this solved, we just need to harness a fraction of it by working together instead of being lazy and hoping someone else will do it for us. It really is just us that'll make this happen.
« Last Edit: May 16, 2022, 03:33:37 AM by Slight0 »

IronFeather

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #473 on: May 16, 2022, 07:06:42 AM »
What we, the millions of people with POIS, need is a consolidated effort from all of us to make something happen. This meager research effort that NORD is undertaking is cute and all, but they may not outpace the heat death of the universe. Even if they manage to, the size of the study may result in next to no results. I read they have what? Like $32k worth of funding? That's nothing. Most of these people are working as volunteers.

There are enough of us that if we could come together and focus on generating crowd sourced funding for a real study that moves fast and attracts serious research, we could make massive leaps forward. Maybe even multiple studies.

I agree with what you said about the need for more funding and research efforts, but I don't believe at all that there are millions of POIS sufferers in the world. Where did you get that idea from? We have a very small number of people here in this forum, and most of them report very non-specific symptoms like fatigue and brain fog, and then disappear from the forum and never report back again. Does that sound like POIS? To me, it sounds like people with generic health issues that are fatigued after sex, having issues because of a million possible reasons, and looking for answers online. I only see a few dozen people (maybe more, I've never actually counted them, but in any case, a small number) who are consistently participating and who report a medical history and symptoms that are clearly what we all share and call POIS. To me, POIS seems to entail a very specific set of symptoms and triggers that isn't going to be shared by millions of people, at all. I wish, it would give us far more resources and possibilities to get the attention of the medical community. But I believe we're pretty much alone, and unless one of us wins the lottery someday, I don't know how we're going to manage to fund a bigger study. There have to be many more POIS sufferers in the world than the ones who have found this forum, that's for sure, but how do we reach them? It's very likely that they don't even know there's a name for their disease.
26-year-old Spanish woman with POIS symptoms for the last 13 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

Slight0

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Re: POIS 2021-2022 NORD RESEARCH STUDY
« Reply #474 on: May 17, 2022, 11:13:45 PM »

I agree with what you said about the need for more funding and research efforts, but I don't believe at all that there are millions of POIS sufferers in the world. Where did you get that idea from?

1.1% of people have a peanut allergy. 0.2-1% of people are born with both male and female reproductive organs. Rate of people being born with 6 fingers is 0.001 - 0.05%. Even if 1 in 1,000 people (0.001%) have POIS, that's 7.5b *  0.001 = 7.5 million people worldwide who have it. If we can get just 1.33% of those people to donate $10, we would have $1 million dollars in funding. I obviously have no hard statistics for the rates of POIS, just making some very conservative estimates using other rare diseases gets us close to a safe minimum estimate.


We have a very small number of people here in this forum

Exactly my point! Likely the vast majority of people who have POIS don't even know about this place and only a fraction of the people that go here know about the NORD study or had a chance to even contribute. If we make a greater effort to get the word out through socials, videos, hell ads even, we can reach out to those people and bring them together.

Does that sound like POIS? To me, it sounds like people with generic health issues that are fatigued after sex, having issues because of a million possible reasons, and looking for answers online.

Yeah there's always going to be that, but I'd imagine only people with serious issues would be making an account in a place as esoteric as this. Hey, even if people who think they have POIS but don't contribute to funding, no harm done right?

I only see a few dozen people (maybe more, I've never actually counted them, but in any case, a small number) who are consistently participating and who report a medical history and symptoms that are clearly what we all share and call POIS.

This forum is a terrible place to rank the frequency of POIS. Most POIS sufferers are out there in the dark unaware of this place.

Even I want to contribute here but this site is such a pain and chaotically organized I don't even know where I'd begin. What if the website itself had clear places to list your symptoms, list test results, attempted treatments, and even let you view other user's posted data? What if we used gamification elements to spur people into participating? A clearer way to see what are active topics, more like reddit's format, and more direct displays of conversations people are having of you.

There have to be many more POIS sufferers in the world than the ones who have found this forum, that's for sure, but how do we reach them? It's very likely that they don't even know there's a name for their disease.

For every comment you make correlating with POIS there is a pool of people who will see it and of that pool of people some small percentage will identify it, google it, and hopefully land into the POIS community. That means we'd need strong google affinity for POIS related searching and an active effort on the community's part to constantly spread awareness everywhere they can. There are techniques to spur these kinds of user engagements from gamification to affiliate strategies, but I only know a few of them, others only at a surface level. Point is, this is like the bare bare minimum of a community (no offence to the people that make this place, the first step is always the most important). There is a great deal more that can be done I believe to increase reach and ultimately funding.