Let's do what we can

Topics related to activism.
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anacleta
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Let's do what we can

Unread post by anacleta »

First: sorry for my english.

I received the information that there are over 120 ACTIVE people, participating and paying on Discord. Whether it is accurate information or just approaching it is not too important for what I mean.

So why does it seem that very few people participate in other potentially useful initiatives for all of us?

I remember that for the most valuable thing we were asked to do, that is to fill out a short questionnaire in a non-anonymous way (at the end of 2018) which would then have been provided to EMA, a total of 62 participants attended. this then contributed to the updating of the SSRI and SNRI leaflets. ok, it's water under the bridge.

I would like to list some initiatives currently underway to which each of us with PSSD should make a small effort to contribute. No guarantee that through these we will have a reward, but we must try anyway. They are not in order of importance, please read everything, and above all, do.


:arrow: QUESTIONNAIRES - all important to fill in carefully. if you haven't done it yet, don't wait.



:arrow: Sudoscan is a device that is used to analyze small nerve fibers. there is a penile adapter that has shown changes in the genitals of diabetic patients with sexual dysfunction. The Sudoscan owner "doesn't want to" allow some men with PSSD to try the penis adapter. However, this could be a potential diagnostic tool and could make us understand if the problem is there or not. We are invited to send a letter to the owner of Sudoscan: https://rxisk.org/business-opportunity- ... o-medical/


:arrow: The British among us should send a letter to their Member of Parliament as indicated here: https://rxisk.org/the-politics-of-pssd/ He was interested in PSSD and needs to be...spurred on.

In addition, with a little more initiative, ingenuity and courage, anyone from any country can try to contact politicians, health ministers, specialists, research centers, associations for rare diseases, journalists, TV programs, etc. .. to try to move things.


:arrow: One of us recently had an idea, it takes 2 minutes to participate. anyone can do it, not just the British: viewtopic.php?f=5&t=3632


:arrow: Whoever has the opportunity to donate something to the Rxisk Prize: https://rxisk.org/prize/ Once reach $ 100,000, we will finally have in hand a tool that can be advertised and used in various ways to be useful: if it cannot reward those who find a cure, it could be used to research on the pssd, to attract the attention of journalists, politicians, researchers etc.



if something has been forgotten, add
Last edited by anacleta on Wed May 27, 2020 7:34 am, edited 1 time in total.
Frog
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Re: Are you actually more than 100 on Discord? so why...?

Unread post by Frog »

Those of us who donate to meso on discord support his research reviewing and article writing. We donate so he can focus on pssd full time. He is in the process of setting up animal studies to find the cause and hopefully a cure for pssd. Further details on this will be announced soon. He’s currently working on the outline for the research with his former teacher from university who has experience in cancer research and genetics
Leb89
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Re: Are you actually more than 100 on Discord? so why...?

Unread post by Leb89 »

How is it possible to donate? I would like to donate
Frog
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Re: Are you actually more than 100 on Discord? so why...?

Unread post by Frog »

Just to clarify, I’m not mocking the other incentives and people should definitely take part. Just explaining what goes on with people on discord
Frog
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Re: Are you actually more than 100 on Discord? so why...?

Unread post by Frog »

Leb89 wrote: Sat Apr 18, 2020 2:39 pm How is it possible to donate? I would like to donate
Leb89, see this website for details :)

https://www.theresearchzone.com/donate-consultation
Leb89
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Re: Are you actually more than 100 on Discord? so why...?

Unread post by Leb89 »

Frog wrote: Sat Apr 18, 2020 2:42 pm
Leb89 wrote: Sat Apr 18, 2020 2:39 pm How is it possible to donate? I would like to donate
Leb89, see this website for details :)

https://www.theresearchzone.com/donate-consultation
I read on another post that meso does not work on that project atm, is that true?
Frog
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Re: Are you actually more than 100 on Discord? so why...?

Unread post by Frog »

Meso is working on the project
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anacleta
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Re: Are you actually more than 100 on Discord? so why...?

Unread post by anacleta »

I think one thing: how many of us have read on Rxisk and are at least a little bit interested in the good news of Mario Negri?

So, Why almost nobody bothers to leave a comment under the post ?

1. The participation of many of us with so many comments under the posts on PSSD, could prove to anyone who reads that we are here, now, involved, and waiting for a solution!

2. Healy is a person who is dedicated to the problem of us desperate and it seems that he does more of everything we do. If we want him to keep doing this, at least let's motivate him and give a sign of our presence and interest.

In other words, under Rxisk posts or other public articles on the web we try to show participation. Let's do it ourselves, not wait for someone else to do it. This on the whole will come back to our advantage.
Frog
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Re: Are you actually more than 100 on Discord? so why...?

Unread post by Frog »

anacleta wrote: Tue May 05, 2020 9:00 am I think one thing: how many of us have read on Rxisk and are at least a little bit interested in the good news of Mario Negri?

So, Why almost nobody bothers to leave a comment under the post ?

1. The participation of many of us with so many comments under the posts on PSSD, could prove to anyone who reads that we are here, now, involved, and waiting for a solution!

2. Healy is a person who is dedicated to the problem of us desperate and it seems that he does more of everything we do. If we want him to keep doing this, at least let's motivate him and give a sign of our presence and interest.

In other words, under Rxisk posts or other public articles on the web we try to show participation. Let's do it ourselves, not wait for someone else to do it. This on the whole will come back to our advantage.
I understand where you’re coming from but I don’t think attacking the 30+ people who donate to Meso on the research server is the best way to approach the situation. Those of us who donate are funding research reviewing from someone who has studied PSSD in great depth and is also setting up a detailed lab study to try and find the root of PSSD and hopefully a cure. More details on this will be provided as soon as the outline is complete but it is time consuming. It’s very important that it’s as good as it can be. I see this as productive behaviour, despite it not currently being one of the main initiatives. When the outline is released I’m sure many people will begin to support the cause.

I also admire Dr Healy and believe we should support the RxISK prize and contact as many organisations, charities, professionals and other individuals as we can to get PSSD more recognition.

I completely agree that some people, particularly on the larger discord server, do nothing to help themselves and just sit and moan all day. We all need to play our part in this battle, even if we support different initiatives.
Frog
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Re: Are you actually more than 100 on Discord? so why...?

Unread post by Frog »

Frog wrote: Tue May 05, 2020 11:26 am
anacleta wrote: Tue May 05, 2020 9:00 am I think one thing: how many of us have read on Rxisk and are at least a little bit interested in the good news of Mario Negri?

So, Why almost nobody bothers to leave a comment under the post ?

1. The participation of many of us with so many comments under the posts on PSSD, could prove to anyone who reads that we are here, now, involved, and waiting for a solution!

2. Healy is a person who is dedicated to the problem of us desperate and it seems that he does more of everything we do. If we want him to keep doing this, at least let's motivate him and give a sign of our presence and interest.

In other words, under Rxisk posts or other public articles on the web we try to show participation. Let's do it ourselves, not wait for someone else to do it. This on the whole will come back to our advantage.
I understand where you’re coming from but I don’t think criticising the 30+ people who donate to Meso on the research server is the best way to approach the situation. Those of us who donate are funding research reviewing from someone who has studied PSSD in great depth and is also setting up a detailed lab study to try and find the root of PSSD and hopefully a cure. More details on this will be provided as soon as the outline is complete but it is time consuming. It’s very important that it’s as good as it can be. I see this as productive behaviour, despite it not currently being one of the main initiatives. When the outline is released I’m sure many people will begin to support the cause.

I also admire Dr Healy and believe we should support the RxISK prize and contact as many organisations, charities, professionals and other individuals as we can to get PSSD more recognition.

I completely agree that some people, particularly on the larger discord server, do nothing to help themselves and just sit and moan all day. We all need to play our part in this battle, even if we support different initiatives.
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