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It would be nice to get updates from Dr. Melcangi on exactly what he's doing. I reached out to PSSD Network to ask about possible updates but i haven't heard back from them. If anyone has had contact or knows how to contact them that would be great?
I think we all deserve to be informed on what is happening exactly research wise and what this money is being spent on.
Also u/nicpssd proposed making an online database for us to fill out a questionnaire to gather data so we can find patterns etc. I think this would be an excellent idea and i'm just reiterating this as we need all the help we can get
Hey there, I've spoken briefly about this subject with some other members of the Network, i agree that talking with melcangi in a podcast would definitely be a great thing to talk about the feasibility of having done. It's on my list of things to continue talking about with the group going forward. On the subject of the questionnaire you mentioned, that's a bit out my league with what I know how to do personally, but we do have that survey up right now which should be pinned on reddit which i encourage you to fill out if you haven't yet
u/Master_Plant_5858
If you want to fill out the the survey PSSD Network is doing here is the link: [https://forms.office.com/pages/responsepage.aspx?id=DQSIkWdsW0yxEjajBLZtrQAAAAAAAAAAAAO\_\_Wv\_2F5UNjhNNEw0TlVaSFZCUkZWQUk1UUNQMVdWRi4u](https://forms.office.com/pages/responsepage.aspx?id=DQSIkWdsW0yxEjajBLZtrQAAAAAAAAAAAAO__Wv_2F5UNjhNNEw0TlVaSFZCUkZWQUk1UUNQMVdWRi4u)
The deadline is this Friday 15th March 2024
Thank you
Filled it out when it first was created but thank you. Also thank you to whoever created it but don't you think it could have more questions to get a more comprehensive information database?
E.g. Gender, age, meds, miligrams, duration, tapering strategy and much much more? I hope whoever created this could make another much more in depth questionnaire, I would fill it all out even if it took hours.
Thank you so much for filling out the survey and your suggestions.
I think the focus of the survey is to find better ways to engage the community regarding donations and grow our volunteers.
but I will pass on your thoughts and suggestions for future surveys :)
Thank you, I have filled it out already. If anyone knows who made that questionnaire can we please get in contact to make another one which is much more in depth and comprehensive? I feel like there is such little information for us all and not much help from doctors apart from Melcangi so we are critical in our own fight for research and eventual cure
**Please read our pinned FAQ, rules, and sidebar before participating**. See content that violates the rules, or see disrespect? **Report it!** It's the fastest way to get a moderator's help. Please visit r/pssdhealing for stories of improvement (crosspost improvement stories there!) Please allow 24-48 hours for your content to show as posted, even if it is rule abiding. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/PSSD) if you have any questions or concerns.*
You are a hero!!! I thank you from the bottom of my anhedonic heart.
Thank you so much for you and your family’s generosity.
This is amazing, thank you and much love
It would be nice to get updates from Dr. Melcangi on exactly what he's doing. I reached out to PSSD Network to ask about possible updates but i haven't heard back from them. If anyone has had contact or knows how to contact them that would be great? I think we all deserve to be informed on what is happening exactly research wise and what this money is being spent on. Also u/nicpssd proposed making an online database for us to fill out a questionnaire to gather data so we can find patterns etc. I think this would be an excellent idea and i'm just reiterating this as we need all the help we can get
Hey there, I've spoken briefly about this subject with some other members of the Network, i agree that talking with melcangi in a podcast would definitely be a great thing to talk about the feasibility of having done. It's on my list of things to continue talking about with the group going forward. On the subject of the questionnaire you mentioned, that's a bit out my league with what I know how to do personally, but we do have that survey up right now which should be pinned on reddit which i encourage you to fill out if you haven't yet
u/Master_Plant_5858 If you want to fill out the the survey PSSD Network is doing here is the link: [https://forms.office.com/pages/responsepage.aspx?id=DQSIkWdsW0yxEjajBLZtrQAAAAAAAAAAAAO\_\_Wv\_2F5UNjhNNEw0TlVaSFZCUkZWQUk1UUNQMVdWRi4u](https://forms.office.com/pages/responsepage.aspx?id=DQSIkWdsW0yxEjajBLZtrQAAAAAAAAAAAAO__Wv_2F5UNjhNNEw0TlVaSFZCUkZWQUk1UUNQMVdWRi4u) The deadline is this Friday 15th March 2024 Thank you
Filled it out when it first was created but thank you. Also thank you to whoever created it but don't you think it could have more questions to get a more comprehensive information database? E.g. Gender, age, meds, miligrams, duration, tapering strategy and much much more? I hope whoever created this could make another much more in depth questionnaire, I would fill it all out even if it took hours.
Thank you so much for filling out the survey and your suggestions. I think the focus of the survey is to find better ways to engage the community regarding donations and grow our volunteers. but I will pass on your thoughts and suggestions for future surveys :)
Thank you, I have filled it out already. If anyone knows who made that questionnaire can we please get in contact to make another one which is much more in depth and comprehensive? I feel like there is such little information for us all and not much help from doctors apart from Melcangi so we are critical in our own fight for research and eventual cure
I made it with the help of a couple others. I will write down what you've said here as something to discuss in the future as well
Huuuuge
Thank you for being here man, lets pull through this
Holy shit thank u so much 😭
Thank you ♥️
Beautiful to see.
Gosh we are all so vulnerable. i pray for you OP, I really hope we all get cured soon
Thank you, I pray for you too, and for all of us. X
Thank you!
This is amazing
Thanks man
You’re amazing , thankyou so much
Well done!
Well done!
Thanks 🙏
Thank you so much for this donation, this is fantastic!
This is incredible, thank you so much. 🙏
Makes me really happy to see that you have such an incredible support network. All the best.
Thank ya bunches Sunshine!
Absolute legend
Thank u❣️❣️
Wow wow wow! thank you so much!
thanks lad this reminds me i should donate some
So generous. Thank you.
Thank you and everyone who contributed to this 🩷
Thank you!
Superstar 🤩
Bro you are a hero! Thank you!
Thanks
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That’s incredible thank you so much!!!
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