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Is there anything you want to do to improve this forum?


Jay1
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It seems that each time the server goes down for a week to two... post counts and topics seem to go downhill for a while after.

As some of you might know, the server is now paid for for a year and we shouldn't run into those problems again.... So maybe now is a good time for the group to focus on making this place an even resource and support system.

Is there anything you would change? Anything you wish members would do?

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A section dedicated only for researchers, invite only and only accessible to researchers. Members may view the discussions only. Should start with researchers who have already published articles. Let's get people who have degrees and access to funding to come to a place where they can collaborate and work together and work at an accelerated pace to solve this dread.

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  • 3 weeks later...

After 3 weeks there has been no suggestions beyond Hope1's - so perhaps people are happy as it is.

As mentioned in Merkan's goodbye thread, participation in polls could be useful.

Many are relying on others to come up with an answer ... drugs, lifestyle changes, herbs, stem cells, ...

But why not collect information ourselves? Empirical observations and studies?

People often post, "Drug X made me so much better". But we need details as to what symptoms are affected ... and even attempts at understanding the person's life and physiology to better figure out WHY.

Perhaps this has been done. So I ask:

Is there an official list of HPPD symptoms (and common simultaneous non-HPPD ones) that members can "check-off"?

B) With such a list, then we could "check-off" medication response - negative, positive and neutral

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I had an idea some time ago to create a database that we can enter various "levels" of pre-determined symptoms and other connected problem (OCD, Paranoia.. for instance). Maybe some way to input drug use too... and , of course, enter our med history with notes and scales (eg, visual reduction 30%).

What would be perfect would be to also have some "simulations" for visual symptoms that could log the users results.

Unfortunately, I don't have the coding skills to pull such a thing off.... I can design and plan it... But would need help with the rest. Maybe someone here could help with that side of thing.... Or perhaps some kind of kickstarter campaign to pay for it.

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I had an idea some time ago to create a database that we can enter various "levels" of pre-determined symptoms and other connected problem (OCD, Paranoia.. for instance). Maybe some way to input drug use too... and , of course, enter our med history with notes and scales (eg, visual reduction 30%).

What would be perfect would be to also have some "simulations" for visual symptoms that could log the users results.

Unfortunately, I don't have the coding skills to pull such a thing off.... I can design and plan it... But would need help with the rest. Maybe someone here could help with that side of thing.... Or perhaps some kind of kickstarter campaign to pay for it.

While a nifty, outside polling program would be great as would simulators, a list with pictures (even some GIFs for snow and other movement effects) may be clear enough. A HPPD "vocabulary" needs to be established ... and some of our crap is beyond weird.

Expecting good complience is a problem. Some of us our brains get so scrambled that it is frustrating/overwelming to figure out. Obviously this isn't an easy task.

As for simulators, a lot of work has been done here: http://www.visionsimulations.com/

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