Improvements on this website?

Wonder if there are some plans to improve this website? Like making more subcategories, sticky threads, dummieguides for everything es related, News, etc. The possibilities are many.
It's so much low quality stuff on internet on es, too much based on myths, belief, conspiration and fantasy.
Hopefully this can be better and evolve into some truly great and be and even bigger resource for the worlds es sufferers.
 

In the past, with other topics, I've tried creating more elaborate forums, and the added complexity hindered people from communicating.  Which resulted in a dead group.  I think there are other such ES forums on the net, and I've heard complaints that they are also "dead", so it might be best keeping the site as-is.  

This was only ever intended to be a "mailing list" / "discussion group", so that's why it has not evolved into something more than that.

Also, anyone who claims to know "the truth" about a subject is likely to have plenty of people disagreeing with it.  For example, something that one person believes to be a myth or fantasy is what another person considers to be fact.  So at least with a forum, people can share their various experiences.  

In theory, the Wikipedia page for ES should be the source of "the truth", but unfortunately, many people think it's completely wrong.

Marc

   

Marc Martin wrote

In theory, the Wikipedia page for ES should be the source of "the truth", but unfortunately, many people think it's completely wrong.

Marc

Wikipedia will never contain anything that is not "public view".  https://en.wikipedia.org/wiki/Wikipedia:Why_MEDRS%3F
But as an encyclopedia, Wikipedia is committed to providing reliable information to the public. We having nothing to do with hype or eyeballs or the 24-hour news cycle. We go slow, and say what is certain (which includes saying "we don't know" or "there is insufficient evidence to say X").

sake wrote

Wonder if there are some plans to improve this website? Like making more subcategories, sticky threads, dummieguides for everything es related, News, etc. The possibilities are many.
It's so much low quality stuff on internet on es, too much based on myths, belief, conspiration and fantasy.
Hopefully this can be better and evolve into some truly great and be and even bigger resource for the worlds es sufferers.

I thought about making such site, but as you can see.. Not many people with ES can use a computer.  So, it would only be for their relatives.  
Most people who have ES will never figure it out.  It's like having some strange symptoms and going to the doctor hundreds of times with no diagnosis.. You can't look up on the internet and figure out you have ES, because the symptoms are so random.  
If the symptoms were similar with everybody it would certainly help a lot towards making ES credible, but since people react to different things in different ways, it's easy to dismiss it..

Some effort to a better site would be worth if there were more people I think, but right now the participation is quite low I would say.  Think about it, supposedly 100's of thousands of people have this problem in Sweden.. where are they online?.. Doesn't seem like they are online at all.

Nothing is perfect, but i think this forum is pretty good, i prefer it over the facebook groups.