Sign in to follow this  
Followers 0
henryg

Narco Wiki

12 posts in this topic

The Narco-Glossary and possibly the future "The Narco-Imperative" I was thinking just for fun. Kinda frivolous, imaginative and at parts ironic.

But on a more serious note how about we start a serious Narco Wiki?

The Wiki software (like you see in Wikipedia) is absolutely free to download, use and install.

In this "Narco Wiki" we could put all objective facts and details and where one can get help, etc about Narcolepsy and it's symptoms.

For the Narco Wiki to work:

* It must be truly objective - instead of subjective or anedoctal.

* It needs to be unbiased and non litigious

(it's ok for me to shout out UK DOCTORS are mostly USELESS .. as a rant in a forum, in my blog: I may be proven the contrary one day and praise them instead forever ever amen) - but such "opinions" can't be entered in the Wiki

Example: The Hague Sleep Clinic - and then say about its bad etc. However if there has been an incident which is verifiable and quotable - then it could be mentioned and backed up (if and only if SUPREMELY relevant - should never be done really)

* Back up data with quotes. Example:

Caffeine : although a stimulant should be avoided by Narcolepsy patients.

Yes? Says who.

I mean please forgive me from stating the obvious (my intention is not to be unintenionally patronizing for those that are more than aware of how Wikis work and so on)

WIKI

Listing known Symptoms

Known medicine (no alternative treatments)

How is Narcolepsy diagnosed.

What is a Multiple Sleep Latency Test.

List of Sleep Centres, Sleep Clinics, Hospitals, Doctos: Narcolepsy-specialists around the world

List of Narcolepsy Associations / Forums / Communities around the web

Kinda Academic and boring but nevertheless ever so ever so helpfull really.

The advantage of a Wiki are many.

For example I am in Scotland is there a sleep clinic in Glasgow?

What is Nuvigil?

What causes Narcolepsy? (OK noone knows but it can be written as : researchers believe that etc etc)

Anyway just a thought.

What do y'all think?

Share this post


Link to post
Share on other sites

I love the idea and I would contribute !

Share this post


Link to post
Share on other sites

Yeah I agree, would be happy to contrbute as well, Just recently getting kicked of Ukan BB.

For speaking open and Honestly and for name and shaming a specialist who sat in his chair as I had an attack in my appointment with him.

Didn't even sit up to look over desk.

But I would be happy to input good more than bad.

Share this post


Link to post
Share on other sites

I know very little about UKAN.

When you say UKAN BB - where you part of the Board?

.. ah ok Bulletin Board!

Never knew they had a Forum!

About the Wiki, we just need a server and the software then we can get cracking.

Also I got "powers" :)

.. when people search for a Narco-related entry, instead of landing on some pro-pharmaceutical site or UKAN BB, I probably should be able to divert all Search Traffic - make people land right on the Wiki instead.

And once inside the Wiki they can follow up and finally land in here (the best Narcolepsy site on the planet!).

Woah - this is going to become a huge World Club!

But yeah just an idea - like something for people to think about or consider in future,

Wiki would be pretty nice and fun whilst getting many people busy.

Share this post


Link to post
Share on other sites

when I am back from Brazil and then back from the US conference.

I could look up registering a domain and a host server. I've never installed a Wiki before (Apache/PHP is not my strength really) but could give it a go.

Share this post


Link to post
Share on other sites

That is a great idea!

Now all we need is someone that has access to a server and some great wiki software, and we'd be.....wait a minute!!!!! :o:o

Your wish is my command :)

-Stu

Share this post


Link to post
Share on other sites

WOAH !!

Brilliant! Superb!

You are Brilliant !

Let me know when it's installed I will start straight away.

Thank youuu !!

Share this post


Link to post
Share on other sites

The Wiki idea sounds like it could help the world not only understand but know about narcolepcy is.

Dani.

Share this post


Link to post
Share on other sites
The Wiki idea sounds like it could help the world not only understand but know about narcolepcy is.

Dani.

Yes it is not just an idea anymore - it is going to happen soon.

I am pretty thrilled.

I think Stu is great :)

Who needs waking meds when you have a new Wiki to edit :P

Also nice to learn something new.

Share this post


Link to post
Share on other sites
Yes it is not just an idea anymore - it is going to happen soon.

I am pretty thrilled.

I think Stu is great :)

Who needs waking meds when you have a new Wiki to edit :P

Also nice to learn something new.

When you say narco-wiki and symptoms will this be also: including cataplexy,sleep paralysis,hnogoic Hallucinations.

I would like to see all above to have its own unique-wiki?As well as still being linked to each other through the symptoms or something!

Share this post


Link to post
Share on other sites
When you say narco-wiki and symptoms will this be also: including cataplexy,sleep paralysis,hnogoic Hallucinations.

I would like to see all above to have its own unique-wiki?As well as still being linked to each other through the symptoms or something!

One wiki encompasses everything: cataplexy, sleep paraylisis, H Hallucinations, treatments, clinics, current research, medicines, narcolepsy associations, web forums, links, articles, orexin-A/B .. But the wiki is geared to the N patient and/or their friends & relatives; wiki entries won't be technical but just simply helpful clear-cut and friendly.

Share this post


Link to post
Share on other sites

LOL LOL . :rolleyes: YES I AGREE TO ALL OF THE ABOVE. STU IS GREAT . UKAN DO HAVE A FOURM ,BUT IT COSTS AND YOU CARNT POST YOUR POINTS OF VEIW. I HADNT GOT A CLUE WHAT A WIKI WAS :P .LOL LOL. BUT THANKS GUYS I DO NOW I JUST ALWAYS KNEW HER AS KIMBERLY. LOL LOL ( THANKS KIMBERLY FOR ALL YOUR HELP) :)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0