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How to promote Jen Brea's TED talk when it goes up on YouTube?

olliec

olliec

Senior Member
Messages
111
Location
London, UK
MEpedia is important alongside the Millions Missing site, to expand and grow pages so those seeing the TED talk can learn more, especially about Jen and the film, but also to springboard into related topics. MEpedia is different to other locations online as anyone can edit pages, so easier to collate/compile the facts and link resources together (without the editorial nonsense of Wikipedia).

Please help expand these pages:

http://me-pedia.org/wiki/Jennifer_Brea
http://me-pedia.org/wiki/Canary_in_a_Coal_Mine
 
M

MEPatient345

Guest
Messages
479
Yes, thanks olliec.. the millionsmissing website will be aimed at patients, public and press. The site is very visual and not too content heavy. It's meant to be easy to read and accessible to people who know little about the disease. The tone is positive and rallying.

MEPedia.org is appropriate for info for and on researchers, doctors and political history etc. We will link to it from MM.org. So apart from the two pages olliec mentioned, you can create or add to pages on the topics of your choice.. Some of what @Bob @A.B. and @eastcoast12 listed are created as primers here, but need some love!
http://me-pedia.org/wiki/Welcome_to_MEpedia#Primers
Like this one is empty, and could house the nursing links mentioned above.
http://me-pedia.org/wiki/Primer_for_family,_friends_and_care_providers

There is a list of tips and how to get started on the home page!
 
M

MEPatient345

Guest
Messages
479
Right now, we link heavily to these two pages from millionsmissing.org. They are in pretty good shape, but def worth a review from people here.
http://me-pedia.org/wiki/Primer_for_the_public
http://me-pedia.org/wiki/Primer_for_doctors_and_researchers

If someone could add the Dutch study about QoL to this section
http://me-pedia.org/wiki/Primer_for_doctors_and_researchers#Prognosis

And this section could use some work. Preferably to separate out the three components and bulk up on "numbers afflicted" and "economic impact". Maybe disease onset doesn't belong with them, but with symptoms.
http://me-pedia.org/wiki/Primer_for_the_public#Disease_onset.2C_number_afflicted.2C_economic_impact
 
olliec

olliec

Senior Member
Messages
111
Location
London, UK
MEpedia being a wiki means not only can anyone edit, but it is always in a state of flux and improving, it's never "finished". So for those considering making edits but hesitating, I say BE BOLD. If you are reading a wiki page and see something that is incorrect or could be improved, YOU are probably the best person to make the improvement. MEpedia is a crucial long-term project for patients, and could be seen as our "shared brain", to collate all of the most important information about the disease, research, policy etc. MEpedia was created by MEAction, but the licence we're using makes the content open-source, so MEpedia content can be reused, and the project does not claim ownership of content added. It is for all of us to use and benefit from.

Examples of more advanced & complete pages are those for PACE and Rituximab:
http://me-pedia.org/wiki/Rituximab
http://me-pedia.org/wiki/PACE_trial

If anyone needs help with editing try here first http://me-pedia.org/wiki/How_to_contribute If you have specific questions, send a message to one of the MEpedia social media accounts and someone will help out. There is also a contributors forum at http://my.meaction.net/local_chapters/mepedia
https://www.facebook.com/mepedia/
https://twitter.com/MEencyclopedia

As MEpedia pages become more complete, they become very powerful to answer questions like "Who is researching mitochondrial dysfunction?", "What is the political & research situation in Canada?", "What studies have been done by Staines/Marshall-Gradisnik?", "What drugs are in trials and how safe are they?", "Who is Ronald Davis? What is he working on?", "What are the NIH planning?"
 
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