Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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MEpedia

Discussion in 'Information and Resources' started by slysaint, Dec 7, 2015.

  1. slysaint

    slysaint Senior Member

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    Just found out about MEActions idea to set up MEpedia. Not quite sure how it'll work. Thought someone would have posted about it here............?
     
  2. Hip

    Hip Senior Member

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    Looks like a very worthwhile project. Seems that the MEpedia has already been set up, and already has some articles:

    The MEpedia main index page is HERE, and just as it stands, is already a good tour de force of key terms, key people and key institutions in the ME/CFS world.

    At this early stage, most of the articles that the main index page links to are stub articles (ie, just one or two lines of text long); but no doubt these will be expanded upon soon. Some articles, like the rituximab article and the PACE trial article are already quite substantial.



    On the MEActions website, this article introduces the MEpedia, and explains is principles:
     
    Last edited: Dec 7, 2015
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  3. msf

    msf Senior Member

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    Hmm, I feel it may end up reflecting a particular view of ME. Let´s just hope it turns out that they were on the right path.
     
  4. slysaint

    slysaint Senior Member

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    @Hip thanks for the links etc, haven't looked at it in depth but hopefully different ME groups will join in and give more varied/balanced view points (if they know about it). I don't know to what extent the organisers will censor any proposed entries....we will see.
     
  5. JenB

    JenB

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    Hi all! I just happened to stumble across this thread. @msf I would love to understand better what you mean by reflecting a particular view of ME and what the "right path" means to you. I am curious what your concerns are about the point of view the original announcement implies.

    We aim to be comprehensive - a complete reflection of the diversity and range of experience of this community. The full range of ideas. The full range of history, science, politics. It's meant to give patients, journalists, and I hope eventually scientists a deep and comprehensive view.

    It's meant to be an encyclopedia, so it needs to stand on evidence, but we also have medical hypotheses pages that allow for more speculation and really any and all theories of the disease. We don't intend to censor - this is a crowdsourced project. What matters most is that the quality of the evidence (which will vary) is clear and that people can trust the information they read because it has been well-researched and cited.

    We are also developing policies, style and organization everyday. Anyone can have a voice in that process. All you need to do is show up.

    It will only be as good (and diverse) as its contributors so I heartily encourage all of you to jump in. I think it will be fun!

    See: http://me-pedia.org/wiki/How_to_contribute and join our working group here: http://my.meaction.net/local_chapters/mepedia
     
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  6. msf

    msf Senior Member

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    Hi @JenB

    Sorry, I should have been clearer - I wasn´t suggesting that MEpedia would (or should) have a psychosomatic bent, just that it might favour one physical explanation (autoimmunity say) over others (infection or autoinflammation). But if you are going to have medical hypothesis pages then hopefully all the arguments will be represented. Then it just comes down to how people view the evidence, which can vary quite a lot, but if anyone can contribute then all sides should be able to have their say.

    I will contribute to one of the medical hypothesis pages when I feel up to it.
     
  7. JenB

    JenB

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    That's great! Please do jump in. And if you don't see the page you are looking for and need any help getting started, just let us know.

    Here are a few example of medical hypotheses pages that are better fleshed out:
    http://me-pedia.org/wiki/Ken_Lassesen's_model
    http://me-pedia.org/wiki/Omega_3_fatty_acid_hypothesis
    http://me-pedia.org/wiki/Patricia_Kane_protocol

    This one is not in the format of the others and need to be expanded: http://me-pedia.org/wiki/Vagus_nerve_hypothesis

    I wrote most of the content on these pages and they represent totally different perspectives on the illness. The way I approach it is that I write on MEpedia about whatever I happen to be reading about at the time. It's now become my prosthetic brain so I have a place to go and read and find what I just learned and forgot (which happens all the time since developing this illness!) For me it's not really about having my say because I don't have strong opinions about what causes or cures this. I like reading everything and writing about everything. Little by little hopefully we will get to something that looks like a comprehensive treatment of our collective knowledge. What I am most excited about is the potential that through all of this interlinking (links within the wiki between pages) and by including basic science + research in other diseases, some of the hypotheses be experimental work will start to connect to each other in ways that we didn't anticipate or that are harder to see/explore through more linear ways of writing and thinking.

    Anyway, jump in and let us know if we can help.
     
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  8. AndyPR

    AndyPR Senior Member

  9. slysaint

    slysaint Senior Member

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    @JenB
    Hi, I was just doing some Googling and have found that since AfME takeover of AYME any links take you to the AfME website.........but not to the information in the link. I was looking something up on MEpedia and the same thing happened. Anything you can do to fix this?
     
  10. AndyPR

    AndyPR Senior Member

    Got an example @slysaint ? If it's a case of information on MEpedia that is now incorrect, that will take as long as it takes for an editor to get around to updating it, and as far as I know they are all patient volunteers.
     
  11. slysaint

    slysaint Senior Member

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    AYME Functional Ability Scale
    http://me-pedia.org/wiki/AYME_Functional_Ability_Scale

    this is an example; I imagine there are more(?)
     
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  12. Joh

    Joh Inactivist

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    It's easy to edit stuff, you just have to sign up.

    From MEpedia:
     
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  13. AndyPR

    AndyPR Senior Member

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  14. slysaint

    slysaint Senior Member

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    Maybe when you know how!

    Anyone interested in doing something to help this is the link to lessons to find out how (there is a massive list of
    '5 minute jobs') :

    http://me-pedia.org/wiki/How_to_contribute#Lesson_1

    and the Youtube tutorial:



    Sadly, I'm not quite there yet:nervous:
     
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  15. AndyPR

    AndyPR Senior Member

    I have to admit that I, currently, have no clue about formatting or any of the fancier stuff, but just changing that link earlier takes no more computer skills than using this forum - so if you are thinking of helping out, please give it a try, it's nigh-on impossible to mess things up beyond redemption :)
     
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