Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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New ME/CFS News Tracking/Trending Blog

Discussion in 'General ME/CFS News' started by Elisa, Jul 30, 2011.

  1. Hi All!

    I love to keep up with news and research - our news...but I have to conserve my energy too -
    so visiting 300+ blogs everyday is not an option.

    In my past I loved building databases - large ones. So I put my skills to task
    and compliled a small database/list of blogs and sites that are associated in some way
    with ME/CFS/FM/NID/X etc.

    I wanted to be able to glance at a site and see what was 'new" quickly
    and often- so I formated this one to list newest posts at the top -
    pretty simple.

    http://mecfsblogroll.blogspot.com/

    So in sum, I created a "ME/CFS News Tracking" blog-style site to help me keep up
    with "our" news (not for personal posts or not a forum) - like a
    reference site. I am working on others ways to help it be useful and
    relevent (and me too) - news-wise.

    BTW, its been losing its formating - so if you view it and it's a list
    without the headlines and time posted - then its messed up and re-
    visit later - I'm still working things out.

    Take care everyone - and if you'd like to add a site/blog or see I've
    missed a few please please let me know.

    Its like our personal Drudge Report - hah!

    God Bless,

    Elisabeth

    (P.S. I really hope its helpful to someone. It is really a time and energy saver for me and comforting to me - to be able to keep up with friends in this community and news/reserach. Of course this site (Cort's news portion) is always trending on it!!! )

    NOT SELLING ANYTHING - BUT I AM PUTTING WPI DONATION REQUESTS ON THE SITE!
     
  2. *GG*

    *GG* Senior Member

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    Interesting. Thanks

    GG
     
  3. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    well done, Elisa, thank you!
     
  4. illsince1977

    illsince1977 A shadow of my former self

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    Personally, I prefer subscribing to RSS feeds directly or through Google Reader or one of other RSS feed readers available to keep up with the blogs I like. I commend you for using your skills in service of the community, but am puzzled by this approach. I'm sure I must be overlooking something! I do intend, though to give your page a thorough review to see if there are any blogs or sites I can subscribe to that have escaped my notice until now. Thank you.
     
  5. Thanks GG, WillowJ and Illsince --- so much, everyone. I so appreciate the kind words!!!! I worked really hard on it and hope it can be of value.

    RSS through Google Reader is great too - but as you know, some of us are too sick, don't want the work/bother, the searching and updating or want to preserve their anonomity.

    Take care and thanks again for the feedback and support - it means more than I can say...

    Elisabeth
     
  6. Bob

    Bob

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    Thanku Elisabeth!

    It looks like a massively helpful resource, so I'll bookmark it.
    I've never used Google Reader or RSS feeds (I don't even know what they are), and I'm sure that many others haven't either, so you've created something really helpful.

    Could I make one suggestion? It would be nice if there was a slightly longer bit of text for each of the entries, to get more of an idea about what each one is about.
    Would that be possible?
     
  7. Valentijn

    Valentijn Senior Member

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    Awesome job!
     
  8. Hi Bob & Valentijn,

    Thank you so much for the kind words and great support. I am so lucky to be part of this community. I am so happy that you both like the site.

    I struggle with my relevance with this illness - and part of my goal was to find something to help myself and others...

    So the positive feedback is so happy-making!

    And Bob, I will definately look into your suggestion regarding lengthening the text portion - I love hearing of ways to improve it - and see if its possible...

    Thank again.

    God Bless,

    Elisabeth
     
  9. Bob

    Bob

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    I know what you mean Elisabeth. I suppose that most of us probably do at times. The connections we make on the internet do help a lot don't they!

    You totally deserve the positive feedback, after all of that work!

    Thanks again for what you've created Elizabeth.
     
  10. mellster

    mellster Marco

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    Very cool!
     
  11. shannah

    shannah Senior Member

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    Great job Elisa!

    I see some there that I'm never seen before. I too have been too ill to figure out the RSS feeds and the like so appreciate your efforts and your willingness to share.

    Here's a little thought for you.

    A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.
    ~Christopher Reeve ~
     
  12. Bob- You are truly an Angel - you are soooo encouraging and thoughtful...so grateful for your kindness.

    Mellster - Thanks so much for your positive comments!!!!

    Shannah - I am the same way - RSS is too much for me. When I read your post I thought - what another ME/CFS friend once said to me "Jesus whispers" - well, basically what I mean is that your quote meant a great deal to me personally. I have a necklace from the Christopher Reeves foundation that i use as inspiration - and your quote just moved me to tears - so thank you so much - you must be a very special girl to have such a huge impact on someone...God Bless you!

    Thanks all for all your support - it REALLY means so much to get feedback, inspiration, encouragement and community from others - in the "same boat" so to speak!
    It moves me forward...

    Elisabeth
     
  13. ahimsa

    ahimsa Senior Member

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    Thanks for your work in putting together this blog roll, Elisabeth!

    I'm another ME/CFS patient who knows about RSS but finds it a bit of a hassle, too. I'd much rather browse a list like this. Plus, when new ME/CFS blogs come out then they can be added to your list.

    So, many thanks for your hard work. I'm a former software engineer and I miss my old job very much. I often wish I could find a useful way to contribute that I could handle with my current condition.
     
  14. Hi Ahimsa,

    You are so sweet - thank you. It's a labor of love and it helps me so much. I'm not to fond of my RSS reader either. In addition to blog feeds, I'm adding WPI, research updates and advocacy groups.

    I've added bout 25 or so new feeds - I've gottn quite a few emails from people - to add their site or blog.

    You will find a way to use your substantial talents as a software engineer - an opportunity will just present itself - that's what happened to me...

    Thanks so much for your kind words and support. I love you quote, btw.

    God Bless,

    Elisabeth

    http://mecfsblogroll.blogspot.com/
     
  15. Snow Leopard

    Snow Leopard Hibernating

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  16. Merry

    Merry Senior Member

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    Bookmarked. Good work. Thanks, Elisabeth.
     
  17. Battery Muncher

    Battery Muncher Senior Member

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    This is tremendous. Well done. A real service to the community.
     
  18. Cort

    Cort Phoenix Rising Founder

    Well done I say! I hadn't seen alot of these. :)
     

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