The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Article: Living with one of the last diseases we know nothing about

Discussion in 'General ME/CFS News' started by Snowdrop, Jun 7, 2016.

  1. Snowdrop

    Snowdrop Rebel without a biscuit

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    The Article is very good.
    But. . . some of the comments are atrocious. I didn't read them all.
    But it nets out as: despite the author describing ME as like a hangover and the flu that never leaves and discussing some of the symptoms many people started their comment (even the sympathetic ones) as chronic fatigue I've felt really really tired too, I'm so sorry for those who suffer chronic fatigue.

    One pointed out O'Sullivan has solved the mystery behind chronic fatigue we just won't accept it.

    Maybe it's just me I know they're referring to the illness but all I see is that they understand that we are tired which is really not on point.

    Anyway here's the article:

    http://www.thejournal.ie/readme/me-invisible-illness-2792636-Jun2016/
     
    Justin30, Sean, Scarecrow and 9 others like this.
  2. Bob

    Bob

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    It's a great article! I haven't read any comments yet :nervous:
     
  3. Sasha

    Sasha Fine, thank you

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    Would someone with FB or Twitter mind logging in and providing the link to Ron Davis's work as a comment on that article, and asking people to donate?

    We should be exploiting articles like this all we can in order to help raise funds for him.

    That article has had over 70,000 views!

    Here's the link:

    http://www.openmedicinefoundation.org/the-end-mecfs-project/
     
    Justin30, Jennifer J and mango like this.
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    I was about to leave a comment and had a choice of them logging me in through twitter or facebook (which I'm not on) so when I chose twitter it gave me a window that said logging in through twitter allowed them to: Read tweets from my timeline (OK no big deal) See who I follow and follow new people Update my profile (? maybe this isn't what I think but excuse me I'll update my own profile thanks) and Post tweets for me.

    I decided not to post a comment. But clearly many people don't have the issues I do and I would encourage them to follow through on your request.
     
    cfs6691, Jennifer J and Sasha like this.
  5. Bob

    Bob

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    It's a bit over-the-top that they require all those powers, but it seems to be a standard requirement.
    They won't (hopefully) randomly hijack your Twitter account but the permissions allow them to e.g. "Share This Comment on Facebook or Twitter" when you post a comment.

    BTW, it's possible to revoke all permissions and to revoke access to your account at any time (e.g. immediately after posting a comment), via your Twitter settings.
    For future reference, to revoke permissions, use a PC browser (not the Twitter app), and go to 'settings' and 'apps'.
    Or, simply click here: https://twitter.com/settings/applications
     
    Last edited: Jun 8, 2016
    cfs6691, Woolie, Jennifer J and 2 others like this.
  6. BurnA

    BurnA Senior Member

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    They are actually not that bad - the journal.ie can attract the worst of the worst at times.
    You can click the green thumbs up to promote any comment you like and the red thumb down if you dont like it. Then when people sort by popularity the comments with the most green thumbs go to the top.
     
  7. worldbackwards

    worldbackwards A unique snowflake

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    There's one troll, but in general it looks all good.
     
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  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    Thanks @Bob for that link and the tip. No energy at the moment but I'll keep the way to get around it in mind for future.

    Yes the comments were mostly positive. My issue was with their coming away with the idea still embedded in their mind that we have something they call chronic fatigue. Even after a very good article that pointed out this is not what was being discussed--not chronic fatigue but the disease ME. My writing starting to get a bit loopy so I'm not perhaps very clear. When people see articles like this one --and there are now many others--I'd like them to be able to see beyond the chronic fatigue label I find so much gets lost and we're back to being the people who are tired a lot.
     
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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    OK I went back and reread the comments--- I think I'm overreacting just a tetch. :whistle:
     
  10. Bob

    Bob

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    I know what it's like... If I read two or three initial comments that make my blood boil, it can colour my interpretation of a whole thread. (I still haven't read the comments.)
     
    Jennifer J and Snowdrop like this.
  11. Hilary

    Hilary Senior Member

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    Good article - @Sasha have posted with link - twice, on account of my hamfisted efforts via facebooko_O;)
     
    Sasha, Jennifer J, AndyPR and 2 others like this.
  12. soofke

    soofke

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    made a copy for someone of 'our' chapter, thought I might as well drop it here somewhere, might save someone some cash which now won't be going to miss Sullivan's skiing trip this winter :p

    I usually skip the comments but most are actually nĂ­ce..
     

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