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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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The Guardian Newspaper Open Thread

Discussion in 'General ME/CFS News' started by Koan, Oct 10, 2009.

  1. Koan

    Koan Be the change.

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    Those in the UK, and those who would support them, please check this out...

    http://www.guardian.co.uk/commentis...llcomments=true&commentpage=1&commentposted=1

    It seems the conversation cannot rise above accusations that the ME community behaves badly and refuses to accept a diagnosis of mental illness in order to avoid the associated stigma.

    This is so horribly wrong and unfair. If you are feeling eloquent, please do what you can to address this situation.

    I have a stepchild with a serious mental illness, anorexia nervosa. I posted the following:

    WistM

    10 Oct 09, 8:38pm (1 minute ago)

    The only reason that ME patients resist a diagnosis of depression or other mental illness is that it is inaccurate and treatment for an illness we do not have will not work.

    I have a beautiful child with a serious mental illness. I understand the sensitivity of those who hear only the desperate chorus of: we're not depressed! However, we would happily accept a diagnosis of depression if it led to useful and effective treatment.

    I believe you will find the ME community has a great deal of hard won empathy for people with mental illness. We understand what it is like to be marginalized in the way patients in both communities are. My child does not have an easier time of it than I do.

    All we ask is that the diagnostic protocol and the resultant treatment be scientifically sound. Stop diaguessing us! Follow the science. That's all.

    That should not be too much to ask.
     
  2. Jody

    Jody Senior Member

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    Koan,

    I saw that thread deteriorate in no time flat.

    You wrote a beautiful comment. Said it all very well.

    It is beyond me to post something there, but I was feeling bad about not being able to do it. Yours was everything I could have written, and then some.

    Thank you. :)
     
  3. Finch

    Finch Down With the Sickness

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    Diaguessing! Wonderful! Very nicely done, Koan.
     
  4. Lelvina

    Lelvina ex-Bookworm

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    The thread really HAS gone crazy. The first few comments have been removed though.



    *sigh*
    We just want treatment.
     
  5. Jody

    Jody Senior Member

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    Just went and read most of that thread of comments again. Quit before I finished.

    Try to keep in mind, guys, that the comments there are not some cross section of public opinion. Any yahoo can write a comment.

    On this thread, unfortunately, many yahoos did.

    We do NOT need to concern ourselves with what they think.

    Even if they WERE representative of public opinion (which they are NOT) that really has nothing to do with us.

    Nothing to do with us. They can say what they like. We will continue to live our lives as best we can, like we were before all this came up. We will continue to live our lives, as we wait for the data to be refined into a form that we can do something with.

    It matters only what WE think. Not a bunch of people with no clue who wrote to a newspaper. "click" and they're gone. Yes?
     
  6. Koan

    Koan Be the change.

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    I took a break. I haven't been back yet. It is a glimpse of what those with ME in the UK face. Terrible, dreadful, awful. It was so upsetting.

    I wonder where all the UK activists are. Then, I thought with all the GET they are in no shape to post. It's scandalous.

    :(

    Jody is right. Jody is very soothing! We love Jody!

    :p
     
  7. Jody

    Jody Senior Member

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    The website I write for has space for comments at the end of each article. Anyone can post anything. If it's offensive or spam an editor will remove it.

    For the most part, comments are done properly there. But I have been writing a series on Asperger's Syndrome and one poster in particular was getting ... pugnacious. rude.

    Someone else from the site posted something to calm things down. Later, the same thing happened again. One person railing against Aspies. All done anonymously so it's hard to be sure but it sounded like the same woman back again.

    I refuted her slurs with information and so far that has been that.

    Anybody can post anything in those arenas. We choose who we give air time to in our thoughts. And ... we know who we are.
     
  8. Dreambirdie

    Dreambirdie work in progress

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    thank you for these words

    "We choose who we give air time to in our thoughts. And ... we know who we are."

    Jody!

    This is SO YUMMY, I am going to make a bumper sticker out of it. Seriously. I already typed it up to tape to the wall over my desk.

    Very well put, and empowering. thank you for the reminder. ~Dreambirdie
     
  9. Koan

    Koan Be the change.

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    She's really good, that Yodi!

    She's a wise wee creature.

    :)
     
  10. Jody

    Jody Senior Member

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    Well ... thanks dreambirdie. :)

    Just the stark bare truth though, isn't it? As long as we remember this it will help anchor us against the crap.
     
  11. Jody

    Jody Senior Member

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    LOL

    I'm bettin' I'm bigger than you and that I outweigh you.

    Wee creature. That is cute though. :)
     
  12. Koan

    Koan Be the change.

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    Yodi, We cannot resist appropriate alliteration.

    And, you'll always be a wise wee creature to me!
    Koan
     
  13. Jody

    Jody Senior Member

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    Well, as long as it's appropriate alliteration.

    Wouldn't want it to be some inappropriate kind. :)
     
  14. Koan

    Koan Be the change.

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    Ok, a little rest, a little Jodying and I was ready to go back and look at the Guardian.

    I am happy to report that sanity has overtaken insanity - which was pretty stunning - and many voices of reason can be heard in the land.

    My family left the UK when I was 5. When the Beatles became popular, I was really annoyed with my parents for taking me away from such a cool place and moving me to such a cold one. I would like to take this opportunity to apologize to my parents who actually did know best!

    Thanks all and to all a good night,
    Koan
     
  15. Dreambirdie

    Dreambirdie work in progress

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    I LOVE the stark bare truth! The starker, the better!

    AND YES! CRAP ANCHORS are essential TOOLS for survival.
    ;):);):);):):):):):):)
     
  16. Frickly

    Frickly Senior Member

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    Jody

    Where can I go to see your asperger's stuff?
     
  17. Jody

    Jody Senior Member

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  18. Jody

    Jody Senior Member

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    dreambirdie,

    I think I knew that about you dreambirdie, that you love the stark bare truth. I think it is part of what is helping you to thrive in spite of (or because of?) the spartan-ness of the life that challenges you. :)

    Crap anchors -- I like your turn of a phrase. :D And yes, we could be lost without them, for sure.

    Life has taken on more colour for you lately I've noticed. :) Jazzy lookin' post. :D
     
  19. Tammie

    Tammie Senior Member

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    guardian article

    I posted a comment in the guardian, under the name formermarathoner....what I wrote there got me thinking about stuff I wanted to say for the CFSAC meeting, and I wound up submitting written testimony for that, too......so in a weird way I am kind of glad that I saw the Guardian (even though what I submitted for the CFSAC inc a lot of other stuff, too)

    I wanted to get feedback on what I submitted, but by the time I finished I figured it was too late, and I was so fried that I couldn't even remember what my user name for this site is (and it's my real name!) Yep, I'm just a bit wiped


    I did email it to a few people, though, and got really positive feedback, and re-reading it, I was happy with it, too....hopefully it will help

    I am glad to read here that several others are submitting stuff to the CFSAC, too, and that the comments on the guardian did improve
     
  20. Jody

    Jody Senior Member

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    Tammie,

    Well you may not be able to remember your name but it sounds like that's no wonder after all the work you've done. :D

    Good for you. :)
     

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