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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Does Chronic Fatigue Syndrome Deserve a Better Name? -- Boston Globe article

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by LaurelB, Jun 3, 2011.

  1. LaurelB

    LaurelB Senior Member

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    I wanted to write very quickly to let you know about a Boston Globe reporter who responded to (and followed up on) my email the other day.

    Deborah Kotz had written an article called "Report deals blow to fatigue sufferers" in regards to the latest XMRV studies.

    Since I've been too sick to keep up with the latest study details, I focused instead on her use of "chronic fatigue" vs "chronic fatigue syndrome." I also sent her a link to my video testimony from 2009. I never expected to get a reply.

    She wrote back, however, and told me my testimony really affected her. She seemed genuinely interested in learning more about the illness.


    She wrote a blog post in response, which is now up and can be found here (you may need to cut and paste):

    Does Chronic Fatigue Syndrome Deserve a Better Name?
    http://www.boston.com/lifestyle/health/blog/dailydose/2011/06/does_chronic_fa.html?camp=misc%3Aon%3Atwit%3Artbutton



    She posts my video and asks questions about the name, and whether we need a better one.

    I want her to know this is an important issue to us, so please vote on the poll if you can. You do not need to register to do so. So far, less than 100 people have voted. It would be great if we could have more votes showing the need for a new name.


    I also want to encourage those of you who are able to respond to write something in the comments section (you do have to register to do so). This is a reporter who seems compassionate and open to learning more, and that's a rare thing these days. It would be nice to give her our support and thank her for taking an interest, while also letting her know that ME/CFS is a 'hot topic" that generates public interest. Informative but polite responses would be wonderful.



    In regard to the comment she makes about my blog, please note she did not mean it in a negative way. Some people thought she was being sarcastic, but she was not. She wrote me personally to say "some folks who commented thought I was somehow criticizing you for writing the blog when I meant it as an expression of amazement that you can summon the strength to keep a blog going in your condition."


    She was very kind to me in all her emails.


    Anyway, if nothing else, please vote!!


    Thanks everyone!



    Laurel
  2. Nielk

    Nielk

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    Laurel,

    Great job you did. It's amazing how much effect you have from your bed.
    Thank you.
    I just voted and left a comment.

    Nielk
  3. IntuneJune

    IntuneJune Senior Member

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    Voting

    Thank you Laurel, I just voted now. June

    PS Took the opportunity to watch your video again, it is powerful.
  4. Nielk

    Nielk

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    Your video is very powerful.
    My daughter (who is well thank God) watched it and was so moved by it. She cried and cried.
    It's from watching your video that she started understanding what I am going through.
  5. WillowJ

    WillowJ Senior Member

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    thank you, Laurel! well done :)

    I voted, and will comment when I have time to register
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    What are you guys talking about voting for, Chase?

    GG

    PS I thought/think that is done?
  7. WillowJ

    WillowJ Senior Member

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    Voting the poll (about whether CFS needs a new name) in this article:

  8. LaurelB

    LaurelB Senior Member

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    Thanks so much everyone. GG -- the voting is for a poll linked above about whether CFS should have a new name. It's part of the article.
  9. illsince1977

    illsince1977 A shadow of my former self

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    Laurel,

    From my bed to yours "Thank you." I voted. I was 23 when I got sick.

    I have seen your testimony before and it is very moving, but of course it was well worth re-viewing. You are very articulate. I am so appreciative we have your voice.
  10. Enid

    Enid Senior Member

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    Caught up a little late but just voted too LauralB - (should have been changed years ago !).
  11. Sing

    Sing Senior Member

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    Good job! The better we can connect with media and individuals who have a public voice, the more we will let society understand our reality more accurately. It is worth it to try to connect.

    I write letters to the editor, which are published, and sometimes I write to journalists. This is in addition to trying to explain a few things, convey a picture, to people I deal with in various ways.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks for doing this, Laurel. Left a comment.
  13. LaurelB

    LaurelB Senior Member

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    Thanks, everyone! :)

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