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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The Awful Disease Washington Forgot

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by urbantravels, Sep 21, 2010.

  1. urbantravels

    urbantravels disjecta membra

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    http://whchronicle.com/2010/09/the-awful-disease-washington-forgot/

     
  2. Dreambirdie

    Dreambirdie work in progress

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    Awesome! Thanks for posting this.
     
  3. urbantravels

    urbantravels disjecta membra

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    It was rather good. But I'm not sure why the punchline was ozone therapy, of all things. You'd think the author would have noticed the screaming for clinical trials in the patient community - clinical trials of real treatments.
     
  4. Dreambirdie

    Dreambirdie work in progress

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    Yes, the ozone therapy part was very weird, but the rest was good. I'd like to see something like it on the nightly news.
     
  5. leela

    leela Slow But Hopeful

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    It's another one of those articles making GREAT points, much-needed ones, and then, as if some second person had a hand in it, adds a completely disjointed sentence or two as if out of nowhere. Still, it is a powerful message and I love that it points to the politics and the responsibility of govt agencies to act now.
     
  6. urbantravels

    urbantravels disjecta membra

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    I would suggest some people here could post comments to the article. It's a link I'd like to share more widely, but that last graf about ozone therapy just makes the whole thing weird.
     
  7. ixchelkali

    ixchelkali Senior Member

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    I love this imagery.

    Even though the ozone thing is kinda odd, I think it's a really good article; just the sort of thing we need. I hope lots of people will respond with thanks and positive remarks. Show media editors that we aren't cranky when the articles are informed and supportive.



     
  8. Kati

    Kati Patient in training

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    I would strongly encourage prospective scientists NOT TO study the validity of OZONE therapy but find medical mainstream treatment for the ME/cfs population. After all AIDS patients do not get cured with OZONE therapy.

    Drugs would be really good- you know? Ampligen, ART, and whatever they deem to have potential to get us back on our feet.

    Kati
     
  9. leela

    leela Slow But Hopeful

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    ME is not AIDS

    I would just like to add that mainstream or complementary, I would be most overjoyed to use whatever therapy worked effectively without dreadful side-effects.
    Ozone therapy actually has some wonderful applications, just perhaps not here; though that it seems to have worked for the person in the article is wonderful!!

    Let's not throw the baby out with the bath water, though, and decide that only mainstream medicine can help us. Personally I am guessing it's going to be a combo of anti-virals to control the actual litlle buggers, and complementary practices to encourage our systems to recreate balance after years of compensating for chronic infection.

    Ampligen and many of the ART drugs apparently have some serious side effects or damaging effects to the system, for many people, as yet. And while HIV and XMRV belong to the same overarching family of human retrovirus that exert an effect on the immune system, and they share some similarities in their replication process, AIDS and ME/CFS are very different diseases. In my view this is an important distinction.

    Comparing treatment effectiveness between HIV and XMRV makes sense--comparing the same for AIDS and ME/CFS won't serve us at all.

    But welcome to the board! May we all find the magic that will get us back on our feet, dancing, laughing, and waving buh-bye to life in Couchland!!
    :victory:
     

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