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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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Article: Taking the Initiative: The Chronic Fatigue Initiative Takes Off

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 6, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. allyann

    allyann Senior Member

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    Thanks Cort for a very informative article. It is great to hear so many new initiatives are being undertaken.

    I am hoping that the gene studies that Bond University are undertaking will shed some light on ME/CFS also.
  3. Gamboa

    Gamboa Senior Member

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    Thanks Cort for this up-lifting article. We need to hear good news these days. I know there is some disagreement concerning the name ( The Chronic Fatigue Initiative- no "syndrome" in the title) but I don't care. I just want to see research, lots of it, into ME/CFS.
  4. madietodd

    madietodd Senior Member

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    Good news! In a form I can understand.......much appreciated.
  5. Sasha

    Sasha Fine, thank you

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    Thanks for this, Cort. With all the distress over the WPI's current situation, this massive injection of $10 million has gone strangely overlooked! And it's not just the money, it's the line-up. Stellar.

    Any plans to write up the IACFS/ME conference? I was really grateful for your Twitter messages but I'd love to see a fuller account of the highlights.

    BTW, I couldn't put my comment on the main article page - I don't know if others are having that problem. It just wouldn't start loading.
  6. floydguy

    floydguy Senior Member

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    As Dr. Mikovits' comments about XRMV being worse than AIDS made you cringe, I get the same reaction when a supposedly scientific group's first move is to name their group a Fatigue Initiative. Really, are they out of their minds? The answers are always along PR lines or marketing purposes. Regardless I find it stunning at the scientific vagueness of such nomenclature.

    That being said there are some people I respect working on the project and do have some interest in particular aspects. Too bad that they couldn't use their scientific training to come up with something more scientifically descriptive such as Neuro-Immune Diseases. Now they will have to overcome the completely un-necessary perception hurtle that they are doing the US equivalent of PACE Trials.
    ixchelkali likes this.
  7. Bob

    Bob

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    Thank you Cort. Very interesting.
    It all sounds very promising and hopeful.
    And it's nice to hear some positive news after all of the recent events.

    I'm also looking forward to reading your report on the Canadian conference.
    There doesn't seem to be any info about it anywhere... I've only read your tweets.
    But I was very intrigued to hear that Nancy Klimas has replicated Jonathan Kerr's gene expression research (unless i've misunderstood that), and that the spinal protein work is going strong and being built upon... And then there was the australian reseracher's work on cytotoxic T-cells which sounds very interesting.
  8. SpecialK82

    SpecialK82 Senior Member

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    Thanks Cort for highlighting several positive things that are going on right now.
    It is so important to keep focused on what we can do, and what is being accomplished.

    I had no idea the Dr. Lipkin was nominated for CFSAC!! How exciting. To have a virologist of his stature interested in sitting on our committee shows his committment to this illness. He is involving himself with ME/CFS in a couple different ways, how can we be anything less than thrilled.

    The researchers working with CFI are looking for real, physical problems with a budget that we finally deserve. Yes, this is good stuff, very good.
    Dolphin likes this.
  9. Sasha

    Sasha Fine, thank you

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    I hadn't known that either and I agree, it's fantastic news. I've just read "Planet of Viruses" by Carl Zimmer, a really fascinating pop-science book about viruses. It's only a short book talking about only the most spectacular stuff but Ian Lipkin's name crops up prominently. It's hard to think of anyone better to go virus-hunting for us.
  10. Cort

    Cort Phoenix Rising Founder

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    If you're looking for more reason for hope the Peterson/Bond University collaboration looks really intriguing - an article on that and what Dr. Peterson is doing will be up soon. :cool:
  11. Cort

    Cort Phoenix Rising Founder

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    Thanks Gamboa - I agree - lets concentrate on what they're doing and what they are doing is very good indeed. Whoever Glenn Hutchins I take my hat off to him. (It was nice meeting you in Ottawa by the way)
  12. Cort

    Cort Phoenix Rising Founder

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    Its the best line up we've ever seen I think - I was really jacked up when I took a look at the different researchers citations...I tried to attach them but couldn't - I think I'll just post them on here.

    Full coverage of a most interesting is coming. Thanks for telling me about the comments problem - I'm working on it.
  13. Cort

    Cort Phoenix Rising Founder

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    You hit it right on Bob, several of Kerr's gene expression findings were validated by Dr. Klimas and the cytotoxic t-cell findings, if validated, could be a huge win for us. Dr. Klimas practically jumped out of her chair at that one. :cool:
  14. Cort

    Cort Phoenix Rising Founder

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    He was nominated by the CFIDS Association - I was really surprised at that. Lots of people have been nominated before and haven't gotten in though. Dr. Peterson was nominated one year by the CAA and never got it. Hopefully Lipkin will get in but even if he doesn't it really speaks to his commitment to CFS....

    If he finds something in his study - everyone will listen - that's the great thing for me.
  15. shannah

    shannah Senior Member

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    Bob,

    Chris Cairns has a bit he posted yesterday.

    http://cfspatientadvocate.blogspot.com/
  16. Bob

    Bob

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  17. shannah

    shannah Senior Member

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    Cort,

    Early in the article you write,

    "Pathogens - The first project, which will look for both novel and known viruses will take advantage of Dr. Ian Lipkins technological expertise in pathogen detection and will be lead by Dr. Mady Hornig. Well designed pathogen studies, of course, have been at the top of both patients and researchers wish lists for years and the CFI will bring a rigor to the field of pathogen detection that we have not seen before."

    Then later you mention

    "The CFI is taking a methodical approach towards this complex illness. Over the next year or so the scientific advisory board will develop the hypotheses they wish to test. Once thats done theyll issue requests for proposals, decide on which ones they wish to fund and then fund them. "

    I'm trying to gain a sense of the timeline here. Does this mean the pathogen studies will be the first project and will commence in about a year's time?
  18. sandralee

    sandralee

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    Thanks so much for this Cort. It is truly fantastic news, and what a line up!

    I do think the title is regrettable though, but as others have said, it is the outcome which should be the main focus.
  19. Sasha

    Sasha Fine, thank you

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    Thanks - looking forward to seeing it. The meeting sounded great from the tweets! And thanks for looking into the technical glitch.
  20. oceanblue

    oceanblue Senior Member

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    Thanks for another fine article, Cort. You're right that as XMRV fades there's nevertheless real hope, especially with the CFI programme. It's the first strategic, comprehensive programme to tackle the illness I've ever seen. It's almost as if someone has sat down and said 'let's stop mucking around, and do this thing properly". The sort of thing the NIH & CDC should perhaps have been doing? In the UK, the MRC produced a pretty good CFS/ME Research Strategy report in 2003 - but nothing ever came of it.

    Hats offf to the Hutchins Family and the CFI - I believe this is the start of something very important.

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