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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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The Lights: Sufferers of chronic fatigue, fibromyalgia have hope in new diagnostic tool

Discussion in 'General ME/CFS News' started by Firestormm, May 17, 2014.

  1. Firestormm

    Firestormm

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    Three page article...
     
    Last edited: May 17, 2014
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  2. Firestormm

    Firestormm

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  3. Firestormm

    Firestormm

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    [​IMG]

    Dr. Lucinda Bateman [ROFL - Man's hand!! :)] points to a graph that shows gene expression changes of a person with chronic fatigue syndrome following an exercise stresser, right, as compared to a person without the condition at left, in Dr. Bateman's office in Salt Lake City, Thursday, May 15, 2014.
     
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  4. alex3619

    alex3619 Senior Member

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    I was wondering what happened to the Light's research. I can only hope them success. A few groups are now working on a diagnostic blood test. One or more may succeed. I hope so.
     
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  5. Sasha

    Sasha Fine, thank you

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    Nice find @Firestormm - and yes, what's up with Dr Lucinda's hand! :eek:
     
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  6. Simon

    Simon

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    Thannks, @Firestormm.
    Really looking forward to seeing the paper on this large replication of their original study.

    One issue with the original study (n=49) was that the 'moderate' exercise level was set at 70% of maximum heart rate, which turned out to be very hard exercise for a substantial number number of severely-affected patients. This meant that they were comparing gene expression profiles for moderate exercise in controls vs moderate-to-very hard exercise for patients. The authors did address this by comparing a sub-group (n=27) matched for effort levels and still found different levels of gene expression, though the results were less impressive than for the full sample. The much larger sample in the new study would give much more robust results, even for a sub-group matched on exercise effort.

    It's great to see researchers get funding for important replication work like this, and great that the results appear to have held up. I also particularly like that they use a moderate, rather than maximal exercise test since it relates better to real-world conditions (the reason the authors chose this approach). Presumably the test could be amended so that it really is moderate for severely-affected patients too.
     
    Last edited: May 17, 2014
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  7. SOC

    SOC

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    Please click through to the article so it has a high hit count. We need the newspaper to understand there is interest in this topic and do more decent articles to raise public awareness.
     
  8. Sasha

    Sasha Fine, thank you

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    Done! Good idea.
     
  9. shannah

    shannah Senior Member

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    From Page 3

    On Saturday, during a meeting of the Organization for Fatigue and Fibromyalgia Education and Research, a nonprofit organization Bateman founded, she plans to announce the beginning of a fundraising campaign to build a dedicated clinic for patients who suffer with the illnesses. She said more than $1 million will be needed to hire and train physicians and develop the necessary care base, but that the timing is right.
     
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  10. SOC

    SOC

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    While I like that she's hoping to build a dedicated clinic -- we need many more -- I wonder where these docs and researchers think the money is going to come from. They're already bleeding us dry with their requests for donations. That well is going to dry up soon. We have GOT to find a way to get some big money donors involved.
     
    Little Bluestem, Valentijn and *GG* like this.
  11. Sasha

    Sasha Fine, thank you

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    I hope we'll start to see big money donors come on board as some of the bigger fundraising drives - such as the Lipkin one - start hitting the mainstream media more widely and the two big documentaries (Jen Brea's and Ryan Prior's) start showing.

    But I disagree that we're being 'bled dry' as a community. I think that these appeals can help expand the donation base. There are 1 million PWME in the US - and $1m is peanuts in that context. The MEandYou campaign raised nearly $0.5m from mainly Norwegian donors in a country with only 5 million people. It's a question of spreading the word as much as donating.

    Hugely important to spread the word! :)
     
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  12. Bob

    Bob

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    I can't remember the exact details, but Jen Brea raised loads of money in a single month, for a film. So I think money is out there to fund research and clinics. It's just a case of reaching a wide audience.
     
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  13. Sasha

    Sasha Fine, thank you

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    $213,000 in 31 days! And look at these others (from the Microbe Discovery Project site homepage):

    In the past year our ME/CFS community has shown that it can rapidly raise hundreds of thousands of dollars for specific projects. After patients and supporters in Norway – with a population sixty times smaller than that of the US – raised $430,000 in 90 days for a clinical trial of Rituximab, a slew of US campaigns began crowdfunding and reached or exceeded their targets at astonishing speeds: $213,000 in 31 days for the documentary film Canary in a Coal Mine; $18,000 in 35 days for the documentary The Blue Ribbon; and $150,000 in 75 days for an Open Medicine Foundation study of Vitamin B12.​

    http://www.microbediscovery.org/

    And particularly in the US, these sums are being raised with most PWME not knowing there's any fundraising going on! If we can get the word out and create a culture of donating, the sky's the limit.
     
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  14. Ruthie24

    Ruthie24 Senior Member

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    Read thru the article and shared it on facebook. The more awareness out there, the better.
     
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  15. A.B.

    A.B. Senior Member

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    It's refreshing to see such common sense, rather than portrayal of a symptom as the illness itself (I'm looking at you, psychologists/psychiatrists).
     
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  16. SOnset

    SOnset

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    By coincidence, I put up a video about the Lights 2009 study on gene expression in CFS just one day before this article was published.

     
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  17. alex3619

    alex3619 Senior Member

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    The huge difference is when the Lights talk about fatigue its about specific and documented biochemical mechanisms. Its not a "feeling' and nothing else.
     
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  18. Simon

    Simon

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    Whoa, your video rocks! Honestly, that is a terrific visual explanation of a complicated study, basically using the researchers original graphs as far as I can tell. You obviously know what you are doing.

    Thank you.
     
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  19. Sasha

    Sasha Fine, thank you

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    That's an absolutely superb video, @SOnset!

    I wonder, with videos like this, whether the last frame should be telling viewers what to do next. We need action as well as awareness. We desperately need people to donate to biomedical research.

    Just something I wanted to raise - not a criticism! Just something to think about.
     
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