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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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Bob & Courtney Miller question President Obama on CFS research/ Reno Town Hall today!

Discussion in 'Action Alerts and Advocacy' started by Carryon, Apr 21, 2011.

  1. Carryon

    Carryon Mike Munoz

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    The Q & A with the Miller's and President Obama... Bob & Courtney - You are truly amazing!

    http://www.enewspf.com/latest-news/...dent-obama-in-a-town-hall-in-reno-nevada.html

    Its a young ladys turn. Right here, in the red. Right in front. You got a microphone coming.

    Q Mr. President, my name is Courtney Miller (ph). And I want to thank you for returning science to the national priority. And I need to ask for some help for my family. My husband has chronic fatigue syndrome, which is an illness very much like multiple sclerosis. And we spend billions of dollars in this country on roughly a million patients for disability and Medicare and lost tax revenue and lost productivity, and we spend less than $6 million for NIH research on this illness. And Im asking you for my husband and my kids, who want their father to be able to go to their baseball games, if theres a way to make improvements on that.

    THE PRESIDENT: Well, let me, first of all, say that you are absolutely right that weve tried to put science back where it belongs. (Applause.) I am a Christian and a person of faith, and I believe that God gave us brains to figure things out -- (applause) -- and that weve got to use science to make life better for our families and our communities and this planet.

    Thats one of the reasons why part of the Recovery Act was reinvesting in National Institute of Health -- NIH -- which does a huge amount of the basic medical research that ends up then creating so many of the scientific advances that are making our lives longer and making our lives better.

    Now, I will confess to you that, although Ive heard of chronic fatigue syndrome, I dont have expertise in it. But based on the story that you told me, what I promise I will do when I get back is I will have the National Institute of Health explain to me what theyre currently doing and start seeing if they can do more on this particular ailment. Okay? (Applause.)


    http://whitehouse.blogs.cnn.com/2011/04/21/obama-invokes-his-faith-and-a-g-in-nevada-town-hall/

    I am a Christian and a person of faith and I believe that God gave us brains to figure things out, Obama said when asked by a woman in the audience what his health policies could do to assist her husband who is suffering from Chronic Fatigue Syndrome. Obama touted a provision in the Recovery Act that funds the National Institutes of Health to deal with such ailments. We've got to use science to make lives better for our families and our communities and this planet, Obama said.

    While he acknowledged he did not know much about her husbands disease, Obama promised I will do when I get back is I will have the National Institute of Health explain to me what they're currently doing and start seeing if they can do more on this particular ailment.
  2. SpecialK82

    SpecialK82 Senior Member

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    Way to go Courtney Miller!! Outstanding :thumbsup:

    she really described the illness well, and made it instantly understandable.

    Now should we hold our breath on Obama looking in to it ----- I donno but at the very least it got national attention
  3. shiso

    shiso Senior Member

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    Way to go indeed - what an encounter!

    Kudos to the Ms. Miller who were ready to present the question in such a concise matter like that. That is the kind of thing we as patients need to work on, I think: given a brief meeting, or 10 minutes, or 10 seconds - being ready to PRESENT the severity and urgency and reality of our situation in a way that packs a punch and gets right to the point. Her question to the President had all the elements: putting her request in context, conveying the severity of ME to a well-known disease like MS, conveying the economic impact to the country, and adding a human element, all in one sound byte. So well done.
  4. WillowJ

    WillowJ Senior Member

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    I agree; she has an excellent "elevator speech" and to have the opportunity to give it to the President of the United States of America and a national and international audience is amazing. Well done!
  5. Sasha

    Sasha Fine, thank you

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    That's amazing! I wonder if it's an opportunity for those senators who have an interest in ME to approach President Obama with more info that the NIH won't give him (such as the level of suffering and extent of underfunding and neglect of patients).

    I seem to remember at least one senator being mentioned as having a particular (family?) interest in ME. Does anyone know who that is/can alert them to the opportunity?
  6. Denise

    Denise Senior Member

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    Courtney put it so well - hitting very significant points succinctly! BRAVA!!

    audio of Courtneys question and Obamas answer can be found here - scroll down for the link to the audio
    http://www.thenevadaspectator.org/


    other print links you have a scroll/search for Courtney's question
    http://www.rgj.com/article/20110421/NEWS/110421028/Update-Obama-ends-talk-Reno?odyssey=nav|head

    http://www.enewspf.com/latest-news/...dent-obama-in-a-town-hall-in-reno-nevada.html

    http://content.usatoday.com/communi...ma-will-root-out-manipulation-of-gas-prices/1

    http://blogs.suntimes.com/sweet/2011/04/_washington--i_drove_by_a.html
  7. markmc20001

    markmc20001 Guest

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    If anybody wants to remind Barack, here is his contact info!

    http://www.whitehouse.gov/contact

    The White House
    1600 Pennsylvania Avenue NW
    Washington, DC 20500

    Comments: 202-456-1111

    FAX: 202-456-2461
  8. SpecialK82

    SpecialK82 Senior Member

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    Very well said shiso, and another element she added was the tone - it was assertive not aggressive, it wasn't angry, it didn't put him on the defensive, and it asked him to care about us. While we have every right to be angry, I think we as a community need to learn lessons on how to communicate our message effectively and not primarily vent anger which tends to push people away.
  9. urbantravels

    urbantravels disjecta membra

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    I agree that the question was an excellent, concise, assertive-not-aggressive way of getting chronic fatigue syndrome out there in front of the President and the press. Well done Courtney and Bob!

    This is very fortuitous timing, with the SoK just having happened earlier this month. I've been disappointed not to see any particular press coverage of the SoK besides a quick hit by Amy Dockser Marcus on the spat over XMRV. Huge conference! Two days! Every major topic in ME/CFS research represented and no psychobabblers (and plenty of evidence presented that refutes the psychobabblers' theory of the disease).

    Yes, I'll be writing a letter to the White House. I hope many of us do, regardless of political orientation. It's a great teachable moment.
  10. Sasha

    Sasha Fine, thank you

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    Nice blog, urban! Hadn't noticed that link in your signature before.
  11. Hope123

    Hope123 Senior Member

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    To people attending CFSAC -- remember to bring this up.

    Also, this was a great opportunity that Ms. Miller took to highlight ME/CFS to the President and with election season coming up, we should try asking the same question of all candidates -- if not at in-person forums, which many of us cannot attend, then via phone, letters, e-mail, Youtube appearances, etc.
  12. Nielk

    Nielk

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    Great idea to write to the President right now as a follow up to show him that it's not just an isolated issue.
    We want to make sure that he does pursue this and look into it.
    The more of us who contact him the greater the impact. He will have to realize it's a national problem affecting many people who are watching what he is going to do about it now that it's an open topic.
  13. urbantravels

    urbantravels disjecta membra

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    Oh, thanks! My two-entry blog. Not exactly off the ground yet, remains to be seen if I can get it going.
  14. Ember

    Ember Senior Member

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    Thanks for the audio link, Denise.

    Courtney Miller was fired up, ready to go! And she managed to frame the question as a yes we can opportunity within the politics of hope. Her question had some great political elementsscience, health care, stewardship, human interest/compassion, families, communities, doing better to overcome obstacles. Nice set-up to get a commitment!

    We definitely need political will and funding, and the politicians need their Joe the Plumbers. (I dream.) In getting behind Courtney, should we be copying Harry Reid?
  15. WillowJ

    WillowJ Senior Member

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    I'm right there with you! :)
  16. Mark

    Mark Acting CEO

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    So exciting! What fantastic work by the Millers!

    So when President Obama contacts the NIH, will he be referred to Dennis Mangan? He would seem the logical person to answer the questions - and there seems every reason to hope that Mangan will say that this is a huge issue that has been off their radar, recently brought to their attention, they have just hosted a great State of the Knowledge workshop with loads of great biomedical researchers and lots of very promising science, and there's good grounds for hoping that great strides can be made if this research is followed up - but that the problem is the pitifully small budget for ME/CFS, which needs to rise from a few million to the hundreds of millions that would be commensurate with the seriousness of the situation and the numbers of people affected.

    Over-optimistic perhaps, but the believable prospect of a sudden big increase in research funding some time this year makes me salivate, because it's the biggest single thing that change our lives: it's probably the only way forward. So much wonderful work from many people over many years comes together in this moment, and it just might turn out to be our great leap forward.

    It seems to me that this is the time for everyone to contact the President. Pages of detail, complex explanations of the history, lots of scientific references and raising of the contentious points are NOT the way forward in this case, IMO: what's needed is large numbers of simple, personal statements mentioning how many years we have been sick, how serious the condition can be, how grossly underfunded ME/CFS research has been, how alienated and let down we feel by society, and how much we are all praying for proper scientific investigation of the illness that has wrecked our lives.

    The Millers have brought ME/CFS to the president's attention: let's help make the most of the opportunity!
  17. Carryon

    Carryon Mike Munoz

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  18. Snow Leopard

    Snow Leopard Senior Member

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    I don't want to be pessimistic, but these are politicians we are talking about. They are known universally for 'talk and no action'.
  19. WillowJ

    WillowJ Senior Member

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    that's why we're following up... :)
  20. sosumi

    sosumi

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