1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
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The "Obama Promise" Fulfilled: Obama Requests NIH Elevate Priority of Chronic Fatigue Syndrome

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 17, 2012.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I also sent a slightly different message to the White House at the link that DB provided--just changed a few words to make sure it got counted.

    Sushi
  2. Wally

    Wally Senior Member

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    I believe it is important for the President of the United States to hear thank you for his willingness to probe further into the issues surrounding this illness.

    I also would urge people to take the time to read the letter that President Obama sent to Courtney Miller. If the President does not have a "crowd" standing up for him to hear their voices, then by default the loudest voice in the room may be coming from the NIH Director, Dr. Francis Collins. Do you want Director Collins to speak for you? Or do you want to join in a collective group of voices who support further investigation, evaluation and recommendations for effectively addressing this illness.

    I am not a Facebook user, but perhaps this form of social media could also be used to put together a ground swell of support to show how the public would like to see the U.S. Government address this illness in a more constructive way than currently envisioned. Just an idea if anyone would like to brainstorm ideas. Short, sweet and to the point is often the best way to start an initial ground swell of support.
  3. Cort

    Cort Phoenix Rising Founder

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    I love that this was the first time the Deputy Chief of Staff was EVER asked to followup at the DHHS on a specfic disease. It could be that Pres. Obama really has a thing with 'unfairness'; with groups of people that he feels are being treated unfairly....Hopefully this and other efforts will coalesce into something really significant happening. My hats off to Bob and Courtney for their perserverance; the right person in the right place at the right time can make a big difference. We'll see how it goes.
    Blue and CJB like this.
  4. lnester7

    lnester7 Seven

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    Cort can you/someone interview the Deputy Chief of Staff Spoke person to see how he plans to translate this request into practice???
  5. K2 for Hope

    K2 for Hope ALways Hoping

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    I am over-whelmed that we were actually acknowledged! I cannot express enough gratitude, although we will need to continue to help those advocating for us who are unseen.
  6. laura

    laura Senior Member

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    So incredibly cool!! Thank you to the Millers for fighting for us, and to Cort for keeping us updated.

    Thank you email sent.
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I hope this leads to something postive, probably will not be in time to save his election. Hopefully Romney will keep any good work going, and stop any crap.

    GG

    PS I sent the email along!
  8. WillowJ

    WillowJ Senior Member

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    wow! this is really cool! great work to the Millers and all who have reminded public officials of us, and thanks to the President for listening. Not sure how much teeth a directive like that has, but assigning a specific person to follow up sounds promising! Will send an email :)
  9. dannybex

    dannybex Senior Member

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    I think that's addressed in the letter from the President, although it was kind of hard to read sideways.

    Quite amazing news!
  10. CBS

    CBS Senior Member

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    You may be able to view the letter as it was written by 'right clicking' on the document and selecting 'rotate clockwise' (shift-control-plus).

    And yes, the letter was very cool. Many thanks to the Millers for their ongoing efforts as well as their seizing the moment.
    ixchelkali and Merry like this.
  11. Ember

    Ember Senior Member

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    Many thanks to Courtney and Bob! Llewellyn King's articles, such as “Obamacare's Silent Constituency,” might also have helped. I hope that Mr. King will report on this news. Especially during “political feeding time,” we should be treating President Obama to the kind of response that Mr. King has been getting all along.
  12. JT1024

    JT1024 Senior Member

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    All I can say is I'll believe it when I see it. Of course, the election is close and whoever wins the White House will have to deal with what happens in the Congressional elections.

    Words are just words IMHO. Actions speak louder. If we see true changes and action on the part of the NIH/HHS and the CDC, it will be more than mere words. If we see education of primary care physicians and a coordination of services as have been developed for those with diabetes, cardiac disease, AIDS, ESRD (End Stage Renal Disease), COPD, etc, then progress has been made. If we see changes in disability and insurance coverage, that will also mean something.

    Until those changes are seen, it is merely lip service.
  13. I do agree with Sushi, let's ALL respond!!! Power in numbers. We are finally being heard. Thanks for speaking up Courtney. This is such great news!!!
  14. Hope123

    Hope123 Senior Member

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    I was and continue to be supporter of President Obama. I think his background gives him a sense of compassion and fairness beyond other politicians I am familiar with.

    However, ME/CFS is a bi (or multi)-partisan issue and I believe it would not hurt to convey our concerns to the Romney campaign as well. So my suggestion is, perhaps in another thread, someone can figure out how to do this that is more familiar with Romney or Ryan. I know a bit about Romney and respect his health plan in Mass; with Ryan, I am concern about what he will do with Medicare since a fair percentage of ME/CFS people have Medicare as their primary insurance.

    Also, not a bad idea to cc your local Congressperson on any notes and ask for their support as well for this initiative.
    FInd you senator here: http://www.senate.gov/general/contact_information/senators_cfm.cfm
    Find your rep here: http://www.house.gov/representatives/find/

    Here are a list of physicians who are currently in Congress:
    http://www.patientsactionnetwork.com/physicians-of-the-112th-congress/

    Jim McDermott used to represent the district where I lived and spoke at my school.
    SpecialK82 likes this.
  15. urbantravels

    urbantravels disjecta membra

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    The Deputy Chief of Staff for Policy referred to is a woman - Nancy-Ann DeParle. There may be a way to unearth an email address for her although it doesn't look like the White House is just giving it out:

    http://www.whitehouse.gov/administration/staff/nancy-ann-deparle

    Cort might be able to get her through the White House press office for an interview.
  16. Valentijn

    Valentijn Activity Level: 3

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  17. Marlène

    Marlène Senior Member

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    The first step is made. Don't stop :)
    L'engle likes this.
  18. dannybex

    dannybex Senior Member

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    Thanks Shane. Unfortunately with a Mac, or at least my mac, there's no right or left click. But I can probably download it and put import it into photoshop(?) and then rotate it. :)
  19. dannybex

    dannybex Senior Member

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    While I'm sure a lot of us can relate to your skepticism, actions have already occurred. The promise, the 'words', were spoken a year ago, the action or actions have taken place during the past month or months.

    It's a start, and a lot more 'action', especially at that level, than we've ever seen before.
    penny, L'engle, Lou and 3 others like this.
  20. Snow Leopard

    Snow Leopard Senior Member

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    Agreed, but the main point is this gives us leverage - we can say, the President said... 'And what have you done to meet that?'... To the NIH...
    L'engle likes this.

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