1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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In Brief: The Adrenal Glands and ME
The second in a new series of ‘In Brief’ articles, where Andrew Gladman provides a helpful insight into the science behind fairly common topics, exploring how they relate to ME/CFS. This time he discusses the adrenal glands and why they can be such a talking point ...
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Bob Miller ends hunger strike on a high note - stop mass emailing, new focus

Discussion in 'Action Alerts and Advocacy' started by Sasha, Feb 9, 2013.

  1. Sasha

    Sasha Fine, thank you

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    http://www.facebook.com/HungerStrikeForAmpligen

    Dear Friends,

    We, as a community, accomplished some very important things during the last few weeks, and so I am ending my hunger strike tonight. I am committed to working with our federal health agencies to bring a stronger focus and program to bear on ME/CFS for all of us. The most important thing patients did in recent days was come together. When we commit to each other in the way we all did these last two weeks, we can make great strides toward treatments and understanding of ME/CFS.

    I believe we have made the following accomplishments:

    1. Dr. Wanda Jones, who I trust and respect, in the Assistant Secretary of Health’s office has engaged with the Secretary of Health over the past days on the need for a serious commitment to address our unmet needs.

    2. Dr. Jones committed to me that the Secretary’s office will be engaged in the FDA Stakeholder Meeting this Spring to make it a successful meeting in promoting the need and path forward toward evidence-based treatments.

    3. For the first time, Secretary Kathleen Sebelius met with a few ME/CFS patients from her universe to understand directly the complexity, unmet need, and frustration of patients.

    4. Senate Majority Leader Harry Reid, my senator, advocated for ME/CFS patients at the highest level this week, and I am deeply grateful. He and Senator Kay Hagan were instrumental in raising the seriousness of patients’ unmet need and elevating the importance of a strong FDA Stakeholders Meeting for our future. I know many other Senators and Congresspeople engaged, and that is important to our future efforts.

    There are two things we need to do now:

    1. Stop doing mass emails to the federal agencies, and

    2. Now turn our efforts toward making a thoughtful contribution to the FDA Stakeholders Meeting, so that we can advance treatments with a smart, strong push from the patient community.

    I want to stress that it is important that patients work with those in our federal health agencies who will work with our community seriously. I always will. Thank everyone you know for helping to make this action successful, and we especially thank Dr. Wanda Jones for her leadership.

    Thank you all for being some of my strength and supporting my family in these challenging days.

    Kindly,
    Robert Miller

    Video to come!
    SOC, Merry, peggy-sue and 1 other person like this.
  2. maryb

    maryb iherb code TAK122

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    I'm so glad something positive has come out of this. Congratulations Bob for achieving this.
    Merry, peggy-sue, Blue and 1 other person like this.
  3. BEG

    BEG Senior Member

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  4. Sasha

    Sasha Fine, thank you

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    BEG likes this.
  5. BobM

    BobM

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    Reno, NV
    First, Thank you All for your support. I am in recovery mode, but wanted to make a response to you All. As always our achievement was because this patient community was United, the only reason I was able to do the HungerStrike was because I had support, support on my wife, my twin 12 yr. old boys and this entire patient community. We now shift gears from getting the attention of the highest levels at our Federal Health agencies to working with those who are willing to work with us. We need to prepare for the upcoming StakeHolders meeting. I would ask everyone to stop all emails and phone calls to the Health agencies as we now want their attention on the StakeHolder meeting and you have all done such a great job of slamming them, they have been unable to do anything else. If needed we can always resume Plan A... Sasha, if you could set up a place for patients to submitt requests and ideas for the StakeHolders meeting , that would be great. I would ask all patients who can, to do some homework on, who and what we should have at the meeting. Such as the expert clinicians in the world of ME/CFS, Pharma companies(we can select a few and begin writing to them to attend) Insurance Co's. and more. We as patients need to be prepared and educated for the best possible meeting. So please take a rest and then begin doing the Homework. Sasha, Thank you for keeping everyone up to speed. And again my humble thank you to the patients for your support.

    Kindly,
    Bob Miller
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  6. Sasha

    Sasha Fine, thank you

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    BEG likes this.
  7. Kati

    Kati Patient in training

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    Thank you Bob! This was a great campaign and it certainly attracted attention to our pleas.
    BEG likes this.
  8. SpecialK82

    SpecialK82 Senior Member

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    Thanks Sasha and BEG for posting, incredibly happy with this outcome and can't wait to push this forward.
    BEG and Sasha like this.

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