• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Bob Miller ends hunger strike on a high note - stop mass emailing, new focus

Sasha

Fine, thank you
Messages
17,863
Location
UK
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!
 
Messages
49
Location
Reno, NV
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!
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
 

Kati

Patient in training
Messages
5,497
Thank you Bob! This was a great campaign and it certainly attracted attention to our pleas.