• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    Action alert: Bob Miller calls for email campaign to request hearing on Ampligen

    Sasha if you would flag these posts, so I can further address the issues I would appreciate it. I gave my reply, then it was gone, I have found it after 20 mins. But would like to finish my response tomorrow. Thanks Again, Bob Miller
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    Action alert: Bob Miller calls for email campaign to request hearing on Ampligen

    Sasha, this thread has just been brought to my attention, I am happy to address the posts here, but not tonight. I have a doctor appointment in the morning, so sometime in the later day... The "scheme" you are referring to is set by the FDA, it's called the compassionate care cost recovery...
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    ME / CFS P a t i e n t s: C a l l t o A c t !

    Hi SpecialK, There is no follow-up meeting set as of yet and the only thing to be suggested from the ME/CFS - FDA Stakeholder Workshop is to produce a report. We do not need a report, we are asking for a follow-up meeting with the FDA where they would specifically invite pharma and biotech...
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    ME / CFS P a t i e n t s: C a l l t o A c t !

    ME / CFS P a t i e n t s : C a l l t o A c t ! Attention ME/CFS patient community, We the "FDA Team" are asking you to send the message below to the FDA and to listed members of Congress. The recent patient-focused drug development meeting held by the FDA was a start - but...
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    International Awareness Day, May 12th 2013: Worldwide Protests and Events

    Thanks PR for putting these Actions all together for us to see and take part in. Bob Miller
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    Bob Miller wants your ideas for the spring FDA Stakeholders Meeting

    Based on the AZT Model described below, the NIH could do the same with Ampligen's sponsor. For those who are not familiar with the background on the development of AZT, the following letter from Dr. Samuel Broder and others to the New York Times on September 28,1989 may be of interest. In...
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    Thurs Feb 14: Vote for Bob Miller's Obama promise question for today's YouTube White House chat

    Robert Miller ‏@bobmiller42 Tomorrow Pres. #Obama will answer questions posted on the link below. I would ask that #MECFS patients go to the… http://fb.me/CGcWY7zQ use the twitter link above to vote for my question to be answered by Pres. Obama My Facebook Page request: Tomorrow Pres. #Obama...
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    Bob Miller ends hunger strike on a high note - stop mass emailing, new focus

    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...
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    Bob Miller calls for NIH trial for Ampligen: phone & email to support his ongoing hunger strike

    Sasha, Thank you. We are working hard here, but as you can understand my abilities are faltering and my wife is running on empty. I would ask All to call their Reps. and call Assistant Secretary Koh at 202-690-7694 it is a direct line in. Tell Assistant Sec. Koh to ask Sec. of Health Sebelius...
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    Bob Miller on Hunger Strike: Send This 1-Minute Email to Get FDA Approval for Ampligen

    Hi all, Day 6... I am low on energy, but I would like to make a few thing clear: 1. I am not doing this only for the approval of Ampligen, that is only a heavy straw FDA has placed on our illness, I do this for the patients suffering daily, and yes that includes me, but I have children and what...
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    URGENT: ME/CFS Patient "A C T I ON" for Patients, Family and Friends

    The reason I requested for Sen. Casey's office to be removed is due to their office not being Tech. savy enough to create Outlook folders(Really). The hundreds of emails just overwhelmed their office. They have been supportive of the contact with the FDA from early last year when our group...
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    URGENT: Email the FDA about Ampligen now and daily – final decision is imminent

    Everyone, The 750 emails that gave your personal testimonies were amazing. The FDA was not prepared to get such a response. The numbers overwhelmed them to the point that they made specific comments several times, almost as a plea to say, We hope you're not angry with us. Patients did a great...
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    FDA should give CFS patients access to Ampligen! --Online Petition

    Sasha, Thank you for getting this posted. We have over 2000 signatures, but we need more. So everyone please ask friends and family to sign on. I have asked family and friends that belong to church groups and other social groups to ask for their friends and co-workers to sign on. I have also...
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    URGENT: ME/CFS Patient "A C T I ON" for Patients, Family and Friends

    The email list has been altered due to guidance from Senator Casey's office. Please use the updated email list. Thank you, Bob Miller
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    URGENT: ME/CFS Patient "A C T I ON" for Patients, Family and Friends

    You can find a complete version of this at Cort's New site as well. http://www.cortjohnson.org/blog/2013/01/05/urgentmecfs-patient-a-c-t-i-on-for-patients-family-and-friends-to-support-ampligen-approval-at-the-fda/
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    URGENT: ME/CFS Patient "A C T I ON" for Patients, Family and Friends

    Ok, So lots of good questions. Lets start with How the drug works, It is an Immunomodulator. It alters the immune system, if yours is upregulated or downregulated, Ampligen brings the immune system back to a normal or closer to normal balance. Does it help with pain, yes, but remember that this...
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    URGENT: ME/CFS Patient "A C T I ON" for Patients, Family and Friends

    URGENT:ME/CFS Patient "A C T I ON" for Patients, Family and Friends Organizers: Robert Miller Patient/Advocate, Cort Johnson (Health Rising), Billie Moore Patient Advocate and Team Contact: 511bobmiller42@gmail.com OnDecember 20th, ME/CFS patients rose to the Challenge and Sent in 750...
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    Join urgent email action to get FDA approval of Ampligen - by Thurs 6th December'.

    I must tell you All that patients from all over the World are sending ACTION emails and it is extremely tough to read some of them, even as a patient who has dealt with much for 30 years now. Patients Need Treatment. Thank you All for supporting this ACTION. Bob Miller
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    Join urgent email action to get FDA approval of Ampligen - by Thurs 6th December'.

    Thank you All for supporting this ACTION, we can make a huge leap here for our patient population. Thanks Sasha & Kina... Bob Miller
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    Join urgent email action to get FDA approval of Ampligen - by Thurs 6th December'.

    Call to Action for First Drug For ME/CFS: the Ampligen FDA Advisory Hearing URGENT: ME/CFS Patient "A C T I ON"(A Call To Impact Our (me/cfs)Nation For All ME/CFS Patients,Families and Friends (U.S. & Non U.S.)Organizers: Robert Miller and TEAM ______ Contact: 511bobmiller42@gmail.com...
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    Feds Under Review: CFSAC Live Webcast Oct 3rd and 4th

    It is key to have Cort at these CFSAC meetings and reporting to the patient community. Patients have come to count on PR to attend and report on important conferences and meetings. This meeting had some special moments that needed to be captured by a keen eye. Hope Cort will be coming to the...
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    Article: Accelerating Treatments For ME/CFS: A Call to Action for the FDA

    Thank you Justin, But Thank you Justin, But we need emails sent Daily. Please send the same email by clicking on reply to all and erase your email address in the To: Box, DHHS is telling patients to STOP sending emails, which means we are accomplishing our Goal...To get their attention to...
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    Article: Accelerating Treatments For ME/CFS: A Call to Action for the FDA

    Why Mention Ampligen Hi Beaker, As you know Ampligen is no different than any other drug re: Patient response. Just like aspirin, some patients can tolerate it and respond well and some do not. It is the only drug specific for ME/CFS treatment in clinical trials at the FDA. We want the...
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    Article: Accelerating Treatments For ME/CFS: A Call to Action for the FDA

    Cort, Thank you for posting this Action, I would ask those taking part to send the Action Email Daily until May 2nd. Fill their Mail-Boxes before we make contact after the May 2nd, Date. We thank All those taking part in their Recovery. Bob Miller
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    Article: Accelerating Treatments For ME/CFS: A Call to Action for the FDA

    Xandoff Letter to Rep. Sanders Xandoff, Thank you for taking part in this Action. As for Bernie Sanders, just fill out the form and do a copy & paste into the form area. Bernie Sanders is a great Rep. and having you send a contact email would be of great Help...
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    Respond to CBS and Face the Nationfor comments re: chronic fatigue syndrome

    To All MeE/CFS Patients: CBS and Face the Nation require your attention. Please read my request below. We will need to respond to CBS and Face the Nation, No one would say that this politician or that politician was like HIV or AIDS as they would be crushed by that patient population. We will...
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    Nov. 2011 CFSAC Videos Posted

    Jill, The reason that it is the same people is that no one else showed up. If it were not these patients giving up their health and own money to attend, no one would be speaking for the patient community. The DHHS would love to close the book to this illness, no one attending would allow that...
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    Next CFSAC meeting date has been announced for November 8, 2011

    Nielk, That skit was the idea of Lori Chapo Kroger from CFS Solutions of West Michigan. It was simple, but very effective. llewelyn King retaped that skit and it should be on Youtube soon. Here is a Link via youtube with videos from the Demonstration plus one that is an interview...
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    Article: CFSAC PROTEST AGAINST FEDERAL NEGLECT OF ME/CFS ON TAP FOR NOV 8th.

    CFSAC Videos and Interview Just an FYI, I have the Event setting for the Public. I am unclear as to why people cannot access these videos. Here is a Link via youtube with videos from the Demonstration plus one that is an interview by llewelyn King from PBS, He does the White House...
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    Article: CFSAC PROTEST AGAINST FEDERAL NEGLECT OF ME/CFS ON TAP FOR NOV 8th.

    CFSAC Paddywack We will do our best to make this work, we need all your support to energize us. Post on Phoenix Rising, Facebook and on other sites willing to take part. Emails to the contacts listed above, phone calls and faxes as well. We will post video of the protest ASAP, we hope it...