by Sasha The internet! Full of lovely free stuff. Until recently, we expected to get our news, expert advice, gossip – pretty much everything on the web – without paying. Some content providers write for fun and don’t seek payment, but others need an income from their work. They get that via click-through advertising or because their content is advertising
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Bob Miller on Hunger Strike: Send This 1-Minute Email to Get FDA Approval for Ampligen
by Sasha Bob Miller has started a hunger strike to push for FDA approval of Ampligen. He and his wife, Courtney Alexander, who are well-known for drawing President Obama’s attention to the plight of people with ME/CFS, urge us not to do the same. Instead, they’d like us to send the email below, alerting key decision-makers to his strike, to
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URGENT: Email the FDA about Ampligen now and daily – final decision is imminent
by Sasha “There comes a point in human suffering when acceptable risk is most appropriately determined for oneself, not by government.” So said Suzy, in an online comment about the failure of the FDA Advisory Committee on Ampligen to vote in a manner that would have got approval for the drug’s use for patients with ME/CFS. But it’s not too
ContinuePhoenix Rising Board Statement Re: Cort Johnson’s Announcement
The Phoenix Rising board members are all extremely sad to learn of Cort Johnson’s decision to leave Phoenix Rising. Cort’s writing, and his vision of a rich and reliable website as a resource for ME/CFS patients, are what attracted all of us to volunteer for Phoenix Rising, and the board is determined to maintain the aims and principles of the
ContinueMake Room on Your Calendar 20 Dec for the Live Webcast of the FDA Ampligen Hearing
Try to leave your calendar open from 8am-5pm EST on the 20th for the FDA’s hearing in Ampligen! Information about the meeting is available at December 20, 2012 Meeting of the Arthritis Drugs Advisory Committee (not mistitled!). The webcast will take place at https://collaboration.fda.gov/aac122012/ and Phoenix Rising will attempt to embed the video locally to make it easier to simultaneously
ContinueURGENT: Dec 6 Deadline to email the FDA’s Ampligen Advisory Committee
by Cort Johnson Call to Action for First Drug For ME/CFS: the Ampligen FDA Advisory Hearing URGENT: ME/CFS Patient “A C T I O N” A Call To Impact Our (me/cfs) Nation For All ME/CFS Patients, Families and Friends (U.S. & Non U.S.) Organizer: Robert Miller, Cort Johnson and TEAM Contact: 511bobmiller42@gmail.com For the first time, people with chronic fatigue
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Press Conference Celebrates One Year Anniversary Support of ABLE Act
by Jody Smith A year ago, on Nov. 15, 2011, the Achieving a Better Life Experience Act (ABLE Act – HR 3423/S 1872) was introduced in Congress. On the one-year anniversary of the introduction of the bill, a press conference was held to build on the continuing support to make changes to the U.S. tax code. Since its introduction last
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Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change
by Jody Smith The FDA held the Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change on November 15, 2012. An invitation had been issued earlier to Phoenix Rising and anyone interested in attending. There was not much mention of ME/CFS until well into the webinar, which surprised me and left me dismayed at first. Instead, speakers talked about
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WPI Back on Track? University Gives WPI Strong Show of Support
Posted by Cort Johnson “We’re excited to be in this partnership with the WPI” Dr. Ken Hunter, University of Nevada Reno The Whittemore-Peterson-Institute ( WPI) has been through a brutal stretch of bad news lately; first their aggressively defended XMRV discovery didn’t work out, then the firing of their lead researcher, Dr. Mikovits, left them under attack from her supporters,
ContinueCDC CFS Program Changing Its Stripes, NIH Lags Behind in 2012
Posted by Cort Johnson After looking at private/non-profit research efforts in 2012 we turn to what the Feds (CDC, NIH, DOD) will be doing…. Centers for Disease Control The CDC approach to ME/CFS under Dr. Unger is changing and for the better. Increased outreach and collaboration have become hallmarks of Dr. Unger’s CFS CDC program. Physician Education Three Continuing Medical
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CAA Studies Target New Areas In ME/CFS
Posted by Cort Johnson The CFIDS Association of America (CAA) released a list $2 million dollars worth of new CAA funded studies last week. There’s something of a ‘gestalt’ to a CAA study; the CAA likes to fund studies that gather enormous amounts of information and then use data mining techniques to ferret out new patterns, they like to ‘smush’ researchers
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CFIDS Association Commits to ‘Open Science’ Movement, Seeks to Bolster CFS Research Field
Posted by Cort Johnson Virtually every ME/CFS research and non-profit is in the same fix – they’re big on ideas and short on money. The CAA, of course, has the same problem… even though, arguably, the needs in ME/CFS are larger than almost any other disorder, next to the big medical non-profits like the Susan G. Komen Foundation for breast cancer,
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