Posted by Cort Johnson Dr. Unger’s ‘Job Interview’ by the CFSAC Committee The new CDC CFS chief should be announced fairly soon and Dr. Unger is one of the candidates to lead it. With that fact in mind the Committee at times asked her some fairly pointed questions. A Biological Basis – Really? Dr. Unger stated that ‘there has never
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IACFS/ME President Urges CDC Writing Campaign
Posted by Cort Johnson Dr. Fred Friedberg, President of the IACFS/ME, requests that CFS/ME professionals and patient-oriented activists write letters to the CDC to Dr. Stephan Monroe with copies to Dr. Thomas Frieden regarding the selection of a new Chief of the Chronic Viral Diseases Branch at the CDC. See below for Dr. Friedberg’s request which is posted with his
ContinueInadequate NIH Funding for CFS by Pat Fero, MEPD
Discuss this article on the forums (Pat Fero, the Executive Director of the Wisconsin ME/CFS Association used Freedom of Information Act requests, the online NIH Report Database, minutes from the CFSAC meetings and government to uncover a startling pattern of disregard to CFS by the NIH Some highlights: While the NIH’s Budget doubled over the last decade funding for ME/CFS
ContinueXMRV at the Tipping Point – A Tale of Two Conferences
Posted by Cort Johnson Looking back it was just another week with XMRV; a very intense one for sure, but just another up and down week for the virus that has captured our attention for the last year. Lenny Jason came up to the lunch table at the break and asked what we thought of the presentations. A bit overwhelmed
ContinueThe ‘Time For Action’ Campaign: the Next Phase
Posted by Cort Johnson Discuss this article on the forums From “Time for Action” organizers: Bob Miller, Rivka Solomon, Charlotte von Salis Contact: Bob Miller bobmiller42@msn.com The “Time for Action” campaign was successful. Congratulations to patients, their families and friends! == THE ACTUAL NUMBERS == Over a two-week period, ME/CFS patients, their families and friends sent more than 2,000 emails
ContinueThe ‘E’ Word by Jennifer Spotila
Discuss this article on the forums (Thanks to Jennifer Spotila and the CFIDS Association for allowing us to post this inquiry into a complicated issue in ME/CFS – ‘exercise’ You can find the original copy of the article here.) Exercise is a four-letter word to many people with chronic fatigue syndrome (CFS). Every patient has been told by a doctor,
ContinueThe “A Time For Action” Campaign Is WORKING! Please Call or Fax!
Posted by Cort Johnson Discuss this article on the forums I was talking to Dr. Stuart LeGrice of the National Cancer Institute when all of a sudden he said “I don’t think this “What Have You Done For Me Lately” Campaign is helping. I don’t need to have Dr. Collins call me and ask me what are you doing for
ContinueBusiness as Usual or A Time for Change? The CFSAC Meeting Begins
Posted by Cort Johnson Discuss this article on the forums Federal officials are again sitting down with CFS physicians, researchers and patient advocates to discuss federal policy. This is the third meeting since XMRV burst on the scene and it’s an important one. (See agenda: https://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20101012_agenda.html ) Day One The Science At first glance the highlight of the meeting appears
ContinueCompadres in Scarcity: the Bottom of the Barrel at the NIH
Posted by Cort Johnson As the CFSAC meeting and our continual quest for real funding gets underway it’s important to understand what kind of disorder the NIH believes CFS is. One way to do that is to look at other disorders they’ve decided are also worthy of little funding. Remember being put in math class as you entered Junior High
ContinueWhat’s Next for XMRV?
Posted by Cort Johnson The XMRV International Workshop is over, the Alter paper was finally published….we seem to be in a kind of lull….what is next for XMRV and ME/CFS? Of course anything could happen at any time (and has) but we do have some clues. First, though, let’s take a look at where we are. The XMRV Studies page
ContinueAktion Time! The CFSAC Action Begins
Posted by Cort Johnson (The CFSAC meetings are the only time during the year when ME/CFS advocates sit down and prod federal officials to do the right thing. We all know the statistics – we know the federal government has basically been pretending we don’t exist for decades. The action Bob, Rivka and Charlotte created initiates a new brand of
ContinueLet’s do it again!
Posted by Cort Johnson Discuss this article on the forums American Express is offering $200,000 to five different charities every three months. People will be able to vote for their favorite charities once a week. The next three-month round of voting starts on Jan. 1, 2011, but they are accepting nominations now. To be eligible, a non-profit organization must be
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