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 permission. (Thanks to Pat Sonnett of the Miami CFS Support Group)
Open Letter to CFS/ME Professionals:
Several weeks ago, the Centers for Disease Control issued a job announcement for Chief, Chronic Viral Diseases Branch. This includes primary responsibility for the direction and substance of the CFS research program.… Read More
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Written by Kelvin Lord
There was a prison breakout in the USA this past weekend of historic proportion. And like most escapes that require patience and tenacity, this one took 10 long months of preparation. But when the time came, the escapee acted almost without thinking, and ran with freedom in his eyes, and hope burning in his heart. No, this isn’t the story of a convicted felon escaping from the County jail. Although it did have to do with a guy escaping from his incarcerated state.
This is the story of me, doing something absolutely insane this past weekend.… Read More
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 permission. (Thanks to Pat Sonnett of the Miami CFIDS Support Group)
Open Letter to CFS/ME Professionals:
Several weeks ago, the Centers for Disease Control issued a job announcement for Chief, Chronic Viral Diseases Branch. This includes primary responsibility for the direction and substance of the CFS research program.… Read More
Discuss this article on the forums
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 been any doubt in the CDC program that there is a biological basic for this illness” which has (or at least had) it’s basis in fact. Even with the sexual abuse studies the CDC tied childhood abuse to cortisol problems (and a substantial portion of the study participants had neither) but it’s also true that the CDC has changed in the past couple of years.… Read More
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(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 remains at 1992 levels. That’s bad! But it’s actually even worse than that because a dollar is worth about half as much as it was 1992; in real terms the NIH is spending half as much now on ME/CFS as it did almost twenty years ago.
… Read More
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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 to NIH Director Collins and NIAID Director Fauci. Also, a large but uncountable number of calls were made and faxes were sent. Patients used their wonderful creativity and sent everything from our suggested one-liner to hand-drawn cartoons to poignant medical histories.
== PROOF THAT THE CAMPAIGN ACHIEVED ITS GOAL ==
The CFSAC meeting offered us proof that our campaign reached its goal of getting ME/CFS on the radar screen at the highest levels of the NIH.… Read More
