Archive for Advocacy

Controversial Report Provides Chronic Fatigue Syndrome Advocates Powerful Weapon For Change

“Because of limitations in the evidence base, we did not have high confidence in any of the findings from this review.” The reports from ME/CFS advocates are in. The AHRQ report is “appallingly bad”, “scientifically indefensible and irresponsible”, and is “fundamentally and irredeemably Read more [...]

“End ME/CFS” Mega Chronic Fatigue Syndrome Project Begins

Now this is exciting. The Open Medicine Foundation (OMF) has announced it has created and is raising funds for a huge "End ME/CFS" project.  They're looking for five million dollars a year to  fund it -- about double the NIH's current annual spending on all ME/CFS research. That's a really ambitious Read more [...]

Call for Congressional Hearing on Treatment For Chronic Fatigue Syndrome (ME/CFS)

(Yesterday we highlighted a Reuter's article that proposed that the lack of funding and drug development for ME/CFS constituted a 'market failure'. Today we hit back on this market failure with a call for a congressional hearing that asks why the FDA is not, in the face of strong Congressional pressure Read more [...]

Market Failure! Reuters Journalist Asks Why Chronic Fatigue Syndrome Is Ignored

"Sometimes, unhelpful ideologies get in the way" Edward Hadas, an economic journalist, recently took on the question of why Chronic Fatigue Syndrome (ME/CFS) is funded so poorly in a Reuters piece "Market Failure Can Be A Sign of Fatigue" . He notes that while Chronic Fatigue Syndrome is a mystery Read more [...]

Accelerating ME/CFS Change With the #MEAction Network

"Because it's time we became the strength of our numbers" One thing that's missing in ME/CFS advocacy are easy and effective  ways to do it.  We lack the tools other advocacy groups use to communicate, get the word out quickly and easily, and produce change. It looks like Jen Brea of  the Read more [...]

NIH – Get Your Act Together! Advocates Press Director Collins to Cancel P2P Workshop

P2P workshops are designed for topics that “are generally not controversial”  - P2P website Mary Dimmock and Jennie Spotila have collaborated on a call to request Director Francis Collins to cancel the P2P Workshop.  Mary's background is in the pharmaceutical industry, Jennie was a lawyer. Throw Read more [...]

Madame Secretary Meet the ME/CFS Community: The $50 Million Dollar Research Funding Campaign Pt. II

ME/CFS ACTION: A new Secretary of Health is about to be confirmed by the U.S. Senate. Sylvia Mathews Burwell is currently the Director of White House Office on Management and Budget, and she is known as effective and numbers oriented. She is also closer to President Obama than Secretary Sebelius. Let's Read more [...]

The Fifty Million Dollar ME/CFS Research Funding Push – Pt. I

"The problem is that you need a champion in Congress who's going to go ahead and say, I want money allocated for chronic fatigue syndrome research.  That’s the way it gets done.  That’s the way HIV got done, that’s the way breast cancer got done, and so on.  It has to be somebody who has Read more [...]