(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 [...]
"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 [...]
"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 [...]
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 [...]
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 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 [...]
(Thanks to Jennie Spotila for her advocacy work and letting Health Rising reprint her blog on NIH funding. Jennie presents some good news - an actual increase in funding at the NIH in 2013 - and for good grants by good investigators. It wasn't a huge increase and we're not nearly where we Read more [...]
The First 'Death Contract'
Some advocates pointed to the IOM contract to produce a definition for Gulf War Illness IOM as what not to do in ME/CFS. With no Gulf War Illness experts sitting on the panel, and with an unsatisfactory previous IOM Gulf War Illness report, fears were high that the Read more [...]