Archive for Advocacy

Make or Break Time For The ME/FM Action Network

The National ME/FM Action Network -  that's Action Network - is on the cusp of winning  $5,000 (and getting a chance to win $100,000)  in the Aviva Community Fund  Contest - or going home (sigh). Why should you  support the National ME/FM Action Network?  Because they act - and they act effectively. Without Read more [...]

Shake That *^#&! ing Stigma – The Shake the CFS Stigma Challenge Begins

Wouldn't you just love to "Shake the Stigma"? You know the stigma that says chronic fatigue syndrome is just about fatigue (and mild fatigue at that). That everyone has it from time to time. That it's a cover up for malingerers. That it's not "real". Wouldn't you just love for the National Read more [...]

The Dark Side of ME/CFS “Advocacy” Shows It’s Head

It can be rough advocating for ME/CFS but not just from the feds. They may ignore you or try to sidestep you, but at least they don't get personal. Some parts of our "community" aren't so considerate.  Jennie Spotila is used to being in the thicket of it, but what happened over the past week surprised Read more [...]

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 [...]