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 [...]
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 [...]
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 [...]
“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 [...]
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 [...]
(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 [...]