Archive for Advocacy

CFSAC Finally Becoming Relevant: Holds Special P2P Session Tomorrow

"I can put my fingers on 2,000 well-characterized patients. The work could be done, so why haven't we done that yet? Because  - every single one of the things I have just described - not one of them is receiving federal dollars." - Dr. Nancy Klimas - P2P Workshop The Federal Advisory Committee for Read more [...]

P2P Report Calls for Significant Expansion of NIH’s Commitment to ME/CFS But Tightening Needed

“We hope our work has dignified ME/CFS and those affected, while providing expert guidance to the NIH and the broader research community.” - P2P Executive Draft Summary The Pathways to Prevention Program (P2P) is an NIH program begun in 2012 that is tasked with identifying research gaps, methodological Read more [...]

Pathway to Progess Indeed – Federal Report for ME/CFS Surprises: Part I

The goal of the Pathways to Prevention (P2P) program is to... identify research gaps in a  scientific area, identify methodological and scientific weaknesses.., suggest research needs, and move the field forward through an unbiased, evidence-based assessment of a complex public health issue. The National Read more [...]

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 [...]