About 4500 people saw the survey and about 550 took it. The survey consisted of a ranking mechanism that allowed the participants to rank their favorite names from first to last. The survey tool from Gravity Forms then produced an aggregate score.
Survey Round I
ME was the clear winner with Ramsey's Read more [...]
"It is clear from the evidence compiled by the committee that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients." IOM Report
The title of the report "Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining Read more [...]
In talking with experts and reviewing the drugs that have been approved over the past couple of years, we believe it is our right to ask Congress to hold a hearing to review the denial of Ampligen. Below is a draft letter along with the email addresses where the letter should be sent. It is clear Read more [...]
"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 [...]
“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 [...]
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 [...]
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 [...]