Archive for Advocacy

A New Name For Chronic Fatigue Syndrome? The Community Weighs In

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 [...]

IOM Swings For the Fences: Proposes New Name and Definition for Chronic Fatigue Syndrome

"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 [...]

Congressional Hearing To Remove Roadblocks to Ampligen Approval at FDA

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 [...]

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 [...]