Advocacy Archives

Category: Advocacy

CDC Funding Update: The Importance of Raising Our Voice

August 30, 2015 28 Comments

A month ago, patient advocate Jennifer Spotila discovered that the U.S. Senate was proposing to zero-out the ME/CFS budget at the Centers for Disease Control and Prevention. This discovery launched a wave of emails, letters, and phone calls to key Senate staff from hundreds of people, including representatives of six different ME/CFS organizations. After this coordinated effort, we now

Petition: Get Sweden To Support International ME/CFS Projects

August 27, 2015 No Comments

I want Sweden to contribute to international research for ME / CFS – it will also help you! Sweden has about 40 000 people suffering from ME / CFS. I hope that Sweden can contribute to the Open Medicine Foundation and Lipkin / Hornig study.

Contractor: Help CDC Develop ME/CFS Materials from IOM Report

August 25, 2015 1 Comment

CDC – Collaboration to Develop ME/CFS Educational Materials Based on IOM Report The CDC is requesting quotes from business of all sizes to assist them in the development of ME/CFS educational materials based on the IOM reports. Specifically, they are looking for contractors to assist with professional, administrative, and management support services. From FedBizOpps.com: The

Ron Davis on why his NIH proposal was rejected

August 20, 2015 19 Comments

Ron Davis and Janet Dafoe had to watch as their son Whitney Dafoe deteriorated from an active, world-traveling photographer to bed-bound and at the edge of starvation due to ME/CFS. Davis has built a world-class research team to study ME/CFS, including co-investigators from top institutions including Harvard and Stanford. Despite his team’s track record and expertise, their

NIH awards $766K to Lipkin and Hornig

August 20, 2015 7 Comments

The US National Institutes of Health (NIH) has awarded a total of $1.3 million for ME research to three teams led by Drs. Ian Lipkin and Mady Hornig, Nancy Klimas and Maureen Hanson, respectively. In an unexpected move, the NIH gave $766,000 to Drs. Ian Lipkin and Mady Hornig and their team at the Center

NIH: ME/CFS research applications are low quality

August 19, 2015 23 Comments

When we started working on the 21st Century Cures Act lobbying campaign we quickly learned that NIH officials are continuing to tell people that no one is interested in researching ME/CFS and that the research applications they have received have been poor. At Tuesday’s CFSAC meeting Cheryl Kitt, the Deputy Director of the Center for

Help us get ME in the 21st Century Cures Act

August 17, 2015 11 Comments

#MEAction recently launched as an online platform to help anyone become an advocate. Now we are announcing our own advocacy action: A quick-strike lobbying campaign this August to spur the US Congress to vastly increase research funding for ME/CFS at the National Institutes of Health. We launched this effort to capitalize on the 21st Century

Australia: Discuss Primary Health Care for Chronic Conditions

August 12, 2015 No Comments

Australian survey on ‘Better Outcomes for People with Chronic and Complex Conditions Through Primary Health Care’

Fund Research into CFS/ME and Educate Health Professionals

August 11, 2015 No Comments

I am one of the 250,000 people in the UK suffering with CFS/ME. Please help us to get the help that we so desperately need.

Ampligen price more than doubles, available soon in Europe

August 10, 2015 12 Comments

Ampligen price more than doubling in the US? As many patients who are receiving Ampligen in the US already know, the price of Ampligen is set to dramatically increase. Two patients I spoke with today said the price would more than double from $75 a vial to $200 per bottle. At their current dosages, that would raise the