30 May 2014
Same Mission | New Name
Solve ME/CFS Initiative
We’re delighted to announce that The CFIDS Association of America has a new name – the Solve ME/CFS Initiative. While our name has changed, our mission steadfastly remains the same: We will make ME/CFS understood, diagnosable and treatable.
Why the change? We recognize the many changes in our organization and our illness space since the organization was first named so long ago in 1987. While the name of our illness continues to be controversial, “ME/CFS” better reflects today’s understanding. And we believe that the word “initiative” (defined as ‘leading action’), expresses our strong commitment to funding ground-breaking research.
Since our organization was founded and named in 1987, we have been the leading organization focused on this illness. Over the years, we’re proud of our remarkable advances regarding this controversial and misunderstood disease.
Four years ago, guided by a desire to move into a new era of scientific progress on ME/CFS, the Association made a strategic decision to heighten its focus on research. Our thinking was simple – the best way to use our precious dollars is toward solving this despicable illness.
- Under the 22-year leadership of Kim McCleary, the organization’s first CEO, the Association played an integral part in developing a policy ruling for the Social Security Administration that recognized CFS as a disabling condition.
- We are the leading private funder of ME/CFS research, directly funding $5.5 million in ground breaking research which has been leveraged into more than $12 million in additional ME/CFS research.
- The organization fought to create and continues to advocate to sustain a dedicated federal advisory committee on ME/CFS research and education (CFSAC).
- We helped expose the misappropriation of $12.9 million in CDC spending, restoring these funds to ME/CFS research.
- We led the first-ever public awareness campaign for ME/CFS, led lobbying events, organized Congressional briefings and regularly deliver testimony at numerous federal hearings and meetings.
Today, led by President and CEO, Carol Head, the organization continues to drive its mission forward – to fund research that will make ME/CFS understood, diagnosable and treatable. How do we do that? By providing more funding for high-quality ME/CFS studies, fostering increased collaboration among ME/CFS researchers and pushing the federal government to make ME/CFS research a higher priority.We are working to leverage our experience, relationships and collective knowledge to propel the ME/CFS research field forward. We are a catalyst for scientific advances that translate into better care for ME/CFS patients. We are accelerating ME/CFS research.
As we continue our efforts to make ME/CFS widely understood, diagnosable, and treatable, it is fitting that we have a name that more accurately reflects who we are: The Solve ME/CFS Initiative. We trust that you will continue this journey with us as we work towards a day when ME/CFS is no more.