From the Board of Directors of The CFIDS Association of America, Inc.
November 16, 2009
Extraordinary things are happening in the struggle to solve CFS!
New research findings, such as the study on XMRV published in Science on October 8th, have brought increased media attention to this illness and the paltry federal funding for research. Federal agencies, including the National Cancer Institute, are now directly involved in efforts to answer the many questions raised by the XMRV findings. The CFSAC meeting on October 29-30th attracted the largest audience ever, and renewed recommendations for CFS Centers for Excellence and progressive leadership at the CDC’s CFS research program.
The CFIDS Association continues its work to solve CFS on many fronts. The Association is working with several researchers on efforts to replicate the XMRV study. We are partnering with the Biological Informatics Research Network at NIH to expand and improve the research network we launched in January 2009. Our current research grants – funded entirely by private donations – continue to examine the role of multiple body systems in CFS. Our approach is designed to leverage both the network and new research findings so that promising research leads to meaningful, actionable information and benefits for patients.
The Association is pursuing multiple sources of federal research funding through direct applications and aggressive advocacy in Washington, DC. As CEO Kim McCleary testified at last month’s CFSAC meeting, NIH funding for CFS is the same today as in 1993. This cannot continue, and the Association is using the current excitement and interest in CFS as an opportunity to push for more federal funding for CFS research.
Each day brings new developments. The Association will continue to provide accurate and up to date information on our website and our Facebook page.
This is a turning point in the fight against CFS. The Board of Directors and the CFIDS Association stands with the CFS community in this unique moment, and we will continue to work on your behalf until the day that CFS is widely understood, diagnosable, curable and preventable.
Additional information on XMRV