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CFIDS Association UPDATE | CFS Advisory Committee
http://solvecfs.org/cfids-association-update-cfs-advisory-committee/
http://solvecfs.org/cfids-association-update-cfs-advisory-committee/
On Wednesday, December 11, 2013, the CFSAC met in an abbreviated, online meeting. The CFIDS Association was granted the opportunity to offer an update to all those participating online and via the phone. Below is the full transcript of Carol Head’s comments.
Carol Head | President and CEO | December 11, 2013
My name is Carol Head and I’m the new president and CEO of the CFIDS Association of America. I joined the organization just eight short weeks ago and I thank the many who are assisting me in coming up to speed.
While I am still on the learning curve, I’m optimistic that my previous experience as a CEO, strategy experience, venture philanthropy background, and leadership in national non-profits will bring value to our work to solve ME/CFS.
As a patient myself, I’m deeply gratified by the opportunity to play a role, alongside the many extraordinary, capable individuals who care deeply about this illness. I was sick with ME/CFS the 1980’s and then experienced years of gradual improvement. I know this recovery experience is far too unusual among ME/CFS sufferers. I look forward to working with other patients, patient groups, researchers, government agencies and funders, as we drive forward to eradicate this debilitating illness.
The CFIDS Association’s mission is to make ME/CFS understood, diagnosable and treatable. We do that through research aimed at the early detection, objective diagnosis and effective treatment of ME/CFS, through expanded public and private investment.
The cornerstone of our work is our Research Institute without Walls:
The development of safe and effective treatments for ME/CFS requires uniformly accepted criteria that can be used consistently by researchers, clinicians and patients. One of the several reasons for the slow progress against this illness has been the lack of uniformly-accepted clinical diagnostic criteria.
- Our research work includes: discovering biomarkers, identifying disease subtypes, finding disease-modifying therapies, with the ultimate goal — discovering therapies to eliminate this illness. The Association supports a strong, well-informed research pipeline focused squarely on ME/CFS.
- Our BioBank is a primary resource providing clinical information and biological samples to ME/CFS researchers throughout the world. Our BioBank expands the number of quality investigators who study ME/CFS; it reduces research barriers and therefore speeds progress.
- Additionally, our seed funding to innovative researchers expands total ME/CFS funding. Our grants have historically been amplified 7-fold with follow-on research dollars. Our knowledge leads the way for other funders.
Earlier this fall, after careful consideration, the Association supported the IOM contract to propose diagnostic criteria for ME/CFS. Our support was contingent upon specific criteria being met and the scope of work being closely followed. And last week, we reviewed the slate of proposed committee members; we’re optimistic that this committee will be effective in fulfilling its critically important mandate. We’ve reached this conclusion because we saw:
Our Association believes that the proposed IOM committee, using critical thinking and evidence, coupled with a process which includes patients, can make the disease-defining concepts of ME/CFS widely understood and available. Certainly the Canadian Consensus Criteria has provided an important foundation for clinically defining ME/CFS. And at the same time, the unfortunate fact is that, although very strong, it is has not been uniformly accepted by the U.S. medical community. The credibility and authority of the IOM is important to making ME/CFS widely recognized and diagnosed throughout our nation’s medical community. And that will help patients.
- Sufficient and diverse clinical experience and expertise with ME/CFS.
- Personal patient experience among committee members,
- Technical expertise in developing diagnostic criteria and outcome measures, and
- Expertise in the important dissemination of information.
The success of that committee is of great importance; we’ll stay vigilant, informed and engaged.
In conclusion, we see the IOM committee as an unprecedented opportunity in the history of ME/CFS. And we appreciate healthy, respectful discussion, because so much is at stake. We truly are all in this together as we work on this awful disease.
The road to solving ME/CFS has proven to be long and hard, despite the fact there are so many of us who care deeply.
We each have a role to play – some focus on providing information to patients, some bring information and insights through their blogs, others focus on physician education, and some of us focus on research. None of us can do everything, but together we can become a body strong enough to defeat this illness.
I look forward to finding ways to work together. Thank you.