On the morning of September 17, I was excited to participate in the Partners in Patient Health webinar to learn which projects had advanced to the finals of the Sanofi US Collaborate | Activate Innovation Challenge. As a preface to the announcement, webinar host Mike Huckman indicated that one organization had participated in two of the collaborations selected as finalists. He also revealed that 280 organizations had collaborated on over 100 proposals reviewed by a panel of five prestigious judges. As part of the CFIDS Association of America team, those impressive facts made it even more of an honor for me to know that ours was the one organization represented twice, in finalist teams: Registries for All Diseases and Partnering to End Pain.
We first learned about the Challenge through Genetic Alliance, one of our collaborators in the Registries for All Diseases team. As a member of Genetic Alliance and its Registry and BioBank cooperative, we embrace their patient-centered focus, and we recognized that Sanofi US’ emphasis on a patient-centric approach in this Challenge was a perfect fit for several of our initiatives. Once aware of the call for submissions, our scientific director, Dr. Suzanne Vernon, and I considered whether other “dreams” we had might be worthy of submitting to this Challenge. We then put our heads together around the idea for Partnering to End Pain.
Numerous research studies [1,2,3] have documented that individuals with one chronic pain condition often meet criteria for other conditions marked by chronic pain. That motivated us to join with other organizations in 2009 to form the Chronic Pain Research Alliance (CPRA) to collectively advocate for more research on the overlapping nature of chronic pain conditions. Chronic pain affects 25 percent of Americans and costs the nation up to $635 billion each year in medical treatment and lost productivity . Chronic pain doesn’t discriminate by gender but nearly 50 million American women are solely or disproportionately affected by chronic pain conditions including endometriosis, fibromyalgia, CFS, interstitial cystitis, TMJ and vulvodynia . The reasons chronic pain conditions lack effective evidence-based treatments include patient and condition heterogeneity, lack of standardized assessments, and lack of awareness about opportunities to participate in clinical trials.
Our own experience developing the SolveCFS BioBank (through Genetic Alliance’s Registry and BioBank) has shown that researchers can be attracted to an emerging field if they are helped with infrastructure tools. Working with two of our CPRA partners, the TMJ Association and the National Vulvodynia Association, we developed the “Partnering to End Pain” project proposal for the Challenge, designed to provide individuals living with one or more of six chronic pain conditions with a means to contribute standardized information to a shared registry that would become a resource for researchers and a source of information for patients about clinical trials.
Partnering to End Pain recognizes that disease-focused patient communities aren’t discrete entities with established boundaries and fixed constituencies. In reality, the individuals we serve share many common experiences regardless of diagnosis. And, as research shows, the individuals often participate in more than one community. Our solution also reflects the reality that across our lengthening lifespans, we are likely to experience not just one condition, but multiple conditions. These types of projects provide individuals with a way to give meaning to their suffering and a means to participate in efforts aimed at improving their health. Especially for people with conditions that aren’t part of the “medical mainstream” – be they common but under-recognized conditions like CFS, TMJ, or vulvodynia, or rare disorders, this can be an important part of the healing process while we advance discovery of cures.
As we hear often during programs like last week’s Emmy awards, it’s truly an honor to be in the company of the other organizations that have advanced to the finals of this competition. Two of the other finalist teams, 21st Century Brain Trust and FluNearYou, actually touch on two other “dreams” that Suzanne and I have to advance CFS care and research. A central disabling feature of CFS is cognitive dysfunction – people with CFS experience problems with short-term memory and information processing speed in particular. We have recognized the need for an easy, real-time way for people with CFS to measure their cognitive impairment and collect data that could be useful in clinical management of the condition or research studies. We were delighted that the 21st Century Brain Trust recognized this need. While their talents are applied to Alzheimer’s disease, we hope the app will also have utility for people with other cognitively impairing conditions. Similarly, because CFS often begins with an acute flu-like illness, modern surveillance systems like FluNearYou that identify and track cases and outbreaks of flu-like illnesses might be useful for identifying illnesses that represent the chronic consequences of acute infections. CFS is such a condition.
We are thrilled to be among the Collaborate | Activate finalist teams competing to win the grand prize and resources Sanofi US will make available to the winners. It’s a remarkable opportunity to work with their mentors to refine our proposals and to envision the progress that’s possible through the projects the judges have selected to advance in the competition. We’ll all be winners as a result!
- Dansie EJ, Furberg H, Afari N, Buchwald D, Edwards K, Goldberg J, Schur E, Sullivan PF. Conditions comorbid with chronic fatigue in a population-based sample. Psychosomatics 2012; 53:44-50
- Rodriguez MAB, Afari N, Buchwald D and members of the NIDDK Working Group on Urological Chronic Pelvic Pain. Evidence for overlap between urological and nonurological unexplained clinical conditions. Journal of Urology 2009; 182:2123-2131
- Aaron LA, Burke MM, Buchwald D: Overlapping conditions among patients with chronic fatigue syndrome, fibromyalgia, and temporomandibular disorder. Archives of Internal Medicine 2000; 160:221–227
- Institute of Medicine. Relieving pain in America: A blueprint for transforming prevention, care, education and research. 2011. Retrieved from http://iom.edu/Reports/2011/Relieving-Pain-in-America-A-Blueprint-for-Transforming-Prevention-Care-Education-Research.aspx.
- Chronic Pain Research Alliance. Chronic pain in women: Neglect, dismissal and discrimination. 2011. Retrieved from http://www.endwomenspain.org/sites/default/files/WIP%202011%20Report%20FINAL.pdf
About the Author
About the Author: K. Kimberly McCleary has served as the Association’s chief staff executive since 1991. She has participated in dozens of research and patient conferences on CFS and related conditions. She served on the Department of Health and Human Services CFS Coordinating Committee from 1996 until 2001, has testified before Congress numerous times, and has given scores of media interviews about CFS.