National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Meeting
March 27, 2014, Bethesda, Maryland
On March 27, 2014, Jan Chambers, President of the National Fibromyalgia & Chronic Pain Association along with Rae Marie Gleason, Medical Education & Research Director for the Association, met in Bethesda, Maryland, at the National Institute of Arthritis and Musculoskeletal and Skin Diseases office with Steven I. Katz, MD, PhD, Director; Robert H. Carter, M.D., Deputy Director; Susana Serrate-Sztein, MD, Director, Division of Skin and Rheumatic Diseases (DSRD); James Witter, MD, PhD, Health Scientist Administrator; William P. Tonkins, Jr, Health Scientist Administrator, DSRD; and Stephanie Burrows, PhD, Science Policy Analyst, Science Policy and Planning Branch.
This meeting was arranged as an opportunity to update the NFMCPA about the status of fibromyalgia (FM) NIH funded research and to offer information to NIAMS about the FM and chronic pain community and some of the bigger challenges being faced by people with FM and chronic pain in general. Dr. Katz assured Jan and Rae that the NIH is funding fibromyalgia specific scientific studies including one on cognitive behavior therapy and another on TENS therapy being done by Leslie Crofford, MD at Vanderbilt University in Tennessee.
Also evident at this meeting was the shift from NIAMS- focused help for fibromyalgia to recognition of the lead now taken by the Pain Consortium, an NIH funded initiative focused on acute pain and chronic pain research, including fibromyalgia. A major shift is that the term centralized pain is getting its share of interest and respect from NIH. Interestingly, modifying the word fibromyalgia to a more general “centralized pain” terminology has helped not only raise scientific credibility of this type of pain but also acceptability of the notion of fibromyalgia as a real medical condition.
Rae raised the issue of problems still associated with diagnosing fibromyalgia for clinicians. She pointed out that having four different diagnostic criteria only confuses family practice physicians who are predominately the doctors who first see and treat these patients. She discussed the fact that there is now the FM/a blood test developed by Dr. Bruce Gillis (EpicGenetics) that is 93% specific in diagnosing fibromyalgia. She informed the group that a second FM/a scientific study was presented at the American College of Rheumatology meeting this past October which has been submitted for publication. Rae drew attention to the fact that the FM/a blood test is also being used in an NIH funded study to differentiate FM patients from control patients.
During the meeting Jan and Rae discussed the issue of inadequate pain treatment for fibromyalgia and chronic pain patients. In that discussion Jan relayed the importance of pain patients’ rights to opioid medications and the current FDA and DEA regulations hindering those rights. She also made a strong argument regarding the importance of more fibromyalgia scientific research funding still needed to discover the cause of fibromyalgia and development of better treatment modalities.
In conclusion Jan and Rae left the meeting concerned about the future of NIH research funding for fibromyalgia. It is obvious that researchers need to be stimulated to submit fibromyalgia research grants to NIH in order to keep science moving forward and not stagnating. The NFMCPA is dedicated to identifying new researchers with innovative ideas in the chronic pain field and encouraging them to submit grants specific to the science of fibromyalgia. This is not a new problem, but it is one that has continued to stymie the advancement of fibromyalgia research for more than twenty years. As always, the NFMCPA stresses the need for more fibromyalgia awareness in order to raise funding for scientific advancement of fibromyalgia.