RESEARCH NEWS

In 2007 and 2008, many of you may have participated in AFFTER’s on-line Questioners – a Symptom Study.  Three abstracts resulting from this survey were published in the Journal of Arthritis and Rheumatism and were presented at the annual ACR meetings in 2007 and 2008. These abstracts presented can be found here.

In the past decade, the National Institutes of Health (NIH) funded a limited number of grants in fibromyalgia research. The first major grant awards in 1998 totaled over $3 million, spanning various NIH components. The NIH offices involved and the funded studies are below for your reference. Some of these studies are ongoing, and some are completed. The current status of these studies will be added to the site soon.

• NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases) is the traditional home for research of FMS.
   
• NINDS (National Institute of Neurologic Disorders and Strokes) will fund it’s first research project this year.
   
• ORWH (Office of Research on Woman’s Health) is a new branch of NIH that is co-funding several FMS projects.
   
• NIDCR (National Institute of Dental and Craniofacial Research) will get involved in fibromyalgia research.

1) Patient Behavioral Insomnia Therapy for Fibromyalgia:
Funded by NIAMS - $107,321
Jack D. Edinger, PhD. - Duke University Medical Center, Durham, NC

This prospective randomized clinical trial will test whether cognitive behavioral therapy will improve insomnia in patients with fibromyalgia.

2) Autonomic Stress-Reactivity in Fibromyalgia:
Funded by NIAMS - $98,297
Akiko Okifuji, PhD - University of Washington School of Medicine, Seattle

The relationship between stress-reactivity and pain sensitivity in fibromyalgia patients will be examined and compared to that of patients with temporomandibular disorder (who have localized pain) and pain-free people.

3) Employment and Health Status Among Women With Fibromyalgia:
Funded by NIAMS - $264,115
Susan Reisine, PhD - University of Connecticut School of Medicine, Center, Farmington

This project will explore the relationship among paid work, family work, daily stress and psychological health among women with fibromyalgia.

4) Noradrenergic Dysfunction: A Model of Fibromyalgia Pain:
Funded by NIAMS - $107,167
Luc Jasmine, MD, PhD - Georgetown University, Washington DC

The goal of this project is to develop a rat model of fibromyalgia pain by manipulating the release of substance P, a chemical involved in the transmission of pain signals via the nervous system.

5) Chronic Low Back Pain as a Model of Fibromyalgia:
Funded by NIAMS - $258,300
Daniel Clauw, MD - Georgetown Medical Center, Washington DC

This study will examine the relationship of pain sensitivity to clinical outcome and physiological and psychosocial factors in both fibromyalgia and low back pain.

6) Exercise-Induced Changes in HPA Activity in FMS:
Funded by NIAMS - $180,937
Patricia Deuster, PhD, MPH - Henry Jackson Foundation, Rockland, Maryland

This clinical project will attempt to determine whether aerobic exercise benefits patients with fibromyalgia by enhancing the hypothalamic stimulus of pituitary and adrenal gland function.

7) Outcomes in Young Women With Fibromyalgia:
Funded by NIAMS - $95,929
Carol Burckhardt, PhD - Oregon Health Sciences University, Portland

This pilot project will develop a model to plan early intervention strategies that minimize disabilities and maximize health status in young women with fibromyalgia.

8) A controlled Family Study in Patients With Fibromyalgia:
Funded by NIAMS - $212,615
Lesley Arnold, MD - University of Cincinnati, College of Medicine

This study will determine the prevalence of irritable bowel syndrome, migraines, chronic fatigue syndrome and mood disorders in first-degree relatives of patients with fibromyalgia. It will explore whether a common risk factor or pathophysiologic mechanism exists among affected family members. The study will compare the results with those obtained in families of people with rheumatoid arthritis.

9) FMS, Depression, and Myofacial Pain:
Funded by NIDCR - $485,341
Karen Raphael, PhD - University of Medicine and Dentistry of New Jersey, Newark

This project explores the cause and nature of the association of fibromyalgia and temporomandibular disorders with myofacial pain syndrome. Temporomandibular disorders are associated with chronic pain in the temporomandibular (jaw) joint and the muscles of mastication (chewing).

10) Neurotrophins and Animal Model of FMS:
Co-Funded by NIAMS and NINDS - $249,602
Alice Larson, PhD - University of Minnesota, St. Paul

To better understand the neurochemistry behind FMS. An experimental study of molecular mediators involved in stimulating nerve fibers, producing substance P (a pain receptor stimulator) and regulating pain in rats.

11) Combining N-of-1 Trials to Assess FMS Therapies:
Co-Funded by NIAMS and ORWH - $308,928
Deborah Zucker, MD, PhD - New England Medical Center, Boston, MA

This trial of antidepressant therapy in fibromyalgia uses new effectiveness-testing method that combines individual treatment results to obtain population-wide estimates of treatment effectiveness.

12) Mapping of Genes for Fibromyalgia Syndrome:
Funded by NIAMS - $490,223
Jane Olson, PhD - Case Western Reserve University, Cleveland, OH

The primary goal of this study is to identify genes that predispose a person to FMS so that in the long term, the causes and biological mechanisms of this illness can be better understood. This study will carry out a genetic linkage analysis in 120 families with fibromyalgia and a genome-wide scan of 160 families with the disorder. (Dr. Yunus of AFFTER’s Medical Advisory Committee is involved in this study and is looking for participants. See item 13 for details.)

13) Fibromyalgia and TMD in Young Women - a Multiracial Study:
Co-Funded by NIDCR and ORWH - $316,014
Octavia Plesh, DDS - University of California, San Francisco

Study of risk factors associated with TMD (temporomandibular disease) and fibromyalgia in young women participating in the National Heart, Lung and Blood Institute (NHLBI) growth and health study.

14) Neurobiology of chronic muscle pain:
Co-Funded by NIAMS and NINDS - $184,039
Kathleen Sluka, PhD - University of Iowa, College of Medicine, Iowa City

Develop a new model of pain that is both chronic and widespread, then determine if the mechanisms responsible involve the peripheral or Central Nervous System will be identified.

15) Neuroendocrine Alterations in Fibromyalgia and Irritable Bowel Syndrome:
Funded by NIAMS - $263,599
Lin Chang, MD - University of California, Los Angeles

This is a study to identify the mechanism and areas of the brain that mediate responses to visceral and peripheral stimuli in patients with fibromyalgia and irritable bowel syndrome.

 *Data based on:
1) NIH News Release - NIAMS 7/8/99 and
2) Announcement from Dr. Steven Katz

COMMENTARY:
By Shari Ferbert

The total RFA funding of over $3 million sounds like a lot - and it is, compared to past years. To put this in perspective though, you need to compare it to other diseases with the same degree of disability, such as rheumatoid Arthritis (RA) and chronic fatigue syndrome (CFS). Fibromyalgia is twice as prevalent as RA, yet RA receives nine times more funding.

Fibromyalgia is slowly getting some recognition for the disabling disease that it is. In fact, congress has already approved language that says:

“Fibromyalgia is a clinically diagnosed disorder that is poorly understood and difficult to treat. It is a syndrome of debilitation, chronic widespread pain, fatigue, sleep disturbance and other associated disorders. The committee encourages NIAMS to enhance research to further understand this disease through all available mechanisms, as appropriate, including centers for multi-disciplinary research.”

This language means that someone is listening. Now we need to speak out - write to our Congressmen and Senators to remind them that we are here, suffering. Be an advocate: a person who argues for a cause; speak or write in favor of something in another’s behalf. Dr. Stephen Katz invites the public to review their strategic plan on NIAMS Home Page at http://www.nih.gov/niams. He is encouraging us to comment on their plan and a form is provided on the site to do so. Many of you ask “what can I do?”. Well here is a chance to get involved... Educate yourself about what is going on at the National Institutes of Health regarding fibromyalgia funding... Voice your opinions...

Be a patient advocate for fibromyalgia. Remember, there is power in numbers.