Fibromyalgia Syndrome (FMS) Political Case Statement
Goal
Encourage NIAMS and NIAID to actively solicit FMS and chronic fatigue syndrome (CFS) research grant proposals through a Program Announcement (or RFA), encourage increased utilization of the FMS/CFS Special Emphasis Panel at NIH, increase the NIH budget for FMS/CFS pain-related research, and improve Institute collaboration.
Syndrome Description
FMS is a chronic, widespeard musculoskeletal pain and fatigue disorder for which the cause is unknown. In addition to the pain and fatigue, other sysmtoms include unrefreshed sleep (likely due to a number of sleep anomalies), irritable bowel, chronic headaches, morning stiffness, cognitive or memory impairments, reduced coordination and decreased endurance. The American College of Rheumatology published the diagnostic criteris for FMS in 1990. This selection criteria was shown to be 88% accurate in its ability to identify patients with this syndrome
(a).
Researchers have noted a significant overlap between FMS and CFS; a majority of patients who meet the diagnostic criteria for FMS also meet the CDC crieteria for CFS
(b,c).
Demographics
Research studies indicate that 2% of the general population are afflicted with FMS; this amounts to roughly five million Americans
(d).
A majority of FMS patients are female, and symptoms may begin in young, school-aged children
(e).
The average person takes five years and spends thousands of dollars in medical bills just to receive this diagnosis--all because few physicians possess the education to diagnose and treat FMS
(f).
One study revealed that prior to diagnosis, 60% of the patioents with FMS underwent costly, unsuccessful sugeries in an attempt to "cut out" their excruciating pain. Only 6% of them had the correct diagnosis before entering the study
(g).
Even with a diagnosis, there is no single therapeutic agent capable of controlling the symptoms of FMS.
Disability Studies
Four reports have shown that FMS can be as disabling as RA (Rheumatoid Arthritis) (h).
Approximately 24% of RA patients are classified as disabled in the United States
(i).
RA is listed in the Social Security Disability law book, FMS is not. Due to the difficulties in gaining recognition for FMS as a disabling illness, the percentage of patients drawing disability payments based on FMS is onl 11.2%
(j).
Yet, nearly 30% of FMS patients claim that they cannot hold down a steady job due to this condition. Even if one uses a conservative estimate of percentage of people disabled by FMS (11.2%), the totally yearly drain on the U.S. economy is $9 billion.
Current Status of FMS-related Research Spending by NIH
The primary research granting institute within NIH is NIAMS (National Institute of Arthritis, Musculoskeletal and Skin diseases). In 1993, they spent $334,000 on FMS research--only 0.2% of their annual budget of $242 million...not much for the third most common rheumatic disease that they represent
(m).
References
a.
Wolfe F., et. al, The ACR Critereia/Classification of FMS,Arthritis & Rheum, March 1990.
b.
Goldenberg D., et al, High Frequency of FMS in Patients with CFS, Arthritis & Rheum, March 1990.
c.
Fukuda, et al.,CFS: A Comprehensive Approach to its Definition and Study,Ann Intern Med, Dec 15 1994.
d.
Wolfe F., et. al, Prevalence and Characteristics of FMS in the General Population,Arthritis & Rheum, Jan 1995.
e.
Getalia A and Buskila D, Pfrevalence of FMS in Children,J Rheumatology20 (2):368-70, 1993.
f.
Goldenberg D. FMS: An Emerging but Controversial Syndrome, JAMA, (p.2782) May 1987.
g.
Wolfe F., et. al, Socioeconomic Impact of FMS,Amer J Med
81(suppl 3A):78-84, 1986.
h.
Silverman, S. and MAson J., Measuring the Functional Impact of FMS,J Musculoskeletal Med9(7):15-24, 1992.
i.
Kramer E., et al, Social /Economic Impact of 4 Musculoskeltal Cond.,Arthritis & Rheum26:901-907, March 1993.
j.
Wolfe F., et. al,Demographic and Work Disability Characteristics of 544 FMS Patients, 1990 Multi-Center Study.
k.
103rd Congress SENATE REPORT #103-143-September, 1993
l.
NIH Guide, Vol. 22, No. 39, 10/93-RFA#AR-94-004
m.
104th Congress HOUSE REPORT #104-209-July, 1995
prepared by: Kristin Thorson /Fibromalgia Network 4/97
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