Written Testimony
FIBROMYALGIA SYNDROME (FMS)
Witness:
Ronald C. Kramis, Ph.D.
Neurophysiologist
Representing:
Fibromyalgia Network
Tucson, AZ 85715
(800) 853-2929 – phone
(520) 290-5550 – fax
www.fmnetnews.com
Date and Time:
January 29, 1998 at 10 a.m.
For fiscal year 1999
Prepared for presentation to the U.S. House of Representatives Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies, Washington, DC, January 29, 1998.
Written and prepared by Kristin Thorson, Fibromyalgia Network.
Mr. Chairman and Members of the Committee, people with fibromyalgia syndrome (FMS) battle diffuse pain from head-to-toe, severe fatigue, unrestful sleep, concentration difficulties, and a myriad of body-wide symptoms. Studies have shown that fibromyalgia afflicts at least 2% of the general population (mostly women in the prime of their life), the symptoms don’t go away, and commonly prescribed therapies are relatively ineffective.
Last year a multi-center study published in the June issue of Journal of Rheumatology revealed that 26% of the fibromyalgia patients surveyed were receiving some form of disability payment. Then in September, two more articles from the multi-center study appeared in Arthritis & Rheumatism. The first stated that the average cost of treating a fibromyalgia patient was $2,274 per year. The second article indicated that despite the variety of treatments employed, patients showed no significant improvement over the seven-year follow up period. The high disabling rate, coupled with the lack of effective therapies, should have triggered NIH to fund more research on this condition (four years of Congressional language have failed to accomplish this). Instead, the National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS) opted last year to fund a cost containment study on fibromyalgia to help out the HMOs, not the patients who suffer so miserably.
Fibromyalgia: Pain Without Injury
There is a major problem of faulty logic in the way this highly disabling condition is being perceived. The pain of fibromyalgia is not usually fazed by modern therapies and when you look at the tissues that hurt, you won’t see any evidence of injury or disease. It’s pain without tissue pathology. Just because you can’t see the pain, some might say that the pain is not real, the usual assumption being that it is “psychological.” That’s the faulty logic often employed. Pain does not require obvious tissue disease to be real and excruciating.
You can understand this phenomenon quickly with a simple test you can do yourself. With your thumb and all four fingers, reach across your chest and firmly squeeze the back top of your shoulder muscle near the base of your neck. Squeeze modestly, but until it hurts … and then squeeze a bit more. Maintain that pressure. Now, consider living with that sensation, not just in your shoulder, but throughout your entire body, day after day, year after year. If you are able to do that, you will have some understanding of the quality of life of an individual who must endure the symptoms of fibromyalgia.
Most people who do this test will experience a deep, diffuse, distressing pain … all in the absence of tissue pathology. This test doesn’t produce any injury to the shoulder, but the pain felt was real. Some people may be surprised at how little pressure was necessary … and for others, a certain amount of discomfort will persist for a few minutes after they have stopped squeezing.
The occurrence of body-wide pain in the absence of tissue damage, as in fibromyalgia, interferes with all aspects of a person’s life and undermines their credibility. The problem is that normal activities can be exhausting, sleep is disturbed, the ability to concentrate is impaired, gastrointestinal function is often abnormal, persistent headaches are common, and the unrelenting pain that no one can see is often detrimental to their personal and professional lives—as it creates a “credibility gap.”
Pain is Determined by the Central Nervous System
Pain is most often perceived as if it were occurring in some peripheral tissue when an injury or disease is present, but the actual sensation of pain clearly does not occur there. The initial information (signal) about damage to tissues comes from the periphery. Yet, the perception of that signal as painful occurs in the central nervous system, or CNS (brain and spinal cord), not in the tissues … even though it feels as if the pain is in those tissues.
If one thinks that the cause of pain must be felt in the tissue to be painful, one can clearly jump to the wrong conclusion that diffuse pain syndromes such as fibromyalgia or low back pain fall into the category of musculoskeletal diseases. Then, when research fails to show signs of injury or disease in the painful tissues, false assumptions are often made that the pain is not real but of psychological origin.
To further advance the science of fibromyalgia syndrome and related chronic pain disorders, it is imperative to look beyond the tissues that hurt—the musculoskeletal structure—and examine the role of the central nervous system. Distortions in the way the central nervous system operates can lead to chronic pain without tissue injury. This usually results in disturbed sleep, severe fatigue, memory/concentration problems, and GI upset—basically all of the symptoms of fibromyalgia.
Relevant Research Findings in Fibromyalgia
People with fibromyalgia have a threefold increase of substance P in their spinal fluid, which among other things, functions as a pain messenger. This finding is not new; it has been confirmed in three different laboratories. Based on the substantial body of literature from neuroscientists, people with such a high level of substance P would be expected to have their entire central nervous system functioning off kilter in a hypersensitized state. Substance P is also known to regulate a multitude of body systems and it is no surprise that individuals with fibromyalgia have a long grocery list of symptoms. More recently, elevations in nerve growth factor have been found in the spinal fluid of people with fibromyalgia and there is compelling scientific evidence to link this abnormality to the high production of substance P and disordered sleep.
Another finding that points to the central nervous system as the source of problems in fibromyalgia includes lower than normal blood flow levels to two major pain processing areas in the brain (the thalamus and caudate nuclei). The principal investigator in this study, Laurence Bradley, Ph.D., says that this pattern of reduced blood flow in the brain resembles that of other chronic pain conditions involving nerve injury and metastatic cancer.
The groundwork for understanding the neurological processes involved in pain (in the absence of tissue injury) has already been done for other chronic pain conditions. This science needs to be applied to the study of fibromyalgia. There are a large number of pain researchers, as well as rheumatologists, who would be eager to apply their knowledge and experience to the study of fibromyalgia if only NIH (both NIAMS and NINDS) would provide the opportunity to do so.
Economic Responsibility
A recent multi-center study showed that 26% of the patients surveyed were receiving some form of disability compensation. The average annual health care cost for a fibromyalgia patient is $2,274. Over 20 billion dollars per year are being spent on fibromyalgia patients because physicians are unable to provide them with therapies that work. Despite this huge financial drain and frustrating attempts by clinicians to treat the pain, the quality of life for a person with fibromyalgia is poor.
Ordinarily, when a medical condition produces a high degree of work-disability and treatments are not effective, rational thinking would lead to more research on the condition. For fibromyalgia, fears over the costs that may be required to help people with this medical problem have overshadowed rational thinking. Last year, NIAMS added a cost-containment study to its list of funded projects. This study is designed to trim $1,200 per year off of the HMO health care costs of tending to each person with fibromyalgia. The needs of patients with fibromyalgia are being forced into second place, behind the needs of cost-cutting HMOs to make a profit.
The cost issue is real, but disregarding individuals with fibromyalgia is not an effective approach. People racked with the unyielding pain and draining fatigue of fibromyalgia will continue to seek medical attention, and in the absence of effective therapies, many will be forced to apply for disability compensation.
Economic responsibility to ensure that adequate research is being done on fibromyalgia rests on the shoulders of this Appropriations Committee and NIH. This Committee has passed language for the past four years, urging NIAMS to step up its research program on fibromyalgia. NIAMS has refused and, instead, has stepped into the cost-containment funding arena—an action that will only escalate patient suffering. Regardless of all of the mishaps that have been occurring at NIH, it is still up to this Committee to enforce economic responsibility in research matters pertaining to health conditions such as fibromyalgia.
Recommendations
NIAMS has traditionally been the home of fibromyalgia research and should step up its efforts in this area (NIAMS-funded research has been stagnant for three years). However, with modern advances in our understanding of chronic pain syndromes, it is appropriate for the neurological Institute (NINDS) to also lend a hand in sponsoring research on fibromyalgia. Here are our recommendations:
- NIAMS should promptly publish a two-year Program Announcement (PA) on fibromyalgia, focusing on pain-related areas. This recommendation was passed last year by both the House and the Senate Committees on Appropriations and NIAMS has yet to follow through with this request. Due to the fact that the majority of researchers currently studying fibromyalgia are rheumatologists, this PA will revive the interest in this condition for those who are willing to make the transition into the neuroscience of pain.
- NINDS should publish an RFA before the end of 1998. Although RFAs often come on the heels of NIH scientific workshops, such a fact-finding event already took place in 1996 and was attended by officials of NINDS. Unlike the above PA, this RFA will generate grant proposals from scientists of all different specialties.
- A Special Emphasis Panel (SEP) was set up a year ago to grade research grant proposals submitted to NIH on fibromyalgia and the related condition, chronic fatigue syndrome. This SEP needs to be open to the inclusion of neurophysiologists and neuroendocrinologists as reviewers on the ad hoc committee, in addition to inviting experts with clinical science background in fibromyalgia (mostly rheumatologists). Also, while NIAMS recognizes the SEP for fibromyalgia, NINDS needs to collaborate with it as well.
- Implement a broad-based, NIH campaign to solicit quality scientists into the field of fibromyalgia.