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The American Fibromyalgia Syndrome Association
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The American Fibromyalgia Syndrome Association
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When a scientific conference takes place, the coordinators traditionally send out an announcement to researchers asking them to submit abstracts of their most recent and exciting projects. It is "A Call For Abstracts." A similar solicitation is at the back of each medical journal and it is referred to as "A Call For Papers." The practice of querying promising researchers for scientific input is common place as well. Without them, how else would our understanding of thousands of diseases ever advance beyond the starting line?
In December of last year, AFSA mailed out 1,000 information packets on fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS) to scientists across the country who attended the American Pain Society meeting in New Orleans (October '97). In the scientific sense, our mailing was "A Call For Research Grant Proposals." So far, seventy-five (75) have responded with a request for a grant application from AFSA. With the exception of a handful of researchers, we weren't sure how many of these folks were up-to-speed on the latest in FMS/CFS findings. However, based on the speeches and projects presented, hundreds were well-versed in the neuroscience of chronic pain as well as its important link to fatigue and disturbed sleep.
For those of you with FMS/CFS who have lost the war on "credibility" because your symptoms are not detectable under the microscope or by a simple blood test, there is good news. We have uncovered dozens of highly credentialed scientists (experts we didn't know existed) that believe unequivocally that the persistent pain you feel is not a product of your imagination or the outcome of mental problems. They understand that the perception of pain is generated by the central nervous system and a malfunctioning in this region of the body (sight unseen) can produce "real" symptoms of pain, fatigue, disturbed sleep, and more.
AFSA's December mailing was as much "A Call For Grant Proposals" as it was "A Call For Believers." The thought that we may have tapped into a new group of researchers to aid us in the fight to help FMS/CFS patients feel better is tantalizing. For scientists who remain unsure that your symptoms are real, we will continue to wet their appetite with knowledge so that they, too, can enter the contest in "A Call For Believers!"
P.S. - We didn't exclude published researchers in FMS/CFS ... we mailed out 150 solicitations to this group as well. If you know of a researcher interested in FMS/CFS, have them call or fax us a request for a grant application package. Completed applications are due March 13th, so it's not too late to send them an application. The more proposals AFSA receives, the better.
When you are battling symptoms of mind-boggling pain, profound fatigue, jumbled thoughts, a wall-banging headache, pain-gurgling intestines, and you haven't had a decent night's sleep in over a week, it would be natural to feel pushed against a wall. Adding to the reckless impact of fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS), is the affect these conditions have on your career, your marriage and relationships, your social life (if you still have one) and your general sense of well-being. Indeed, FMS and CFS can, at times, make you feel out of control.
Unfortunately, the saga of how you struggle each day to be functional and your efforts to hang onto a sense of accomplishment is not the focus of medical journal editorials these days. The obsession is over a "c" word that doesn't convey compassion, care or concern, but it is the language of the financial world: COST.
In the eyes of the medico-legal system, the cost of diagnosing and treating people with FMS and CFS is what they consider to be out of control. As heartless as it sounds, the insurance and health care industries are attempting to use the paucity of research and treatment trials available on FMS/CFS to their monetary advantage. The logic that they are spewing is: if modern medicine can't effectively relieve the symptoms of FMS/CFS to keep patients employed, then maybe therapies should be curtailed or abandoned altogether.
Some of the proponents of this "weird science" have even proposed what they view as a rational way of approaching patients with FMS/CFS. After confirming the diagnosis, health care providers should educate patients about the diagnosis ... so patients aren't left with the costly and insatiable need to consult another doctor. Then a series of two or three inexpensive therapies should be offered, possibly along with a referral to mental health management (assuming that mind-control is an important adjunct to therapy for conditions in which prescription medicines don't work). If the foregoing fails to make a person with FMS/CFS feel better, then the doctor should at least say they are sorry, but that any further attempt to ease the pain would be futile and too costly. Then the doctor should just call in the next patient. Perhaps as an added touch, the receptionist should wish the patient a nice life when they are handed a check for services not rendered.
The above scenario is no joking matter; it has actually appeared in various forms in two distinguished medical journals: Arthritis & Rheumatism and Journal of Rheumatology. Hang in there though, because most physicians who care for FMS/CFS patients are revolted by this less-than-compassionate approach.
In defense of patients, Muhammad Yunus, M.D., of Peoria, IL, says that until methotrexate was developed ten years ago for rheumatoid arthritis patients, physicians continued to treat this patient group even when therapies were relatively ineffective. Dr. Yunus does not subscribe to the idea of giving up on patients when science can't produce easy solutions. Robert Bennett, M.D., of Portland, OR, commented that the cost issues and the lack of proven therapies have traditionally placed more emphasis on research investments, not the cost-containment approach that seems to be coming down the pipeline for FMS/CFS. The bottom line--and not in dollars and cents--is that twisted logic can't outsmart sound research. That's why AFSA allocates 90% of the contributions it receives toward research. We don't publish a glitzy or expensive newsletter, we don't support staff with impressive titles after their names (AFSA's efforts are all volunteer), and we don't try to be everything to everyone. However, we do our best to fund superior quality research projects that will benefit patients in the long run, and this even includes hunting down the investigators with the expertise needed to oversee the studies.
Remarking on the recent slew of cost-focused editorials in the medical journals and the obvious omission of research recommendations, I. Jon Russell, M.D., Ph.D., of San Antonio, TX, reinforced the feelings of any person with an illness: "I don't think we should stop researching a disease until we find a cure."
Help us fight back. Our research funding deadline is June 1st.
January 29, 1998Neurophysiologist and chronic pain researcher Ronald C. Kramis, Ph.D., of Portland, OR, presented a compelling public witness testimony to the House Appropriations subcommittee which holds the purse strings to the National Institutes of Health (NIH). He explained how it felt to be forced to endure the persistent symptoms of FMS, adding that there remains no effective treatment for FMS and funding for research on this condition is "practically unavailable." Indeed, FMS has a high disabling potential and when you combine this with the high cost of health care, this condition is a twenty-billion-dollar-per-year medical problem that deserves immediate research attention.
"It is a tragedy for the individuals who suffer the unremitting symptoms of fibromyalgia and other chronically painful conditions, that so few clinicians, scientists, and health care administrators understand the biological mechanisms of pathological pain,"
commented Dr. Kramis. Ordinarily, you might think of pathological pain as being generated by disease or injury to the tissues (it shows up on biopsy). That is not the type of painful condition that Dr. Kramis was referring to, although he portrayed it as being every bit as real.
"Two neurologically important substances, both known to be involved in the generation of persistent pain, have recently been shown to be present in pathologically high concentrations in the central nervous system of individuals with fibromyalgia," said Kramis. "This indicates that fibromyalgia is probably a central nervous system disorder rather than a musculoskeletal disorder as originally thought."
Dr. Kramis was referring to the several fold elevation of both substance P and nerve growth factor in the spinal fluid of people with FMS. These neurological substances in the central nervous system aren't just a bit elevated, they are pathologically high--meaning that they can produce disease. In this case, a disease within the central nervous system in the absence of obvious "disease" showing up in the peripheral tissues.
If you are wondering whether substance P is elevated in all painful conditions, Dr. Kramis says the answer is NO. In fact, prior to the hearing he commented that the substantial body of literature from neuroscientists implied that individuals with a threefold increase in substance P would be expected to have their entire central nervous system functioning off kilter in a hypersensitized state. Substance P and nerve growth factor are involved in the generation of pain, as well as regulating a multitude of other body systems that could be involved in the production of severe fatigue, disturbed sleep, gastrointestinal upset and a full array of symptoms commonly experienced by people with FMS and CFS.
At the end of Dr. Kramis' testimony, he was asked by the House subcommittee chairman, Representative John Porter, "if anyone had looked into the mental aspects of the disease or is it clear that fibromyalgia is physiological rather than mental?"
Kramis replied: "In any chronically painful condition you are going to develop some psychologically associated conditions. But, it is very clear that there are physiological mechanisms here which are known from the basic sciences to be related to the persistent pain that is occurring in these individuals ..."
Chairman Porter appeared satisfied and explained why he had asked the question in the first place. He was present at a special hearing on the role of the mind in health and healing in which chronic pain problems, such as low back pain, were described as being related to stress. Understandably, Mr. Porter wondered if the same might be true of fibromyalgia. It was a good day for FMS and chronic pain patients that Chairman Porter skipped his lunch break to ask this pivotal question and that Dr. Kramis, an expert on the neurophysiology of pain, was on hand to provide a scientifically-based answer!
AFSA, Inc., 6380 E. Tanque Verde, Suite D, Tucson, AZ 85715
(520) 733-1570Copyright © 1998 - American Fibromyalgia Syndrome Association, Inc.
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