PART II (continued)

In the early 1900's when medical professionals discussed Fibrositis, there was confusion. Early on in the century, references to Fibrositis were usually confined to a particular part of the body. As time went on the distinction was made that "pain all over the body," refers to Fibromyalgia and pain in specific areas of the body is "Focal Myofascial Pain."

In 1943, Dr. Slocum of the Mayo Clinic wrote an article that stated, "Fibrositis is the most common form of acute and chronic rheumatism". He also pointed out that the British Ministry of Health revealed that out of 2,500 insurance cases of rheumatic diseases, 60% were based on Fibrositis. Just four years before this paper, a Dr. Copeman found that Fibrositis was a fairly common cause of disability in the British Army. Soon after, Doctor and Army Captain Edward Boland and Colonel William Corr collaborated on a paper that stated that Fibrositis was a form of "Psychogenic Rheumatism." The idea that this pain condition was "psychological" rather than "physiological" in nature persisted well into the 1970's and is still accepted by some doctors today. Dr. Bennett, noted the similarity in the situation with Gulf War Syndrome patients and those back in the British Army. Although toxins, infection and trauma are being explored as the causes of their symptoms, the argument that continues to be given a lot of attention is "their inability to cope."

Fortunately, in 1975 a major research finding started to redirect the existing medical opinion that Fibrositis was psychological. Dr. Harvey Moldofsky of Canada, a Psychiatrist, wrote an article for the "Psychosomatic Medicine Journal", called "Musculoskeletal Systems & Non-REM Sleep Disturbances in Patients with Fibrositis". His work showed that patients with Fibrositis had non-restorative sleep. When looking at these patient's EEGs they showed abnormalities in their sleep architecture. When the subjects went into the deeper stages of sleep they had a faster rhythm that proved they were experiencing non-restorative sleep. This break-through finding lead to the publishing of an article by Dr. Moldofsky and Dr. Hugh Smythe in the "Bulletin on the Rheumatic Diseases" called, "Two Contributions to the Understanding of Fibrositis Syndrome". This article was a turning point, which increased the interest of Rheumatologists. Dr. Moldofsky's work on non-restorative sleep and Dr. Smythe's findings that these patients had tender points that could be used to diagnosis the illness, were extraordinary. For the first time ever, the world became aware of physical abnormalities in these patients and a way to diagnosis them was offered.

A few years later, Dr. Muhammad Yunus conducted the first control trial on Fibrositis patients. His results were published in a 1981 paper, "Primary Fibromyalgia (Fibrositis) Clinical Study of 50 Patients with Matched Normal Controls." Concern had been raised about continuing to call this condition "Fibrositis," which implied inflammation, when it was now thought that the condition was not of an inflammatory nature. In Dr. Yunus's paper, the now preferred name of "Fibromyalgia (FM)" was offered. In this historic work, Dr. Yunus found that these patients did have the tender points, predominate fatigue and other syndromes that are now associated with FM, such as IBS and Restless Leg Syndrome. The stage was set and a new direction was established in the research of Fibromyalgia.

PART III (continued)

Based on the earlier works of Drs. Yunus, Moldofsky and Goldenberg the American College of Rheumatology, established the "criteria committee", which included a multi-center study to define how to diagnosis FM. The result was the ACR Criteria for the Diagnosis of Fibromyalgia. The diagnostic criteria included: 1) a historical perspective of wide spread pain in three or more quadrants of the body 2) Tenderness in at least eleven of the eighteen characteristic tender points. Now researchers had a unified thinking about these patients and they could communicate with certainty that they were talking about the same group of people. Although advances had been made, there were still many questions to be answered, including, "Is Fibromyalgia a 'distinct entity' or is it a 'distinct disease'? These questions are yet to be answered. However, with the new criteria, researchers were now able to proceed with epidemiology studies. Dr. Fred Wolfe's studies showed a high prevalence of FM: 3.7% of women in the US are affected and for women over the age of 70, the percentage is even higher, 12%. Dr. Silman of Manchester, England suggested that in the "Pain Continuum", FM was located at the top of the spectrum of the pain scale. What this concept meant was that "…whatever is happening in FM may not be unique to FM, but may occur in other chronic pain conditions, such as back pain, pelvic pain, etc., but not so widespread". Again, new answers just opened the door to more questions.

Today, there is a new theory as to what causes FM … "Disordered Sensory Processing". In 1989 Dr. Vayroy of Norway was the first person who talked about elevated levels of Substance P in the cerebral spinal fluid of FM patients. Substance P, a neurotransmitter, makes it possible for the nerves to connect with each other. In Dr. I. Jon Russell's studies, he found that there is a three fold increase in Substance P in FM patients. Additional studies have also shown that there are other elevated neurotransmitters in FM patients, including four to five times higher levels of nerve growth factor. The results of these clinical studies show an abnormality in the way the body of a FM person "processes pain". Recent work, which involves brain scanning, PET scanning and functional MRI's have shown high levels of brain activity with little stimulus or "amplification of pain stimuli". Dr. Laurance Bradley and Dr. James Mountz's work showed reduced blood flow to the thalamus region of the brain (where pain processing takes place), just like in other chronic pain illnesses. Dr. Bennett pointed out that this finding brings us to the point that, "…what is happening in FM is not unique to FM, but fits into the category of abnormal pain processing".

Other abnormal findings have been illustrated in FM patients. Dr. Leslie Crofford of the University of Michigan, found changes in cortisal production and overactive ACTH to the stimulus called CRH. She also observed lower levels of cortisal in the urine of people with FM. A study that took place in Israel indicated that over a one year period, 22% of individuals who had experienced whiplash developed FM, where only 1.5% of individuals who had a broken leg developed the illness. Findings also reveal that a large percentage of individuals with other inflammatory illnesses get FM. One third of patients with Lupus, also end up with Fibromyalgia. Other illness that now have been associated with FM are Crohn's Disease and Hepatitis C. One must question then, how does FM develop after an injury, as well as after inflammation? Dr. Bennett suggested that the answer might be that "cytokines" are the link between infection and the development of Fibromyalgia.

When trying to determine the cause of an illness, today's researchers often like to focus on the genetic aspect. In 1989, Dr. Mark Pellegrino wrote the first paper on "Familial Occurrence of Primary Fibromyalgi". His work looked at the occurrence of FM in twins. Later, Dr. Baskille of Israel, did a study on familial clustering. When he looked at 117 family members of 30 FM patients, he discovered that an average of 26% of blood relatives had FM. As well as looking at family clusters, researchers are looking at genes in an effort to find the genes that are associated with Fibromyalgia. Dr. Yunus has been funded by the National Institutes of Health to expand his research in this exciting area.

When looking at the history of Fibromyalgia, it is interesting to recognize the growth and prevalence of awareness. In 1989 reporter Jane Brody wrote one of the first articles on FM to be published in the New York Times. In the past year, newspaper, magazine and TV coverage has increased greatly. Stories have appeared in the Washington Post, New York Times and a story on the new work exploring neurosurgery for Chiari Malformation was a front page story in the Wall Street Journal. News segments have aired on Good Morning America, Dateline, and 20/20. When looking at the National Library of Medicine's directory of references, which contain the word Fibromyalgia in the title, you can see that there has been tremendous growth of "awareness."

As Dr. Bennett concluded his presentation, he concurred with previous comments of "hope for the future". "These are exciting times!" declared Dr. Bennett. He went on to point out that throughout the FAME 2000 meeting, many of the exceptional doctors that he had mentioned in his talk will be going into more detail concerning their individual studies and findings. The tone in his voice let us know his feelings of admiration for the Fibromyalgia researchers past and present!

Further notes by Lynne Mattallana: How much can be accomplished at a three-day conference? Based on the amount of time it takes to plan, finance and carry out a gathering like this, three days did not seem like very much time. We found however, when you gather the great minds of Fibromyalgia research and treatment into one place, the wealth of information that is dispensed is incredible! In fact, it produced thirty audiotapes, front and back.
Trying to report on this amount of information is a bit overwhelming, so as we continue to absorb everything that was presented at FAME 2000, we will also continue to share in future issues of FM AWARE, the highlights of these presentations.