EVIDENCE MOUNTS THAT TMJ IS ONE OF A NUMBER OF ALLIED CONDITIONS

THE RELATIONSHIP BETWEEN TMJ AND OTHER CHRONIC PAIN SYNDROMES

JJAMD TO GIVE PRESENTATION

"JAW JOINTS-TMJ AWARENESS MONTH"®

HEALTHTOUCH® & -JJAMD RELATIONSFHP CONTINUES TO GROW

THE CONFLICT BETWEEN RESEARCH AND REPORTING IMIPLICATIONS FOR TMJ PATIENTS

LATE DEVELOPMENTS AS WE GO TO PRESS….

When JJAMD was founded in 1982, there was considerable discussion concerning the name of the organization. The Founders decided to use the words "allied disorders" in the title because they were [prophetically] convinced that TMJ was but one of a number of disorders that were somehow "allied" or related. In the early 1980's nothing was being written or even researched as to these relationships. We had, however, a visceral feeling that this "mysterious malady," known as "TMJ" represented a condition that was either a part of a greater disorder, or that there were other medical conditions that were a component of TMJ. It was not until very recently that a plethora of evidence from the scientific community has started to appear. This has complemented the abundant evidence provided by the patient community itself, who have been reporting allied or related conditions to JJAMD for many years. Following are a number of examples that address these relationships.

Central Nervous System Dysregulation

JJAMD's Founders were invited to a special program for patients and professionals as guests of the Fibromyalgia Association of Greater Washington, Inc., an active, effective, participatory patient organization. The principle speaker was Dr. Daniel Clauw, M.D. who is Chief of Rheumatology at the Georgetown Medical Center in Washington. The program read: "Dr. Clauw's expertise spans the fields of fibromyalgia syndrome, chronic fatigue syndrome, and Persian Gulf syndrome. Always aware of the interdisciplinary nature of these conditions, he has worked closely with specialists in other medical fields engaging in cutting-edge research. Among his current projects is the study of central nervous system dysregulation in FMS, DFS, and related disorders. He was an early proponent of the view that fibromyalgia is more than just a musculoskeletal disease and that the syndrome and its associated disorders have a common centrally mediated cause." Dr. Clauw generously delivered an illuminating 3-hour lecture on the subject matter and answered numerous questions from the large audience.

Subsequently, JJAMD's Founders met with Dr. Clauw in his Georgetown University office. He explained that he has actually participated in a TMJ research study with the National Institute of Dental Research. He sees a relationship among these various disorders. We asked Dr. Clauw to prepare an article for JJAMD TMJ UPDATE, which appears in this issue.

"DSS" - Dysregulation Spectrum Syndrome -

Muhammad Yunus, M.D. was the other speaker at the Washington Fibromyalgia Conference. His lecture was titled "Fibromyalgia & Other Overlapping Syndromes: The Concept of Dysregulation Spectrum Syndrome." The program read "Ever since his landmark publication of the first controlled clinical study on FMS in 1981, Dr. Yunus has remained on the cutting edge of Fibromyalgia research, concentrating on such areas neuroendocrine findings, laboratory and therapeutic aspects, muscle biopsy, psychological status, and genetics. He will discuss his groundbreaking new work on Dysregulation Spectrum Syndrome [DDS], an umbrella term for many associated conditions that share common clinical characteristics as well as similar biophysiological mechanisms. DSS members include: fibromyalgia syndrome, chronic fatigue syndrome, irritable bowel syndrome, tension and migraine headaches, primary dysmenorrhea, periodic limb movement disorder, restless legs syndrome, TMJ, and myofascial pain syndrome." Dr. Yunus illustrates these relationships by a large circle showing DSS, and small circles penetrating the perimeter of the large circle, each with the initials of the disorders mentioned above. He covered some of his recently published research showing that the disorders in his DSS theory, as well as others, have similar clinical characteristics and similar biophysiological mechanisms such as to make it obvious that there is a distinct relationship among them. He feels that medical scientists will be well advised to consider these relationships in their studies of any one -of the disorders.

Writing in the Journal of the American Dental Association, Dr. Harold Slavkin reported on "Conditions Associated with FMS" in his article entitled "Chronic Disabling Diseases and Disorders: The Challenges of Fibromyalgia." "A number of conditions are regularly reported to be associated with FMS or to mimic its symptoms. These include, among others, rheumatoid arthritis, hypothyroidism, cervical and low-back degenerative disease, Lyme disease, chronic fatigue syndrome, sleep disorders, depression and even HIV infections. Two other conditions that are of particular interest to those of us in dentistry include Sjogren's Syndrome [SS] and TMD [i.e. TMJ Disorders]. In the past few years there have been a number of research articles addressing the relationship of these dental, oral and craniofacial conditions with FMS. SS, FMS, Osteoporosis, and TMD all suggest the importance to oral health professionals of gaining more knowledge and a much better understanding of gender biology in the context of chronic disabling diseases and disorders and accompanying illness." Important to the TMJ dilemma, he continues, "The relationship between FMS and TMD is a matter of interest and investigation. Both include chronic pain, primarily affecting women, although TMD is reported in a younger population of women [20 to 40 years old] and appears to decrease in prevalence with age, whereas the prevalence of FMS [mean age 40 years] increases with age. It has been reported that a small proportion of patients with TMD [18.4 per cent] also has FMS, but that most individuals with FMS [75 per cent] also have myofascial TMD." This again illustrates how pervasive TMJ disorder is, and how unfair it is to the TMJ patient to be categorized often as a "dental problem." The fibromyalgia patient is always considered a "medical patient" simply because the diagnosis of fibromyalgia does not involve the oral cavity --- even though 75 per cent of fibromyalgia "medical patients" also have myofascial TMD, according to Dr. Slavkin.

Daniel Clauw M.D.

Editors Note: Dr. Clauw prepared this article specifically for publication in the JJAMD TMJ UPDATE, subsequent to a visit by the JJAMD founders with him at Georgetown University. JJAMD is grateful for the interest Dr. Clauw has taken in the interrelationship between the rheumatic diseases his research covers and the problems encountered by so many TMJ patients that appear to stem from the same basic disease processes.

Approximately 10% of the U.S. population suffers from chronic pain throughout entire body, and over 20% experiences chronic pain in one or more regions of their body [1,2]. The complaint of chronic pain will frequently lead a person to seek medical attention, and the health care provider they consult will typically begin by attempting to identify the source for their patient's pain. This diagnostic work-up will usually include a history and physical examination, and may also consist of laboratory testing, imaging studies (e.g., X-rays, MRI's), or other diagnostic testing. At the conclusion of this process, the health care provider usually will interpret all of this information, and the patient is given a diagnosis, and a "cause" for their pain.

Often, a "structural" abnormality is blamed for this chronic pain. Examples of such structural abnormalities include arthritis seen on a plain X-ray, or a bulging disc seen on an MRI. In many cases, the abnormalities that are identified on imaging studies are the true cause for pain, and if this is the case the patient may even benefit from surgery aimed at correcting the abnormality. However, innumerable research studies have shown that in virtually any type of chronic pain condition, there is a poor overall correlation between what is seen on X-ray's or MRI's, and how much pain an individual is experiencing [3,4]. For example, there are many people in the population who have arthritis on X-rays, and have no pain in these joints, and many more people who have pain in their joints, but have normal X-rays. This is even truer with MRIs, where up to half of the population may have findings such as bulging discs in their spine, but only a small percentage will have any pain associated with these abnormalities. And again, there are many people who have severe pain but no abnormalities shown by an MRI of this region of the body. The problem of a poor relationship between diagnostic tests and symptoms also holds true for blood tests such as anti-nuclear antibodies, where up to a third of healthy individuals may test positive. When the abnormality on the diagnostic test is not causing the symptom or illness that the person is experiencing, this is called a "false positive" test, and this occurs commonly in chronic pain conditions.

Another equally important problem in chronic regional or widespread pain is a variation a "false-negative" tests. A "false negative" test refers to the situation where the individual has a negative test result, but nonetheless has the illness or condition that the study is supposed to test for. This is not exactly the situation that occurs in chronic pain, because unfortunately there are no "diagnostic tests" for most chronic pain conditions. However, a variation on this "false-negative" does occur frequently, when the individual presents to a health care provider with chronic regional or widespread pain, and the diagnostic testing which is performed all comes back normal or negative. In some cases this will lead the health care provider to tell the patient that they do not know precisely what is causing their pain (the preferred approach), but in other instances these negative tests will lead the health care provider to infer (or explicitly state) that the patient has a psychiatric cause for their pain.

The above problems are all too familiar to the patient with chronic pain. The solution to these problems is complex, but a few basic principles apply. The first is to acknowledge that we do not know the precise cause for most types of chronic pain, and instead define these syndromes on the location of the pain, and/or the accompanying symptoms. The second principle is that the focus in this setting should be on treatment, since we have some reasonably effective treatments for chronic pain, no matter where it is located in the body.

Chronic pain and fatigue syndromes. There are a number of overlapping syndromes characterized by chronic pain and/or fatigue. Several of these are systemic syndromes (i.e. involving several areas of the body) and include fibromyalgia and chronic fatigue syndrome. Others are regional or localized syndromes that are defined on the basis of involving one area of the body (e.g. TMJ/TMJ syndrome). Although the particular area of the body that is involved, in reality many individuals who are found to have one of these localized syndromes will also have chronic pain in other areas of the body (or a past history of pain in other regions of the body). In addition, patients who are diagnosed with one of these regional conditions frequently suffer from not only pain, but also fatigue, sleep problems, memory problems, and a variety of other symptoms that are common to many of these syndromes. This is the reason that many investigators view systemic conditions such as fibromyalgia and chronic fatigue syndrome, as well as a number of organ-specific syndromes such as TMJ, headaches, and irritable bowel syndrome, as being one large group of illnesses that share common underlying mechanisms, as well as similar treatments [5,6]. The clinical features of fibromyalgia and chronic fatigue syndrome, as well as the overlap with organ specific syndromes, are reviewed below.

Pain and Tender Points. Widespread pain and tenderness are the primary features of fibromyalgia. Although the 1990 American College of Rheumatology criteria requires that this pain and tenderness are present in all four quadrants of the body, this is not always the case. There are many individuals who clearly have fibromyalgia whose pain involves only one side of the body, or only affects the upper or lower halves of the body. The pain in fibromyalgia tends to be both migratory (move from place to place) and to wax and wane over time. Stiffness in the morning or after remaining in one position for a prolonged period is common, and patients will frequently note that weather changes, physical activity, stress, and menstruation (in women) worsen the pain. Although it is common for individuals to report swelling in the regions of pain (e.g., it is common to hear that rings no longer fit on their hands), there is typically no swelling detectable on a physical examination. Although chronic fatigue syndrome is not defined on the basis of tenderness, this illness is also characterized by pain in various location throughout the body, including the joints and muscles, throat, neck, and head.

A tender point is defined as a site where an individual complains of pain when nine pounds of pressure is applied. Although the presence of tender points on physical examination is the hallmark of fibromyalgia, it has recently become clear that there are problems with tender points. There have been several studies suggesting that individuals with fibromyalgia are more sensitive to pain throughout the body, not simply in areas recognized as tender points [7]. In fact, pain sensitivity may be increased in both internal organs and in muscles and joints in fibromyalgia, as has been noted in related conditions such as irritable bowel syndrome [9]. Also, the presence of some tender points is not abnormal, since many people who do not suffer from fibromyalgia will have a few tender points [10]. Finally, pain sensitivity is probably influenced by a number of factors besides age and gender, with aerobic fitness, and poor sleep and depression, probably having opposite effects [10,11]. Because there are so many variables that influence pain sensitivity, it becomes easier to understand why diagnostic criteria that utilize tenderness as the principal determinant will always have limited usefulness.

Fatigue. Most patients with fibromyalgia complain of fatigue, but this is not universally present and is not required for the diagnosis. In some individuals the fatigue can be severe and debilitating, whereas in others it is either not present or has been acclimated because of its chronicity. In chronic fatigue syndrome, fatigue is the defining symptom, meaning that all patients suffer from this complaint. In the general population, persons who have any type of chronic pain problem are also more likely to have chronic fatigue, which has led many to suspect that there may similar underlying causes for chronic pain and fatigue.

Because of early work by Moldofsky and colleagues, the fatigue in fibromyalgia, as well some of the other clinical symptoms had been considered to be due to a disruption of deep sleep (stage III/IV) by alpha waves. However, there are many individuals with both fibromyalgia and chronic fatigue syndrome who have entirely normal sleep patterns [12]. At present, then, the role of sleep disturbances in the pathogenesis of fibromyalgia is unclear; poor sleep almost certainly makes fibromyalgia, chronic fatigue syndrome, and other related illnesses worse, and in some persons poor quality sleep may cause the illness.

Patients with fibromyalgia have been demonstrated to have a higher than expected rate of TMJ, and patients with TMJ have been demonstrated to have a higher than expected rate of fibromyalgia [13]. It is likely that in many cases TMJ is occurring because of pain in the entire region of the temporomandibular joint, and is associated with diffuse tenderness in the soft tissues in this region, and thus represents a localized form of fibromyalgia, or myofascial pain. Patients with TMJ also have a higher than expected rate of many other fibromyalgia and chronic fatigue syndrome symptoms, including fatigue as well as many of the other symptoms noted below.

For some time it has been clear that individuals with fibromyalgia and chronic fatigue syndrome have a higher than normal incidence of both tension and migraine headaches. There are a number of other neurologic symptoms in these groups of patients, however, that are not as well recognized. Numbness or tingling, typically fleeting in nature and not following the distribution of a single nerve, is a very common complaint in fibromyalgia. In one series, 84% of individuals with fibromyalgia complained of these paresthesias [14]. Hearing, vision, and balance problems have also been noted, including a 70% incidence of decreased painful sound threshold, 40% with evidence of abnormal eye movements, and 27% with low frequency hearing loss [15,16]. Cognitive or memory complaints, especially difficulty with concentration and short-term memory, are also common. Despite these symptoms, standard neurological examinations as well as nerve conduction and imaging studies are normal in these individuals.

Patients with fibromyalgia display a wide array of "allergic" symptoms ranging from adverse reactions to drugs and environmental stimuli (such that many fit criteria for "multiple chemical hypersensitivity syndrome") to a higher than expected incidence of rhinitis ("runny nose"), nasal congestion, and lower respiratory symptoms [17]. It is unlikely that there is a true allergic basis for most of these symptoms, but instead that they are due to "hypersensitivities" rather than true immune-mediated allergies.

Individuals with fibromyalgia have long been felt to suffer from a number of symptoms of "functional" disorders of visceral organs, including a high incidence of recurrent non-cardiac chest pain, heartburn, palpitations, and irritable bowel symptoms (IBS) such as alternating diarrhea and constipation, bloating, and abdominal pain. Scientific studies have also documented evidence of subtle dysfunction in many of these areas including a high incidence of echocardiographic (sonogram) evidence of mitral valve prolapse, evidence of abnormal muscle tone in the muscles of the esophagus, and evidence of positive tilt table tests, indicative of "neurally mediated hypotension." These studies suggest that there is a physiologic mechanism for these symptoms, and it is likely to be caused by abnormalities in the control of organs by the central nervous system.

Individuals with fibromyalgia higher than expected incidence of painful menstrual periods, as well as having to urinate often and of feeling the urge to urinate [18]. There may also be an association with other genitourinary conditions such as interstitial cystitis and vulvar vestibulitis or vulvodynia (which are characterized by painful intercourse and sensitivity of the vaginal region).

Individuals with both chronic fatigue syndrome and fibromyalgia have a higher than expected incidence of current (approximately 20%) and lifetime (50%) major depression, as well as other psychiatric disorders. There is considerable controversy regarding the relationship between these psychiatric conditions and the concurrent physical symptoms. Some feel that this is primarily a psychiatric condition, and that the symptoms experienced are the result of somatization, but most feel that the psychiatric problems some patients with these illnesses experience occur largely as a consequence of the chronic pain, fatigue, and disability that accompanies these conditions.

Summary:

Although it is tempting to view pain as a response to inflammation or damage to an organ or tissue, in many patients with chronic pain no such cause can be identified. There are a group of systemic syndromes such as fibromyalgia and chronic fatigue syndrome that are characterized by chronic pain in various locations in the body as well as fatigue, and other syndromes (e.g. TMJ) that are characterized by chronic pain in one region of the body. However, there is overlap between these systemic and regional syndromes. Persons who have diffuse pain also frequently have regional pain syndromes and thus qualify for diagnoses such as TMJ, and persons with diagnoses such as TMJ are more likely to also have chronic pain in other regions of their body, or throughout their entire body. In all of these conditions, it is likely that dysfunction in the nervous system is responsible for pain, instead of the pain being due to damage or inflammation in the painful region. Because of the recognition that we are dealing with a group of overlapping conditions, current research is focusing on how and why an individual experiences pain in the absence of tissue damage. This research is likely to lead to more effective treatments for this spectrum of illness.

1. Wolfe F, Ross K, Anderson J, Russell IJ: Aspects of fibromyalgia in the general population: sex, pain threshold, and fibromyalgia symptoms. J Rheumatol 1995; 22: 151-156.
2. Wolfe F, Ross K, Anderson J, Russell U, Hebert L: The prevalence and characteristics of fibromyalgia in the general population. Arthritis Rheum 1995; 3 8: 19-28.
3. Clauw DJ: Fibromyalgia: more than just a musculoskeletal disease. Am Fam Phys 1995; 52: 843-851.
4. Clauw DJ: The pathogenesis of chronic pain and fatigue syndromes, with special reference to fibromyalgia. Medical hypotheses 1995; 44: 369-378.
5. Yunus MB: Towards a model of pathophysiology of fibromyalgia: aberrant central pain mechanisms with peripheral modulation [editorial]. J Rheumatol 1992 Jun 1993; 19: 846-850.
6. Hudson JI, Hudson MS, Pliner LF, Goldenberg DL, Pope HGJ: Fibromyalgia and major affective disorder: a controlled phenomenology and family history study. Am J Psychiatry 1985; 142 (4): 441-446.
7. Granges G, Littlejohn G: Pressure pain threshold in pain-free subjects, in patients with chronic regional pain syndromes, and in patients with fibromyalgia syndrome [see comments]. Arthritis Rheum 1993; 36: 642-646.
9. Hiltz RE, Gupta PK, Maher KA, et al: Low threshold of visceral nociception and significant upper gastrointestinal pathology in patients with fibromyalgia syndrome. Arthritis Rheum 1993; 36(9S): C93.
10. Silman A, Schollum J, Croft P: The epidemiology of tender point counts in the general population. Arthritis Rheum 1993; 36(9S):59(Abstract)
11. Granges G, Littlejohn GO: A comparative study of clinical signs in fibromyalgia/fibrositis syndrome, healthy and exercising subjects. J Rheumatol 1993 ; 20: 344-35 1.
12. Doherty M, Smith J: Elusive 'alpha-delta' sleep in fibromyalgia and osteoarthritis [letter]. Ann Rheum Dis 1993; 52: 245
13. Wright EF, Des Rosier KF, Clark MK, Bifano SL: Identifying undiagnosed rheumatic disorders among patients with TMJ. JADA 1997; 128: 738-744.
14. Simms RW, Goldenberg DL: Symptoms mimicking neurologic disorders in fibromyalgia syndrome. J Rheumatol 1988; 1271-1273.
15. Rosenhall U, Johansson G, Omdahl G: Eye motility dysfunction in primary fibromyalgia with dysesthesia. Scand J Rehab Med 1987; 19: 139-145.
16. Gerster JC, Hadj-Djilani A: Hearing and vestibular abnormalities in primary fibrositis syndrome. J Rheumatol 1984; 11: 678-680.
17. Cleveland CH, Jr., Fisher RH, Brestel EP, Esinhart JD, Metzger WJ: Chronic rhinitis: an under recognized association with fibromyalgia. Allergy Proc 1992 Sep-Oct 1993; 13: 263-267.
18. Wallace DJ: Genitourinary manifestations of fibrositis: an increased association with the female urethral syndrome. J Rheumatol 1990 Feb 1993; 17: 238-239.

JJAMD'S Founders have been asked to give a TMJ presentation to the annual program meeting of the Licensed Practical Nurses Association in October. This demonstrates the increasing awareness and a willingness to spread this awareness to the broader public, as well as considering TMJ as an area for learning by the paramedical community. It follows a number of appearances we have made at Women's Health Conferences and other healthcare events. JJAMD provides these seminars pro bono, which often comes as a surprise to the organizers, but to us represents our commitment to the health of our constituents and the need for increasing awareness of TMJ Disorder, particularly among the healthcare community. If anyone wants to send us helpful information to be included in our presentation, or in handouts to the nurses, please do so and give us permission to use it. Please type your information/case history/story/etc. If you use a Macintosh computer, please send us a disk -- or if necessary we can convert a PC disk. Here is another chance for you to be heard by an audience of concerned professionals who are in the front line of preventive care of patients.

As indicated elsewhere in this Update, this is one suggestion as to how you can be proactive in publicizing the Month of November as "Jaw Joints-TMJ Awareness Month ®". Below is an example of a PSA form we use to announce events. You can use this sample PSA to get out the information in your own geographical area in the press, radio, TV, and postings in public places. You will find that these sources are willing to publicize "good causes" with no cost or obligation. They want to know simply the Who, What, Why, Where, and When, and the Contact Person. They usually want a short articulate statement of the facts, with an attached sheet describing The Cause, the organization sponsoring it, and helpful consumer friendly information. You can use the Congressional Record Proclamation we included in our last JJAMD Update, or you can send for another copy of it from JJAMD.

You can also get very good background information by downloading from our Internet source with Healthtouch®. The web-site address is: http://www.healthtouch.com; Click on Table of Contents, TMJ & Jaw Joints; then select from the pamphlets shown. You can also get some good text material by using the information on the last page of this UPDATE, which spells out the mission of JJAMD to help all TMJ patients. The only stipulation that JJAMD legally requires is that the name "Jaw Joints-TMJ Awareness Month"® must be used exactly as printed here.

November has been designated: "JAW JOINTS- TMJ AWARENESS MONTH" as entered into the Congressional Record by Congressman Barney Frank. Temporomandibular Joint Disorders commonly referred to as "TMJ," afflict millions of Americans, both children and adults of both sexes and all races. TMJ is a painful and disabling disorder that emanates from the Jaw Joints and can affect the health of the entire neuro-musculo-skeletal system, often spreading pain and dysfunction throughout the body.

Further information is available from the:

1. JJAMD Foundation http://www.tmjoints.org/ or from:
2. http://www.healthtouch.com | table of contents | TMJ & Jaw Joints |

JJAMD, as the exclusive provider of TMJ information to the Healthtouch® network in kiosks and on-line on the Internet, continues to experience highly successful results. In the past quarter, over 17,000 "hits" were made on JJAMD materials with a significant number of downloads of one or more pamphlets, which are included in this free public service. We are currently updating, and adding materials for Healthtouch®.

A Rationale as to Why JJAMD Does Not Select Out From the Glut of Information on TMJ from Both the Professional and Popular Media

A Recent National Public Radio [NPR] piece had an excellent discussion about the ongoing conflict between scientific research and reporting of this research in the media. Journalists are trained to report events on an immediate basis, which is opposite to the methodical way scientists are trained to accomplish their research under scrutiny of peer review and FDA approval. This is very important to TMJ patients, because there are more monies being funded specifically for TMJ research than has been in the past. This is largely due to the work of TMJ patients as advocates, who are vigorously bringing TMJ awareness home to the Congressional Budget Committee members and local officials and healthcare professionals.

Progress in such research is bound to be reported out more frequently in the future than has been the case in the past. Unfortunately, no matter how well trained the reporter might be, the complexity and the controversy swirling around The TMJ Dilemma is extremely difficult for these reporters to fathom. In addition, when it is about TMJ, most reporters are not given sufficient time to do independent investigation to separate "facts from myths". As a result, most articles on TMJ are superficial, inaccurate, and unhelpful to TMJ patients and the general public.

Let us say, for example, that a scientist discovers a genetic marker that could reverse certain forms of TMJ disorder. The journalist might report "scientist discovers cure for TMJ." This would give the TMJ patients cause to rejoice that their pain and dysfunction might be ended in the near future. In actual fact, it probably means that there were some positive findings in experiments on rats or zebra fish. The experiments would have to be replicated before validation, which could take months or years. Then human experiments must be done before the FDA would approve a serum or compound to be used to affect the "cure." That probably means that even if successful, the research might reflect only a small sub-set of TMJ patients who evidence just a few signs and symptoms from the broader range of many other body-wide signs and symptoms that they are experiencing. Therefore, it could be years before any actual results are applicable to the TMJ patients. The reporters, we are told, are very impatient with the slow progress of the scientific research, and feel obligated to meet deadlines to report the events, as they happen--not years later when they are proven or disproved. This is why we are seeing so many reports of "cures" for everything from Aids to Cancer, when in reality such "cures" are not happening as reported. The latest hot topic "Viagra Impotence Cure" is a case in point. Popularized, emotional, expensive, we are quickly learning that it is not a cure-all, and, indeed, is already evidencing serious adverse effects.

Nevertheless, it will be encouraging to start seeing some reports of progress for the many new research projects which have been funded. JJAMD, however, will continue to resist publishing articles written ostensibly by "experts" in the TMJ field unless we feel they are helpful, time tested, and Genuinely promote non-invasive help. Remember! In 1998, there is still no Board Certified Specialty in TMJ or TMD in either the Medical or Dental professions.

According to the NIH TMJ/TMD Technology Assessment Conference in 1996, it was reported out that there is no universally recognized scientifically proven treatment modality. This is why it is important that TMJ patients continue to keep the pressure on all who can help to report out the truth from "The Patient's Perspective". A "TMJ Patients Grassroots Movement" is still urgently needed.

We have received three items, as we were ready to go to press. They impressed us as relevant to our discussion of TMJ research in this UPDATE. They caused us to reflect and reminded us why it is so difficult to prove The TMJ Cause more quickly, humanely, and judiciously. Here they are: Forsyth, Harvard School of Public Health, and Tim's Navy Dental information.

There are all types of pain: physical, emotional, and financial. While these apply to all TMJ Patients, nevertheless, TMJ is mostly identified as if it were only a Pain Syndrome and the patients [mostly 20-40 year old women] as suffering from a Chronic Emotional Stress Pain Syndrome. In fact, many TMJ patients have fallen into step with this mischaracterization, leaving behind speaking out about the concomitant physical dysfunction they also suffer. Dealing with The TMJ Dilemma poses a personal emotional pain to us, because the research and literature is focusing and touting this misperception, and leaving out significant information. This, in turn, penalizes males, children, and elders who are left out of the equation.

Part of JJAMD's frustration with Forsyth Research Institute, the foremost oral health research facility in the world, has to do with their failure to recognize TMJ as a discreet subject worthy of inclusion within their research paradigm. As this UPDATE was going to press, the spring issue of "Forsyth" magazine was received. In it are two examples of what we mean by "close but no cigar." The full cover features an article entitled "How Can Zebra fish Help Us to Understand Cranlofacial Development?" The article explains, "Craniofacial development is a complex process which is the result of a series of cellular movements, proliferations, and differentiations." It concludes with "Molecular analysis of phenotypes observed in zebra fish that resemble human craniofacial syndromes can be directly applied to craniofacial anomalies observed in human development. Not only will we be able to better understand the molecular causes of craniofacial anomalies, but we may also use the zebra fish to devise and test corrective therapies, which can eventually be applied to humans.

Another article of interest is entitled, "Oral Biology and the Study of Genetic Disorders." While the studies are involved In craniodiaphyseal dysphasia and other rare disorders, one form of disease is cherubism so-called because it is characterized by "fullness of the cheeks and jaws."

In both cases, the researchers never consider mentioning the Jaw Joints/TMJ. We suspect these researchers do not want to deal with The TMJ Dilemma any more than the Medical Profession and the broader Health Care Community. As much as we try to remind these scientists that the TMJoints are equally Involved in the growth and development of all people, impacts the quality of life for all people, and are fundamental to their work in-and-around the oral cavity, the message has been rebuffed to date and we are resented for tapping into their consciences.

In addition, another frustration has to do with the fact that JJAMD, in our 17-year association with Forsyth, has never been extended the courtesy to present lunchtime lecture at Forsyth. This month, a foremost maxillofacial surceon, who has performed surgery on the Tm' Joints, has been asked to speak again, but JJAMD's work to help foster knowledge and quality research on the TMJoints continues to be unrecognized by Forsyth researchers.

TMJ patient Tim, who is featured in this UPDATE for the proactive work he is doing to try to access his entitlements and the benefits for all veterans, has sent us a memo, which demonstrates that the Navy is well aware of the TMD [TMJ] Disorder. This raises an additional question as to why the Veterans Administration is so truculent in their opposition to recognition of TMJ as a disabling disorder. The memo, signed by the Chief for Dentistry, says:

"In January 1996, I had an involved discussion about TMJ with Commander Ehrlich, Specialty Leader for Orofacial Pain/TMD [TMJ]. That fascinating discussion updated me on the rapidly emerging area of orofacial pain and TMD [TMJ]. It is apparent that recent advances in physiology clearly demonstrate that dentistry can no longer rely only on dental concepts to adequately manage TMD [TMJ] Patients. Item #2 of the memo states" "TMD [TMJ] is a pain dysfunction condition that involves the full scope of the Trigeminal Nerve System. As such, Naval dental officers must be aware of the complex inter-relationships between the head, neck and brain that are involved in TMD [TMJ] diagnosis and management. Dental officers must be aware of the implications of stress and muscle fatigue, referred pain, chronic pain, abuse, lack of sleep, and pre-existing below the shoulder pain when assessing TMD [TMJ] patients... Dental officers must understand the need for local anesthetic diagnostic and therapeutic injection of both muscle and the temporomandibular joint before any irreversible interventions are started."

This memo--encouraging the Dental Officers to seek further training--is clear evidence that the Navy understands the TMD[TMJ] problem and has the will to help. The VA, other governmental and all other Public Health agencies, Medical Profession, and Arthritis Foundation, should do no less.

Note: Rep. Patsy Mink of Hawaii said on C-Span that she is deeply committed to the health care of all veterans. Many callers echoed Tim's problems with the V.A. She serves on the Veterans Affairs Committee, so would be a good person to contact.

The Spring/Summer issue of Harvard Public Health Review reports that the study GBD published in 1996 by the World Health Organization [WHO] is "a groundbreaking analysis of morbidity and mortality around the world." Important to JJAMD, involved as we are with the noncommunicable disease of TMJ Disorder, is the statement that "The GBD makes some bold assertions that stand accepted public health wisdom on its head. Among its major findings is that the so-called 'epidemiological transition' from infectious to noncommunicable diseases has advanced much farther than most experts had imagined." The article goes on to say that non-fatal diseases, e.g. OsteoArthritis and Depression exert a heavy burden on society. The GBD reports that Depression causes more disability around the world than the "popular" infectious diseases including AIDS. In fact, the study shows that Depression emerged as the leading cause of global morbidity.

The essence of the GBD is directly in line with JJAMD's preaching over the years. The GBD laments those resources, which are being hogged by the popular infectious diseases, need to be shared with noncommunicable diseases since "over the next 25 years, Depression will disable more people than traffic accidents, war, and HIV." This comes as no surprise to TMJ Patients who are disabled with disorders such as Arthritis, Fibromyalgia, Chronic Fatigue, and are inevitably "depressed" by the lack of resources and interest from the health care community to help them in any way. The GBD has generated vigorous debate, which language easily replicates the TMJ debate: "the debate over [sic] TMJ will not subside so soon ... but welcomes discussion ... it can only be made better with more data, more good people behind the project, more time, and the application of more finely tuned analyses."

We have tried to convince Harvard and others to do a major study on TMJ as a pervasive, prevalent, and poorly understood disorder worthy of their public health scrutiny. This is one way the GBD will be validated in the minds of the millions who suffer with noncommunicable diseases and disorders such as TMJ.