Jaw Joints - TMJ Awareness Month Published in Congressional Record

The Congressional Record of October 3, 1997 reported what JJAMD considers a momentous event - that of the US congress "recognizing" TMJ. The Congressional Record, which is the official record of the proceedings of the Congress of the United States, reported that Mr. Barney Frank, Massachusetts House of Representatives 4th District, proclaimed this November and all future Novembers as "Jaw Joints-TMJ Awareness Month." Mr. Frank stated "Temporomandibular Joint Disorders are among the more painful, yet least well understood disorders affecting people today. While estimates of the number of people in this country affected by TMJ disorders run into the millions, these disorders are often mistaken for other ailments or presumed to be psychological in nature. In light of the difficulties that exist in diagnosing and testing TMJ disorders, it is clearly very appropriate to establish an awareness month, and I applaud the Jaw Joints & Allied Musculo-Skeletal Disorders Foundation [JJAMD] for helping organize this effort. This foundation, based in Boston was created and is presided over by two extremely dedicated Massachusetts residents - Renée and Milton Glass. They have been an excellent source of information to me over the years about TMJ and related matters, and, although this November is officially Jaw Joints-TMJ Awareness Month, it is also in many ways a tribute to their dedication and hard work in the cause of helping those who suffer from this disorder." The Record published our complete explanation of TMJ as well as the mission and vision of JJAMD. " [If you would like a copy of the complete 2-page article, send a self-addressed stamped envelope]






JJAMD TMJ Proceedings Published…Finally

JJAMD's 1995 TMJ Conference Proceedings have now been published by the Massachusetts Department of Public Health with additional funding provided by EDS Federal and Oral-B division of the Gillette Company. The book runs over 200 pages and contains talks by over 25 speakers. Topics run the gamut of economics, ethics, alternative medicine, TMJ patients' perceptions, treatment, and a review of the health care system by presidential candidate Michael Dukakis. The Proceedings would make an excellent "gift" to family members, treaters and others who wonder that "TMJ" is all about. Due to the high cost of printing and postage, some of which JJAMD must absorb personally, we must charge $25 for the Proceedings which will be sent by priority mail.




Healthtouch® Usage Continues to Grow

Statistics reported to JJAMD by Medical strategies, Inc., a division of Cardinal Health -- sponsors of the Healthtouch® interactive health communication system continues to show remarkable increases from one period to another. JJAMD's TMJ information may be accessed for free in two different ways. One is through kiosks located in pharmacies, shopping malls and health centers. By following the instructions on the kiosk, the user can access TMJ and receive our information in printouts or can read the material on the screen. The printout can be made in English or in Spanish, and in regular size type or in large type for those who have vision problems. The second way of accessing our free information is through the Internet under the Healthtouch® home page (http://www.healthouch.com)/


The most recent kiosk report covering March 1997 through June 1997 shows that 5,812 people accessed the system. The report for the Internet during July-October 1997 showed 17,129 accesses. JJAMD's information is contained on 7 different leaflets which explain the different aspects of TMJ from the patient's perspective. While JJAMD does not provide specific medical advice nor does it provide doctor referrals, the material covers a wide-ranging scope of user friendly information about TMJ and useful self-help tips. Importantly, it demonstrates that the patient is not alone with his or her symptoms, but is suffering with a "mainstream" disorder. One leaflet contains a Patient Survey, which can be downloaded, filled out and sent to JJAMD directly. We receive many letters from patients who tell us that the information we provide is helpful in their understanding of what they are going through. In addition the Patient Survey is very helpful in allowing patients to articulate their own experiences. JJAMD will be preparing a research study based on these Patient Surveys in the near future. We will attempt to publish the results in a Journal article, and perhaps factor in these responses into the TMJ Registry, which is being planned.





On October 22, 1997 the Heinz Foundation, chaired by Teresa Heinz, [who is also the wife of Massachusetts Senator John Kerry] sponsored a Women's Health Conference in Boston entitled Women, Health & the Environment 1997. Attendance exceeded 1,000 participants from all over New England. The agenda covered primarily environmental issues relating to women's health. While TMJ was not a specific agenda item, there is a distinct relationship between the environmental health problems covered and some of the problems being experienced by TMJ patients we come into contact with. For example, many TMJ patients suffer also from chemical sensitivity.

On October 30, Blue Cross Blue Shield of Massachusetts hosted a national meeting on the subject of women's health issues and the Health Insurance Industry titled Women's Health Leadership Conference. Milton, as Blue Cross Chairman, kicked off the meeting by welcoming the audience. He used TMJ as an example of a health problem often considered a woman's issue due to the fact that most patients presenting with TMJ happen to be women. He stressed the difficulty imposed on TMJ patients because treatments are often not covered due to the controversial nature and the lack of generally accepted scientifically proven efficacy. He emphasized that the industry has to get around these problems somehow and assume a leadership role in resolving the issues that deny TMJ patients their rightful entitlements, for which they are paying premiums. Renée had an opportunity to discuss TMJ with many of the attendees, and was able to increase the awareness of this difficult situation among leaders in the health insurance industry.

On November 1, again in Boston, JJAMD participated in a conference attended by over 500 women, entitled "Women Taking Charge: A Healthy Challenge. Every attendee had our Educational self-help Tips Pamphlet in their packet of conference information. JJAMD was provided a booth in the exhibition hall, where we ran our educational video and distributed some additional materials. The flood of visitors to JJAMD's booth once again demonstrated that TMJ is a mainstream disorder with which many people suffer. The conference was sponsored by the Healthcare and Policy Institute, which was founded by Evelyn Murphy Ph.D., former Lieutenant Governor of Massachusetts, which Milton chairs and Renée is a director. Milton again kicked off the meeting and included TMJ as an example of the troubling issues involved in women's health. He gave Renée case as an example of the neglect of women's issues by the healthcare establishment. The lack of research, the trivializing of the patient, the bouncing around of women TMJ patients from one practitioner to another were given as TMJ examples which mirrors in most way those affecting women's health issues in general. Renée, however, always says that the big difference between TMJ and all other women's health disorders is that at least other disorders are accepted as "legitimate" by the medical establishment -- meaning that there is at least health insurance coverage in most cases. The TMJ sufferer is indeed an orphan, cast out wrongly between two health professions and considered as something less than a legitimate health disorder.




A subcommittee on TMJ Registry Project, consisting of two directors, Dr. Richard Pharo, and Lisa Lessard, have prepared a TMJ concept paper to be studied by the full committee. A registry has been a fond hope of JJAMD almost from the beginning. As the paper says "registries for diseases are not uncommon in the United States. Therefore establishing a registry for TMJ need not entirely re-invent the wheel of registry technology. Much can be learned from studying other registries to avoid pitfalls and to take advantage of the knowledge and experience of those who have gone through the process of creating effective disease registries."

There are, of course, many problems associated with constructing a medical registry for TMJ, not the least of which is identifying those care givers who provide diagnosis and treatment of TMJ. This would involve dental practices as well as any number of medical offices as well. Contact would have to be made with a large number of practitioners to determine who will provide the basic input into the registry. Patient follow-up would also have to be made in order to determine the outcome of treatment. As the concept paper points out, it might be advantageous to link TMJ with other medical indications, such as sports injuries or other pain/dysfunction disorders which are already included in a medical registry. Additionally, the use of the data has to be communicated so as to prove the rationale for such a registry. A successful registry output could result in published research, information to the government [CDC] and/or the public health sector.

JJAMD is fortunate to have had a successful introduction to the Internet through its association with the Healthtouch® interactive medical information system. This gives us a ready access to the millions of people who access the "net" looking for information on TMJ. Many of these people are anxious to cooperate on a registry so as to advance the cause of science and information sharing.






Writing in the November 1997 Issue of JADA [Journal of the American Dental Society], one of a series of excellent articles authored by Dr. Harold Slavkin, Director of NIDR [National Institute of Dental Research, Dr. Slavkin further establishes the link between Fibromyalgia [FMS] and TMJ. Reader's of the JJAMD UPDATE will recall that JJAMD has remarked on this relationship as well as the relationship of TMJ to a number of overlapping medical conditions, for years -- even at a time when Fibromyalgia "experts" were denying that such a link existed. Typically, these experts would insist that "tender points" used to diagnose fibromyalgia, do not exist above the shoulders, and that is why TMJ had no connection with fibromyalgia. Evidence is now increasing that TMJ and fibromyalgia are linked along with Chronic Fatigue Syndrome in a range of disorders with related symptomology. Dr. Slavkin writes "In FMS, the symptoms can vary from person to person and may include more generalized discomfort (and dysfunction) beyond the chronic and widespread craniofacial and skeletal muscular pain with specific tender points." He goes on to say "Of course, in the absence of a definitive biological marker[s], it is reasonable to assume that FMS may describe more than one disease with closely related or shared symptoms." He further states "As FMS can be found in -association with a wide variety of conditions, the concomitant diagnosis of FMS may be obscured by an underlying entity such as TMD [sic TMJ Disorder], chronic fatigue syndrome, irritable bowel syndrome and rheumatoid arthritis. Likewise, in new patients presenting with symptoms suggesting FMS, a search should be made for an underlying condition." [i.e. TMJ].

As to the relationship of TMJ Disorders [Dr. Slavkin consistently uses the term "TMD"] to FMS, Dr. Slavkin writes, "A number of conditions are regularly reported to be associated with FMS or to mimic its symptoms....... Two conditions that are of particular interest to those of us in dentistry include Sjogren's syndrome, or SS, and TMD. [sic 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....... The relationship between FMS and TMDs 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. It has been reported that a small proportion of patients with TMD [18.4 percent] also has FMS, but that most individuals with FMS [75 percent] also have myofascial TMD. TMD is often considered to be a local or facial disease or disorder, whereas FMS is essentially a generalized syndrome with clinical signs and symptoms of pain in multiple craniofacial and skeletal regions. Patients with FMS further appear to have generally lower pain thresholds and more intense manifestations of pain, fatigue and sleep loss. A recent survey indicates that the features that best differentiate FMS from TMD are functional disability, reports of work disability, and a general dissatisfaction with health." [This article is one of a series of articles that Dr. Slavkin continues to publish in JADA. You may receive a copy of the full article by writing to Dr. Harold Slavkin, Director of National Institute of Dental Research, 31 Center Drive, MSC 2290, Building 31, Room 2C39, Bethesda, Md. 20892-2290. We suggest that you also send a personal letter to Dr. Slavkin describing your efforts to get well and urging that research on TMJ be expanded and communicated to the patients. Please send us a copy of your letter.]





Alternative Medicine and Therapies for TMJ: Do They Exist?

Ed. Note: The following paper was presented by Dr. Thomas Delbanco M.D. to the JJAMD TMJ Conference on June 23, 1995. It reflects, in our opinion, some of the skepticism we see in most "traditional" physicians. In fact even the current director of the Office of Alternative Medicine, who is a M.D. said that research must be done to prove the efficacy and safety of alternative therapies. While JJAMD does not provide specific medical or treatment advice, nor do we endorse any allopathic or alternative medicine, it is only fair to point out that most "traditional therapies" have not withstood the rigors of scientific validation. This includes even many surgical procedures in common usage. If every one of the tens of thousands of herbal, homeopathic, naturpathic, acupuncture or other alternative therapies were required to be proven effective scientifically, it would be a long time indeed before they were utilized. Additionally, who would pay the cost of such research? As of now, certainly not the NIH. So the controversy will continue to rage. Accounts of bad results from herbs or other remedies will continue to be written about and the public will continue to be confused and frightened. In the meantime many patients will be harmed by side effects or disastrous results from medicines and therapies already approved by the FDA, which will continue to be funded in ever increasing amounts by our tax dollars.

Dr. Delbanco:

There is no question but that the public's interest in alternative medicine is growing. The over-riding question is, however, how confused are our citizenry about what we scientists in medicine are teaching, about traditional medicine, and what we are thinking about alternative medicine?

There are good and sufficient reasons why we have a confused citizenry. One of the reasons that I would postulate as to why people are turning increasingly to "non-traditional" therapies, is that we--with our science-too often turn to sensitivity, specificity, and predictive values. We avoid some of the common sense indications along the way. We conduct tests that turn out differently than expected. This confuses people. Last month women were supposed to take estrogen and progesterone to protect them. This month, the New England Journal of Medicine may say that is dangerous. Next month, you know it may say something different. People are understandably very confused about what is the best thing to do.

Dr. Daniel Eskinazi referred to some headlines from a newspaper. They actually referenced a paper that David Eisenberg and I wrote along with some others. It was published in the New England Journal of Medicine and has had more response than almost anything I have ever written. It was basically intended as a minor paper. All we did was call up 1500 people and say: "What do you do when you do not feel well?" We learned that an awful lot of patients do things that their traditional medical doctors do not know about. The most striking way to summarize it is that there are as many visits per year to non-traditional therapists as there are to all the primary care doctors combined in this country. And 70% of those who go to a non-traditional therapist do not tell their doctors about it. People do not only go to a non-traditional therapist when they have diabetes, cancer, or some other life-threatening illness, they go to their traditional doctors as well. They do both. So basically, one could say that people are smart. They play it safe. So right now it is clear that there are really two parallel tracks to medicine or health care in this country. One of the problems with this is that "never the twain shall meet." Physicians do not seem willing to talk to one another about alternative medicine. Similarly, even patients seem reluctant to talk to one another about non-traditional therapies. They are embarrassed to bring it up with me as a traditional doctor. It is only after they have gone for non-traditional therapies that the Pandora's box opens and we have a frank discourse and colloquia about these matters. There is more discourse now, and there is starting to become more openness. There is also more inquiry as the subject gains more media attention. We doctors are very nervous about things that cannot be "scientifically substantiated." If many of my colleagues whom I have trained as epidemiologists and decision scientists were listening to this conference discussing TMJ, where doctors cannot agree on how to make a diagnosis and how to treat it, they would say that they were in a very strange place. They would want to get out of here straight away. It is not that different in other areas of traditional medicine. If, for example, you think we know whether Chronic Fatigue Syndrome exists or not, you are wrong. We do not know. We do know that there are people who have a constellation of complaints that some physicians put together as A, B, or C. There is an awful lot we do not know. And that in a way is what makes science so wonderful. It is the "spirit of inquiry," because there is so much that we do not know. Where we get nervous and start to sharpen our little scientific hatchets, is when people claim they know something when, in fact, they may not. What upsets us is when people say this treatment or that medicine works for "such and such" without having any scientific evidence to back up their assertions. For instance, one might declare that an MRI must be done for TMJ when the TMJ complaint is accompanied by low back pain. Then we scientists get out our little diagnostic hatchets and say, "Did you ever look at the low back pain study which showed just as high a prevalence of TMJ in those people whose backs do not hurt as those who do hurt?" And then we get into nasty arguments about what is good medicine, what is wasteful, and what is non-efficacious. And that happens traditionally in many of these settings. I repeat, that is what makes us nervous. At this time, there are an awful lot of claims flying around in this area that we do not comprehend and which are not yet scientifically justified.

Do you know what Homeopathy is? Homeopathy was invented by a highly esteemed Doctor, named Hahnemann, in Germany. There is a museum in Stuttgart dedicated to him, financed by Robert Bosch Tifton, the manufacturer of Bosch spark plugs. Bosch had a lot of money and he loved Homeopathy, so he built a museum, which I would recommend you visit. I had the chance to read through the hand written files, in German, of Dr. Hahnemann. I happen to be a violinist, and I came across a two page encounter which he had with Paganini, who came to him complaining that he was having difficulty with his violin playing, because he was in the state of constant sexual excitement. Pretty neat stuff. I would like to write a paper about that too sometime. Hahnemann basically decided that there was a new way of treating illness. He began by grinding up spiders. He diluted them with water and he shook the compound a certain amount of time per unit. He then administered the potion to patients, and amazingly they got better. And that was the birth of Homeopathy. Now we "scientific-types" have trouble with that, because--as far as we can see--they dilute those spiders so much that there is barely a molecule of spider left in the water. Yet they claim the "stuff' works, and there is anecdotal evidence that it does. On the other hand, we scientists should be very humble in our doubts, because if we claim to understand the world and how the world works, then we are being silly. The world is a mysterious place and the scientific method goes just so far. It is when someone comes out and says, "I have evidence that Homeopathy works more than placebo, more than patient expectation, more than this or that," that we begin to get very anxious and we get out our methodological hatchets. I would argue that most alternative therapies, maybe all, so far as I have reviewed the literature, cannot go beyond placebo or expectation and suggest that there is an active ingredient in A, B, or C that is bigger than placebo.

Now one might well say: "You are probably wrong, Tom, because I read three papers that said it does." And I might say: "Is that so terrible?" That is the really important point to this discussion. The important question is that we always underestimate the placebo effect. We always underestimate the power of patient expectation. We always underestimate the ability of people probably to get better on their own. Then we get out our scientific hatchets and get everybody confused.

I would suspect that having heard about the huge range of literature involving TMJ Disorders, it might be a good time to do a study utilizing new techniques where data can be pooled. This comes in handy when there is such an enormous database that you cannot really look at it all. We now have statistical techniques that are reasonable to use. We can take 50 studies that seem somewhat different, pool them, look at them, and then decide what the story is. I suspect that if this were done, you would find that there is no one therapy that works better than any other for TMJ. And, in fact, you may find that there is little consensus on most of what is going on in The TMJ World.

You then get into this awkward circumstance: What do we do about it? This brings you into what I call "the return of magic to America," which I think is a good idea. Let me finish this point on that note. Look at what is happening in Europe. Alternative therapies are sweeping depressed, sad, and unhappy countries. "Healing in the Mind," a program that Bill Moyers recently did on PBS, is a program that captured the American imagination. The New York Times had articles almost every day on some different kind of alternative therapy. And we have all these different debates about what is safe and effective, and what is pure nonsense or even harmful. In the meantime, alternative medicine has become an enormous industry. Insurers must decide whether or not they should pay for it. They probably have big fights about it with their subscribers, as well as with the corporations who are paying for a big part of the health insurance bill.

I think part of the answer is a return to a more common sense medicine, as is reflected in what is happening culturally in our country. We loved that movie "The Piano." The portrait painter is back in vogue. Abstraction is not the only thing that is ruling. In art, we are going back to the representational figure even though they may be bizarre portraits, such as by Lucien Freud. In music, the loudest and the fastest does not always hold sway anymore. Now we want the more peaceful, so-called original instruments, and the baroque early music movement has had an enormous impact. Look at "The Age of Innocence" going back to Wharton. Right? We all went to see those movies. The Irish are holding supreme in the movies these days--the romantic, the "good old days," and those wonderful and colorful things. Even "Schindler's List"--that awesome movie on one level--black and white with a little flash of red at one point--that is the return to realism for which Americans are calling. And that again resonates well with alternative therapies. If your jaw joints hurt or cannot function properly, maybe the best treatment--if you can afford it--is a stay at the Ritz, a long trip, or just a walk on the beach. That may be just as powerful medicine as an alternative therapy or some of the tests and some of the manipulations to which the patients are subjected, even though that may offend some treaters or hurt some of their pocketbooks.

What is happening in American medicine? I think there is a call that is a mixture of fright and hope. People are scared. We clinicians and scientists scare them. Thalidomide scared a lot of people. Here was a medicine that was unavailable in America, because the FDA would not approve it, so it was obtained in Europe. It was a great sleeping pill and muscle relaxant. Suddenly we had malformed babies emerging out of women. That was probably a turning point. Indeed some argue that this was the signal event, which pushed people away from the kind of traditional medicine that I practice. People do not always trust the doctor anymore and that is part of the change in mentality of the consumer in America. To illustrate this change, my mother bought all her appliances from Mr. Wallins. She got her dishwasher and her other equipment from him because she trusted him. Now when I buy something, or my kids buy something, we comparison shop. That is part of our new realism mentality. And when we get old, we will still comparison shop. It now applies to health care, too. For instance, your jaw or your jaw joints hurt or do not function properly--you comparison shop for diagnoses, treatments, cure-sometimes we make the decision to buy services based on whoever offers the best price and delivery. You run all over the world trying to find the thing that works, rather than sticking with one person whom you trust--the person who says that this is the way we approach this thing. I am sure that is true in the field of TMJ. It is certainly true in my experience in general medicine.

People regret the loss of being regarded as a "whole" person by the health care providers. Twenty years ago, when I was interested in going into primary care, I was considered "nuts." Now I am terribly fashionable. The worm turns in that sense. People are running away from the fragmentation of care and coming back for whole body care. Why?--because time has slipped away. Everyone has robbed us of it. Computers, I think, have robbed us of it, as have the fax machines. I used to be able to send you a letter and know that I would not hear from you for ten days, right? Now I hear from you in 20 minutes. I hate that machine. It is not funny. Mr. Gates says that his computers are going to give us more leisure time. I think his machines are robbing us of any sense of breathing. You do not have time with your doctor. You do not have time with your dentist. That is slipping away. And the health insurers could care less, as long as the bottom line profit is OK. It is not because they are mean spirited; they are not. It is because that is what marketplace competition is all about. Insurers must cover their costs; otherwise they will go bust, and then Milton will be held accountable because he is the Chairman of the Board of Blue Cross Blue Shield Massachusetts. You have these omnipresent problems under which we all labor. And then the patient says, "Tom, you and the other traditional doctors do not care anymore. Why do you not spend more time listening to me whether it is about my jaws, joints, or something else." We are in terrible trouble here, and I think that may well have become the genesis of a flight away from traditional medicine and traditional dentistry to something "Magical."

The point I want to make is that "Magicians" spend more time with their patients. When you go to a chiropractor or to a massage therapist, or to a homeopath, you get more time with that treater. It is that quality time and personal attention that has powerful healing properties. Time is that common denominator which all of you and I deplore losing.

Finally, should we be doing alternative/complementary medicine research or experiments at all? The Office of Alternative Medicine has been appropriated some money to invest and hopes to get more in the future. Dr. David Eisenberg, my colleague at Beth Israel Hospital, is starting a Center for this study of non-traditional therapies. It will feature scientific randomized control studies, clinical trials--all the jargon with which I grew up and from which I received my promotions in traditional medicine. The really interesting question is whether it is worth studying and spending millions of dollars, or should we just try to help people? If you do not rip them off, maybe you should just help them, put your arm around them, say it will get better and hope it will. That line between quackery, charlatans, well-meaning good healers, and scientifically based people, is a continuum.

There is a gray zone and no one can always clearly define one from the other. And that is the nub of what we are wrestling with here. Just keep in mind, as you think about this and about the scientific inquiry that we are entering--where does it lie on the spectrum of medical science? Where do you think it should be on the spectrum, and is it even worth studying? Would we have been better off not being here today, but rather taking care of some people back in the office? Or is it important to conjure and come up with a consensus about TMJ and go on with more inquiry? I know I am being difficult, but I am being difficult on purpose because I want us all to think deeply about these challenges.


Dr. Thomas L Delbanco is currently Professor of Medicine at Harvard MedicaI School and is the Chief, Division of General Medicine and Primary Care at Beth Israel Hospital in Boston. He is a graduate of Harvard College in Cambridge, Massachusetts and Columbia College of Physicians and Surgeons in New York. Dr. Delbanco has been a fellow of the American College of Physicians since 1980 and is a member of the Council of Academic Societies, Association of American Medical Colleges, representing the Society of General Internal Medicine. One of his major research interests lies in developing general medicine and primary care delivery, education, and research programs at academic health centers. He is Chairman of the Picker Institute, an organization sponsored by Boston's Beth Israel Hospital and the Commonwealth Fund, with the goal of bringing the patient's Perspective into sharper focus in health care delivery.


New directions in Pain Research Really?

On November 20 and 21, 1997, Milton and Renée attended an NIH conference at the NIH campus in Bethesda Maryland. The conference, entitled "New Directions in Pain Research" was sponsored by the NIH Pain Research Consortium of which NIDR is an important member. The proceedings were highly technical and definitely oriented towards the scientific community. Although there were a significant number of patients and patient advocates of both TMJ and other disorders - and their attendance was noted by Dr. Slavkin [director of NIDR] no attempt was made to "translate" the scientific proceedings for lay person understanding on any level. Even the breakout session on Musculoskeletal Pain, which was attended by all of the TMJ participants, was so much mumbo-jumbo of six syllable scientific words that it left the lay audience with the feeling that even the presenters probably had little idea of what they were talking about. In all fairness we must admit that we did not attend the second day of the conference because the agenda seemed, if anything, more technical than the first day. It may have been, however, that day two was more patient friendly.

In any case, any help from this end of the research spectrum seems very distant indeed. Renée noted that she had attended many technical lectures presented by Milton before business groups and university classes, and even the least sophisticated member of the audience could understand the presentation. Researchers, physicians and even some dentists seem to need to fall into the technical jargon habit perhaps as a defense mechanism. We notice that when most doctors speak to support/self help groups they use technical words that they must know are indecipherable by the audience. We wonder why this is so?


I Don't Know What YOU Want From Me, Says NIDR Director

Renée had an opportunity to speak to Dr. Slavkin very briefly. He greeted her, as always, most cordially and affectionately and asked how she was doing. Renée said that she was doing ok but is not happy with NIDR. He asked if she felt that the world did not understand her. She replied that she felt that the world understood her - it was NIDR that did not. He said, "I don't know what you want from me." Renée replied that the two of them had discussed the "what" many times and have not gotten very far. She reminded Dr. Slavkin that she did not seek him out at this point. The conversation had to be terminated because the meeting was about to start. Renée would have replied the she wants only a few things from Dr. Slavkin and NIDR, none of which are all that foreign to the mission of a tax supported health research agency, accountable in the final analysis to the voters.

1. Help educate the public on prevention of TMJ.

2. Provide meaningful help to those already suffering with TMJ by providing information and advice.

3. Do research now on the myriad of diagnoses and treatments being provided to millions of TMJ patients to determine scientifically what works--what does not [and should be discontinued]--what helps, and what hurts.

4. Do the basic research that will some day unlock the mystery of TMJ and related disorders.

We are obviously a long way off -- maybe another millennium -- before basic scientific research will unlock the gene that can be switched off and on, like a light switch, to cure TMJ. While we should not discontinue this barely emerging basic scientific TMJ research, we need help now to prevent others from falling victim, especially children, and to help those who are now suffering.

Just think about it. The are no national programs for TMJ. The Arthritis Foundation, which embraces every aspect of arthritis that can be treated with drugs, will not touch TMJ with a ten-foot pole. Perhaps this is because there is no pay-day for the drug companies or for the foundation which labels its own analgesics. There is no national March of Dimes or Cancer Society for TMJ. There is no natural constituency for TMJ since drug companies have no financial interest, medical foundations view it as "suspicious," and health insurers are still waiting for some shreds of evidence that treatments they are constantly asked to pay for are something other than modern voodoo. Where are we to turn for help if it is not the NIH?

In the meantime, the work of the NIH Technology Assessment Panel of May 1996 languishes. You will remember that this was the panel that decided that essentially all of the TMJ research to date is unscientific and therefore essentially worthless. They came up with such specific "hard hitting" conclusions such as the one which said that there is no credible evidence that orthodonture either causes TMJ or cures TMJ. About the best thing they said was that the ridiculous and hurtful anagram "TMD" [rather than "TMJ"] [which we think is used so as to classify women as crazy,] is emotionally charged and should be discontinued. Except for money poured down the rat hole of trying to prove all TMJ women patients as mentally deficient, where is the new research that a future NIH panel can say is scientifically valid?

"What we have here," as the chain gang boss said to Paul Newman just before he clobbered him, "is a failure to communicate." We're talking, but nobody is listening -- and NIDR, FDA, Congress, the Arthritis Foundation and all the others say, "I don't know what you want from me."


What ever happened To The TMJ Association Ltd. Relationship?

What should have been a relationship made in heaven has turned distinctly earthly. You will recall that we told you that the newly formed working relationship with the TMJ Association, Ltd., whose efforts complement those of JJAMD perfectly, was developing very well. Since this was not the first time that it seemed we could work together -- and failed -- we were apprehensive but hopeful. As it turned out, this attempt has failed as well and there will not be another attempt in the future. The basic problem this time turned out to be their total lack of recognition of JJAMD as a force for change. For example, all the work we did to get congress to recognize a "Jaw Joints-TMJ Awareness Month" was not even mentioned in the Association's annual meeting agenda. Further, while we were invited to participate and to lecture at their annual meeting in Washington, at the eleventh hour we were told to attend, but that we were not invited to speak at the annual meeting--instead to submit one page of notes on the health insurance situation. Obviously, our idea of cooperation is quite different from theirs. You should be aware that this is not uncommon among advocacy organizations that continue to have founders at their helm. The sense of loss of control is so marked in founders that they rarely give up power without a "revolution" among their members or boards. We were told recently by a distinguished research scientist who is involved with several advocacy groups that our fierce desire to share or even surrender our control is unique. Having observed other organizations for many years, we agree with this characterization. We are disappointed and unhappy that the TMJ cause has been set back by this and wish the very best for the patient/members. They increasingly rely upon the efforts of this disparate and widely separated group of advocacy organizations who could be a powerful force if only they could get together in the spirit of cooperative sharing. Without such a powerful coordinated groundswell, advancing the cause of TMJ becomes infinitely more difficult and problematical.



Why "TMJ" and Not "TMD"

You no doubt have noticed our frequent "corrections" when other people use the term "TMD" instead of "TMJ." We use only "TMJ" or "TMJ Disorders" in our work for what we consider to be good reasons. TMD was invented some years ago by members of the American Dental Association and picked up for usage by NIDR and others. It is still not used by a significant number of dentists and researchers, and virtually never by the media.

The term, we have been told, is used to describe a range of cranio-facial conditions involved not only with the TM Joint but with the musculature as well. Additionally, the term incorporates the psychosocial factors and psychosomatic issues involved in the disorder as well.

JJAMD believes the condition we are working with involves the TM Joint, the musculature and the connective tissue and facial structures involved. We believe psychosocial and psychosomatic issues are a matter of mental health and not of TMJ Disorder. We believe that the basic drive to change the name to TMD was for the purpose of including mental health factors into the classification. We have no argument with those who maintain that pain and dysfunction may produce psychosis, or that behavioral problems may cause the onset of myofascial conditions. Our argument is that to include mental health aspects into the definition of the disorder is pejorative, anti-woman and counterproductive. We believe that "TMJ Disorder/s" is a perfectly good, time honored and medically acceptable term. It even is a much better term for health insurance purposes, which discriminate against mental illnesses. Therefore, we urge you as patients, NIDR, ADA and all care givers, to use the term TMJ Disorder [abbreviated as TMJ if desired] to describe the medical condition with which our members suffer. As the NIH Technology Assessment Panel concluded, "When sufficient data are available, a multidisciplinary classification system based on measurable criteria should be developed as the first step in a rational approach to developing diagnostic protocols and appropriate treatment modalities. This approach should lead to a labeling of 'subtypes' that could permit the elimination of the term TMD, which has become emotionally laden and contentious."



Published in the January 1996 edition of The Journal of the American Dental Association [JADA] Dr. Harold C. Slavkin, Director of NIDR, authored an article entitled "Placing Health Promotion Into the Context of Our Lives." The subject is one that JJAMD has campaigned for over these many years, but which has received little attention from any governmental agency to date. Unfortunately, JADA is not the popular press to which the population at large looks to for information about health promotion. Instead, the article is positioned to dentists who make up the readership. Although the computer indexes pick up the subject reference, it is doubtful that many researchers, health practitioners, public health personal or the general lay public will ever have the interest or opportunity to read the article.

Dr. Slavkin begins his discussion with the statement that dentistry has been in the forefront of health promotion by incorporating prevention into theory and practice. He states "Results of these efforts have become increasingly apparent over the past 50 years, as previously debilitating dental, oral and craniofacial conditions have decline in prevalence and as better management has followed the introduction effective clinical and community-based preventative services. We have made a difference!" If TMJ is considered a part of craniofacial conditions we would like to see the evidence that TMJ has declined in prevalence or has been the subject of better management. In fact, we would like to see any study, registry or census that shows this effect.

The author continues in his praise for the print media, radio and television, and major national and state health agendas for their increased efforts for health education, health promotion and disease prevention. Again, we TMJ patient advocates challenge the good doctor to demonstrate a single incidence of such increased efforts by any of the parties referenced to promote prevention and health promotion in the field of TMJ.

Dr. Slavkin goes on to warn that 60 percent of the burden of disease faced by Americans, is attributable to behaviors such as poor diet, smoking, etc. He remarks that such behaviors influence oral health as well as general health. He challenges the dental profession to become more effective in promoting health-seeking behaviors...."Imagine a future for the entire American population nearly 270 million people-with reduced prevalence of early childhood dental caries, cleft lip and plate, gingivitis and periodontal diseases, oral and pharyngeal cancer, temporomandibular joint disorders, chronic facial pain and oral bone loss due to osteoporosis. There is reason for such optimism." He goes on to explain his reason for such optimism in the form of smarter" vaccines, investment in biomedical research and behavioral research and training. His optimism carries the reader into the next millennium when we will all become senior citizens with" complete denotations, without pain or discomfort, and without oral, dental or craniofacial diseases." Tell that to the 10 million Americans suffering with TMJ, for whom the problem only gets worse for so many as they age, and hopelessness and despair accompany their journey into the next millennium.

The article goes on to document the many advances that have been made because of fluoridation of our public drinking water and advances in saving dentition. Doctor Slavkin encourages the profession to use the dental visits as an opportunity to provide effective motivational interventions to enhance self-care and health care decisions, particularly in children. In the community context, he urges professionals to engage in school, community, and population based oral health programs or in programs for disadvantaged individuals or family units. He talks about sealants for children and caries prevention. This is the stuff of which distinguished thinkers such as Dr. Slavkin can lead a nation into better health. Unfortunately, again where TMJ is concerned, such health promotion is virtually absent. We still do not see even a recommendation that TMJ screening be routinely coupled with scoliosis screening of school-age youngsters. We still do not see a recommendation that EMT personnel be trained to recognize potential TMJ damage in accident victims and adjust neck braces accordingly. These are the things that JJAMD has urged but are still missing, even in an excellent discourse such as this article.

The article concludes with a litany of "Barriers To Health Promotion And Disease Prevention." The list is all too familiar and discouraging. Included is the caveat about the downside to the incredible scientific research that is going on -"however, science transfer, or knowledge dissemination, to health professionals remains a formidable task." Therein lies the nub of what JJAMD has been campaigning- for years. Disseminating information, whether from scientist to health professional or from health professional to the public is a formidable task. Even translating Dr. Slavkin's thoughtful article to the public at large is a formidable task. How does this information flow from JADA to the public? Isn't NIDR honor bound to find a mechanism where it can communicate Dr. Slavkin's expertise to the public? What is the proper role of the media in disseminating information. Must it always be in 30-second sound bites on the evening news which misinforms more than it informs? How can we hold our government accountable after spending our hard earned tax dollars on research, to communicate the results of this research in a user-friendly and informative fashion. Finally, how can we, as TMJ patients, advocates, and future TMJ victims, convince NIH that we deserve even a modicum of time, attention, and effort to have Health Promotion Placed Into the Context of Our Lives.

[This article is one of a series of articles that Dr. Slavkin continues to publish in JADA. You may receive a copy of the full article by writing to Dr. Harold Slavkin, Director of National Institute of Dental Research, 31 Center Drive, MSC 2290, Building 31, Room 2C39, Bethesda, Md. 20892-2290. We suggest that you also send a personal letter to Dr. Slavkin describing your efforts to get well and urging that research on TMJ be expanded and communicated to the patients. Please send us a copy of your letter.]



The annual meeting of the Jaw Joints & Allied Musculo-Skeletal Foundation, Inc. was held in Boston on October 7, 1997. Attended by 20 directors and advisors, the meeting agenda included reports of committees and the presidents, as well as the election of the Boards for the ensuing year. Directors were informed by an official of the Massachusetts Department of Public Health, that the Department intends to continue the excellent cooperation started several years ago. The financial report included the announcement of a $25,000 gift from an anonymous source, to be used for TMJ research. Dr. Shimshak reported on his continuing work on Phase II of the research on the insured medical costs of TMJ, which will be ready for publication in the near future. Phase I was published in "Cranio" in July 1997. A vote was taken to appoint a committee to study the development of a TMJ Registry. Substantial discussion of TMJ matters in general ensued with much good advice and encouragement supplied by the attendees.



The following article was prepared by Oral Health/Public Health professionals under the auspices of the Jaw Joints & Allied Musculo-Skeletal Disorders Foundation [JJAMD] through our participation with the Massachusetts Department of Public Health. JJAMD's mission is to bring awareness to the jaw joints [TMJ ]to the public at large and to help in the prevention of this common disorder, known as "TMJ" [Temporomandibular Joint Disorders]. This article was written for publication in the "Massachusetts School Health Newsletter." It informs School Personnel about how they can help to prevent TMJ disorders in students through awareness and detection of early signs and symptoms.

The disorder to the TemporoMandibular Joints [i.e. in layperson's term Jaw Joints] is usually referred to as "TMJ." TMJ disorder can spread pain and dysfunction throughout the entire body. This medical disorder is one of the most pervasive, least understood, and most controversial health disorders in existence today. TMJ is now also acknowledged as a component in other health disorders. The following are common sights around the school yard: a student misses a catch, and grimaces; another child impresses friends with her gum-chewing skills; a student is seen biting his lip nervously; another runs outside without hat and gloves on, and immediately tenses and clenches. In each situation, the unique temporomandibular joints [TMJ] are being utilized and often misused in innocence. TMJ injury in school children can be prevented by heightening awareness and education. This target population has the greatest potential to develop attitudes and habits that will ensure the long-standing health of their jaw joints. Why focus on the TMJs? They are the most frequently used joints in the human body. Every time we talk, swallow, or chew, they are being used. They act as a pathway through which all motor and sensory nervous information travels between the brain and the spinal cord. They are in close proximity to the ears, eyes, nose, throat, sinuses, muscles of mastication, and cervical spine. They are unique joints because they must work on both sides at the same time; one side is dependent upon the other side. Trauma during stages of growth may leave permanent damage [e.g. facial asymmetry]. Injury to these joints is complex in its etiology. Efforts must be made to identify and remove risk factors. Chronic TMJ can spread pain and dysfunction throughout the entire body and can often result in depression and anxiety, which are not uncommon sequelae to initial injury. How can you help? Early screening and detection of TMJ problems increases the likelihood of successful interventions. Observe those students displaying any of the "P's", as outlined below:

Parafunction - an important etiologic factor! Look for signs such as grinding or clenching [AM and PM], chewing on pencils, gum, and nails, tongue thrusting, lip biting, playing musical instruments

Posture - avoid head forward [e g. while studying], proper carrying of book bags, sleep positioning, breathing, telephone [teens!]

Protection - intraoral sports guards, helmets, proper diet, exercise, chew evenly, avoid hard chewy foods and oversized sandwiches

Personal injury - contact sports, car accidents [including airbag injuries], playground accidents, tomfoolery play to the head and face, abuse, falls

Pain and dysfunction - audible pops and clicks, jaw locking, range of opening [normal is approx. 2-2 1/2 finger widths] and closing jaw, cheeks, temples, chewing, headache, earache, yawning, talking, jaw muscles, bite

Problems, smiling, laughing.

Pressure - classes, homework, peers, family, lifestyle

Arthritis, osteoarthritis, lupus, migraines, depression, tinnitus [ringing- in the ears], allergies, orthodontic work, joint hyper- or hypomobility, lyme disease, sinus, viral infections [ i.e. mononucleosis, mumps, measles], hereditary abnormalities

Finally, early detection of the "P's" in schoolchildren will go far in the overall prognosis of TMJ. In many adult TMJ cases, direct cause has been attributed to an initial childhood factor [e.g. trauma]. Statistics reveal that, when detected early, successful treatment of TMJ is most likely. This has many economical benefits, not withstanding the physical ones. Furthermore, the treatment modality at this stage is most likely to be conservative and reversible.

If you notice any of the above signs and symptoms, be aware and informed. If the student presents with pain in the jaw joints. or dysfunction, e.g., inability to open the mouth freely, or difficulty in chewing and swallowing refer him or her to a primary care health professional who is qualified to diagnose and treat the TMJ disorder, and/or to refer the patient to an appropriate clinical source. Your early intervention could aid in prevention of further injury and create a healthier outcome for the future of these children.