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Arthritis Today" Turns Back on TMJ-Arthritis Connection Less Interest in TMJ at Yankee Dental Congress Other Disorders… Other Problems for TMJ Patients Should the Medical Profession come Aboard the TMJ Ship?
Mass Department of Public Health Liaison Takes Shape
JJAMD is pleased to announce that the Massachusetts Department of Public Health [MDPH] has established a Liaison Office for TMJ in affiliation with JJAMD. We had our first meeting with key people on February 5th to help strategize plans to move forward to help educate the public in awareness, prevention, and networking with other resources. JJAMD presented a full-blown documentation indicating the need for a broad-based attack on The TMJ Dilemma to be treated as they do any other Public Health issue. The following is the eight-point-action plan that emerged from this meeting, all of which is already being diligently implemented by the MDPH/JJAMD liaison:
The meeting with one of the Prevention Centers affiliated with the MDPH was very successful. They will be incorporating our TMJ educational materials, which focus on prevention. In addition they will be doing more networking to introduce TMJ preventative information into community programs.
JJAMD BOARD MEETING: JANUARY 1996
We had a very dynamic Annual Meeting of the JJAMD Board. There was a consensus that each Board member could do more active networking with sources they know that could help foster greater awareness of TMJ. Additionally, such networking could help place TMJ on the agenda of a variety of professional conferences held by professional organizations and societies.
We do believe that our June 1995 Conference presented the opportunity for our Board members -- some of whom were panelists -- to comprehend the broader picture of The TMJ Dilemma, and to see the need for the importance of their efforts to help even more in a broader arena and with a broader appropriate perspective for a more immediate and judicious result. It will also broaden the base for others to help effect change.
While none of us will be able to see an immediate impact in the short term, it will certainly be effective in the long term.
Northeastern University Lecture a Success
We conducted a TMJ seminar at NU's "Wellness Center" in December. A good-sized crowd of students and faculty attended and asked good questions. While some had TMJ, there were some who came as a class assignment in Physical Therapy and other courses. If we could replicate this experience at schools at all levels across the country, we are confident we could stop a large segment of TMJ in its tracks.
JJAMD TMJ Conference Tapes Ready - Book forthcoming
Conference video/audio tapes are now ready for distribution. Written transcripts have been sent to all Panelists for their editing. When completed, the proceedings will be published with the help of the MDPH and others. Wide distribution to professionals and the public will be made. The findings from this disparate and distinguished group of professionals should help add to the body of knowledge of TMJ. The panelists discussed TMJ in a manner never before presented; that is, as a medical as well as a dental disorder, and from a public health policy and ethical basis, as well as providing an assessment of the financial and social costs to society as a whole. Both disciplines agreed these elements are needed: rejoin TM Joints to other body joints; create medical model; must work as a team to teach and treat TMJ.
Approbation & Support from Top Researcher
Here is a quote from a leading researcher who attended the Conference. He offered valid constructive observations and criticisms: "Just a note to thank you for presenting the TMJ Public Health Policy Conference. To my knowledge, this was the first such conference on these important issues. It raised awareness of several issues related to TMJ, which have not previously been addressed in a public forum. Of particular importance are the issues of how the patient, the provider, and the insurer are going to resolve the problems we now have. The solution is particularly problematic at this time, because of the lack of vital information regarding what the diseases are. We currently do not have an accepted diagnostic classification system, validated diagnostic methods, nor treatments, which have been shown to be cost-effective. Given the lack of knowledge regarding the path physiology and the lack of evidence for effectiveness of irreversible therapies, it seems to be that the best course is to continue conservative, reversible therapies until we have more knowledge." He went on to say about our "Medical Claims Profile" study: "I believe the work provides important information and should be published. The work has limitations, which should, of course, be identified in the discussion. The data suggest that individuals receiving a TMD [sic TMJ] diagnostic code are heavy users of the health care system. They appear to seek care for a lot of problems. It would be risky to assume that this provides evidence that these other medical problems are related to TMD." He continued on his concerns for children: "I was concerned by the speakers on the program claiming that TMJ is common in children, and that it should be treated and/or prevented. While some children do have signs and symptoms of TMD [sic TMJ], we find it to seldom be a serious problem. I believe there is great risk of aggressive over diagnosis and maltreatment of children, as has happened in the adults. I believe the attached guidelines are still valid, and that children should be spared the tragedy which many adults have had." He concludes with: "Thanks again for a very useful leaming experience, and thanks also for your continued effort to right some wrongs in this area."
Editorial Comment: This letter is so thoughtful and so profound. The spirit in which a top researcher interacted with a study and a conference sponsored by laypeople's efforts, and to be so humble and constructive, helps advance networking at its best and will help foster appropriate knowledge that is so needed. We agree with his observations and criticisms and include them in our own efforts to be more effective.
JJAMD'S Phase-2 Study is Progressing
Regarding our study, "Medical Claims to Subjects with TMJ," from the outset we very openly stated that it had limitations and needed further study. We are happy to say that further study is in process. Our Principal Investigators, Dr. Daniel Shimshak and Maureen DeFuria, both on our JJAMD board, are on the second phase of the "Medical Claims Profile" study, and have incorporated other new input. Dr. Shimshak has taken a 1-year sabbatical from the University of Massachusetts and is dedicating this time to the Study. They have already elicited new and more dynamic information from a major database. We are optimistic that this will further complement this top researcher's concerns. Perhaps down the road, we might be able to collaborate in a next phase with this top researcher. But we are certainly on our way to further our mission to deal with TMJ more realistically, comprehensively, and compassionately. We are constantly seeking a more appropriate body of knowledge about prevention, diagnoses, and treatments. We prize our freedom to "tell-it-like-it-is"--not subjectively nor from a narrow and futile perception.
Letter of Hope from NIH's Office of Research on Women's Health [ORWH]
We had invited and had hoped that Dr. Vivian Pinn, Associate Director of ORWH, would be able to be a panelist for our June 1995 Conference. Through these years, we have been in contact with her, and learned that she very much cared about The TMJ Dilemma and lent her support wherever she was able. Because of the importance of her letter to us of June 19th, it was read aloud at the Conference, distributed to the participants, and then to our Board members. We share it with you, for it falls into that much needed category of hope: "Dear Milton and Renée: Thank you for your letter...and your previous communications, regarding the consensus conference on TMJ...Unfortunately, I am not able to attend this important conference, because of several legislative and other commitments. The [sic]ORWH at the National Institutes of Health [NIH] has been, and will continue to be, supportive of research on temporomandibular joint disorders through grants as well as co-funding the recently released RFA DE-95-002 "Etiology & Pathogenesis of Temporomandibular Disorders", NIH Guide V. 24 No 15, April 28, 1995. Our portfolio of support includes support for the Evaluation of the Reliability of Newly-developed Research Diagnostic Criteria for TMDs, TMD Longitudinal Studies: Clinical/Chronic Pain Syndrome, Temporomandibular Disorders Surveillance instrument, and joint sponsorship of the Chronic Pain Task Force to produce a report of the epidemiology and health care costs associated with certain chronic pain conditions including TMD.
We utilize every opportunity in our documents and in our public speaking to multidisciplinary groups to speak about TMJ and related concerns about recognition, proper diagnosis, and appropriate treatment by all health professionals. I also requested that a recent curriculum survey of women's health in medical schools include TMJ to determine the extent to which this is being taught to medical students. The ORWH fully supports your efforts to enlighten the scientific community to the need for research on temporomandibular disorders. The ORWH and I, personally, will continue to keep TMJ in the forefront of our efforts, and I am pleased that your work will assist us in efforts to expand research that can better elucidate this condition. We would appreciate receiving any materials resulting from this conference. My best wishes for a productive conference, and I very much regret that I am not able to join you. Sincerely yours, /s/ Vivian W. Pinn, M.D. PS: I shall personally mention TMJ during my own speech at the Women’s Health Congress. As you know, our office is not a sponsor of this conference and is not involved in the planning of the agenda, but I shall communicate your concerns with them!"
Editors’ Note: We are deeply appreciative of Dr. Pinn's professional and personal caring and input, and we have told her so. We could only further wish that she would be able to call our health disorder only TMJ, because JJAMD does not subscribe to the newer names and acronyms, which we believe adds to the confusion and controversy and stalls the Medical Profession from becoming involved to help.
Major Hospital Planning Multidisciplinary Clinic
We have been approached to actively participate in this project, and we have agreed to do so. It is too premature to discuss in any detail now, but it falls into the category of "hope," which we all need. It will not be dedicated solely to TMJ, but will be part of a total Medical-Dental model to address many health problems in which both disciplines can jointly participate. The clinic will include physicians, dentists, and others who deal with health care from a broad perspective, and who recognize the importance of listening carefully to and perceiving the patient as a whole entity. This indeed is medicine at its best, and will provide a real step forward in re-connecting dentistry to the practice of medicine from whence it sprang.
MILTON INVITED TO SPEAK AT WASHINGTON CONFERENCE IN MAY
Milton has been invited to be a panelist in the upcoming World Congress on Complementary Therapies in Medicine. This conference is being billed as the first major peer-reviewed conference of its kind and the most comprehensive international conference to date on complementary [sic. alternative] medicine. This subject is growing in importance all the time. The sponsors quote the New England Journal of Medicine, which recently reported that one in three Americans now uses alternative therapies, and that Americans make some 425 million visits to alternative medicine practitioners each year. They spend close to $14 billion a year on alternative health care of which 75% is out-of-pocket. We are only too aware of how much this affects our TMJ population who suffer under the burden of paying for health insurance and are not getting the coverage to which they may be entitled because TMJ in 1996, with rare exception, is still not recognized as a "legitimate medical" disorder. Patients have submitted to traditional modalities, but often without merit nor relief. The quality of their life is denied and they are left with no dignity, and become physically, emotionally, and financially broken. It would be interesting to learn how many of those 425 million visits were made by TMJ patients who learned that alternative therapies were better and less costly than traditional medicine for them.
Healthtouch® Database Widely Used; Expands into Internet
JJAMD's materials can be found on the Healthtouch® computerized system of health information-available at kiosks and in pharmacies and other outlets around the country. Our material will now be available on the Internet as well, due to the contract we signed in January. Health touch continues to attract a very large audience of people seeking information on TMJ. It is a big help to JJAMD, because of free access to information also frees up JJAMD by not having to directly supply costly materials and postage. There are many who send for more information and have become members as a result of this resource.
Less Interest in TMJ at Yankee Dental Congress
The Yankee Dental Congress, held in Boston each year, is one of the largest dental conferences in America attracting over 17,000 participants. For many years, we have attended some of the several courses or workshops always given on TMJ. We are not sure why, but the TMJ subject seems to have become of less interest to the Dental Community for inclusion in this conference this year.
We Have Been Productively Busy
JJAMD has made major progress in the last twelve months, some of which is reported on in this UPDATE. While progress has its own rewards, we must admit it has added to our workload. We find that we are unable to keep pace with the demand on us for a variety of reasons. For instance, everyone at JJAMD has been sick this year or has moved on to other pursuits. It has precluded us from being on time to fill orders and maintain the JJAMD UPDATE timetable. We canceled plans to do our usual fund-raiser, which is the main revenue source for JJAMD. We have not applied for another grant, because of the full-time effort it requires, and the rejection that is still prevalent. In addition, the research monies in Washington are already allocated mostly to NIDR, mostly for pain and psychosocial behavior projects. For instance, the research bill we submit to our Massachusetts Legislature each year for the last eight years always gets support and is approved--until it tries to get out of the Budget Committee successfully. It will be re-filed, but unless a grassroots effort is made to "demand" passage in 1996, its rejection once again is preordained particularly with the current ongoing budget crisis and cutbacks.
So, as you can see from this UPDATE, we have been productively busy on your behalf. We hope you will be able to benefit from the "hope" we have indicated. This "hope" however must be measured against the extraordinary forces that militate against reasonable and appropriately needed humane help for you. We are doing our very best, but your active input is needed to help yourselves. Many of you have provided your stories through the surveys that you have generously completed and shared with us. You will help the future from a base of real patient knowledge when your voice is finally heard. While we will always stay true to our TMJ cause, we cannot promise that our "lonely finger in the dike of unnecessary madness" will be able to always stem the tide of other's more aggressive rhetoric or power.
"Tell-It-Like-It-Is Department"-- Outcome Usually Results in Negative Loss Of Time & Energy
We continue to report out the TMJ progress--of lack of it--as we experience it first hand from both patients in the trenches and the professionals who perceive, judge, and treat our TMJ patients. We are neither pretentious nor subjectively limiting. We do not claim that we "know-it-all," nor do we dwell on the myriad of diagnoses and treatments being imposed on the patients--the majority of them not universally accepted as scientifically sound-as is in evidence in the letters cited herein. Since there is no general consensus on almost any facet of this complex multi-faceted health disorder, which has become even more so, we rarely provide information on diagnosis and treatment quoted from outside sources. We find it futile to choose among selected writings out of the glut of unproved scientific information just for the sake of filling space. Indeed between the two journals dedicated to TMJ and related disorders, one ranks dead last among thirty-three juried journals according to the Science Citation Information (SCI) Journal Citation Reports, and the other isn't even listed. As an illustration of the efficacy of our consumer-friendly educational materials, when "20/20" assigned seven [7] researchers for a 15-minute TV segment, they decided to use our materials, because they found it cut through the chaff of a glut of diverse information, and made the entire TMJ Dilemma understandable and useful to help the public.
We have heard this over and over again from other sources. There are other organizations dealing with newly emerging disorders that provide quality information derived from newly emerging professional journal sources or from popularly touted diagnoses and treatment information. But, without exception, they add "disclaimers". We could do that, but how could we
choose from the glut of still unproved scientific literature? Most of the so-called scientific literature is redundant, biased, technically limited in scope, or not juried. A classic example of the poor quality of most research articles and studies is contained in an editorial in the recent edition of "Journal of Orofacial Pain." The editor gave as an example of his title "The Flight from Science and Reason," a recent scientific review article that was published in the respected Journal "Spine" of April 1995, Volume 20, No. 8S. He notes that it has important implications regarding TMD [sic. TMJ] management. This issue was dedicated to a "Scientific Monograph of the Quebec Task Force on Whiplash Associated Disorders." This is of interest to TMJ patients because whiplash is so often the precipitating cause of TMJ. The distinguished editorial panel of "Spine" included one of the speakers at our June 1995 TMJ Conference. The editorial goes on to say, "A team of 25 independent experts from major medical center in Canada, France, Sweden, and the United States conducted a 4-year study on cervical whiplash. The team reported findings from more than 10,000 scientific articles published on whiplash in the past 15 years and concluded that there was little scientific evidence to justify most existing therapies. ... Further, they found no generally accepted uniform approach for the management of whiplash and that standard therapies are often ineffective and sometimes may even be harmful. It was determined that fewer than 3% [300 out of 10,000] met even minimal scientific standards. It is our professional responsibility to reassess and question our knowledge base and, when new scientific information is forthcoming, be willing to make the appropriate changes. As health providers, we have the professional obligation to assimilate new knowledge that can benefit our patients. Status quo is not acceptable for health professionals who are trusted with patient care. To be unaware, to ignore, or to resent research findings that question clinical beliefs is unacceptable professional demeanor."Almost all TMJ Journal Editorials state how little is known or appropriate and, indeed, postulate that little has been proven in the field of TMJ. It is not our mission to throw a dart at a dartboard to give you someone else's version--which does not reflect you or your needs. We are not comfortable with that role. We advise the public to ask their health care providers for diagnose and treatment information they recommend, and to get a minimum of 2 or 3 independent opinions before submitting to any treatments. We suggest that patients ask to speak to other patients to see what is helping and what is not. We urge them to attend community health lectures and to become part of TMJ or related self-help groups. That is still the best way to learn about what can help and what can hurt.
Two Organizations Interfere with JJAMD's Exclusive Contract to Disseminate TMJ Information
We learned that two "related" agencies had tacitly interfered with JJAMD's exclusive contract to disseminate TMJ patient information materials by claiming that they had better information to provide. We are always amenable to constructive criticism, and we are always ready to listen and cooperate with others who may have good ideas on how to communicate our very difficult subject. We do not, however, intend to allow this heavy-handed attempt to disparage our work. We tried to resolve this issue in a reasonable personal manner, but received an unsatisfactory response, which has necessitated us to turn the matter over to our legal advisors.
We Are Going Onto Forsyth Cyberspace --- Discussions Continue About Research
JJAMD is being hooked up to the Internet system at the Forsyth Center. This will give us access to a huge research and scientific database. It will also allow us to more readily access Medline and a huge bank of other information. In the meantime, we continue to discuss the possibility of Forsyth doing TMJ research. There are some hopeful signs, but it is too soon to be more specific. The promise of TMJ research at Forsyth is not new. As a matter of fact, it is as old as our relationship. On April 27, 1983 [that is 13 years ago], the then Director, Dr. Jack Hein, sent us a letter which included the following: "Thank you for your very friendly letter and I assure you that in our institution's scheme of things TMJ [sic: TMJ was only called TMJ in those days] will be part of the Forsyth firmament. The first step in organizing any expedition into the unknown is to arouse the awareness of those who might help paddle the canoes. This you have accomplished."
He went on to say, "Last Saturday the Boston Section of the American Association for Dental Research held its annual meeting at Forsyth. The topic was "National Dental Health Needs: What We Don't Know." One of the speakers was John Goggins, Associate Director of the National Institute of Dental Research, and his assignment was to describe the research targets of the long-range plan being developed by NIDR. You will be happy to know that TMJ dysfunction will be on the list. He pointed out that one of the first problems would be to arrive at a more definitive diagnostic criteria so that research could be concentrated at specific aspects of the problem." He concluded with an action plan for helping JJAMD and commented, "It is too early to expect a widespread involvement by Forsyth's research staff but we will certainly announce your meeting to them. Over the years I have found that you can lead researchers to the well of new research ideas, but you cannot make them drink until they decide for themselves that they are thirsty for them. We will certainly become involved in TMJ research at some point. This will take time and, of course, it also depends upon how successful we are in helping to increase the NIDR's budget. We will be pleased to have our library run a computer literature search every six months on TMJ for you (and us)".
With all of the hyperactivity of JJAMD through these ensuing 13 years, this letter lay dormant in our files, so that we never held Dr. Hein's promise "to the test." Now we wonder what the destiny of TMJ might have been, if this prestigious institution had "adopted" TMJ as a research priority. Forsyth has been absolutely wonderful to JJAMD in so many ways, but we really just realized that a fully dedicated TMJ researcher never made an entrance within these hallowed walls, despite our presence and interaction. If patience is its own reward, then we hope the reward is now forthcoming. The new President, Dr. James Mulvilhill, has already acknowledged the importance of our work. He attended part of our June Conference, and welcomed the participants. In Forsyth's Winter 1996 issue of "News", it said that: "Dr. Mulvihill observed that the conference had attracted a great deal of interest from both providers and consumers concerned about the growing health problem of TMJ disorders, their costs to the health care system, and the toll they take on those who suffer from them. He acknowledged with gratitude the efforts of Milton and Renée Glass in keeping the problem of TMJ before a broad and diverse cross-section of the medical and oral health research community." He has since seen Dr. Hein's letter, and he hopes that he will be able to elicit TMJ interest and activity within the Center some time in the near future. We hope so, too. We would like to mention that, although TMJ is not yet institutionalized within Forsyth, we are grateful to Forsyth people for moral and mentor support. Dr. Ralph Kent, Forsyth's Senior Biostatistician, widely known and expected in the entire research community, is on our Scientific Advisory Board. Dr. Kent took a personal interest in our work and became a consummate volunteer and mentor to JJAMD. He has generously given us his expertise and precious time from his own overcrowded schedule for our "Medical Claims Study" Phase I and now Phase II. He continues to be a genuine friend to us personally and for the benefit of all TMJ patients. We all owe him a special debt of gratitude, and we would be pleased if each of you dropped him a note of thanks.
National Institutes of Health "TMD" Conference Scheduled for April, 1996
This Conference, called "Technology Assessment Conference on the Management of the Temporomandibular Disorders" is very significant, because it involves so many different NIH Institutes and Offices who will have an impact on determining future research on TMJ. It should have the potential to help all current TMJ patients, and has the potential to help prevent others from unnecessarily failing victim. While we hope these objectives will be met, we are fearful that they may not. Let us try to explain. Perhaps you will agree or disagree with our fears and share your concerns.
Five Questions Will Set the Tone
The promise is magnificent, but we fear that the premise is flawed. The questions that will form the basis of the presentations and discussion are already "cast in stone." This troubles us; because they set the tone and will, by their very nature, result in predetermined answers directed from their limited and/or loaded scope. They will also form the basis for future research on TMJ.
We have been told that the National Institute of Dental Research [NIDR] personnel wrote the five questions. We have examined the questions and discussed them with others. We believe they have been constructed from a vested interest and from a more narrow subjective view than we have as patient advocates. We believe, therefore, that this cannot fully benefit our TMJ patient population.
Remember that JJAMD's mission is to foster knowledge about healthy Jaw Joints, as well as the TMJ Disorders to them. From our experience with the TMJ patients, we find that the majority are experiencing pain and/or dysfunction throughout their entire bodies. To deal with TM Joints, therefore, subordinated to a more vague category termed TMD, i.e. as if it were mostly a female psychosocial-chronic pain syndrome-- and which takes the primary focus off these precious joints--is not appropriate, as most of you know only too well. Our fear is that this Conference could reinforce the more recently touted negative stereotypical subjective viewpoint of a self-generated set of TMJ gurus who have their foot in the door to influence the newer scenario of TMJ towards TMD perception, direction, and research. Since there are detractors to these newer imposed theories, this Conference could disintegrate into a more negative outcome for those who are attempting to bring a positive helpful result. Also, in this form, an opportunity to consider children and men as TMJ patients is precluded, and defers appropriate definitive help when they present for care, if they must fall in line behind a "female stress disorder."Panelists & Advocate Not Now Involved in TMJ
This Conference will include a number of National Institutes of Health. Basically, the Panelists will include mostly MD's and Ph.D.s and a Patient Advocate with no vested interest in TMJ, i.e. they are neutral observers assessing the technology -- whatever that means -- of a serious health dilemma. We have been informed that neither the Speaker nor Panelist Lists are complete. We worry that people, who have no background in TMJ, will not be able to grasp the urgency of the patient's plight nor the magnitude of the prevalence and swirling controversy. While there are many other controversial health disorders and issues that neutral observers have participated in, and in which they were able to bring order out of chaos, none pose as difficult a dilemma as does TMJ, as it still falls between the cracks of Medicine and Dentistry, is not yet legitimized by Medical Orthopedists or Arthritis Foundation as part of their domains, and is ever-changing by the Dental Profession!
There are many other controversial health disorders and issues that neutral observers have participated in to assess and have helped towards resolution, but our fear is that they cannot assimilate immediately the magnitude of "The Great Impostor"--as TMJ has been called. We doubt that they can appreciate that TMJ still falls between the cracks of medicine and dentistry, and is not yet legitimized, as are the others!
"TMJ" Subordinated to "TMD"
The Conference is billed as "Technology Assessment of "TMD". Please bear in mind that JJAMD only uses the acronym "TMJ"--never "TMD"! At our recent Board of Directors meeting, the question was put to us-- "Why is this so important to us? What's the difference?" The difference to us is this: Our mission is to bring awareness to the TemporoMandibular Joints--the jaw joints and to deal with it as a whole body multifaceted medical and dental health problem! As recently as 1982, the American Dental Association [ADA] chose to rename "our" disorder, by dropping the word joints as their descriptor, thereby becoming TemporoMandibular Disorders [TMD]. They have subordinated the jaw joints under a more generalized umbrella called TMD--whatever that is and whatever their reasons. One thing we know for sure, however, is that by dropping the "Joints" from our disorder, they have opened the door to TMJ patients being considered first and foremost "chronic pain" patients with all of the psycho-social and psychosomatic baggage that goes along with that connotation. TMJ is not just a Chronic Pain Condition. It is a neuromuscular-skeletal whole body health disorder involving the jaw joints and the related musculature and surrounding anatomy, Pain may result from the condition and is, therefore, a component of a multifaceted physiologic problem. In many cases TMJ may be limited only to dysfunction with no pain. The TMJ patient, therefore, has a joint problem with the possibility of resulting acute or chronic pain and not a "pain problem" with a resulting joint disorder. To illustrate how this characterization has been misused, one needs to look no further than NIDR's own Pamphlet named "TMD Disorders." The first question, "what are Temporomandibular Disorders" is given as "Myofascial Pain?" This same question is the first question which is "cast in stone" for the Conference. How, therefore, can any speaker answer that question any differently? The basic premise for the Conference, therefore, has also been "cast in stone", and the TMJ patient will be the loser as a result. JJAMD admits to a psychosocial component--but mostly as secondary. Every human being who is disenfranchised in a society will have emotional problems. But it is the separating out this secondary component to TMJ as if were the primary, is the point that we are at odds with those clinicians. The mind-body connection is irrefutably the most talked about advance in healthcare history. It is urgent that clinicians and researchers stop dissecting people.
Structure of Conference
Here is what we now know about the structure of the Conference at this time:
[Note: While we commend such a high level conference to acknowledge the urgent need to address the TemporoMandibular Joints and the TMJ Disorder--a subject near and dear to us and JJAMD-we believe this evidences "the tail wagging the dog, rather than the other way around." The fact that TMJ is being labeled "TMD" is acquiescence to the Dental Profession's rhetoric vs. reality. i.e. "rhetoric" = language that is elaborate, pretentious, insincere, or intellectually vacuous. This rhetoric is reflected in the "questions cast in stone." The Format is similar to a judicial proceeding and peer review, in that speakers will present to a panel that, in turn, will reach conclusions and findings to be publicized by NIH. Speakers will address five pre-determined questions. An agenda will be followed to guide the subjects for discussion.
Panelists: Chair is Dr. Judith Albino, President of the University of Colorado. We have been told that the Panelists, who must have scientific or practical expertise, are non-governmental and non-patient advocate. They will represent the disciplines of Public Policy, Practitioner, Methodologist, Epidemiologist, and non-TMJ Researcher. Panel will include Infectious Disease MD, Medical Surgeon, Immunologist, Psychologist, Neurologist, Pain Clinician, and a non-TMJ advocacy patient representative. They will not have known conflict of interest and are not currently engaged in TMJ practice or research. The voluminous literature will be surveyed. [Editorial Comment--but the literature, at this point in time, is driven by the Dental Profession, NIDR, and ADA, who are technically charged with the oral cavity and surrounding tissues. By charge, education, and training, this limits their ability to deal with all the many other well acknowledged multifaceted health problems affecting TMJ patients throughout the rest of their bodies and their very lives. Therefore this limits the Panelists to assess and deal with TMJ as a whole.]
Schedule by Days.
First day and one-half: Presentations by speakers. Second day afternoon: Panel will caucus.
Third day: Panel will present their findings and hold a press conference. Findings will be published in Journal of American Medical Association [JAMA]-our fear is that it will probably be sans the patient input--as we have experienced in past Conferences in which we have been invited to participate. It is like we were never there!
Public comments [usually not allowed] will be held only during the last hour. We have been told that 40 patient groups will probably be invited to attend and participate. If all 40 were to show up and speak in the one-hour allotted slot, each advocate would be allowed 90 seconds to comment during the public response session. This will almost insure that the Panel will not hear much in the way of patients' needs nor critical dialogue of what has been presented over the course of the two days, and many of the participants will not feel compelled to stay.
Coordinator is Very Helpful
We were impressed with the quality of time the Conference Coordinator took in personally explaining the gist of the Conference, the sincerity of purpose, sending us printed draft material, and asking for our review. In turn, we spent even more time expressing our views and hopes and fears on the phone and in writing. But in the end, the "cast-in-stone-questions" will stand and shape the outcome. We hope that some miracle comes forth to negate our fears and be fully beneficial for TMJ patients and America as a whole.
You Can Help Assure Patient Input
It is our hope that, by sharing this information with you prior to the Conference, you will be able to help on some level to favorably impact NIH. You now have had opportunities to observe the obstacles Associated with getting help for your TMJ. It is important that this Conference reflect the diversity of your experiences and your right for wellness and entitlements in this multi-factorial health dilemma. We should all join in a partnership mission to help JJAMD help you to ferret out TMD rhetoric vs. Your TMJ Reality and to foster appropriate comprehensive research, education, awareness, and prevention beyond psychogenic chronic pain designation. If we have piqued your interest, drop us a line and ask for "Questions Etched in Stone," the Agenda and when available, the Panel members and the Speakers. You may wish to inform them to make a case to dignify you, the patient, even though you are largely "missing" from the agenda.
Should the Medical Profession come Aboard the TMJ Ship?
From our inception in 1982, JJAMD’s mission was to advocate for awareness and knowledge about the JAW JOINTS and TMJ as part of a medical as well as dental paradigm. However hard we have worked for this goal, we realized that, because "Dentistry was the only game in town", by default, we were automatically linked and consigned to the Dental Profession, NIDR, and ADA to be seen and heard. This did not stop us from simultaneously trying to link up with the Medical Profession and their societies. But from 1982 to the present, we continue to find very little interest by the Medical Community to come on board to help on any level, for whatever their reasons. This Conference should serve as the definitive "turning point," but for those questions.
Even if they do not want to get involved with what The Wall Street Journal called: "A Medical Mess" nevertheless, under their Hippocratic Oath they are committed to: "at least do no harm." Therefore, on the most minimal level, the Medical Profession should be helping the public and specifically their patients who all have Jaw Joints. They should be informed enough to be able to educate their patients about the relationship of the Jaw Joints to the rest of the joints in their bodies and the relationship to total health. Even if they do not want to get involved in the "no-win" treatment game, they should educate themselves and their patients of the need for prevention of TMJ through awareness.
In 1996, they should not be able to boast that they never studied this subject in school, never had the responsibility for treating these joints--as they do all other joints--and that it is not their problem. While we observe some minor wind of change in their "curiosity", [and there are those good doctors who are helping quietly behind the scenes], their continued conspicuous absence to participate on any meaningful level, has allowed The TMJ Dilemma to fester even more. The earlier precious moment for them to help a growing and hurting population has not only been lost, and costly, physically and financially to society as a whole, but has further exacerbated the entire TMJ dilemma. It consigns the Dental Profession and JJAMD to "holding the bag" to fill the gap with an increasingly complex and controversial scenario. This is now even overlapping with other newly emerging acknowledged medical disorders admitting to a TMJ component. It is time for the Medical Profession to help serve a growing population of TMJ patients who are lost and sacrificed due to their neglect.
Arthritis Today" Turns Back on TMJ-Arthritis Connection
It is now three years since "Arthritis Today" [AT], the official publication of the Arthritis Foundation [AF], published in its Jan/Feb. 1993 issue, a side bar in its "Quick Takes" section. The side bar said: "Did you know... that the joints of your jaw are a pathway for nerves to and from the brain and the rest of the body? To learn how problems with the jaws, including osteoarthritis, can affect your overall health and well-being, write to Jaw Joints & Allied Musculo-Skeletal Disorders Foundation, Inc. [JJAMD]." This should have been considered a fortunate union of two organizations to finally rewed the jaw joints to all the other Joints in the body that AF includes in their criterion for concern. They had not previously routinely reported on these two joints nor referenced them when giving information to their membership and the broader community.
Unfortunately, the insertion was made without our knowledge, and we were caught off guard when we suddenly found ourselves in the position of handling the flood of requests for information that followed. Over 2,000 requests were received--and we are still receiving requests. We have responded to every request, but it took an enormous toll on our energies and our financial resources. Until recently, we have sent AT hundreds of copies of these requests along with patients' returned surveys, as proof of the need to help their members.
The Arthritis Foundation president, Don L. Riggin, upon hearing of this situation, wrote us a letter on April 26, 1993 saying, "It is our normal practice prior to going to press, to inform organizations that we will list their address. This was not done, and I apologize. As to your request that Arthritis Today publish a patient-useful article on TMJ," he said, "Ann Rossetti has sent for your review and approval, an article on 'TMJ Osteoarthritis often Overlooked and Misdiagnosed." We reviewed this proposed article, which they admitted they "pulled out of an old file", and then a subsequent one that was similar to the first. Freelance writers wrote both. We did not approve of either one. Both were too simplified with a popular orientation [i.e., Mary Jane--a nighttime tooth grinder--awoke with a pain in the jaw, and the good dentist doctor made it go away with drugs and behavior modification-type articles]. From our long experience in dealing with TMJ patients and the public, we felt these articles could not help the patients we knew, nor the members of AT & AF who were already knowledgeable about their other joints, but were heretofore deprived of understanding any connection to their jaw joints. Indeed both articles could have hurt the TMJ patients.
Three Years of Urging But No Article Yet
Then followed a three-year period with input from two of JJAMD's Advisory Board members, one an attorney involved in health matters. Despite promises, it was to no avail. Now, after patiently communicating with them a number of times, we have just received on February 6, a "kiss off' letter from the AF. Among other things, the letter says: "While appreciating your interest in such an article, and understanding your concern, we are also aware that there is a decided difference existing between the type of article that you are requesting and what we are willing to print." [All that we asked of them was to publish a helpful and considerate article, preferably by someone who truly understood The TMJ Dilemma.] "The content of all Arthritis Foundation publications are determined solely by the Arthritis Foundation, although we are open to suggestions and different viewpoints, the decision to place an article on TMJ in Arthritis Today- is determined by the editors and, at this time, they have no plans to do an article on TMJ in the near future."
TMJ Not Even Listed in Arthritis Classification
So not withstanding the AF's President saying they were submitting an article for our approval, the Foundation has now gone back on its commitment to do a responsible article or even a promised Fact Sheet. Sadly, they do not even list TMJ in their catalog along with the 132 separate disorders with an arthritic component. This despite the fact that NIH spends millions of dollars for research involving the TMJ/Arthritic condition.
Our last literature search of our own publications database revealed 205 current articles relating in one way or another to studies on TMJ/Arthritis. These range from studies on juveniles to seniors with all forms of arthritis relating to the temporomandibular joints, synovial fluid, etc.
We subscribe to AT, and we have always recommended our constituents do so. Despite the limitations of information for their jaw joints problems, there is valid layperson's information that is applicable to all joints. This could easily be applied to help the TMJ patient on some level. So we are saddened that this impasse has occurred, and our Board Advisor is again pursuing this matter, but this time he will pursue their obligation with more vigor.
New Arthritis Publication Surfaces
Apparently, we are not the only ones who have become impatient with the AF, whose magazine "AT" seems to have lost its direction moving from what people need and want to know to be informed for wellness, to a "popular-breezy-type" magazine interspersed with lots of advertising. We recently received the premiere issue of a substantial publication called "Arthritis Network" put out by the publishers of the "Fibromyalgia Network Newsletter." The lead article says: "Over the past seven years, we have received thousands of requests from Fibromyalgia Syndrome [FMS] patients for more information on their 'other' painful health conditions, such as OA and RA. We responded by publishing brief clips in the Fibromyalgia Network newsletter about arthritic diseases that commonly occur in FMS, but we could not do them justice." It is now a well-known fact that there is a large TMJ component in a significant number of FMS patients, who are now even linked with Chronic Fatigue Syndrome [CFS] patients. This Newsletter is full of good information about Arthritis... information that the arthritis patient can use to understand the disease and what can be done about it. Importantly, it is information that they apparently do not get in "Arthritis Today."
We wrote to the Editor, Kristen Thorsen, complimenting her on her premiere issue of Arthritis Network, and for the excellent information she supplied to an audience hungry for comprehensive arthritis information, which apparently we mutually agreed was not evident in AT. But, we also expressed our surprise and asked her why she did not include the jaw joints, since they are subject to the same arthritic conditions, as she is well aware. Although we expressed our disappointment that once again the jaw joints were "left out"--even by another patient advocate dealing with joints--we accepted her explanation. Although discussed, they felt Jaw Joints and TMJ disorders, needed a special report of its own. She then invited us to submit an article. JJAMD hopes she follows through, because if patient advocates don't help each other in every way possible, then how can we expect anything better from the broader community, as we both are presently experiencing with AF & AT?
It is mind-boggling to think that with FMS/CFS/TMJ patient populations numbering in the millions, complaining of an arthritic component in their joints, that the AT would not see the financial logic to include them and provide comprehensive and considerate information. We believe that AF & AT are going to lose a lot of their readership and possibly members, and are inviting patient organizations to fill the void they are needlessly creating.
We feel that the enormous financial support the AF gets from consumers and business alike may start to erode if the patients lose touch with that Foundation, because of editorial policies that would deny the TMJ patient with an arthritic joint problem to gain access to information about their arthritic condition. We hope they will come to their senses, publish a TMJ patient-useful article and re-link themselves to all patients suffering with arthritis in all their joints.
JJAMD CHANGES DIRECTION & FOCUS
We have been told, "we can't be all things to all people." We agree with that premise. Therefore, we decided we need to once again change our direction to focus primarily on the public health awareness and prevention aspects of The TMJ Dilemma. The scenario and climate has become more difficult for JJAMD, as our subject moves from the designation "TM Joints [TMJ]" to the ADA's design Temporomandibular Disorders [TMD]," with all the stereotypical baggage attached to this change of perception. TMJ has become ever more linked to the Dental/Mental realm over the years, instead of a generalized medical/dental paradigm as we had hoped, and for which we have worked so long and hard. TMD is limited to the Head, Neck, and Face. Myofascial Pain [MPD] has become the buzzwords to describe our patients suffering from a whole body neuro-musculo-skeletal disorder, with a very large pain component. TMD has opened the door to treatment and research for psychosocial behavior for people who in reality need research into their joints and not their brains. We also believe it is a stretch for TMJ treaters to be considering areas of the anatomy that should be looked at by the established neurologists, otolaryngologies, orthopedists, and others. Although there are some multi-disciplinary clinics already in existence incorporating medical and dental practitioners, they tend to focus on the chronic pain behavioral modification model and limit themselves to the head, neck, and face. In short, we have seen the emergence of the "Dental/Mental tail wagging the Medical dog," which theoretically is schooled to treat patients as a whole body entity!
This has had the effect of compromising our goal to bridge the gap between the Medical and Dental Professions and has made our role much more difficult. We have networked with NIH, FDA, legislators, and other sources that also should be in a position to help sooner. But like the slogan, "When E.F. Hutton speaks, everybody listens," so too does it apply to Medical Profession regarding TMJ. "When the Medical Profession claims that TMJ is not a medical problem, everybody listens to them." It is "like pulling teeth" to explain, re-explain, plead, coax, massage, and hope that those who should be appropriately addressing the very real TMJ health disorder in all its many multidisciplinary facets, would do so. It is very time consuming, very expensive, and very frustrating to telephone, write, and to visit Washington. You have to be prepared to "play their game" of repeatedly going through myriad channels of essentially pleading your cause, creating a groundswell of support from the patients, practitioners, and others to move one inch at a time. Sometimes that one-inch at a time is backtracking. We must admit this is not compatible with our natures, nor with our energy levels. Admittedly, neither have we seen any great movement of the patients themselves to become more vocal in demanding their entitlements and dignity.
We believe that Massachusetts, our home ground, has been the most progressive State in helping to bring TMJ Public Health Awareness to its constituents. Working diligently with our new liaison with MDPH, Prevention Centers, and others, we feel we have found the most progressive niche in which we shall channel our energies in the awareness and preventative education arena. We know that, as former Lt. Governor Evelyn Murphy, PhD. says: "Massachusetts's leadership will become a national model to do what is right and what is possible for TMJ patients all over America."
We also believe that, ultimately, JJAMD's unwavering philosophy will take hold and in the long run--and as Aesop would say: "Slow and steady wins the race." We are very proud that since 1982, we have stayed the course, despite insurmountable obstacles thrown in our path as the pioneer patient advocates clashing with differing and burgeoning ideologies of professionals and others who are intent on proving their own theories and agendas. This has made our "David and Goliath" journey more difficult, but we are also proud of the inroads we have made with those who are helping-some quietly in the background. It will save lives, improve the quality of life of many Americans, and it will certainly help the downsizing of needless high financial costs from trying to cure something that might have been preventable with considerate and comprehensive awareness, education, and research. In the long run, it will prove to have been the right pathway for TMJ patients and all Americans.
Other Disorders… Other Problems for TMJ Patients
There is a plethora of newly emerging health disorders. Many of them are reporting a significant TMJ component. However, most of those others are already being acknowledged as medical or medical with a dental oral component. This is because they are being linked to a genetic, viral, or bacterial etiology and, therefore, are more definable, measurable, and have some parameters. They have attracted clinicians, researchers, and others, who see it as a 'win-win" situation. Some have also attracted funding from pharmaceutical companies because of the use of medicines and over the-counter drugs. TMJ--although JJAMD insists that it is both a medical and dental health disorder and dilemma--has been consigned largely to Dentistry, which, in turn, has largely ascribed TMJ to a Psychiatry/Psychology Psychogenic behavioral stress-related etiology. The bio-mechanical aspects of the jaw joints are subordinated under this perception, and the myriad other symptoms throughout the body--which could easily be ascribed as part of the medical domain--gets lost in the touted "dental-mental" perception.
As an illustration, an article in Men's Fitness January 1996 cites a young man who is diagnosed with Chronic Fatigue Syndrome [CFS]. It says: "Years after its first detection in the early '80s, the medical profession didn't take CFS seriously-doctors would simply advise patients to get more rest and take vitamins. Even when it became clear that the problem wasn't just a matter of stress, overwork or poor eating habits, doctors could provide little help, let alone a cure. Now, however, many areas of treatment look promising." This sounds familiar to the TMJ patient to a point. It detours dramatically, when you realize that at least the physicians did not funnel the CFS patients automatically into a "dental-mental" realm, although CFS patients complain of muscle and joint pain and dysfunction, and many have bio-mechanical oral problems as well! Also, although "A Medical Mystery" the federal Centers for Disease Control and Prevention [CDC] has put CFS on its list of 'Priority One new and re-emerging drug-resistant infectious diseases'." Well, the TMJ patients generally are "resisting drugs" because they are not, per se, infectious disease patients. They are in pain and/or dysfunction from a largely ignored perception of a mechanical and/or arthritic problem that is not curable with drug therapy. Well to our knowledge CDC, along with the AF, and the Medical Profession generally does not acknowledge TMJ on any meaningful level.
This illustration of CFS can be applied to many other newly emerging disorders, which already admit to a large TMJ component; e.g. Fibromyalgia, Tinnitus. Another example is Sjogren's Syndrome [SS]. While not visibly admitting to "the TMJ connection", their patients do receive a lot of oral health treatment by Dentists, which means their jaw joints are in play for a lot of treatment. Still their disorder is classified as a legitimate "respectable medical" health disorder with the health insurance and medical access benefit that provides.
Our conclusion points out the sad fact that TMJ patients are being even more discriminated against when compared to patients presenting with other named health disorders that are difficult to define, classify, diagnose, treat, overlap with many of the signs and symptoms of TMJ, and require a lot of dentistry. We believe that TMJ, at this point in time, is the most unique health dilemma in existence. We also believe that the opportunity to help TMJ patients is even more bleak today, because of the unwillingness of the Medical Profession, the AF, the CDC, and others to come on board to help, even in terms of preventative education or national epidemiological survey. Adding to this, is the fact the Dental Profession continues to change names, acronyms, and perception. Despite our trying to cooperate, collaborate, and work with them to continue to call our disorder simply and historically correct "TMJ" and to acknowledge the many facets of this whole body health disorder--even if they are unable to treat all of the signs and symptoms. They are fueling the flames of confusion and controversy by "taking on the whole ball of wax". We have been very openly vocal to them on these points, and they are often very receptive and polite to our mission, dedication, and passion.
Nevertheless they seem to be caught on a treadmill in pursuit of their own unproved theories. We have told them there is still time to get back on track, and that if they don't, they will ultimately lose the TMJ health disorder as their domain. Many dentists do not agree with their dedicated TMJ colleagues, but they are not being seen nor heard, as are those who have a vested interest. Many well-intentioned dentists have dropped out of the TMJ arena, because it is a "no-win" situation and they cannot use their time fighting windmills, as JJAMD knows only too well. We are also disappointed with our efforts since 1982 to mobilize the TMJ patients. Additionally, others have attempted "to go it alone" on the self-help group leadership level, which has also stalled progress to prove the case sooner.
End Note:
We believe that this issue has provided you with more hope than despair, but it is incumbent on us as mirrors to the TMJ World to reflect truth as we see it through our lenses. As usual, we encourage your constructive insights, criticisms, and sharing your learned information with JJAMD to share with others for mutual benefit. We hope that each of you have found more help towards your wellness. We hope that our new link to the public health sector will be the keystone of a new direction and focus for the rest of America to emulate and which should ultimately bring resolution to "The TMJ Dilemma."