What's In a Name?
JJAMD PARTICTPATES IN INTERNATIONAL TMD CONFERENCE
What's In a Name?
by Milton L. and Renée Glass
Co-Founders and Co-Presidents
Jaw Joints &Allied Muscle-Skeletal Disorders Foundation, Inc.
The following article expresses the viewpoint of the authors only and may or may not coincide with the view of the Board of Directors, Board of Advisors or the Scientific Board of the Jaw Joints Foundation. While we know and work with many good and well meaning dentists and physicians, the sad truth is that the Dental Profession generally, their trade association, governmental research institute and the medical profession as a whole, has either made what the Wall Street Journal calls a "medical mess" of the TMJ dilemma or has ignored it altogether. Either way, the TMJ patient and the health care system is the loser--and therefore so is the public at large, and the public is us.
What's in a name? "That which we call a rose by any name would smell as sweet." (Romeo &Juliet. Wm. Shakespeare.) "Rose is a rose is a rose is a rose." (Gertrude Stein)
While the olfactory organs may be satisfied with any name, as long as the smell is sweet, the same may not hold true for the TMJ patients.... that devastated population for whom the name of their disorder, TMJ, may be the last hope for humane recognition of their pain and dysfunction by the medical profession, the health insurers, their families and friends, co-workers--and even society as a whole.
WHAT'S IN A NAME? --- LET'S START AT THE VERY BEGINNING --- A VERY GOOD PLACE TO START!
This health disorder was recorded as early as Hippocrates, the Greek doctor for whom the "Hippocratic Oath" was named. To this day, and for the millennia, physicians swear an oath to do no harm.
The acronym "TMJ" is almost as old as the modern "popularization" of the disorder itself. For a time it was known as "Costen's Syndrome," after the Otolaryngologist, Dr. James Costen, who first noted the apparent relationship between occlusion and Temporomandibular Joint involvement. It was later generally described as Temporomandibular Joint Disorder, (Dysfunction or Syndrome), or "TMJ" -- the same acronym being given to the disorder as to the anatomical joint itself. The term was used to describe a disorder affecting the Joint, the related musculature that makes the joint work, and the associated structures, ligaments and tissue surrounding these joints.
Our organization is established to help bring awareness and knowledge to the Temporomandibular "joints" their structure, their function, their relationship and importance to the rest of the body, and to make Jaw Joints a household word.
Simultaneous to our formation, the American Dental Association [ADA], coincidentally collides with JJAMD's mission by choosing to drop the word "Joint" from the "Temporomandibular Joint" and the "J" from the acronym "TMJ" for whatever their reasons. The term "Temporomandibular Disorders" and "TMD" begins to become a Dental Profession's "household word."
Also, a variety of other new names and acronyms continue to surface. JJAMD believes that this name changing has further clouded and confused the general public and other professions alike, as to what health disorder they are dealing with. JJAMD believes that we should go back to the term TMJ, the historical name, to help alleviate confusion surrounding an already baffling disorder. These new names and acronyms have not helped to deal with this controversial disorder, and it has not helped to solve any facet of this multifaceted disorder. Additionally, it has not helped the image of Dentistry.
Most, but by no means all, of the Dental Profession now refer to this health disorder as "TemporoMandibular Disorders " and TMD ". An old cliché rings true here -- "if you say something often enough, others will start to believe you." Now others who are listening to the Dental Profession, while the Medical Orthopedic Physicians remain silent about these temporomandibular joints, routinely accepted the newer popularly touted names. This includes the media, as well.
NOTE; From our knowledge, in constantly dealing with the public, we do not know one single patient who refers to her/his health disorder as anything but 'TMJ." We do not know one patient who has been helped or cured by all this name changing. In JJAMD's testimony before the NIH/NIDR Blue Ribbon Panel in January 1993, we literally begged them to "...help stop the madness of name changing and go back to the historical name and acronym to better deal with all of the realities of this disorder if you are sincere in the mission to help foster knowledge, awareness, and to help alleviate 'The TMJ Dilemma' and its terrible burden on society."
JJAMD continues to use only the historical name and acronym -- "TemporoMandibular Joints," the acronym "TMJ" and the household consumer friendly term "jaw joints. "
But this is only part of the story of name changing, for there is more that needs to be addressed.
Concomitant with dropping "Joint" and "J", a more subtle name change had already ensued; that is: Dental Stress now was to become Mental Stress, and with it a whole new concept of the "profile of a TMJ Patient" as a person [read Woman] with an ever present psychosocial behavioral problem-- again for whatever the reasons.
JJAMD from our beginning to the present time has steadfastly resented and resisted these name changes, and continuously bring this to the attention of the Dental Profession and the TMJ patients alike. For our tenacity, we have also been called "tough" and "a threat" to those who, perhaps justifiably, feel threatened by constructive criticism.
We are proud of our efforts to effect change and of our tenacity to stay our course of only calling TMJ "TMJ" while referring to the "Jaw Joints," and dealing with all facets of this multifaceted medical/dental disorder. In so doing, we have always recognized that all the surrounding musculature, connective tissue, ligaments, nerves, and vascular systems are involved as they are with other joints in the body. We have always maintained that the biggest difference between the Jaw Joints and all other joints in the body is that the TM joints must move in five distinct ways and that they are involved with the muscles of mastication. A name change to TMD does nothing to help this dynamic.
THE ADA AND DENTAL RESEARCHERS HAVE LED THE CHARGE TO NAME CHANGING, AND IT HAS DONE HARM TO THE PATIENTS AND THE PROFESSION.
The professions, particularly the Dental profession, [with apologies to those dentists who want no part of this diffusion and confusion] their professional organizations, and governmental research agencies have, over the years, tended to characterize TMJ as a "women's hysteria disease" replete with the things that this stereotypical bias conjures up. The "dental/mental" categorization, as JJAMD calls it, has trivialized the women sufferers as little more than chronic complainers, welfare cheats, workers compensation malingerers and "stressed night-time tooth grinding psychosomatic bundles of nerve endings and snarling hypochondriacs."
At least before this frenzied name changing and psychological profile, the TMJ patients had a single shred of credibility and respectability. That was that they had "TMJ" - an acronym not only of the anatomical joint structure involved in their disorder, but of the malfunction, disease, or disorder to that structure and the structures that surround the joint and cause it to function. In that respect they had at least the dignity accorded to an "Arthritis" sufferer. It matters not if the inflammation resulted from the structures surrounding the joint, or if degeneration had occurred in the joint itself. "Arthritis is Arthritis is Arthritis." An Arthritis sufferer, therefore, is not treated like a TMJ sufferer by any of the professional or societal groups, but with whatever measure of respect is due a legitimate medical infirmity. The TMJ sufferer endures the "implied guilt" that haunts and punishes the patient who is "accused" of psychosocial behavioral conduct. This is accentuated by the term "TMD" which accentuates the mental and psychosocial component as a perpetuating factor to a much greater degree.
WHY THE NAME CHANGE NOW?
Why then have the Dental Researchers decided to change the name of TemporoMandibular Joint Disorders [TMJ] to TemporoMandibular Disorders [TMD]? We are told that it is to better identify an anatomical part, like the knee or the elbow, so that people would know what it meant to have a problem with a whole anatomical part rather than one little inconsequential part like a jaw joint and its related muscles, ligaments and the like. (i.e. TMJ Disorders). Certainly it was not to better describe an existing anatomical structure since we know of no anatomical structure called a "TemporoMandibular." Perhaps someone has discovered a new piece of anatomy called, for example, a "TemporalusMandibulus" or "TM" for short. This could account for a combination of the major muscle group and the largest bone in the cranium. For purposes of this article, therefore, let us assume that the "TMD" is a new structure called the "TemporalusMandibulus" --and the disorder to this new anatomical structure is "TMD." Now, like the knee or the elbow, we have something we can sink our teeth into - the good old TMD. Perhaps it can be entered as a belated offering to the Publishers of Gray's Anatomy for validation. Gray's familiar dust jacket could eliminate the illustration of the Jaw joint anatomy, which would make it ok for a person to have knee pain and TemporalusMandibulus pain at the same time.
The literature is replete with various explanations for this change, none of which make any more sense to the authors than the zany explanations concocted above. Some of these "explanations" follow:
THE NATIONAL INSTITUTE OF DENTAL RESEARCH OF NIH (NIDR), HAS TAKEN TWO CRACKS AT IT OVER THE YEARS.
"Chronic Orofacial Pain Syndromes. Temporomandibular joint pain. The
many names used to describe chronic pain associated with the joint (TMJ) pain
dysfunction syndrome, myofascial pain dysfunction (MPD) syndrome, Costen's syndrome,
cranio-mandibular syndrome-testify to the uncertainty surrounding the etiology
and treatment of this chronic pain problem."
[Challenges for the Eighties. National Institute of Dental Research Long-range Research Plan. NIH Publication]
"Chronic Orofacial Pain. Temporomandibular Disorders. Many names have been used to describe chronic pain associated with the Temporomandibular joint and the muscles of mastication, including TMJ pain dysfunction syndrome, myofascial pain dysfunction syndrome, Costen's syndrome, and, more recently, TMD." [Broadening the Scope. Long-range Research Plan for the Nineties. National Institute of Dental Research. National Institutes of Health.--NIH Publication.]
As a result of the characterization of TMJ disorder as a component of orofacial pain, NIDR has been consistent in keeping TMJ within the boundaries of chronic pain and out of the dysfunction realm from which virtually all TMJ patients also suffer. They also were successful in preserving the special nature of the Jaw joints as the only joints removed from the body's musculo-skeletal system for intramural research.
JJAMD brought this unfortunate oversight to the attention of the Blue Ribbon Panel hearing at NIDR in January 1993, at which our testimony was invited. We were told that we made a difference for we were successful in getting the Blue Ribbon Panel to recommend that TMJ intramural research be shared in a new clinic with the NIH's Institute of Arthritis and Musculo-skeletal Disease, although the authors will be little known or long remembered for having caused it to happen. Maybe now, at least for the NIH intramural research program, the jaw joints will be considered like any other joints in the body. [Report of the Blue Ribbon Panel on Envisioning-- the Future of the National Institute of Dental Research Intramural Research Program. National Institute of Dental Research. March 1993.]
SOME EXPLANATIONS ARE WRITTEN IN STRANGE TONGUES.
A recent article in JADA (Journal of the American Dental Association) "clarifies" the naming situation in "Yogi Berra" English............."Temporomandibular disorders encompass a group of musculo-skeletal conditions that involve the joints, the masticatory musculature, or both. In any given patient, there may be several overlapping TM disorders, an orofacial pain condition mimicking a TM disorder or a concomitant TMD and non-TM disorder. The differential diagnosis becomes extremely important." [ed. note.. the preceding sentence is reproduced exactly as printed.] [Current Status of Diagnostic Procedures for Temporomandibular Disorders. Norman D. Mohl, D.D.S., Ph.D.; D. Carl Dixon, D.D.S., M.S. JADA, Vol. 125, January 19941
POPULAR AND PROFESSIONAL PUBLICATIONS ARE CONFUSED BY THE NAME CHANGING AND IN TURN CONFUSE THEIR READERS.
The popular magazine American Health is presumably read by millions of Americans. They too recently took a shot at the name dilemma and remarkably, told us how the TMD is often operated on surgically. This provides, at least, a recognition for the new anatomical structure we just named the Temporalus Mandibulus. The article says, "One often overused form of TMD surgery is arthroscopy, a minimally invasive procedure that enables surgeons to reach and repair the disk via tiny scopes." Up to now, disk surgery has always been referred to as "TMJ" surgery, considering that it is the temporomandibular joint being operated on. Operating on a TMD must have been an exhilarating experience for the oral surgeon, especially since that anatomical structure was invented in this article. In a side bar to the article the author ruminates about a celebrated jaw joint implant victim -- "Over time, she developed painful clicking in her jaw and severe headaches, subsequently diagnosed as temporomandibular joint disorder (TMD). After years of treatment and 20 surgical procedures, including two jaw implants....." Now we have Temporomandibular Disorder anagram as TMD, and again surgery not for a TMJ Disorder but for a TMD Disorder. One wonders if the implants were intended to repair an over-used muscle or a bad behavioral problem rather than a degenerated joint. American Health could be passed off as just another popular "junk" health magazine, but the surgery issue really heats up when TMDiary, an official publication of a dental TMJ/TMD Academy, advertises TMJ video tapes from their second midwinter meeting at Palm Beach, Florida. Included in the listing of videos is one entitled "Use of Laser Arthroscopy in TMD Treatment - Indications for its Use and Post Operative Results." Tabers Cyclopedic Medical Dictionary defines arthroscope as "an endoscope for examining interior of a joint." What in the world is the dentist doing examining a patient with an arthroscope and engaging in post operative treatment if it is not to repair the joint [TMJ]? Maybe he is going after the "behavior muscle" which appears to be part of the TMD.
OH YES! BEHAVIOR IS USUALLY LINKED TO TMD - BUT IS THAT A REASON TO GIVE TMJ A BAD RAP.
American Health magazine quoted a prominent government health official as saying "the term TMD actually encompasses a wide range of neurological, muscular, behavioral and mechanical disorders with no single cause or single treatment." Once again, one wonders that if the behavioral problems involve, let us say, schizophrenia or another psychosis why the patient isn't called a "mental patient" and not a "TMD" patient. If, on the other hand, stressful clenching of the teeth and consequent pressure on the jaw joints or associated muscles results in facial pain related to the TM joint and the muscles of mastication, why isn't the patient suffering from temporomandibular joint disorder [TMJ] -- a perfectly "respectable" disorder not requiring institutionalization, notwithstanding the fact that the patient is frequently a woman. Could it be that those dentists have found still another lucrative practice enhancement in the kind of psychological tests and behavior modification often administered to TMJ patients ... sometimes before the practitioner will accept a new patient? Or, could it be another smokescreen to cover iatrogenic causes that seem to so frequently become involved in TMJ treatment.
Could it also be that the type of behavioral problems really associated with TMJ are only "every day" problems, such as a physician hyper-extending the jaw joints during medical procedures. Perhaps the patients are hyper-extending the joints when eating huge sub-sandwiches? Or, possibly, bad behavior in allowing the dentist to perform extensive dental work without allowing a rest period during the hyperextension of the jaw joints? As long as the dentist has become an amateur psychologist, there would actually be much more economic gain by treating Type A cardiovascular patients. Alas, this has not caught on to dentistry yet because the "greedy treating physicians" are reimbursed for these cases through health insurance and want these mental patients for their own. The TMJ "mental patients," however, are readily referred to the dentists by the physicians who want no part of TMJ. [Quotes are from "Jaw Pain, " by Cathy scars, American Health, November 1993, P. 62].
Behavior has been the primary source of grant money for a large number of "dental scientists" who publish voluminous and ubiquitous studies on the psychosocial component of TMJ, and other "research" on the stressed out women TMJ sufferers. Of course, behavior and psychosis have been suggested from time immemorial in diseases ranging from Alzheimer's to Ulcers. One by one as the virus or bacterium is isolated, and the DNA is identified, these "mental giants" of research have been discredited. TMJ as a newly popular disorder has attracted its share of amateur psychologists (usually dentally trained), and only recently has there begun to appear studies discrediting their findings that women TMJ patients are really "mental cases" who inflict pain upon themselves by grinding their teeth in their sleep.
For example the Spring/Summer issue of "TMJDiary," contains an article entitled "Bruxism: Is Origin Occlusion or Psychogenic? The author quotes from a review of the literature by Faulkner "little work had been attempted to document bruxism in a scientific manner until Dr. Bernard Jankelson reported in a study entitled "Physiology of Human Dental Occlusion." The author suggests that a study in which bruxism was artificially created immediately in patients provided with a thin film of acrylic element over one or more of contacting teeth, "indicates that the fact that bruxism can be produced artificially in patients may mean that it could be reduced or eliminated in others without altering the person's behavior." He goes on to cite other studies that question whether bruxism is related to behavior. Now, if the amateur dental psychologists lose Bruxism as a primary behavioral problem related to the onset of TMJ, it will mean the same type of catastrophe as the Celtics losing Larry Bird. What will they have to rely on next? Perhaps it will be the fact that nasty women always screw up their faces when they berate their dentists for grinding down their natural dentition to effect the "perfect smile" and put them into a chronic TMJ condition for life, as happened to one of the authors of this article.
IN SOME CASES THE NAME CHANGING HAS BEEN INTENTIONALLY IGNORED OR RIDICULED
In a new book, written by a TMJ patient the question of, "What is TMJ?" is answered somewhat peripatetically by saying, "Technically, the term "TMJ" refers to the temporomandibular, or jaw, joint itself. TMJ disorder refers to problems with those joints. To avoid confusion, medical professionals now refer to the disorder as TMD, or temporomandibular disorder, and use "TMJ" to identify the joint or joints alone. Since so few people have any idea what TMD means, however, we opted to stick with the old term, TMJ, throughout this book." The author is poorly served by a dentist writing in the Preface "TMJ properly stands for temporomandibular joint the neuro-muscular "hinge" connecting the moveable lower jaw to the skull. But "TMJ" has come to be used to describe a confusing and non-specific muddle of conditions and symptoms, all allegedly caused by a malfunction of the TM joint. Since the joint is rarely the cause of these symptoms, many prefer the term "TMD" (temporomandibular dysfunction)." Therefore it is plain to see that a confusing and non-specific muddle of conditions is much better described with an quasi anatomical structure [TMD] than with a disorder to a legitimate anatomical structure (the temporomandibular joint) which is moved by the surrounding musculature and ligaments, all of which could be contributing to the pain and dysfunction. Why?
THE UNIVERSITY OF CALIFORNIA AT BERKELEY WELLNESS LETTER is perhaps one of the last place one looks to for topical humor. Yet, they found this whole name changing business quite confusingly amusing. "In a linguistic upset you may have overlooked, temporomandibular joint (TMJ) syndrome was recently re-christened temporomandibular disorder (TMD). The new moniker, it was hoped, would more accurately reflect the complexity of the disorder. Either way, the jaw-breaking term refers to jaw trouble: a grinding or clicking sound, plus pain or discomfort when you open your mouth-a feeling that your jaw has come unhinged." Very Funny!
EVEN A PATIENT ADVOCACY ORGANIZATION IS GETTING ONTO THE "TMD BANDWAGON" SO AS NOT TO BUCK THE PROFESSIONS AND THEIR AGENCIES.
Such is the case with a 'self-help ' pamphlet issued by such an organization. The pamphlet is titled TemporoMandibular Joint Disorders. The TMJ letters are bold faced so as to bring out the fact that they are talking about TMJ, and not some other disorder. We are intimately familiar with this technique since we popularized this logotype some years ago to feature the "TMJ."
The pamphlet explains that "TMJ stands for Temporomandibular Joint, or jaw joint." It then goes on to use TMD and TMJ interchangeably even using TMD when referring to the Joint. The readers must be dizzy trying to figure out which disorder is which.
The same organization publishes a newsletter named The TMJ Report, which is dedicated to "TMJ sufferers around the country." We have yet to see a reference to "TMD" in this publication, so one wonders to whom the self-help pamphlet was directed.
JJAMD sympathizes with the advocacy agency trying to curry favor with the powerful name changers. When we submitted a proposal to the American Fund for Dental Health for a TMJ Conference we receive an "excellent" score by one reviewer. The second reviewer gave us a bad rating citing the fact that we had used "TMJ" instead of "TMD" to name the Conference. The fact was, as stated, that the Conference was to be built around a study of TMJ reimbursements for treatment. To have used TMD would have compromised the source material of the study, which was reimbursement for the TMJ diagnosis code. Such is the paranoia that exists about this acronym.
A PHYSICIAN AND DENTIST TEAM TAKE A CRACK AT IT
An Otolaryngologist, who co-authored an article with his dentist father [whose bio reads "an internationally recognized authority on TMD"] titled his article "Diagnostic Clues to Temporomandibular Joint Disorder". [Hudson Monitor, April 25, 1993 p. 49-52].
The article is arranged as a series of Questions and Answers. In the first answer the authors bravely launch out with an answer to the question, What is Temporomandibular Joint Disorder? Their joint response to the Joint question is: "Temporomandibular joint disorder (TMD) describes impaired or abnormal articulation of the temporomandibular joint (TMJ) for whatever reason. This term replaces other terms seen in previous literature, such as "TMJ syndrome" "TMJ Dysfunction," or "myofascial pain disorder." Now isn't that like a physician -- cutting surely and swiftly to the bone. In one fell swoop they swept away any trace of TMJ that even the ADA was loath to do by using TMJ as a sub-classification. Nonetheless, the good doctors proceeded to use the term TMJ 20 more times in the article, blithely interchanging it with TMD whether describing a joint or a myalgia. So much for straightening us out in the first paragraph.
AND FINALLY, EVEN THE SCIENTISTS HAVE FALLEN INTO LINE.
At a recent scientific enclave on "TMD" at which we were invited to participate, there were abundant references to this new anatomical structure called the Temporalus Mandibulus. One scientist referred to an "injury to the TMD" while another said that "TMD is a chronic illness." This latter remark shook our confidence a little bit because after having taken the trouble to invent the new anatomical structure, we were not aware that we had created a new chronic disease entity as well. Having thought about it for a little while, however, we know of some people whose knees hurt every time it rains, which sounds pretty chronic.
ARE THE MUSCLES OF MASTICATION, WHICH TURN TMJ INTO TMD REALLY SEPARABLE FROM THE FUNCTION OF THE JAW JOINTS?
While all of the above might cause one to question whether there is actually any relationship between the temporomandibular joint (TMJ) and the muscles of mastication, the famous medical illustration book by Dr. Frank Netter actually pictures the muscles of mastication and the text states "The muscles of mastication all pass across the temporomandibular joint. They are the major muscles, producing the other movements allowed at this joint." Lo and behold, the joint does not operate without the muscles of mastication and the muscles of mastication are useless if they don't move the joint. So, this gets us right back to the point of this article. We continue to maintain that whether or not there is any dislocation or degeneration or arthritis in the joint, or whether the problem is that something has happened to the muscles, ligaments, tendons or anything else that causes pain and/or dysfunction to the joint, [which functions every moment of our life], or to the surrounding structures, you have a TM joint problem. [TMJ]. On the other hand, if you have neurological or behavioral problems that is causing your pain, you probably don't have TMJ, and should be examined for a psychosis or, for example, Fibromyalgia, or Chronic Fatigue Syndrome.
Why is it, therefore, so important to the dental profession to divorce the muscles of mastication from the Temporomandibular joints when describing the TMJ disorder? The answer, far from Blowing in the Wind, we suggest lies in the desire of the professions to disassociate themselves from the Joint and involve themselves in an oblique and fuzzy area of treatment involving, as the government health official was quoted to say, neurology, behavioral medicine and treatment of muscle disorders.
This adds to the dental practice, understandably, a large medical component and helps to insulate the practitioner from the practice of TMJ for which there is no agreed scientific treatment and no known cure to date. There are a lot of malpractice suits, however.
THE NAME CHANGING IS SERIOUS TO THE PATIENT EVEN THOUGH IT SEEMS NOT TO THE PRACTITIONERS OR RESEARCHERS.
Is the name changing serious to the TMJ patients and future TMJ patients? Absolutely! The obfuscation further distances the patients from health insurance reimbursement for a medical problem. It changes the character of their disorder from one that a little is known about to one that nobody knows anything about. It also robs them of their self-respect for a medical problem that could at least be diagnosed - to a dental problem involving their mental health, psychosocial behavior and a bunch of other concocted nonsense.
WHERE IS THE MEDICAL PROFESSION?
We have urged, and others should demand, that the Medical Profession come out of hiding and take a stand to help alleviate this devastating medical dilemma.
The medical profession is essentially invisible in all of this "having abrogated the Jaw Joints to the Dental Profession because they find TMJ too difficult," according to American Health Magazine.
If the dentists, therefore, are charged with the responsibility for the joints, and are filling the void created by the physicians, then shouldn't they be called "Orthopedic Doctors?" And, since those treating dentists are overlapping with the fields of neurology, psychiatry, psychology, head, neck, face, shoulders and other body parts, shouldn't they really be called "Medical Doctors?"
THE TIME FOR CHANGING IS NOW
The time for changing back to TMJ or to use a more descriptive and "patient friendly" term has arrived. We urge the dental profession, and the dentists- psychologists, researchers, medical writers, the NIDR, and the ADA, to regain their equilibrium and to think of the patient first and at least stop doing harm to them. Or have we misread the Hippocratic Oath?
JJAMD PARTICTPATES IN INTERNATIONAL TMD CONFERENCE
JJAMD was invited to participate in a special conference called by NIDR in cooperation with the Arthritis & Musculo-Skeletal Institute. The meetings were held near Baltimore on April 17-20. Renée and Milton Glass, co-founders, and Tamara Hemingway, Executive Director attended. At the start of the conference, Dr. Harald Loe, director of NIDR, graciously singled out Renée and Milton and JJAMD as one of the motivating forces towards the development of this conference.
The purpose of the conference was to hear from scientists on the state of the
research, and to develop and identify research priorities for the future. Break-out
groups met to focus on distinct scientific agendas and to prioritize their "wish
list" for future research efforts. Milton and Renée met with the epidemiology
group, while Tamara sat in with the muscle research group. The results of this
effort will be distributed to the attendees and published.
A wide ranging group of presentations were made covering diagnosis, treatment,
related disorders (e.g. Fibromyalgia) and surgery. The disagreements and lack
of consensus that always characterizes meeting such as this, (whether patient
or professional) was apparent throughout the meetings. This was particularly
apparent in the surgical area where open hostility was obvious between the scientific
researchers and the surgeons. There was also, in our opinion, an over emphasis
on the psychological and psychosocial aspects and not enough on treatment.
Milton was invited to give a brief overview of the patient advocacy aspects and emphasized the need for the scientific community to get together with at least a preliminary set of protocols, non-invasive treatment regimens, and agreed preliminary diagnostic criteria. He emphasized that it is the profession as well as the patient who suffers from the continuing lack of consensus and lack of direction in what is perhaps one of the biggest health problems in the nation today.