[ Back to Index ]
|
CHANGING THE NAME:
In The Context of the Canons of Scientific Medicine
by
|
[ Back to Index ]INTRODUCTION The effort to get rid of the name "chronic fatigue syndrome" (CFS) and use a different name instead has gained a great flurry of activity at present, primarily due to the questionnaire put out by the CFSCC of the Department of Health and Human Services, and probably also connected to the plans of Donna Dean (DHHS) and the activities of the name-change committee (another DHHS project).
Thus my comments here, whose purpose it is to reveal my plans for how I'll participate in this activity. However, I'm first setting this within the context of some of the pertinent scientific and historical issues which bear on the need to change the name in the first place and then what makes sense for that name to be.
I hope others will consider what I say here in making their decision about how to deal with the petition, whose deadline is upon us. Or, if they've already sent in the petition, to consider the action I suggest as the only action that will eventually get us the research and care we need. For, the issue isn't the name only. Not by a long shot.
HISTORY AND CONTEXT 1. Like many patients I have, for years now, been concerned about the lack of a vigorous and central body of scientific physicians and other researchers who would take on the responsibility for organizing, making sense of/organizing, evaluating, connecting, and pointing out new areas needed for research into our disease.
2. Thus, while in fact there has been a good bit of research, there has been no central international or national body relating the various hypotheses, determining and suggesting what needs further investigation, raising funds for creative new approaches, or disseminating what information already exists to the rest of the medical practitioners whose special interests were not CFS. In a sense it could be reasonably said that a virtual state of anarchy has existed, with each country and each "theory" emerging and then often either going nowhere or developed within confined circles instead of being embraced, argued about, revisited, incorporated into the work of all scientists involved with this illness.
This violates the requirements of science, whose tenets require that each idea build on the body of extant ideas and data, confirming or rejecting, integrating seemingly diverse or even contradictory results-- out of which is gradually built an empirically-based model or even a competing set of models, whose contradictions must be understood and reconciled. Not easy work but not work that can be overlooked. And with CFS it has in great measure been overlooked, as if every major thinker is minding his or own store and not aware that science has always been more like a global economy!
3. Relatedly, no epidemiological research has yet been done that would allow for the classification and description of the illness, which classification based on empirical observation is fundamental to scientific inquiry. Epidemiology is based on elaborate and close observation and often provides the fundamentals on which new laboratory research hypotheses can be formulated and already extant research can be better understood.
4. In sum, there has what to me (and to others, but not all) a shocking disregard for the basic canons of science in medicine, in an era when scientific medicine has supposed to have reached such heights.
5. The costs of this carelessness (or is it selfishness, or both), this absence of an accountable and excellent exercise of medico-scientific consolidation, communication, and leadership, the absence of the encouragement of new ideas, respect and support of the work of scientists around the world, the failure to integrate and make sense of seemingly diverse ideas, and the failure to make readily available the results of all the science has had the results that many excellent physicians have abandoned ship and patients, who have no choice and cannot abandon ship, go without care, are ridiculed in the halls of medicine.
6. As a result, many patients, thanks to the Internet, have to rely on the research of others to discover the most advanced thoughts on treatment. Some patients maintain websites that integrate more medicine relevant to our disease than anything that has come out of the field of medicine or the halls of governmental health agencies with regard to this illness, though some of it has done what the medical establishment has not, and has integrated and found some excellence and some not-so-excellent material, but at least something to provide relief, hope, and in some few cases major improvement (mostly those in the early stages of the illness).
7. This same disregard for the basic canons of scientific scholarship in medicine has been reflected in these long years, since 1988, when physicians have tolerated the name "chronic fatigue syndrome" despite the absurdity of that name, as a scientific name, as a name that best reflects what we know and knew in 1988, and which has brought such stigma and suffering to patients-stigma that has only worsened their suffering because of its impact on medical care and social support. A name that has also allowed certain physicians to jump to the foundation, without solid research, that CFS is a psychiatric disorder, which presumably they felt there was no extant psychiatric diagnostic name for, with no recognition that people can in fact have a psychiatric illness and a physical illness without one obliterating the existence of the other.
8. This patient is not alone in falling from almost having her doctorate in hand, an exciting job teaching in medicine, an excellent income, to being on welfare and in debt, after going through her savings. And that's only part of the story of losses many of us suffer in addition to the illness, suffering that will never be reversed. Would just one of the physicians who allowed that name (CFS) and the anarchy in the science be willing to go through what I go through every year dealing with welfare bureaucracy to get such pitiful support while undermining my health to get it, or to live as I do, or to have gotten sicker, with a new and serious illness as a result of poor medical care given to those with CFS because of the name and also because doctors devoted to its care sometimes are so zealous in finding a cure for this illness they forget routine issues in health maintenance, as mine did. He was searching for fame in curing CFS and ignored what a doctor who couldn't treat CFS would not have!
9. I don't know how to reverse this state of affairs. I see no evidence that the NIH or CDC does or those CFSCC based committees. None. But at the moment there is a call for a name change--to get rid of the absurd and unscientific "CFS." And it looks as if those few physicians working with the DHHS are still more interested in their careers than in science and care in what they've written about the name (they sorely lament) and said.
10. As with many patients I know that if the work I refer to above would have been done the whole world might decide, based on scientific research more integrated and advanced than now exists, on a name other than "myalgic encephalomyelitis." But the integration, evaluation, the epidemiological studies hasn't been done, making it ludicrous to come up with names focusing on endocrine abnormalities or whatever.
11. What we MUST do is do what the prescient physicians did when they selected "myalgic encephalomyelitis" -- a name whose terms have been in large measure been borne out since by much by research and case depictions, though at the time that name was most likely chosen based on history and symptoms and, as is done in the process of making a differential diagnosis in medicine, reaching into basic biomedical science for the pathophysiology that could best explain, best account for the observations of symptoms and history those doctors carefully observed and noted.
12. For doctors who have long allowed CFS to now object to ME because they haven't found clear evidence brain inflammation and instead select a name that only represents a small part of research that it not integrated with the rest of the research, and absent the classification and observation of epidemiological research is irresponsible scholarship and science.
The criteria associated with ME best depicts every single description of this illness even when this illness has been called ME when empirical work has been done. The case definition associated with the name CFS was an exercise that served the career needs of its authors and had no foundation in the process of science, neither empiricism or in scholarship.
IT MUST BE ABANDONED. It has no scientific or medical rationale. All medical literature that is indexed under that term must be cross-referenced to ME. ME must be adopted so that we can unite with the entire world in naming a disease that until further observation is done via epidemiological research and until further organization is done of the already extant research and further research done which, together, might lead to a worldwide adoption of a name grounded in that research.
CONCLUSION I will send Donna Dean's office her questionnaire back marked with a large "N/A" for "not applicable" on every page. I will attach to it this piece explaining the position I've chosen (and why) along with several others I've written on the topic and those other patients have written on CO-CURE. I will not boycott this questionnaire lest they think patients are apathetic.
If the name change workshop, and/or Drs. Klimas and Komaroff--the two physicians who have been vocal and involved on the name-change issue-- prevail with a new name, different from ME, I will know that for now hope is lost, and we are as we have been for a long time on our own and with no organized committee of scientific medicine for our cause, occasionally finding the excellent doctor to help us and through the word of their patients help others-a status quo ante despite the seem of change.
I urge others not to support the failure of our physicians by providing them with names like "systemic dysfunction syndrome" or allowing us to be tarred and feathered with being "neidy" (as in their bizarre "NEIDS") instead of "fatigued." Or having a name for which there is no consensus and no extant heft of literature.
Donna Dean's work has been criticized by the GAO. She is hardly in a position to lead us, to suggest we be "housed" in some office of women's health. We need people with backgrounds in epidemiology, laboratory research, and clinical research to lead us out of this morass we've longed been plunged into by a failure of huge proportions with regard to this illness. This travesty has for many of us become an irreversible tragedy. Time is beginning to take its ultimate toll for patients, so many patients, while the physicians and public health servants are getting on with their lives despite their frustrations dealing with this illness. Careers and income go on for many, many drop out, some few go under. But all patients are going under, and under irreversibly. And that cannot be disputed.
If money for a new international committee and office of research can't be found I propose tithing, a percentage of income since 1988 from all doctors and public servants who've allowed this monstrous retrograde situation to go on. No, I haven't taken leave of my senses to say this; though given what we've been up against it's a wonder I and others haven't. Brave patients continue to help one another in many different ways, while the medical and social policy establishment bustles around doing little for us except co-opting some of us into thinking they're acting on our behalf.
They must be told: ME it is for now as name and criteria. But along with that must come responsible research and integration of research data, a centralization of ideas, signs of intelligent life on the planet ME so that differences can be understood either as true differences which need reconciliation or differences that really articulate or might once further research is done.
Copyright © 2001 Judith Fleet Wisdom (wisdomjf@aol.com)