"The term[s] 'fatigue' and 'chronic fatigue' never existed in this entity until it was put into [the name] in 1988. The whole concept of fatigue has warped our understanding of this illness." Byron Hyde, M.D., The Nightingale Research Foundation, Ottawa, Canada

"This illness is to fatigue what a nuclear bomb is to a match. It s an absurd mischaracterization." Laura Hillenbrand, Bestselling author of Seabiscuit

"Patients are united in their dislike of the term 'fatigue.'" Thomas Hennessy, Jr., RESCIND, Inc."

ABOLITION OF THE FATIGUE INDUSTRIAL COMPLEX

The M.E. Society holds that studying any disease under "fatigue" is a priori inaccurate. There is no such disease as fatigue. It is a mere symptom of many diseases and a normal physiological state of healthy persons. Labeling a severe disease as "fatigue" was a government invention meant to obscure reality and lump the sick and the not sick together, and fatigue has grown into an industry that has been utterly destructive to patients. Monied disability insurers are one force behind this destructive Fatigue Industrial Complex, which has virtually taken over, even among the well meaning. Researchers in journal articles often lump and discuss the neurological condition ME/CFS with the label of "chronic fatigue" by placing "chronic fatigue" in titles of articles on even such topics as dysautonomia and orthostatic intolerance. This must stop.

No disease, whether psychiatric or non-psychiatric, should be studied under "fatigue," "chronic fatigue," "idiopathic chronic fatigue," "chronic fatigue syndrome," or "chronic fatigue immune dysfunction syndrome." If a person has depression, a serious disease in its own right, he or she should be studied and treated under depression, not chronic fatigue. If persons have phobic avoidance, they should be studied under phobias, a type of anxiety disorder, not chronic fatigue. If persons cannot stand up without relapsing with many symtoms or without fainting or without developing tachycardias, then they should be studied under neurological and neurocardiac conditions such as dysautonomias or myocardiac conditions such as cardiomyopathies. If persons relapse with a painful multitude of symptoms due to exertion, these patients should be studied under M.E., not fatigue. In fact, we beg an the M.E. Society to offer patients and researchers a conceptual framework with which to discuss the disease without use of the term "fatigue." See our Definitional Framework.

Use of "fatigue" is what has led to the lumping of heterogeneous patient populations together for study, preventing researchers from finding consistent biomarkers. This has led to the view, held by Dedra Buchwald, for example, that the disease is a problem of "perception of effort." Studying precise subsets based on neurological, neurocardiac, myocardiac and other findings should help establish biomarkers for each subset, as Dr. Lerner, for example, has shown us that we can do. Although the Name Change Proposal does not yet establish these more precise subsets, and only lists broad selection criteria, the new model is consistent with promoting research that will drive the establishment of further subsets (e.g., chronic mononucleosis EBV cardiomyopathy), and abolishing the fatigue model is the key to this process. Fatigue has been a mechanism of obfuscation.

We support the document so long as the sentence remains stating that the name "CFS" can no longer be used, which we interpret to mean that "CFS" will not be used either for research articles or for diagnosis, and the CDC will no longer be able to title their Fukuda document "chronic fatigue syndrome." Publications comparing this criteria to other criteria must refer to it as NDS-Fukuda. M.E. and Gulf War Syndrome will be recognized separately.

What is most important about a name change is the name that research articles will be on, and these names need to be consistent with the diagnostic terms. It would be absurd for patients to be diagnosed with M.E. or NDS while volumes of research articles continue on "CFS." We applaud the Name Change Workgroup for eliminating the CFS term from the criteria, Fukuda, that is frequently selected by many researchers. Elimination of the CFS term from Fukuda will strongly foster and encourage researchers to select the other, better M.E. or Canadian criteria for publication, because researchers will no longer select Fukuda out of inertia because of its association with the name "CFS." Abolishing the term "CFS" further marginalizes the weak Fukuda criteria and promotes the prominence and selection of other, better criteria. Further, researchers should be elated that the word "fatigue" does not ap pear in any of the subsets in the new model, because their work gets ridiculed a priori and not even read by the average physician when the word "fatigue" appears in the title of their articles.

We are, however, somewhat concerned that the excellent Canadian criteria, which is likely the best case definition so far on the disease and likely selects not only the sickest but also most homogeneous population of patients, and also takes into account some of the more recent research on the illness, is still associated with the CFS term via ME/CFS. However, we are hoping that once the document gets passed and the term CFS is dropped from general use, it will eventually drop off of the Canadian criteria as well.

We also interpret the document to mean that, not only will "CFS" no longer be used, but "chronic fatigue," "chronic fatigue immune dysfunction syndrome," "fatigue," and "idiopathic chronic fatigue" will in no way be associated with this new disease model. As we have said, there is no such disease as fatigue, although there is a serious disease mistakenly called "CFS" which has been mistakenly lumped with the non-disease of chronic fatigue via the name. We are hoping that this new model will completely abolish and replace the fatigue model. We support it, but only insofar as the fatigue model continues to be abolished, and only insofar as government officials do not try to reinsert "fatigue" into the new model and do not reinstate their Fatigue Industrial Complex.