Opinion The Disease Loophole: Index Terms and Their Role in Disease Misclassification, 2024, Roberts

Dolphin

Senior Member (Voting Rights)
https://academic.oup.com/jmp/advance-article-abstract/doi/10.1093/jmp/jhae006/7616027

The Disease Loophole: Index Terms and Their Role in Disease Misclassification
Alex N Roberts
The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine, jhae006, [URL]https://doi.org/10.1093/jmp/jhae006[/URL]
Published:

28 February 2024


Abstract

The definitions of disease proffered by philosophers and medical actors typically require that a state of ill health be linked to some known bodily dysfunction before it is classified as a disease.

I argue that such definitions of disease are not fully implementable in current medical discourse and practice.

Adhering to the definitions would require that medical actors keep close track of the current state of knowledge on the causes and mechanisms of particular illnesses.

Yet, unaddressed problems in medical terminology can make this difficult to do. I show that unrecognized misuse of “heterogeneous,” “biomarker,” and other important health terms—which I call index terms—can misrepresent the current empirical evidence on illness pathophysiology, such that unvalidated illness constructs become mistaken for diseases.

Thus, implementing common definitions of disease would require closing this “loophole” in medical discourse.

I offer a simple rule that, if followed, could help do just that.

ORIGINAL RESEARCH

Keywords: biomarker, definition of disease, disease, chronic fatigue syndrome, heterogeneous
 
After providing some background on the illness construct “chronic fatigue syndrome” (CFS), which I use as a key example in the remainder of the article, I show that misuse of index terminology has helped create the false impression that CFS and certain other unvalidated illness constructs are diseases—with troubling scientific, humanitarian, and political consequences. I conclude by suggesting a simple rule that, if followed, could potentially close the index term loophole in practice.

The simple rule —

Thus, a necessary condition for calling some state of ill health a disease, or treating it as such, is that it be linked to some identifiable, characteristic pathophysiological disturbance, be it a cause or mechanism. For convenience, I use the term “minimally validated” to refer to an illness construct that has met the necessary condition stated above—that is, that has been linked to an identifiable, characteristic pathophysiological disturbance—and is thus a legitimate candidate for being classified as a disease.

So, like post-exertional malaise then? As demonstrated uniquely by deterioration on repeat cardiopulmonary exercise testing and reduction in VO2max/AT. A physiological measurement that can not be faked. Sounds at least minimally validated to me.

This paper will age as well as Dorian's picture, though I suspect (and of course hope) over a much shorter timeframe.
 
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Also I've made a slight edit here —

Modern medicine’s reductionist orientation has facilitated the identification of innumerable pathophysiological processes that would likely not have been uncovered if explanations relying on humors, spirits, temperament, [psychosomatic illness] and other non-physically-defined entities were still considered adequate. These knowledge advances have profoundly improved our ability to prevent and treat illness.
 
This paper will age as well as Dorian's picture, though I suspect (and of course hope) over a much shorter timeframe.

Possibly a negative timeframe as it turns out.

This paper's abstract said:
I show that unrecognized misuse of “heterogeneous,” “biomarker,” and other important health terms—which I call index terms—can misrepresent the current empirical evidence on illness pathophysiology, such that unvalidated illness constructs become mistaken for diseases.

It's probably worth pointing out that it was published a week after the NIH study. The concluding sentence of that abstract is literally

NIH said:
Together these clinical abnormalities and biomarker differences provide unique insight into the underlying pathophysiology of PI-ME/CFS, which may guide future intervention.
 
This is very confused. It starts out by saying that it's not realistic to require a known pathology for every illness, because it's just not feasible. And this is known, especially in toxicology, sometimes you need to know what a patient has come in contact with or you'll simply never be able to do something about it.

But their main argument is that an illness is only an illness if it can be traced back to a known pathophysiology, something that is, as they start with, not realistic? Which happens to be... the current standard. Do they know that? I guess they must know that given the premise. And of course in the case of all chronic illnesses, including ME/CFS, which is singled out, there is plenty of minimally validated evidence, just not a unique biomarker that differentiates from all other diseases without working with patient history and symptomatology.

Whatever, sometimes people just like to sound smart about things they barely understand and this series of words in a particular order can be ignored without much care or consequence, but this is damn weird.

One again I would like to introduce my novel idea of: the wheel. Never before seen, never before used, never before imagined. Give me royalties.
 
Do they know that? I guess they must know that given the premise.

Paper said:
This shift in CFS’s status is surprising. CFS has never been minimally validated with any pathophysiological findings that would justify treating it as a disease. Nor has “CFS” even been defined in a stable way. Radically different CFS case definitions are currently in use (Holmes et al., 1988; Fukuda et al., 1994; Carruthers et al., 2003; Institute of Medicine, 2015). Thus, while the suffering patients’ experience is certainly real (unless we assume malingering, a hypothesis for which I have seen no evidence), there is little if any epistemic basis for saying that this suffering stems from a distinct “CFS” disease.

One might argue that this only disproves my contentions about minimal validation: An illness construct need not be minimally validated with some unique pathophysiological finding before it is deemed a disease. This does not seem like an adequate explanation. Researchers regularly emphasize that the cause of CFS remains unknown and that no characteristic abnormalities have been identified in patients meeting the case definition. Why mention these null findings over and over again if there is no requirement of minimal validation—especially when doing so only weakens the argument that CFS is a disease?

The discourse on CFS seems much more consistent with the proposition that the criterion of minimal validation has remained relevant, but has somehow been bypassed in the case of CFS.
 
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