The two main clinical forms of the disease are the spinal form (70% of cases), which begins with limb involvement, and the bulbar form (30% of cases), which begins with involvement of the muscles of the mouth.
Three to five years after the first symptoms appear, only half of sufferers are still alive (specialists say the "median survival" is three to five years).
A pathology often described as "the worst disease of all".
The starting point for our philosophical investigation of ALS is the study of the discourses that give it a unique status among diseases.
It is described in terms such as "the worst disease" (e.g. in Antoine Sénanque's Blouse), "the cruellest disease" (e.g. in the press), "Charcot's most brilliant discovery" (e.g. in Charcot: un grand médecin dans son siècle), "the most common rare disease" (e.g. in an episode of France Culture's La Méthode scientifique) or "an exemplary disease" (e.g. in an article by clinical psychologist Hélène Brocq).
The risk of spreading misinformation and stigmatizing patients...
Yet these formulas can have deleterious effects that philosophy can help identify. They can contribute to the dissemination of erroneous ideas about illness and the state of knowledge and practice in this field, to the stigmatization of patients, and to mistrust of conventional medicine.
They can also convey a questionable conception of the nature of knowledge, medical practices and the roles of care, as well as the fear of caregivers in dealing with such an illness, and a mistaken conception of the history of medicine... (see "Scientific Plurality and Amyotrophic Lateral Sclerosis (ALS): A Philosophical and Historical Perspective on Charcot's Texts" by Anne Fenoy, forthcoming in Journal of the History of the Neurosciences).
Yet these formulas can have deleterious effects that philosophy can help identify. They can contribute to the dissemination of erroneous ideas about illness and the state of knowledge and practice in this field, to the stigmatization of patients, and to mistrust of conventional medicine.
They can also convey a questionable conception of the nature of knowledge, medical practices and the roles of care, as well as the fear of caregivers in dealing with such an illness, and a mistaken conception of the history of medicine... (see "Scientific Plurality and Amyotrophic Lateral Sclerosis (ALS): A Philosophical and Historical Perspective on Charcot's Texts" by Anne Fenoy, forthcoming in Journal of the History of the Neurosciences).
Study the impact of ALS discourse, its legitimacy and limitations
Based on fieldwork at the Pitié-Salpêtrière hospital and the Institut du Cerveau (ICM) in Paris, with researchers and caregivers from the ALS community, I sought to understand who and why such formulas were used, and whether or not it was desirable or possible to question them, while understanding what they say about ALS.
By drawing on work in the philosophy of medicine on the disease in general, I have been able to develop an initial reading grid for the discourse on ALS in France, enabling us to grasp the impact of the different discourses produced on this disease, their legitimacy and their limits.
The aim is to obtain a nuanced vision of the disease by holding together the different perspectives on this complex object.
A classic distinction in medical humanities to designate disease
There is a distinction in medical humanities that is used by the philosophy of medicine to nuance understanding of the concept of disease. This distinction can be illustrated using the English language.
The term disease refers to illness as an object studied by medicine and biology. Illness, on the other hand, refers to disease as an experience experienced by those affected by it. Finally, sickness is a social phenomenon. To avoid the use of periphrases, these three English terms are retained unchanged in the French language.
In the case of ALS, the disease is studied by medicine, which seeks to understand its causes and find treatments. ALS sufferers are cared for in specialized centers (for the moment, treatment is palliative). ALS is also seen as a disease, with progressive paralysis and, for the time being, the inevitability of death. It is also recognized by society as a disease (organization of care and research, support for sufferers).
This distinction is invaluable in understanding the extent to which certain discourses on ALS can sometimes contradict or conflict, depending on the perspective they embody.
The example of pain in ALS: a case of divergent discourses
There are many examples of possible conflicts between discourses. The example of the expression of pain in ALS is just one. However, it quickly illustrates a possible conflict between ALS as a disease studied by medicine and ALS as an experience lived by sufferers (illness).
ALS is characterized by medicine as a disorder of the motor system. The classic definition of ALS is that it is a disease that does not manifest itself in any perceptible affliction, such as a sensation of pain. However, it is possible to find the expression of pain in the stories of people with ALS, as illustrated by this extract from Arielle Crozon's L'Affreuse:
"I ache to be sick, my forearms ache with fasciculations, sudden cramps tetanize my muscles. Lying down, my body jerks in a disordered, unpredictable way. It hurts to see my left hand, it's become so thin, my thighs are gradually melting, my belly is sagging. My head aches from these transformations of my body.
It's crazy, but Tilda [her neurologist] says there's no pain associated with Affreuse. Last time, in an effort to understand, she prescribed me an anxiolytic in the benzodiazepine family, but also a muscle relaxant."
This discrepancy between the disease perspective (the medical study of illness) and the illness perspective (the patient's experience) can have damaging consequences, both in terms of treatment (because the patient's voice is not taken into account) and in terms of understanding the disease.
On the contrary, taking patients' voices seriously opens up new avenues of research into ALS. Biomedical articles attempt to study pain in ALS in greater depth, seeking to break away from the classic definition of the disease.
It's not simply a question of pointing out the gap between the patient's perspective on the one hand, and the caregiver's perspective on the other, but rather of using this example to show how two perspectives can contradict one and the same phenomenon, namely ALS.
A philosophical investigation to avoid any caricatured apprehension
The aim of this survey of discourses on ALS is to avoid any caricature of this complex disease. The aim is to clarify the perspectives at work in these discourses, and to understand to what extent it may be desirable to bring them into dialogue in order to improve care and research, as well as the representations associated with this disease.
The principle of epistemic humility is important to remember in this context. Epistemic humility corresponds to the ability to question oneself and to integrate knowledge that is external to oneself.
Each person producing a discourse must demonstrate epistemic humility by recognizing his or her legitimacy and limitations, in order to foster possible dialogues.
This article is written by Anne Fenoy, Laboratoire Sciences, Normes, Démocratie (SND) - UMR 8011, Initiative Humanités Biomédicales, École doctorale 433 Concepts & Langages, Sorbonne Université (FilSLAN 4th year thesis funding), under the supervision of : Cédric Paternotte, UMR 8011, SND, Sorbonne Université & Pr Danielle Seilhean, Inserm U1127, CNRS U7225, Sorbonne University, Institut du Cerveau & AP-HP, Hôpital Pitié-Salpêtrière, neuropathology department. It was published as part of the Ma thèse en 180 secondes competition organized by France Universités and CNRS. The national final will be held at the Opéra de Nice on June 5, 2024.
Anne Fenoy, fourth-year doctoral student in philosophy of medicine, in the Concepts & Langages doctoral school, sorbonne University.
This article has been republished in English The Conversation under the Creative Commons license. See here for the original article in French.
