'Terminal anorexia': a lived experience perspective.

Having suffered from longstanding anorexia nervosa (AN) for more than a decade, and after meeting many patients who have also been labelled as 'treatment-resistant', 'treatment-refractory', or similar terms, I feel a strong responsibility to express my deep fears and sadness about the more harmful new label of 'terminal anorexia'. This article is based on a reflective and private email that I emotionally wrote in Autumn 2022, soon after reading a thought-provoking paper (Guarda et al. in J Eat Disord 10:79, 2022) about the new term. When I wrote the email, I had not read the Gaudiani et al. (J Eat Disord 10:23, 2022) paper that proposed clinical characteristics for the new diagnosis. Hence, my email was not, and this article is not, a response to Gaudiani et al. (2022). Challenging the criteria that they proposed is beyond the scope of this article, which is just a lived experience reaction to the concept of 'terminal anorexia' (regardless of who created it and who tries to define it).Before learning about 'terminal anorexia' in 2022, I assumed that 'unconditional positive regard' included mental health professionals' unconditional hope for their patients' ability to live meaningful lives, irrespective of how severe or chronic their patients' conditions were. Therefore, I was very disheartened when the label 'terminal anorexia' was circulated by professionals. Research is not just read, seen, and heard about by the professionals who promote it. Vulnerable and conflicted eating disorder (ED) sufferers, and their families, can be victims of theoretical academic discourse that has real-world, life-or-death implications.The purpose of my article is not to suppress the arbitrary new term, which is sadly already commonly used in clinical practice and amongst very young ED sufferers, despite it having no agreed definition. I intend to outline some of the reasons why I believe that the term (not its hypothesised criteria, which are beyond the scope of my article) is harming ED sufferers, so that these harms can be addressed before it is too late. I have grouped these reasons into six key themes that inevitably overlap and cannot be perfectly separated. They are: [1] Hope and identity destruction; [2] Avoidance and collusion; [3] Self-diagnosis and misdiagnosis; [4] Comparisons; [5] Dangerous precedents; [6] Current and future treatments.

La cultura del padeciente en el descontrol de la enfermedad crónica no transmisible / The Sufferer Culture in the Lack of Control of a Chronic Non-Communicable Disease

Resumen El modelo biomédico para enfermedades crónicas no transmisibles considera que los enfermos deben responder automáticamente a una prescripción. Sin embargo, esto conduce al enfermo a confrontarse con su grupo social, debido a que una fuerza invisible y controladora lo configura y conduce a desarrollar una disposición contraria a la requerida en el plan de tratamiento, este elemento se conoce como cultura. El propósito del presente artículo es exhortar a la reflexión sobre la influencia de la cultura en el descontrol de este tipo de enfermedades. Se propone diferenciar entre enfermedad y padecimiento, denominando paciente a la persona cuando se atienda la enfermedad y padeciente cuando se atienda el padecimiento. Por tanto, atender al padeciente implica considerar preocupaciones, miedos, creencias, expectativas, emociones y sentimientos, así como las repercusiones de la enfermedad en la vida. Para demostrar esta afirmación se describe cómo conceptualizamos cultura, cuál es su función y por qué es imprescindible intervenir en el contexto sociocultural del padeciente.

Abstract The biomedical model for chronic non-communicable diseases considers that people with the disease must respond automatically to their medical prescription. However, this leads to a confrontation of sick people against their social group since an invisible and controlling force shapes and leads the patient into developing a disposition opposed to their required treatment plan, this element is better known as culture. The purpose of this study is to encourage reflection about the influence of culture in the lack of control regarding this type of diseases. It is proposed to differentiate between disease and illness, calling patient when treating the disease and sufferer when treating the illness. Hence, treating the sufferer includes considering worries, fears, beliefs, expectations, emotions, and feelings, as well as repercussions of the disease on their life. To proof this statement, the concept of culture is described and conceptualized, as well as its function, and why it is of vital importance to intervene in the socio-cultural context of the sufferer.

Practical Treatment of Lewy Body Disease in the Clinic: Patient and Physician Perspectives.

This article describes the practical considerations in the clinical medical treatment in dementia with Lewy body (DLB) patients. It is illustrated with the voice of a DLB sufferer and his wife. According to our experience, emanating from a 15 year collaboration between a doctor and a nurse at a memory clinic, there are several possible therapeutical entrances. However, the order in which the medication is introduced is of great importance to avoid aggravation of other DLB symptoms. We start the treatment with cholinesterase inhibitor and memantine, and; thereafter, we treat the most disturbing symptom. Thereafter, we consider if orthostatic hypotension is present and treat it. In the treatment of depression and anxiety it is beneficial to use agents affecting both noradrenalin and serotonin. Dysphagia may be lethal but can be improved with carbohydrate drinks. These and other aspects are commented upon from our experience and are also reflected in relation to studies evaluating the existing level of evidence.

Padeciente: un aporte conceptual para la conformación de un modelo de atención a las enfermedades crónicas / Sufferer: a new concept for a new proposal for the care of chronic illnesses

Resumen En México nos encontramos en transiciones epidemiológica y demográfica caracterizadas, entre otras, el incremento de las enfermedades crónicas como causas de morbi-mortalidad y el envejecimiento de la población. Lo anterior demanda un modelo de atención médica diferente al establecido para atender enfermedades agudas y transmisibles, en las que el individuo enfermo puede recuperar su salud en un tiempo relativamente corto, no así en las enfermedades crónicas, en las que el individuo enfermo las "padece" por tiempo prolongado, con grandes repercusiones en su vida familiar, laboral y social. Proponemos utilizar el término "paciente" para los individuos con enfermedad aguda o trasmisible y "padeciente" para aquellos con padecimientos crónicos, lo cual implica la exploración de nuevas alternativas para la atención médica efectiva.

Abstract Nowadays, in Mexico, we find ourselves in an epidemiologic and demographic transition distinguished, among other things, by the ageing of population and the increase of the chronic and degenerative diseases as causes of morbidity and mortality. All of this demands a different health care model, to the one already created, to deal with acute and contagious diseases, in which the sick person can regain health in relatively short time, not so in chronic degenerative diseases, in which the sick person "suffers" the diseases for a long time, affecting his familiar, occupational and social life. In this paper, we propose to use the term "patient" (paciente, in Spanish) for individuals with acute or contagious disease and "sufferer" (padeciente, in Spanish) for those with chronic conditions which involves the exploration of new alternatives for effective health care.