Letter to the Editor
Chronic fatigue syndrome: Patients’ experiences, clinical practice and epistemic justice
Síndrome de fatiga crónica: experiencias de las personas afectadas, práctica clínica y justicia epistémica
a Programa de Doctorado en Ciencias de la Salud, Facultad de Ciencias de la Salud, Universidad Rey Juan Carlos, Alcorcón, Madrid, Spain
b Departamento de Especialidades Médicas y Salud Pública, Facultad de Ciencias de la Salud, Universidad Rey Juan Carlos, Alcorcón, Madrid, Spain
c Departamento de Enfermería y Estomatología, Facultad de Ciencias de la Salud, Universidad Rey Juan Carlos, Alcorcón, Madrid, Spain
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"identificador" => "aff0015" ] ] "correspondencia" => array:1 [ 0 => array:3 [ "identificador" => "cor0005" "etiqueta" => "⁎" "correspondencia" => "Corresponding author." ] ] ] ] "titulosAlternativos" => array:1 [ "es" => array:1 [ "titulo" => "Síndrome de fatiga crónica: experiencias de las personas afectadas, práctica clínica y justicia epistémica" ] ] "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0005" class="elsevierStylePara elsevierViewall">Chronic fatigue syndrome, which is also known as myalgic encephalomyelitis (hereunder CFS/ME), is a chronic disease which significantly affects the quality of life of those who suffer it.<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">1</span></a> Its estimated prevalence in the adult European population stands at from 0.11 to 2.3%.<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">1</span></a> The lack of clear aetiology or specific diagnostic tests and its coexistence with other morbid entities have tended to reduce the medical, legal and social recognition of this disease. We are therefore able to talk of CFS/ME as a contested illness, the term used by Swoboda<a class="elsevierStyleCrossRef" href="#bib0010"><span class="elsevierStyleSup">2</span></a> to refer to diseases whose “real” existence is a subject of debate for medical professionals, public authorities and society in general.</p><p id="par0010" class="elsevierStylePara elsevierViewall">Studies of the experiences of those who suffer CFS/ME shows that the disease and its “contested” nature have a devastating effect on them in physical, psychological, professional and social terms. These studies make it possible to discover the subjective dimension of the disease, which is often a secondary consideration for a health system with a biomedical orientation and a structure which favours the development of what Fricker<a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">3</span></a> terms “epistemic injustice”.</p><p id="par0015" class="elsevierStylePara elsevierViewall">The aforementioned author distinguishes between two types of this phenomenon: “testimonial injustice”, which occurs when a subject is considered to be less credible due to prejudices in association with a range of factors (sex, ethnicity, socioeconomic level or disease, etc.), and “hermeneutic injustice”, which is linked to a lack of collective resources that would render the subject’s experience describable, intelligible and understandable for the social medium in question. As both types of injustice negate the subject’s condition as knowledgeable, they also deny that they possess a capacity that is essential for human dignity.<a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">3</span></a></p><p id="par0020" class="elsevierStylePara elsevierViewall">In individuals who are affected by CFS/ME testimonial injustice arises due to the contested nature of the disease. This is manifested by suspicion as to the “reality” of what the subject describes, as they are suspected of suffering an emotional disorder or wishing to achieve secondary benefits.<a class="elsevierStyleCrossRef" href="#bib0020"><span class="elsevierStyleSup">4</span></a> Hermeneutic injustice would derive from the idiosyncratic nature of the biomedical discourse itself, as it would exclude or relativize subjective experiences, considering them to be sources of distortion that would hinder diagnosis and therapy for the disease (understood to be an indisputable natural phenomenon). These forms of injustice are not deliberate malicious acts, but rather than this they are neutral or even beneficial practices for the sick person,<a class="elsevierStyleCrossRef" href="#bib0025"><span class="elsevierStyleSup">5</span></a> although they perpetuate the harm to their dignity and add to their suffering.</p><p id="par0025" class="elsevierStylePara elsevierViewall">From our point of view, rather than obstructing clinical practice, experiences of the disease are essential to identify the nursing care needs of individuals who are affected by CFS/ME. These experiences are also an indispensable first step in planning individualised interventions to meet the said needs. Unlike the biomedical diagnosis, clinical judgement in nursing does not depend solely on the disease itself, as it is also influenced by the experiences and responses of the individuals who suffer from it, which are always unique and different. This necessarily involves the validation of the said experiences, which is based on bringing them to the fore and offering a space where patients can express and make sense of their suffering. Patients thereby recognise themselves and are recognised as knowledgeable subjects, so that the nursing approach is able to reduce epistemic injustice. Additionally, taking experiences as the starting point for clinical judgement makes it possible to capture (unbroken) discomforts which go beyond physical symptoms, affecting the condition of the subject as such.</p><p id="par0030" class="elsevierStylePara elsevierViewall">We therefore consider that the results of studies which centre on exploring the experiences of individuals affected by CFS/ME are of inestimable clinical utility in nursing, while they also favour care with epistemic justice and respect for the dignity of patients.</p><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0005">Authorship</span><p id="par0035" class="elsevierStylePara elsevierViewall">The undersigned conceived and wrote this letter, approving its final version.</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0010">Financing</span><p id="par0040" class="elsevierStylePara elsevierViewall">Community of Madrid Prize for the Best Care Research Project. 3rd Edition of the Puerta de Hierro Prize for Care Research.</p></span><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0015">Conflict of interests</span><p id="par0045" class="elsevierStylePara elsevierViewall">The authors have no conflict of interests to declare.</p></span></span>" "textoCompletoSecciones" => array:1 [ "secciones" => array:4 [ 0 => array:2 [ "identificador" => "sec0005" "titulo" => "Authorship" ] 1 => array:2 [ "identificador" => "sec0010" "titulo" => "Financing" ] 2 => array:2 [ "identificador" => "sec0015" "titulo" => "Conflict of interests" ] 3 => array:1 [ "titulo" => "References" ] ] ] "pdfFichero" => "main.pdf" "tienePdf" => true "NotaPie" => array:1 [ 0 => array:2 [ "etiqueta" => "☆" "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Please cite this article as: Oter-Quintana C, Esteban-Hernández J, Alameda-Cuesta A. Síndrome de fatiga crónica: experiencias de las personas afectadas, práctica clínica y justicia epistémica. Enferm Clin. 2021;31:198–199.</p>" ] ] "bibliografia" => array:2 [ "titulo" => "References" "seccion" => array:1 [ 0 => array:2 [ "identificador" => "bibs0005" "bibliografiaReferencia" => array:5 [ 0 => array:3 [ "identificador" => "bib0005" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Evaluación y abordaje de Síndrome de Fatiga Crónica. Actualización de las evidencias científicas" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:1 [ 0 => "Centro Cochrane Iberoamericano y Agència de Qualitat i Avaluació Sanitàries de Catalunya" ] ] ] ] ] "host" => array:1 [ 0 => array:1 [ "Libro" => array:3 [ "fecha" => "2017" "editorial" => "Agència de Qualitat i Avaluació Sanitàries de Catalunya. Departament de Salut. Generalitat de Catalunya" "editorialLocalizacion" => "Barcelona" ] ] ] ] ] ] 1 => array:3 [ "identificador" => "bib0010" "etiqueta" => "2" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "The social construction of contested illness legitimacy: a grounded theory analysis" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:1 [ 0 => "D.A. Swoboda" ] ] ] ] ] "host" => array:1 [ 0 => array:2 [ "doi" => "10.1191/1478088706qrp061oa" "Revista" => array:5 [ "tituloSerie" => "Qual Res Psychol" "fecha" => "2006" "volumen" => "3" "paginaInicial" => "233" "paginaFinal" => "251" ] ] ] ] ] ] 2 => array:3 [ "identificador" => "bib0015" "etiqueta" => "3" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Injusticia epistémica. El poder y la ética del conocimiento" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:1 [ 0 => "M. Fricker" ] ] ] ] ] "host" => array:1 [ 0 => array:1 [ "Libro" => array:3 [ "fecha" => "2007" "editorial" => "Herder Editorial" "editorialLocalizacion" => "Barcelona" ] ] ] ] ] ] 3 => array:3 [ "identificador" => "bib0020" "etiqueta" => "4" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Malestares en el margen. Sujetos y tránsitos en la fibromialgia, el síndrome de fatiga crónica y la sensibilidad química múltiple" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:1 [ 0 => "A. Alameda" ] ] ] ] ] "host" => array:1 [ 0 => array:1 [ "Libro" => array:3 [ "fecha" => "2018" "editorial" => "Bellaterra Edicions" "editorialLocalizacion" => "Barcelona" ] ] ] ] ] ] 4 => array:3 [ "identificador" => "bib0025" "etiqueta" => "5" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Injusticia epistémica en el ámbito de la salud: perspectivas desde la epistemología social" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:2 [ 0 => "B. Radi" 1 => "M. 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