The article maintains that chronic fatigue syndrome can be properly understood only by taking an integrated perspective in which evolutionary, developmental and ecological aspects are considered. The integrative approach, supplemented by a complexity theory and psychoneuroimmunological research, is capable of explaining why there are so few structural aberrations to be found in chronic fatigue syndrome and why specific treatment is so difficult to establish. A major outcome of the investigation, that all individuals with chronic (...) class='Hi'>fatigue syndrome are diseased in their own way, emphasises the need to study the development of personalised life histories. It also highlights an ethical dimension; personalised disease defies essentialist thinking on patient management. Another major outcome, which follows from the developmental systems perspective, is the dissolution of ontological mind-body dualism. This in turn allows for a methodological complementation of the biological and phenomenological approaches to knowledge. New research strategies that may help to resolve chronic fatigue syndrome, grounded in the revised perspective on individual development, are suggested. (shrink)

Chronic fatigue syndrome or myalgic encephalomyelitis remains a controversial illness category. This paper surveys the state of knowledge and attitudes about this illness and proposes that epistemic concerns about the testimonial credibility of patients can be articulated using Miranda Fricker’s concept of epistemic injustice. While there is consensus within mainstream medical guidelines that there is no known cause of CFS/ME, there is continued debate about how best to conceive of CFS/ME, including disagreement about how to interpret clinical studies (...) of treatments. Against this background, robust qualitative and quantitative research from a range of countries has found that many doctors display uncertainty about whether CFS/ME is real, which may result in delays in diagnosis and treatment for patients. Strikingly, qualitative research evinces that patients with CFS/ME often experience suspicion by health professionals, and many patients vocally oppose the effectiveness, and the conceptualization, of their illness as psychologically treatable. We address the intersection of these issues and healthcare ethics, and claim that this state of affairs can be explained as a case of epistemic injustice. We find evidence that healthcare consultations are fora where patients with CFS/ME may be particularly vulnerable to epistemic injustice. We argue that the marginalization of many patients is a professional failure that may lead to further ethical and practical consequences both for progressive research into CFS/ME, and for ethical care and delivery of current treatments among individuals suffering from this debilitating illness. (shrink)

Miranda Fricker’s influential concept of epistemic injustice has recently seen application to many areas of interest, with an increasing body of healthcare research using the concept of epistemic injustice in order to develop both general frameworks and accounts of specific medical conditions and patient groups. This paper illuminates tensions that arise between taking steps to protect against committing epistemic injustice in healthcare, and taking steps to understand the complexity of one’s predicament and treat it accordingly. Work on epistemic injustice is (...) therefore at risk of obfuscating legitimate and potentially fruitful inquiry. This paper uses Chronic Fatigue Syndrome/Myalgic Encephalomyelitis as a case study, but I suggest that the key problems identified could apply to other cases within healthcare, such as those classed as Medically Unexplained Illnesses, Functional Neurological Disorders and Psychiatric Disorders. Future work on epistemic injustice in healthcare must recognise and attend to this tension to protect against unsatisfactory attempts to correct epistemic injustice. (shrink)

In this article, we present findings from a qualitative study examining how young women experience being long‐term bedridden with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), during childhood and adolescence. The aim is to explore how young women who fell ill with ME/CFS during childhood and adolescence look back on their lived experience of being long‐term bedridden from the vantage point of being fully or partially recovered. Informed by a phenomenological theoretical perspective, the researchers applied (...) a narrative methodological approach involving the analysis of interviews with 13 women, aged 16–29 years at the time of the interview. Attention was particularly paid to how participants structured their narratives and to the events (telling moments) they identified as important. Four major storylines were developed: Ambivalent responses to the presence of others; A body on the edge of life; An eternity in the dark; and Recasting painful memories of being bedridden and alone. Based on our findings, we argue that the experience of being long‐term bedridden with ME/CFS during childhood and adolescence can be understood and communicated as a plot in which individuals find themselves pushed to the extreme limit of suffering and loneliness. (shrink)

Gaston Franssen’s essay touches on important medical and literary topics: the experience of patients with unexplained somatic complaints, the importance of giving their symptoms a name or diagnosis, the verbal representation of what bothers them, or the uncertainty all parties have to live with when an underlying cause of the symptoms is missing. A diagnosis or name such as chronic fatigue syndrome can be a relief for its sufferers, as is expressed by one of the patients in the (...) article: “I wept with relief at having a name for it.” Yet CFS is but a name for something that, medically speaking, has no substance except for the patients” complaints. CFS shares this lack of objective physical signs with other... (shrink)

ABSTRACT Current attempts to understand unusually high rates of psychiatric illness in complex, chronic illnesses can be guilty of operating within an explanatory framework whereby there are two options. Either (a) that the psychiatric predicaments are secondary to the bodily condition, and (b) that they are primary. In this paper, I draw upon philosophical work on affect, contemporary empirical work, and qualitative first-person patient data to illustrate a much messier reality. I argue that affective experience is generally more complex (...) in such conditions, and that a variety of pre- and post-morbid causal factors dynamically interact such that the resultant psychiatric predicaments do not permit to classification as strictly primary or secondary to the bodily condition. Affective scaffolding, in my view, provides an apt theoretical framework for capturing this nuance. (shrink)

The rise of medically unexplained conditions like fibromyalgia and chronic fatigue syndrome in the United States looks remarkably similar to the explosion of neurasthenia diagnoses in the late nineteenth century. In this paper, I argue the historical connection between neurasthenia and today’s medically unexplained conditions hinges largely on the uncritical acceptance of naturalism in medicine. I show how this cultural acceptance shapes the way in which we interpret and make sense of nervous distress while, at the same time, (...) neglecting the unique social and historical forces that continue to produce it. I draw on the methods of hermeneutic philosophy to expose the limits of naturalism and forward an account of health and illness that acknowledges the extent to which we are always embedded in contexts of meaning that determine how we experience and understand our suffering. (shrink)

The event of the pandemic that started in 2020 fed an affective phenomenon known as pandemic fatigue, medically near to “chronic fatigue syndrome”. Psychologi- cal explanation of the phenomenon provides a first approach that is enriched with phenomenological description and analysis of it as existential feeling in the present. This term stresses the bodily reference of the kind of existential moods displayed by Heidegger and contributes to a better description of the fatigue phenomenon relying on Levinas’ (...) study. Present and profound fatigue is therefore shown as a feeling of tiredness that ties existence to a no-being-possible or no-being-able for oneself to do what it was possible before, i.e. in the pre-pandemic past. Besides the description, phenomenological analysis of the bond between profound boredom —as studied by Heidegger— and pandemic existential fatigue stresses different levels in the ontological understanding of this last one and its harmful feature. (shrink)

This paper points to a more expansive conception of grief by arguing that the losses of illness can be genuine objects of grief. I argue for this by illuminating underappreciated structural features of typical grief — that is, grief over a bereavement — which are shared but under-recognized. I offer a common chronic illness, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), as a striking case study. I then use this analysis to highlight some clinical challenges that arise should this (...) claim receive uptake in clinical practice. Extant literature on CFS/ME tells us that rates of comorbid depression are atypically high. If one accepts that people with CFS/ ME can grieve over losses associated with the condition, and that grief can be easily mistaken for depression in this context, this might suggest that rates of comorbid depression are inflated. I show, however, that the challenge of distinguishing between healthy and pathological grief arises in its place, and is just as tricky to solve. (shrink)

The process of medicalization has been analyzed in the medical humanities with disapprobation, with much emphasis placed on its ability to reinforce existing social power structures to ill effect. While true, this is an incomplete picture of medicalization. I argue that medicalization can both reinforce and disrupt existing social hierarchies within the clinic and outside of it, to ill or good effect. We must attend to how this takes place locally and globally lest we misunderstand how medicalization mediates power and (...) justice. I provide concrete examples of how this occurs by considering dysesthesia ethiopsis, autism, chronic fatigue syndrome, depression, and HIV/AIDS. (shrink)

Myalgic encephalomyelitis or chronic fatigue syndrome is a contested illness category. This paper investigates the common claim that patients with ME/CFS—and by extension, ME/CFS patient organizations —exhibit “militant” social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness. However, we identify a common trope in the discourse over ME/CFS: the claim (...) of “militant” patient activism. Scrutinizing this charge, we find no compelling evidence that the vast majority of patients with ME/CFS, or the POs representing them, have adopted any such militant political policies or behaviours. Instead, we observe key strategic similarities between ME/CFS POs in the United Kingdom and the AIDs activist organizations of the mid-1980s in the United States which sought to engage scientists using the platform of public activism and via scientific publications. Finally, we explore the contours of disagreement between POs and the medical community by drawing on the concept of epistemic injustice. We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS. (shrink)

Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a highly contested illness. This paper analyzes the discursive production of knowledge about, and recognition of ME/CFS. By mobilizing insights from social epistemology and epistemic injustice studies, this paper reveals how actors, through their social-discursive practices, attribute to establishing, sustaining, and disregarding their own and others’ epistemological position. In focusing on the case of the Dutch newspaper reporting about ME/CFS, this paper shows that the debate about this condition predominantly revolves around (...) the ways in which people who make truth claims are represented. In being portrayed as gendered, affectatious, formerly very able, fanatical, or benevolent, people with ME/CFS are constructed as non-/credible. In the debate about what causes ME/CFS, by contrast, the production of non-/credible knowledge focuses more on the content of epistemic positions. Actors in this debate argue that they know the (clear) causes for the illness, something which functions as a discursive strategy to establish and enhance their credibility. This paper contends, however, that since this discursive demarcation of causes is consistently infused with uncertainty – with multi-interpretability, with diffuse explanations, and absence of current knowledge – the credibility of these actors’ epistemic position is undercut rather than established. (shrink)

In At the Will of the Body , Arthur Frank told the story of his own illnesses, heart attack and cancer. That book ended by describing the existence of a "remission society," whose members all live with some form of illness or disability. The Wounded Storyteller is their collective portrait. Ill people are more than victims of disease or patients of medicine they are wounded storytellers. People tell stories to make sense of their suffering when they turn their diseases into (...) stories, they find healing. Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known--Gilda Radner's battle with ovarian cancer--to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilties. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic. Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new. (shrink)

Few conditions have sparked as much controversy as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Professional consensus has long suggested that the condition should be classified as psychiatric, while patients and advocacy groups have insisted it is a serious biological disease that requires medical care and research to develop it. This longstanding debate shifted in 2015, when U.S. governmental health authorities fully embraced medical classification and management. Given that some globally respected health authorities now insist that ME/CFS is a serious (...) biological disease, this paper asks whether it can be ethical for the U.K. practice guideline now in development to characterize the condition as a mental health disorder. Following a brief history of ME/CFS controversy, I offer three arguments to show that it would be unethical for the U.K. to now characterize ME/CFS as a mental health condition, considering the relevance of that conclusion for ME/CFS guidelines elsewhere and for other contested conditions. (shrink)

There is one concept in medicine which is prominent, the symptom. The omnipresence of the symptom seems, however, not to be reflected by an equally prominent curiosity aimed at investigating this concept as a phenomenon. In classic, traditional or conventional medical diagnostics and treatment, the lack of distinction with respect to the symptom represents a minor problem. Faced with enigmatic conditions and their accompanying labels such as chronic fatigue syndrome, fibromyalgia, medically unexplained symptoms, and functional somatic syndromes, the (...) contestation of the symptom and its origin is immediate and obvious and calls for further exploration. Based on a description of the diagnostic framework encompassing medically unexplained conditions and a brief introduction to how such symptoms are managed both within and outside of the medical clinic, we argue on one hand how unexplained conditions invite us to reconsider and re-think the concept we call a “symptom” and on the other hand how the concept “symptom” is no longer an adequate and necessary fulcrum and must be enriched by socio-cultural, phenomenological and existential dimensions. Consequently, our main aim is to expand both our interpretative horizon and the linguistic repertoire in the face of those appearances we label medically unexplained symptoms. (shrink)

Next SectionEvidence based medicine is rightly at the core of current medicine. If patients and society put trust in medical professional competency, and on the basis of that competency delegate all kinds of responsibilities to the medical profession, medical professionals had better make sure their competency is state of the art medical science. What goes for the ethics of clinical trials goes for the ethics of medicine as a whole: anything that is scientifically doubtful is, other things being equal, ethically (...) unacceptable. This particularly applies to so called orphaned fields of medicine, those areas where medical research is weak and diverse, where financial incentives are lacking, and where the evidence regarding the aetiology and treatment of disease is much less clear than in laboratory and hospital based medicine. Examples of such orphaned fields are physiotherapy, psychotherapy, medical psychology, and occupational health, which investigate complex syndromes such as RSI, whiplash, chronic low back pain, and chronic fatigue syndrome. It appears that the primary ethical problem in this context is the lack of attention to the orphaned fields. Although we agree that this issue deserves more attention as a matter of potential injustice, we want to argue that, in order to do justice to the interplay of heterogeneous factors that is so typical of the orphaned fields, other ethical models than justice are required. We propose the coordination model as a window through which to view the important ethical issues which relate to the communication and interaction of scientists, health care workers, and patients. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy and Rhetoric 35.3 (2002) 208-222 [Access article in PDF] Writing, Illness and Affirmation Jeremiah Dyehouse My formula for greatness in a human being is amor fati: that one wants nothing to be different, not forward, not backward, not in all eternity. Not merely to bear what is necessary, still less conceal it—all idealism is mendaciousness in the face of what is necessary—but love it. —Friedrich Nietzsche In her (...) widely circulated book On Death and Dying, Elisabeth Kübler-Ross, M.D., addresses herself to a changed historical context for work in medicine. In societies with increasingly effective medical care, she argues, doctors and nurses find themselves working with patients whose health problems range from imperceptible yet terminal sicknesses to psychosomatic ailments. Today, especially, it is easy to see the reality of her description of this situation: forms of terminal cancer can be detected earlier and earlier in a patient's life, rendering the disconcerting reality of a terminal illness with few or no symptoms. Equally strange for doctors and patients today are forms of environmental illness like chronic fatigue syndrome, a condition suffered by many but still disputed by doctors and researchers. To this situation of medical risk, personal suffering, and therapeutic care, Kübler-Ross prescribes a communicative engagement with the dying. This engagement, she argues, not only teaches doctors about death and dying, but it also provides respite for those who must experience these events.The problem of communicating with the dying, the main focus of Kübler-Ross's book, is nevertheless eclipsed by the other, more notable aspect of On Death and Dying. For out of this book emerged the now very popular understanding of the stages of death, the normal sequence of an individual's emotional reconciliation to dying: the processes of denial and isolation, anger, bargaining, depression—the whole series of intrapsychic processes leading up to a final acceptance of death and dying. Now we live amongst a whole panoply of staged progresses towards the acceptance of trauma: trauma associated not only with death and dying but also with substance abuse, catastrophe, and forms of violence. It is perhaps worth recalling, however, that the most famous of these stage models, the five stages [End Page 208] of death, emerged out of Kübler-Ross's attempt to learn what the dying can teach the living about communication.In what follows, I assume that writing about illness is another, more popular form of Kübler-Ross's descriptive and communicative project. To write pathography, as Anne Hunsaker Hawkins calls narratives of illness and dying in her survey of these texts, Reconstructing Illness: Studies in Pathography, is to engage with what sickness and dying teach about life and writing. As might be guessed, most pathographies orbit familiar centers of gravity: agency for the dying, reconciliation for the living, the whole leaden project of acceptance. Even so, pathography is not always and everywhere engaged in such projects. Pathography, as Hawkins demonstrates, is a highly variable project. Literary pathography is quite different from popular pathography, and texts within these categories differ with respect to the purpose of their writing. Pathography is conceived as a communicative engagement with sickness and dying, with the sick and the dying, but is hardly unified in its aims or its functions. It is a form of writing that not just potentially but actually admits a diversity of purposes and produces a variety of effects.It is my purpose here to propose a typology for pathographies. Although pathography as a genre of writing takes a bewildering variety of forms, these writings can be grouped according to their effects. I divide pathography into three types, according to the kind of response they offer to sickness and dying, to the sick and the dying. First, I treat pathography as a process of passive acceptance, the bearing of a burden proposed by the necessities of illness and death. Next, I characterize pathographies that approach the writing of illness or dying as a process of active acceptance. This type of pathography uses writing about illness and dying as a process for the... (shrink)

In recent years, there has been a rapidly increasing interest in self-management strategies in psychiatry and psychosomatic medicine. Among the conditions in which self-management is currently investigated in these contexts are bipolar disorder, depression, post-traumatic stress disorder, schizophrenia, attention deficit hyperactivity disorder, irritable bowel syndrome, chronic fatigue syndrome (Meng, Friedberg, &...

A systemic phenomenological model that assumes the movability of the Cartesian cut is proposed and elucidated by means of a single exploratory case study. The model assumes that a continuum from purely psychosomatic disorders to RSPK cases exists. The degree of externalization (locus of control) of the affected person serves as an ordering parameter for the location of the Cartesian cut. It turns out that the dynamics of the disorder develops in four phases, like in the RSPK-model of the MPI. (...) However, in contrast to the decline phase of the RSPK cases (because of the NT-axiom), CER cases lead to petrification of the complaints. (shrink)

Chronic low back pain affects 50-80% of the population, while its consequences may impair the functioning of patients suffering from it, in many spheres of life. Hope is a factor which may influence coping with pain as well as cognitive reflection of pain experience. The aim of the study has been to check: 1) whether dependencies exist between hope-trait and hope-state and the perception of pain; 2) whether experiencing pain at the time of filling questionnaires matters for the assessment (...) of the level of hope; 3) whether there is interaction between hope, the pain experienced at the moment of investigation, and memory of the intensity of previously experienced pain. 150 patients participated in the study, they all reported aggravation of the chronic low back pain syndrome. The study was a cross-sectional study, based on questionnaires. On the third day of treatment the subjects were given the following questionnaires: Trait Hope Scale, State Hope Scale, and Numerical Rating Scale of Pain to fill. Poor correlation was demonstrated to exist between hope-state and hope-pathways on the one hand, and the intensity of minimum pain level experienced during the first three days of treatment. It has been noted that the presence of pain at the time of filling questionnaires results in reducing the hope-state, but only in those persons, who had experienced severe pain previously. On the other hand, in case of patients who had experienced slight pain previously, the pain present when filling in the questionnaires is conducive to enhanced hope-state. The results of the study confirm the complex character of relations between hope and pain. (shrink)

BackgroundThe Basal ganglia (BG) played a crucial role in the brain-level mechanisms of chronic pain disorders. However, the functional changes of BG in chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) are still poorly understood. This study investigated the BG subregions’ resting-state functional connectivity (rs-FC) in CP/CPPS patients compared with healthy controls.MethodsTwenty eight patients with CP/CPPS and 28 age- and education-matched healthy males underwent clinical measurements and 3T brain MR imaging, including T1-weighted structural images and resting-state functional imaging. The (...) data were analyzed by the seeded-based rs-FC analysis. Then, a machine learning method was applied to assess the feasibility of detecting CP/CPPS patients through the changed rs-FC.ResultsCompared with healthy males, patients presented decreased rs-FC between the BG subregions and right middle cingulate cortex, and correlated with pain (r = 0.51, p-uncorrected = 0.005) and urinary symptoms (r = –0.4, p-uncorrected = 0.034). The left superior temporal gyrus and right supramarginal gyrus showed decreased rs-FC with the BG subregions as well. The area under the receiver operating characteristic curve of 0.943 (accuracy = 80%, F1-score = 80.6%) was achieved for the classification of CP/CPPS patients and healthy males with support vector machine (SVM) based on the changed rs-FC.ConclusionThese findings provide evidence of altered BG subregions’ rs-FC in CP/CPPS, which may contribute to our understanding of the BG’s role in CP/CPPS. (shrink)

Marie-Aure´lie Bruno,1 Jan L Bernheim,2 Didier Ledoux,1 Fre´de´ric Pellas.

BackgroundMental stress and imbalance of its two neural stress systems, the autonomic nervous system and the hypothalamic–pituitary–adrenal axis, are associated with chronic prostatitis/chronic pelvic pain syndrome and erectile dysfunction. However, the comprehensive analyses of psychological stress and stress systems are under-investigated, particularly in CP/CPPS patients complicated by lower urinary tract symptoms and ED.Materials and methodsParticipants were 95 patients in CP/CPPS+ED group, 290 patients in CP/CPPS group, 124 patients in ED group and 52 healthy men in control group. The (...) National Institutes of Health Chronic Prostatitis Symptom Index, the International Index of Erectile Function-5 and the International Prostate Symptom Score were used for assessing the disease severity of CP/CPPS, LUTS and ED. Psychometric self-report questionnaires including the Beck Anxiety Inventory, Perceived Stress Scale, Type A Personality Test and Symptom Checklist 90 were completed for distress from physical symptoms. Twenty-five subjects per group were randomly selected for further investigating the changes of the HPA axis and ANS. Saliva samples were taken on 3 consecutive days at 8 specific times with strict reference to time of morning awakening for evaluation of free cortisol. Heart rate variability as marker of the ANS was measured using 24 h electrocardiography, and time-and frequency-domain variables were analyzed.ResultsThe BAI and SCL-90 scores were significantly higher in the CP/CPPS+ED, CP/CPPS and ED groups compared with the control group. The PSS scores of both groups with ED were significantly higher than the control group. Compared with the CP/CPPS group, the differences of PSS, SCL-90 and TAPT scores were statistically significant in CP/CPPS+ED patients. The IPSS scores were shown to have significantly positive correlations with BAI, PSS and SCL-90 in the CP/CPPS patients. However, in all subjects, the IIEF-5 scores were shown to have significantly negative correlations with BAI, PSS, SCL-90 and quality of life score in NIH-CPSI. Cortisol awakening response parameters and diurnal cortisol levels did not significantly vary between the four groups. Time-dependent parameters of HRV also did not differ significantly across groups. In the frequency domain analysis, low frequency was significantly lower in ED patients when compared with CP/CPPS+ED patients and healthy controls, high frequency power was significantly higher in healthy controls compared to patients with ED, CP/CPPS and CP/CPPS+ED, and the CP/CPPS+ED group had significantly higher LF/HF ratio than the control group.ConclusionCP/CPPS and ED patients score exceedingly high on most psychosocial variables. The symptom scores of LUTS and ED positively correlate with the severity of psychological stress. Our findings also suggest that the ANS sympathovagal imbalance is associated with ED and LUTS in CP/CPPS, whereas HPA axis activity is not. (shrink)

One of the great problems of caregivers and health professionals in recent times has been the so-called compassion fatigue and its association with burnout syndrome. Another pole of compassion has been described in terms of compassion satisfaction. Both propositions could be problematic in the caregiving setting. This is an analytical reflective article that through an apparent aporia tries to problematize and propose a theoretical synthesis that allows to denote compassion as a virtue in Aristotelian terms. To this end, it (...) resorts to etymologies, translations and mainly to the classical theoretical references regarding compassion fatigue, compassion satisfaction and, of course, Aristotelian ethics. This is a theoretical bet that leaves open the discussion regarding the dichotomies compassion fatigue and compassion satisfaction; apathy and hyperpathy; and proposes to rethink compassion as a virtue, a reasoned middle ground, contextualized in the framework of care between two possible excesses. (shrink)

Recent studies have explored the effectiveness of open-label placebos for a variety of conditions, including chronic pain, cancer-related fatigue and irritable bowel syndrome. OLPs are thought to sidestep traditional ethical worries about placebos because they do not involve deception: with an OLP, patients or subjects are told outright that they are not given an active substance. As deception is framed as the primary hurdle to ethical placebo use, the door is ostensibly opened to ethical studies of OLPs. In (...) this article, I suggest that even though OLPs seemingly do not involve deception, there are other ethical considerations in their clinical investigation and subsequent use. Research ethics often focusses on informed consent—of which, deception and honesty are a piece—as a means to justify research practices with human subjects. Yet, it is but one of the ethical considerations that should be taken into account. With research into placebo effects in particular, I argue that the history of clinical placebo use grounds special considerations for OLP research that go beyond respect for the autonomy of individual patients through informed consent and encompass structural concerns about the type of patient for whom a placebo has historically been thought appropriate. (shrink)

Bradford C Bemiss, Chad A WittDepartment of Internal Medicine, Division of Pulmonary and Critical Care Medicine, Washington University School of Medicine, St Louis, MO, USA: Chronic rejection is a major cause of death after the first year following lung transplantation. Bronchiolitis obliterans is the most common pathologic finding on biopsy, characterized by fibrous granulation tissue, which obliterates the lumen of the bronchiole. Clinically, in the absence of tissue for pathology, BO syndrome refers to a progressive irreversible drop in the (...) forced expiratory volume in 1 second. Recently, a broader definition of chronic rejection, termed "chronic lung allograft dysfunction", has been used to encompass a more inclusive definition of posttransplant dysfunction. Recently, the lung transplant community has come to realize that chronic rejection may be the final common result after repetitive epithelial insults. Acute rejection, infection, and alloreactivity to mismatched HLA antigens are a few of these insults that damage the surface of the bronchioles. Recent evidence of autoimmunity to the normally hidden structural proteins collagen V and K-α1 tubulin have been correlated with a BO phenotype as well, perhaps correlating the epithelial damage with a mechanism for developing BO lesions. Many immunomodulatory medications and treatments have been studied for effectiveness for the treatment of chronic lung allograft dysfunction. New drugs, which more precisely target the immune system, are being developed and tested. Further study is required, but recent advances have improved our understanding of the pathogenesis and potential intervention for this common and deadly complication of lung transplantation.Keywords: lung transplant, bronchiolitis obliterans syndrome, rejection. (shrink)

Although an invasive medical intervention, Deep Brain Stimulation (DBS) has been regarded as an efficient and safe treatment of Parkinson’s disease for the last 20 years. In terms of clinical ethics, it is worth asking whether the use of DBS may have unanticipated negative effects similar to those associated with other types of psychosurgery. Clinical studies of epileptic patients who have undergone an anterior temporal lobectomy have identified a range of side effects and complications in a number of domains: psychological, (...) behavioural, affective and social. In many cases, patients express difficulty adjusting from being chronically ill to their new status as ‘treated’ or ‘seizure free’. This postoperative response adjustment has been described in the literature on epilepsy as the ‘Burden of Normality’ (BoN) syndrome. Most of the discussion about DBS postoperative changes to self is focused on abnormal side effects caused by the intervention (ie, hypersexuality, hypomania, etc). By contrast, relatively little attention is paid to the idea that successfully ‘treated’ individuals might experience difficulties in adjusting to becoming ‘normal’. The purpose of this paper is (1) to articulate the postoperative DBS psychosocial adjustment process in terms of the BoN syndrome, (2) to address whether the BoN syndrome illustrates that DBS treatment poses a threat to the patient’s identity, and (3) to examine whether the current framework for rehabilitation after DBS procedures should be updated and take into account the BoN syndrome as a postoperative self-change response. (shrink)

As has been shown by several studies, teaching is a highly stressful occupation (Johnson et al., 2005), and most teachers experience work stress. Long-term stress decreases job satisfaction and can result in chronic exhaustion which can develop into burnout syndrome. Implications of burnout syndrome are strongly negative both for the personal and professional life of teachers. As burnout syndrome puts teachers’ well-being, quality of the teaching process and relationships with students at risk, it is important to seek ways to (...) avoid teachersÉ’ burnout. Many studies have confirmed the protective role that coping strategies play in managing stressful situations, teacher’s self-efficacy or social support. In previous studies, a negative connection was found between burnout syndrome and job satisfaction. Job satisfaction is a crucial element in the definition of wellbeing. We find wellbeing rather not as a resource for burnout prevention but as an opposite state to burnout syndrome. The paper presents a quantitative survey on burnout syndrome and related variables among Czech elementary school teachers (n = 2,394). According to burnout score, two subgroups were selected – teachers with no burnout manifestations and teachers with developing/developed burnout syndrome. Through the statistical analysis, these two groups were compared in job satisfaction, self-efficacy, coping strategies, and social support. The study shows significant differences between the two groups of teachers... (shrink)

Different sort of people are interested in personal identity. Philosophers frequently ask what it takes to remain oneself. Caregivers imagine their patients’ experience. But both philosophers and caregivers think from the armchair: they can only make assumptions about what it would be like to wake up with massive bodily changes. Patients with a locked-in syndrome suffer a full body paralysis without cognitive impairment. They can tell us what it is like. Forty-four chronic LIS patients and 20 age-matched healthy medical (...) professionals answered a 15-items questionnaire targeting: global evaluation of identity, body representation and experienced meaning in life. In patients, self-reported identity was correlated with B and C. Patients differed with controls in C. These results suggest that the paralyzed body remains a strong component of patients’ experienced identity, that patients can adjust to objectives changes perceived as meaningful and that caregivers fail in predicting patients’ experience. (shrink)

ObjectiveThis study aims to evaluate the effectiveness of the MotivAir program—a phone-based intervention based on Motivational Interviewing principles and techniques—in enhancing adherence to Continuous Positive Airway Pressure therapy among patients with Obstructive Sleep Apnea Syndrome.MethodsA multicenter randomized controlled trial design with random allocation at the level of the individual will be conducted to compare the impact of the experimental program with a control group receiving usual care only in improving selected clinical and psychological parameters in the patients. A minimum sample (...) of 80 participants will be recruited in each center according to the inclusion criteria. After the initial screening, participants will be randomly assigned to either the experimental group or the control condition. The program will last 180 days and will be delivered by a trained nurse. The impact of the MotivAir program on selected primary and secondary outcomes will be measured at baseline, and after 1-, 3-, and 6-month from CPAP initiation.DiscussionParticipants are expected to show an increased level of adherence to CPAP and to acquire the skills and self-confidence necessary to deal with the psychological consequences of their chronic condition. (shrink)

Self‐management programmes provide strategies to optimise health while educating and providing resources for living with enduring illnesses. The current paper describes the development of a community‐based programme that combines a transdiagnostic approach to self‐management with mindfulness to enhance psychological coping for older people with long‐term multimorbidity. The six steps of intervention mapping (IM) were used to develop the programme. From a needs assessment, the objectives of the programme were formulated; the theoretical underpinnings then aligned to the objectives, which informed programme (...) design, decisions on implementation, programme adoption and evaluation steps. Bandura's social cognitive theory informed the methods and practical strategies of delivery. Among the features addressed with participants are transdiagnostic dimensions such as fatigue, pain, breathlessness, sleep disturbances. The programme utilises mindfulness to aid coping and ameliorate the psychological distresses associated with chronicity. Findings from an initial feasibility study and subsequent pilot assisted in conceptualising our programme. In conclusion, applying IM gave the planners confidence the programme is robust and evidence‐based with clearly articulated links between the behavioural goals and design elements to obtain the desired outcomes. (shrink)

BackgroundFibromyalgia syndrome is the second most common chronic diffuse pain disorder and can have a lasting negative impact on the quality of life, pain, and physical function of people. Exercise therapy is an important component of the treatment of fibromyalgia, but there was not a consensus understanding of the effect of various exercise programs on the quality of life, pain, and physical function of people with fibromyalgia syndrome. This study aimed to compare three exercise programs in their effectiveness in (...) improving quality of life, relieving muscle pain, and enhancing physical function in patients with fibromyalgia.MethodsA comprehensive search of databases, including China National Knowledge Internet, Wan fang, The Cochrane Library, PubMed, EMBASE, and Web of Science, was conducted to identify randomized controlled trials on exercise therapy for patients with fibromyalgia syndrome with outcome indicators including at least one of Fibromyalgia Impact Questionnaire, Tender point count, and 6-minute walk test from the date of database creation on 20 April 2022. The included studies were evaluated for literature quality according to Cochrane Handbook criteria, and a network meta-analysis was performed using STATA 14.0.ResultForty-five randomized controlled trials met all inclusion criteria and were analyzed. The network meta-analysis showed that a combination of aerobic and resistance exercise was ranked first in all three dimensions of quality of life improvement, pain alleviation, and physical function enhancement.ConclusionThe current meta-analysis demonstrates that the combination of aerobic and resistance exercise may be the best type of exercise to accentuate the quality of life, pain alleviation, and physical function for people with fibromyalgia syndrome. (shrink)

ObjectiveTo investigate the association of pre-existing migraine in patients hospitalised and who recovered from severe acute respiratory syndrome coronavirus 2 infection with the presence of post-coronavirus disease symptoms.BackgroundNo study has investigated the role of migraine as a risk factor for development of post-COVID symptoms.MethodsA case-control study including individuals hospitalised during the first wave of the pandemic was conducted. Patients with confirmed previous diagnosis of migraine were considered cases. Two age- and sex-matched individuals without a history of headache per case were (...) also recruited as controls. Hospitalisation/clinical data were collected from hospital medical records. Patients were scheduled for a telephone interview. A list of post-COVID symptoms was systematically evaluated, but participants were invited to freely report any symptom. The Hospital Anxiety and Depression Scale and the Pittsburgh Sleep Quality Index were used to assess anxiety/depressive symptoms and sleep quality. Multivariable conditional logistic regression models were constructed.ResultsOverall, 57 patients with confirmed diagnosis of migraine and 144 non-migraine controls who had recovered from COVID-19 were assessed at 7.3 months after hospital discharge. The number of post-COVID symptoms in the migraine group was significantly greater than in the non-migraine group. Fatigue was significantly more prevalent in the migraine group. However, no between-groups difference in the prevalence of headache as a post-COVID symptom was detected.ConclusionPatients with a history of migraine who recovered from COVID-19 exhibited more long-term fatigue as post-COVID sequelae than those without migraine. Some of the pathophysiological changes associated with migraine could predispose to the occurrence of post-COVID symptoms. (shrink)

Locked-in syndrome (LIS) is one of the most dramatic neurological outcomes and has a profound impact on patients and their families. Most patients have intact cognition and intellectual ability and perception. Communication is possible with eyelid and/or eyeball movement. According to the literature, the wish to die is not an important issue in acute and chronic LIS. This study describes and analyses the ethical decision-making process in two opposite cases of LIS in the intensive care unit. One patient expressed (...) the wish to prolong her life for as long as possible; the other patient asked for deliberate termination of life. Both wishes were honoured. In conclusion, most patients with LIS are competent and intellectually intact. In The Netherlands the autonomy of the patient is respected by law. In respecting this autonomy, medical choices can be different in comparable patients. (shrink)

Fibromyalgia is a chronic pain disorder with a multifaceted nature and its biological, psychological and social aspects are strongly interconnected. Therefore, the integration of the different health disciplines is strongly recommended for its care. There is a growing number of interventions based on this principle but each of them is heterogeneous with regards to how the included disciplines are integrated with each other. With this regards, multidisciplinary and interdisciplinary programs are distinguished. The former are organized in order to treat (...) the various aspects of the syndrome using different perspectives and their various treatment components are usually provided separately by the different care providers. Conversely, interdisciplinary treatments are planned in order to foster a dialogue between the operators by providing a joint conduction of the treatment or scheduling plenary discussions about the cases. In the field of chronic pain, some authors are suggesting to move beyond these approaches and to plan transdisciplinary treatments, which would allow the professionals to move across their disciplinary boundaries. Although no examples of these interventions have been proposed for the treatment of fibromyalgia, there is a visible trend in the literature toward more holistic forms of care. (shrink)

Physical activity counteracts some of the negative consequences associated with chronic neurological diseases. Here, we describe the levels of physical activity and sports activity in patients with multiple sclerosis and chronic stroke and test compliance with the recommendation for health-promoting physical activity of the World-Health Organization. Secondly, we tested for differences between the groups of patients, and thirdly, we examined relationships between PA and Sport with psychological indicators of perceived energy and self-beliefs. Psychological constructs were assessed with validated (...) measures from different disciplines in Psychology. A statistical aim was to describe interpretations gained by parametric Bayesian and Null-Hypothesis-Significance Testing statistics on the example of the conducted tests for differences and relationships. Descriptive analyses revealed that pMS and pStroke complied with recommendations of the WHO, but with large variance indicating that patient groups are not homogenous. Tests for differences showed that the PA difference between pMS and pStroke can be attributed to the higher proportion of women in the pMS sample as they engage more in household chores. Tests for relationships showed that for pStroke, vitality, self-control, and self-efficacy were positively related to the level of sports activity. Furthermore, pStroke who were sport active had lower fatigue and higher self-control and self-efficacy scores than sport inactive people. Although they address slightly different questions, the Bayesian and the NHST approach led to similar general conclusions. (shrink)

In May of 2020, reports of so-called "long-COVID" began to surface. Long COVID is a collection of post-COVID-19 physical, cognitive and psychological symptoms, such as depression, brain fog, fatigue, and dizziness. As long-COVID is considered a "new" disease, it is not always covered by health insurance or government programs, moreover it is a set of constantly evolving symptoms.While severe cases of COVID-19 itself tend to be mostly in males over fifty-years-old, those individuals affected by long-COVID tend to be mainly (...) female and younger in age. Data supporting the existence of the long-COVID syndrome... (shrink)

The scientific understanding of common chronic disease began in the mid-19th century, driven in large part by the development of the modern autopsy. For cardiovascular disease, the recognition that rigid plaques were obstructing muscular arteries, especially in the coronary arteries, provided a mechanism to explain what had been a mysterious "chest pain–sudden collapse" syndrome. The origin of these plaques was totally obscure, however, and they were given the descriptive name of "atherosclerosis," or "hardened porridge" in Greek. Not until 50 (...) years later, when animal experimental models serendipitously revealed the hyper-lipidemic consequences of a diet high in animal fat, followed by accretion of lipid... (shrink)

Burnout is a risk for many music teachers, particularly the highly successful and effective teachers. Burnout is more than a personal feeling of discomfort or fatigue. It is an attack on professional efficiency and personal integrity. Burnout is affecting male and female music teachers in different ways, because women tend to react to stress in other ways than men and are in a different position in schools, often suffering from the various roles they have both in professional and private (...) life. The school environment, which is often male dominated, output-oriented, and focused on achievement, is sometimes not a good place for a female music educator's creativity, intuition, and search for personal growth. This paper explores ways philosophy of music education can contribute to a more comprehensive understanding of female music teachers' burnout, also offering opportunities for prevention or treatment. (shrink)

Fibromyalgia is a chronic pain syndrome characterized by dysfunctional processing of nociceptive stimulation. Neuroimaging studies have pointed out that pain-related network functioning seems to be altered in these patients. It is thought that this clinical symptomatology may be maintained or even strengthened because of an enhanced expectancy for painful stimuli or its forthcoming appearance. However, neural electrophysiological correlates associated with such attentional mechanisms have been scarcely explored. In the current study, expectancy processes of upcoming laser stimulation (painful and non-painful) (...) and its further processing were explored by event-related potentials (ERPs). Nineteen fibromyalgia patients and twenty healthy control volunteers took part in the experiment. Behavioral measures (reaction times and subjective pain perception) were also collected. We manipulated the pain/no pain expectancy through an S1–S2 paradigm (cue-target). S1 (image: triangle or square) predicted the S2 appearance (laser stimulation: warmth or pinprick sensation). Laser stimuli were delivered using a CO2 laser device. Temporal and spatial principal component analyses were employed to define and quantify the ERP component reliability. Statistical analyses revealed the existence of an abnormal pattern of pain expectancy in patients with fibromyalgia. Specifically, our results showed attenuated amplitudes at posterior lCNV component in anticipation of painful stimulation that was not found in healthy participants. In contrast, although larger P2 amplitudes to painful compared to innocuous events were shown, patients did not show any amplitude change in this laser-evoked response as a function of pain predictive cues (as occurred in the healthy control group). Additionally, analyses of the subjective perception of pain and reaction time indicated that laser stimuli preceded by pain cues were rated as more painful than those signaling non-pain expectancy and were associated with faster responses. Differences between groups were not found. The present findings suggest the presence of dysfunction in pain expectation mechanisms in fibromyalgia that eventually may make it difficult for patients to correctly interpret signs that prevent pain symptoms. Furthermore, the abnormal pattern in pain expectancy displayed by fibromyalgia patients could result in ineffective pain coping strategies. Understanding the neural correlates of pain processing and its modulatory factors is crucial to identify treatments for chronic pain syndromes. (shrink)

У статті розкривається проблема постійного стресу і синдрому хронічної втоми, яка не проходить навіть після тривалого сну і відпочинку. Аналіз літератури. Використані роботи авторів: Я Дорожкін, К. Якименко, В. Воронкова, О. Кивлюк, Р. Андрюкайтене, О. Пунченка, Е.Балабанова, М.Бурлуцька, А.Дьомін, Г. Бакер, А. Фартушна, Л. Кемалова, Е. Медведєв, Девід Киппер, Ендрю Роллінгз, Дейв Морріс, Н. М. Попова та багатьох інших. Мета статті - р озглянути проблему хронічної втоми і постійних стресів і такі засоби компенсації, як алкоголь, наркотики, ігри, втеча в віртуальну (...) реальність, які можуть допомогти розслабитися і на деякий час відволіктися від щоденного стресу. Завдання дослідження - у контексті сформульованої мети розкривається сутність ігор та занурення у віртуальну реальність як прояв маргінальності. Методологія дослідження. Методологія побудована на основі комплексного підходу, аналізу і синтезу; синергетичного підходу. Результат дослідження. У добропорядних і благонадійних громадян, що живуть цілком безбідним життям, «ні з того ні з цього» спалахує небувала агресія, яку направляють на тих, що оточують. Невлаштованість життя населення призводить до зниження рівня соціальних очікувань маргінала, створює стресові ситуації, що призводить до захоплення ілюзорними засобами компенсації, які можуть допомогти на деякий час відволіктися від щоденного стресу. Висновки - потреба втечі від дійсності може виражається в ігроманії, а іноді в алкоголізмі і наркоманії, рольовому русі, комп'ютерних іграх, втеч у віртуальну реальність. Це лише один із способів відволіктися від проблем в житті. Не було б їх, знайшли б щось інше. (shrink)