For people who live with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity syndrome illness is a hidden construct. The body does not display the chronicity of the internal experience. This thesis removes the barrier between what is experienced and what is visible by creating visual means of communicating the body’s hidden experience. The place of the viewer is part of this discussion. Through visual methods digital photographic techniques and the current interest in sensory anthropology the embodied sensory chronic illness experience is explored. The hidden experiences were made visual creating “MeBoxes” and masks which showed both the external and embodied internal experiences of chronic illness. As the process of working with and walking beside the participants developed, I found that the discourse on imaging within the literature was inadequate to show the real lived experiences of those with chronic illness. My interactions with the people of this thesis and the process of honouring their experiences required a model that would encourage the viewer to new and perhaps unrealised depths of participation to understand the participant’s multi-faceted and multi-layered experiences. Part of the discussion is the ability of images to communicate sensory experience as is the case with Munch’s The Scream and Picasso’s Guernica. Through the use of a hypertextual self-scape I show how participants created access to their experiences through their visual representations and through a collaborative approach became composite hypertextual self-scape metaphors.

For people who live with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity syndrome illness is a hidden construct. The body does not display the chronicity of the internal experience. This thesis removes the barrier between what is experienced and what is visible by creating visual means of communicating the body’s hidden experience. The place of the viewer is part of this discussion. Through visual methods digital photographic techniques and the current interest in sensory anthropology the embodied sensory chronic illness experience is explored. The hidden experiences were made visual creating “MeBoxes” and masks which showed both the external and embodied internal experiences of chronic illness. As the process of working with and walking beside the participants developed, I found that the discourse on imaging within the literature was inadequate to show the real lived experiences of those with chronic illness. My interactions with the people of this thesis and the process of honouring their experiences required a model that would encourage the viewer to new and perhaps unrealised depths of participation to understand the participant’s multi-faceted and multi-layered experiences. Part of the discussion is the ability of images to communicate sensory experience as is the case with Munch’s The Scream and Picasso’s Guernica. Through the use of a hypertextual self-scape I show how participants created access to their experiences through their visual representations and through a collaborative approach became composite hypertextual self-scape metaphors.

For people who live with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity syndrome illness is a hidden construct. The body does not display the chronicity of the internal experience. This thesis removes the barrier between what is experienced and what is visible by creating visual means of communicating the body’s hidden experience. The place of the viewer is part of this discussion. Through visual methods digital photographic techniques and the current interest in sensory anthropology the embodied sensory chronic illness experience is explored. The hidden experiences were made visual creating “MeBoxes” and masks which showed both the external and embodied internal experiences of chronic illness. As the process of working with and walking beside the participants developed, I found that the discourse on imaging within the literature was inadequate to show the real lived experiences of those with chronic illness. My interactions with the people of this thesis and the process of honouring their experiences required a model that would encourage the viewer to new and perhaps unrealised depths of participation to understand the participant’s multi-faceted and multi-layered experiences. Part of the discussion is the ability of images to communicate sensory experience as is the case with Munch’s The Scream and Picasso’s Guernica. Through the use of a hypertextual self-scape I show how participants created access to their experiences through their visual representations and through a collaborative approach became composite hypertextual self-scape metaphors.

CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is a distressing and potentially debilitating condition. It can also be understood as a contested condition, surrounded by controversy about its nature, causes and treatment. Previous research indicates that those affected experience this climate of contestation as a troubling and discrediting assault, not only on the nature of their condition, but also on their identities. However, little attention has been paid to the voices of young people living with CFS/ME. This thesis extends a relatively small literature in new directions, focusing a constructionist, discursive narrative lens on the accounts of ten young people (aged 13-18) living with a diagnosis of CFS/ME. Narratives constructed during repeated interviews over a year, and drawing on multimodal materials collected by participants over that period, were analysed for their content, structure and performance, with reference to the local and broader contexts of their production. This analysis demonstrates that teenagers construct rich, multi-layered narratives with the potential to enhance understanding of their situation and broader features of the social world. As they speak of the onset of illness, attempts to live with enduring, unpredictable symptoms and their psychosocial consequences, and (for some) the possibility of 'moving on' from the worst of illness, this analysis throws new light on how young people's narratives can be understood as simultaneously constructing the condition ('M.E.') and the identities of those involved ('me' and others), in ways that engage with, reflect and resist prevailing discourses. It is argued that the discursive contexts of CFS/ME and adolescence raise particular challenges for young people as they try to construct credible narratives that convey the full extent of their difficulties, while resisting stigmatising identities (eg, as 'complaining', 'lazy' or otherwise 'not normal'). This analysis highlights implications for them, their families and those who work professionally with them; and for the ongoing social construction of CFS/ME in young people.

Syfte: Att beskriva och kartlägga arbetsterapeutiska interventioner för vuxna med ME/CFS och betydelsen för aktivitetsbalans. Metod: För att besvara syftet så utfördes en litteraturöversikt som inkluderar kvalitativa studier, kvantitativa studier och litteraturstudier, totalt åtta studier. Resultat: Arbetsterapeutiska interventioner har många fördelar som visar att arbetsterapi som används i rehabilitering har betydelse för vuxna med ME/CFS i det dagliga livet på olika sätt. Att aktiviteter skulle delas upp i relation till klientens aktivitetsnivåer och energinivåer synliggjordes. Individuell intervention som Pacing strategier och Gruppintervention som Gruppbaserad self-managementprogram kan användas som arbetsterapeutiska verktyg för diagnosgruppen ME/CFS och har betydelse för aktivitetsbalans. Det framkommer att kortsiktiga individuella interventioner kan vara kan vara effektiva och att Gruppbaserad self-managementprogram visar inga långvariga effekter. Slutsats: Uppsatsen visar fördelar att tillämpa Pacing som copingstrategi inom arbetsterapi för klienter med ME/CFS. Pacing strategier kan vara ett betydelsefullt arbetsterapeutiskt verktyg eftersom klienterna behöver strategier till att bespara sina energinivåer för meningsfulla aktiviteter. Pacing strategier visar ge goda effekter och beskrivs vara den säkraste intervention för klienter med ME/CFS. Pacing möjliggör för klienterna att uppnå aktivitetsbalans i vardagen. Arbetsterapeutisk gruppintervention som Gruppbaserad self-managementprogram kan vara en del av den arbetsterapeutiska rehabiliteringen av klienter med ME/CFS. Gruppbaserade self-managementprogram är funktionellt inom primärvården, vilket uppskattades av klienterna eftersom det möjliggör klientträffar med andra med samma diagnos. Genom gruppinterventionen har klienterna lärt sig att använda Copingstrategier och arbeta med sin acceptans. Gruppinterventionen resulterade att klienter lärde sig att undvika överansträngning, lärde sig att förändra levnadsvanor, energibesparing vilket kan stödja klienterna. Resultatet visar att efter genomförd gruppintervention är det betydelsefullt för klienter att hålla kontakten och skapa nätverk mellan klienterna. Arbetsterapi och arbetsterapeuten har betydelse för rehabiliteringen av klienter med ME/CFS och för deras aktivitetsbalans i dagliga livet. Det är viktigt att ta hänsyn till klientens uppfattningar, värderingar och synpunkter i relation till klientens diagnos. Ett dåligt bemötande och omhändertagande i hälso-och sjukvården kan påverka rehabiliteringen negativt. Det är betydelsefullt att arbetsterapeuten respekterar och har kunskapen om diagnosens pendlande symtom i samband med rehabiliteringsinsatser och interventioner. Det finns ett behov och efterfrågan om vidare forskning inom området, eftersom det är ett begränsat område gällande arbetsterapi och arbetsterapeutens betydelse i rehabilitering för klienter med ME/CFS som kan främja aktivitetsbalans.

Inledning: Myalgisk encefalomyelit/kroniskt trötthetssyndrom (ME/CFS) kännetecknas som en inflammation i hjärna och ryggmärg och karakteriseras framför allt av ihållande utmattning. Sjukdomen är ingen kultursjukdom eller lokal företeelse utan den förekommer i diverse åldrar, länder och sociala grupper. Ansträngningsutlöst försämring (PEM) är ett kardinalsymtom för sjukdomen. PEM kännetecknas av en förvärring av symtom efter rörelse, ortostatisk eller neuromuskulär stress och/eller kognitiv aktivitet. Syfte: Syftet var att beskriva upplevelsen och erfarenheten av ansträngningsutlöst försämring (PEM) hos personer med ME/CFS. Metod: En kvalitativ empirisk studie baserad på bloggar med deduktiv ansats. Livsvärldsteorin användes som en teoretisk referensram. Resultat: Resultatet visade att personer med ME/CFS beskrev PEM som en påfrestande och dramatisk upplevelse och att det krävdes ständiga anpassningar för att undvika försämringen. Situationen förvärrades ytterligare av ett bristfälligt och empatilöst bemötande inom sjukvården. Slutsats: På grund av känslighet för stimuli behöver varje handling gentemot personer med diagnosen ME/CFS reflekteras över huruvida den är till nytta eller till skada. För att förhindra PEM måste vården anpassas utifrån individuella ansträngningströsklar hos varje enskild person. Vidare forskning behövs om vilka förändringar som krävs för att säkerställa högkvalitativ omvårdnad. / Introduction: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is characterized as inflammation of the brain and spinal cord and is characterized above all by persistent fatigue. The disease ME/CFS is not a cultural disease or a local phenomenon and It occurs in various ages, countries and social groups. PEM is characterized by an exacerbation of symptoms after movement, orthostatic or neuromuscular stress and / or cognitive activity. Purpose: The aim of this study was to describe the experiences and the perceptions of post-exertional malaise (PEM) in people with ME/CFS. Method: The study was a qualitative empirical study with a deductive approach based on blogs. Lifeworld was used as a theoretical framework. Result: The results showed that people with ME / CFS described PEM as a stressful and dramatic experience and that constant adjustments were required to avoid this deterioration. The situation was further aggravated by a deficient and unempathetic response in healthcare. Conclusion: Due to abnormal sensitivity to stimuli, each intervention for persons diagnosed with ME / CFS needs to be reflected on whether it is beneficial or harmful. To prevent PEM, healthcare must be adjusted based on the individual effort thresholds of each person. Further research is needed on what improvements are required to ensure high-quality nursing.

Un nombre alarmant de personnes signalent une maladie persistante appelée COVID longue après leur infection par le virus SRAS-CoV-2. Il y a 650 million de cas de COVID-19 dans le monde, dont 10% de ces personnes développent des symptômes persistants. Parmi les symptômes observés, on remarque une fatigue profonde, de la myalgie, des troubles cognitifs, etc. Ces symptômes sont étonnamment similaires à ceux de l'encéphalomyélite myalgique (EM), une maladie chronique débilitante. L’EM est une maladie complexe souvent caractérisée par une fatigue profonde et le malaise après-effort. Environ 70% des patients atteints d'EM décrivent des épisodes d'infections virales comme élément déclencheur. Une autre maladie qui partage des symptômes similaires à l’EM est la fibromyalgie (FM). La FM est une autre maladie chronique et débilitante qui se caractérise par une douleur musculosquelettique et une sensibilisation centrale. Il n’existe toujours pas de traitement ni de test diagnostic à ce jour. Auparavant, nous avons découvert et validé onze microARN en tant que premier panel diagnostic pour l'EM et la FM. La majorité de ces petits ARN non codants participent à la régulation de gène, l'immunité et l'inflammation. Ce projet consiste à déterminer les trajectoires cliniques des personnes atteintes de la COVID longue à l’aide d’un nouveau test pronostic constitué de 11 miARN circulants permettant de différencier les diverses séquelles de la COVID longue. Par la suite, une recherche pan-génomique a permis d’établir une signature moléculaire plus précise pour chacun des six sous-groupes COVID longue. Nous proposons que les effets du virus SRAS-CoV-2 sur les microARN de l'hôte pourraient déclencher la persistance des symptômes de la COVID longue et que l’expression différentielle de certains microARN puissent contribuer au développement de différentes séquelles à long terme. Nous avons recruté des participants âgés de plus de 18 ans ayant été infectés par le virus SRAS- CoV-2, non-hospitalisés et présentant une COVID longue de plus de six mois et des sujets sains (groupe pré-pandemie) n’ayant pas reportés d’infection. L’analyse des symptômes a été réalisée à l’aide de trois questionnaires (SF-36, MFI-20, DSQ) complétés par tous les participants. Les niveaux d’expression de 11 microARN, précédemment identifiée dans l’EM, ont été mesurés par RT-qPCR dans des échantillons de plasma et la détermination des différentes trajectoires associées à des séquelles à long terme a été réalisée par analyse des composantes principales et validée par Random Forest Model (RFM). En stratifiant les patients selon leur signature de 11 miARN, nous avons évalué l’expression globale des 2549 miARN pour chaque séquelle et identifié de nouveaux miRNA spécifiques pour chacun des groupes à l’aide de la technologie microRNA array Agilent, une biopuce de la société Agilent. Nos données préliminaires nous ont permis d’identifier une signature moléculaire spécifique à chacune des séquelles de la COVID longue. Ces résultats nous permettrons de développer un nouveau test diagnostic basé sur les miRNA afin de prédire les conséquences à la suite de l’infection par le virus SRAS-CoV-2. / An alarming number of people are reporting a persistent illness called long COVID after their infection with the SARS-CoV-2 virus. There are an estimated 650 million cases of COVID-19 worldwide, with 10% of these people developing persistent symptoms. Among the symptoms observed, we notice profound fatigue, myalgia, cognitive disorders, etc. These symptoms are strikingly similar to those of myalgic encephalomyelitis (ME), a debilitating chronic disease. ME is a complex disease often characterized by profound fatigue and post-exertional malaise. Approximately 70% of ME patients describe episodes of viral infections as a trigger. Another disease that shares similar symptoms to ME is fibromyalgia (FM). FM is another chronic and debilitating disease that is characterized by musculoskeletal pain and central sensitization. There is still no treatment or diagnostic test to date. Previously, we discovered and validated eleven microRNAs as the first diagnostic panel for ME. Most of these small non-coding RNAs participate in gene regulation, immunity and inflammation. The objective of this project was to build a new diagnostic test to differentiate the various after-effects of long COVID using miRNAs. This project consists of determining the clinical trajectories of people with long COVID using a new prognostic test made up of 11 circulating miRNAs making it possible to differentiate the various after-effects of long COVID. Subsequently, a pan-genomic search made it possible to establish a more precise molecular signature for each of the six long COVID subgroups. We recruited participants aged over 18 years who had been infected with the SARS-CoV-2 virus, who were not hospitalized and had symptoms of long COVID for more than six months and healthy subjects (pre-pandemic group) who had not reported infection. The analysis of symptoms was carried out using three questionnaires (SF-36, MFI-20, DSQ) completed by all participants. The expression levels of 11 microRNAs previously identified in EM, from plasma samples were measured by RT-qPCR and the determination of the different trajectories associated with long-term sequelae was carried out by principal component analysis (PCA) and validated by Random Forest Model (RFM). By stratifying patients according to their signature of 11 miRNAs, we evaluated the overall expression of the 2549 miRNAs for each sequelae and identified new miRNAs specific for each of the groups using the Agilent microRNA array technology, a biochip from the company Agilent. Our preliminary data allowed us to identify a molecular signature specific to each of the after-effects of long COVID. These results will allow us to develop a new diagnostic test based on miRNAs in order to predict the consequences following infection by SARS-CoV-2 viruses.

No description available.

La douleur est une réponse normale qui nous permet de réagir en réponse à un trauma ou une situation qui pourrait potentiellement causer du tort à notre corps. Cette expérience désagréable n’est pas seulement physiologique, mais elle est aussi psychologique, émotionnelle et socio-culturelle. C’est ce qui la rend aussi complexe et subjective. Lorsque les mécanismes de modulation de la douleur ne fonctionnent plus normalement, ces douleurs peuvent devenir chroniques et être très handicapantes pour les patients. Dans cette étude, nous nous sommes plus particulièrement focalisés sur certaines maladies musculosquelettiques présentant de la douleur chronique telles que l’encéphalomyélite myalgique (EM), la fibromyalgie (FM) et l’arthrose ou l’ostéoarthrite (OA). L’EM et la FM sont deux maladies complexes et hétérogènes qui ont plusieurs symptômes qui se chevauchent. L’EM se caractérise généralement par de la fatigue chronique qui n’est pas soulagée par le repos et par des malaises après-effort (PEM). Alors que la FM se caractérise davantage par de la douleur chronique musculaire et articulaire. Puis, l’OA est une maladie débilitante où les patients ont une dégradation progressive du cartilage articulaire causant de la douleur chronique qui est davantage localisée au niveau des joints articulaires atteints. Actuellement, il n’existe pas de biomarqueurs idéaux pour mesurer le niveau de douleur pour ces maladies dont l’étiologie reste incertaine. Toutefois, une étude récente a démontré une diminution de l’expression du gène MFAP3 au niveau des cellules mononuclées du sang périphérique (PBMC) chez des individus présentant des états de douleur élevée à la suite d’un syndrome post-traumatique. Ce gène code pour une protéine appelée protéine associée aux microfibrilles 3 (MFAP3), qui participent dans plusieurs processus biologiques dont l’assemblage des microfibrilles, l'élastinogenèse et l'homéostasie tissulaire, et pourrait aussi être une protéine clé impliquée dans l’inhibition de la douleur. L’objectif de cette étude est de mieux comprendre le rôle de la protéine MFAP3 et son implication dans la douleur dans ces différentes pathologies. L’expression du gène MFAP3 a été mesurée dans les PBMC de patients atteints d’EM, de FM, d’OA et de sujets sains (HC) et a été corrélée aux niveaux de douleur des patients. Une recherche in silico nous a permis d’identifier des récepteurs membranaires impliqués dans la douleur et pouvant interagir physiquement avec la protéine MFAP3 dont le récepteur HTR3A (le récepteur à sérotonine 3A). La spectroscopie cellulaire diélectrique a été utilisée pour valider cette interaction dans des cellules Jurkat (lymphocytes T humains immortalisés) dans des conditions standards. Il a été observé que la protéine MFAP3 inhibait la réponse induite par la stimulation de ce récepteur. Cette recherche pourrait éventuellement conduire au développement de nouvelles thérapies pour traiter la douleur associée à ces maladies musculosquelettiques. / Pain is a normal response that allows us to react in response to trauma or in situations that are dangerous or could potentially harm our body. This unpleasant experience is not only physiological, but it is also psychological, emotional, and socio-cultural. This is what makes it so complex and subjective. When pain modulation mechanisms no longer function normally, pain can become chronic and be very disabling for patients. In this study, we particularly focused on some musculoskeletal diseases presenting chronic pain such as myalgic encephalomyelitis (ME), fibromyalgia (FM) and osteoarthritis (OA). ME and FM are two complex and heterogeneous diseases that exhibit several overlapping symptoms. ME is characterized by a chronic fatigue that is not relieved by rest and post-exertional malaise (PEM), whereas FM is rather characterized by more chronic muscle and joint pain. In regard to OA, this debilitating disease leads to a progressive degradation of articular cartilage joints resulting in chronic pain which is more localized in the affected joints. Currently, there are no ideal biomarkers to measure pain level for these diseases and their etiology remains unclear. However, a recent study demonstrated a decrease in MFAP3 gene expression in peripheral blood mononuclear cells (PBMC) in individuals presenting high pain states following a post-traumatic syndrome. This gene encodes a protein called Microfibril-associated protein 3 (MFAP3), which participates in several biological processes including microfibril assembly, elastinogenesis and tissue homeostasis, and could also be a key protein involved in pain inhibition. The objectives of this study were to better understand the role of the MFAP3 protein and its involvement in pain in these different pathologies. MFAP3 gene expression was measured in PBMCs from patients with ME, FM, OA and healthy subjects (HC) and correlated with their pain levels. In silico research allowed us to identify membrane receptors involved in pain that can physically interact with the MFAP3 protein, including the HTR3A receptor (Serotonin receptor 3A). Cellular dielectric spectroscopy was used to validate this interaction in Jurkat cells (immortalized human T lymphocytes) under standard conditions. It was observed that MFAP3 inhibits the response induced by this receptor stimulation. This research could eventually lead to the development of new therapies to treat pain associated with these musculoskeletal diseases.

La Sindrome da Affaticamento Cronico/Encefalomielite Mialgica (CFS/ME), è una grave malattia multisistemica caratterizzata da anomalie immunologiche e disfunzioni del metabolismo energetico. Recenti evidenze suggeriscono l’esistenza di una forte correlazione tra disbiosi e condizione patologica. La presente ricerca ha analizzato la composizione del microbiota intestinale ed orale in pazienti con CFS/ME rispetto a controlli sani e ha determinato se eventuali differenze osservate potrebbero essere utili in futuro per l'identificazione di biomarcatori diagnostici. La composizione batterica fecale e salivare dei pazienti con CFS/ME è stata studiata mediante sequenziamento Illumina degli ampliconi del gene 16S rRNA. Il microbiota fecale dei pazienti con CFS/ME ha mostrato una significativa riduzione di Lachnospiraceae, in particolare di Anaerostipes, rispetto ai gruppi di soggetti senza CFS/ME e un incremento di Phascolarctobacterium faecium e unclassified Ruminococcus. Bacteroides vulgatus, unclassified Bacteroides, Bacteroides uniformis e unclassified Barnesiella sono risultati significativamente più abbondanti nei pazienti con CFS/ME. Il microbiota orale dei pazienti con CFS/ME ha mostrato un aumento significativo di Rothia dentocariosa. Il profilo metabolico fecale di un sottogruppo di pazienti con CFS/ME ha mostrato un aumento complessivo di SCFA e di derivati dell'indolo rispetto ai gruppi non CFS/ME, suggerendo un aumento dei processi di fermentazione. I nostri risultati supportano l'ipotesi autoimmune per la CFS/ME e se saranno confermati da studi più ampi, le differenze rilevate nei profili microbici dei pazienti CFS/ME potrebbero essere utilizzate come markers per una diagnosi più accurata e per lo sviluppo di strategie terapeutiche specifiche. / The Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), is a severe multisystemic disease characterized by immunological abnormalities and dysfunction of energy metabolism. Recent evidence suggest that there is a strong correlation between dysbiosis and pathological condition. The present research investigated the composition of the intestinal and oral microbiota in CFS/ME patients in comparison to healthy controls and determined whether any observed differences could be useful for the identification of diagnostic biomarkers. The fecal and salivary bacterial composition in CFS/ME patients was investigated by Illumina sequencing of 16S rRNA gene amplicons. The fecal microbiota of CFS/ME patients showed a significant reduction of Lachnospiraceae, particularly Anaerostipes, compared to the non-CFS/ME groups, and an increase of Phascolarctobacterium faecium and unclassified Ruminococcus. Bacteroides vulgatus, unclassified Bacteroides, Bacteroides uniformis and unclassified Barnesiella resulted significantly more abundant in CFS/ME patients. The oral microbiota of CFS/ME patients showed a significant increase of Rothia dentocariosa. The fecal metabolic profile of a subgroup of CFS/ME patients revealed an overall increase of SCFAs and indole derivatives compared to the non-CFS/ME groups, suggesting an increase in the fermentation processes. Our results support the autoimmune hypothesis for CFS/ME condition and if confirmed by larger studies, the differences detected in the microbial profiles of CFS/ME patients may be used as markers for a more accurate diagnosis and for the development of specific therapeutic strategies.