Fatigue-Biomedicine Health and Behavior最新文献

{"title":"Voice of the patient: people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) share in their own words.","authors":"Dana J Brimmer, Jin-Mann S Lin, Elizabeth R Unger","doi":"10.1080/21641846.2024.2444826","DOIUrl":"10.1080/21641846.2024.2444826","url":null,"abstract":"<p><strong>Background: </strong>Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, debilitating illness affecting millions of people worldwide. Patients with ME/CFS often feel misunderstood and report facing barriers to healthcare utilization.</p><p><strong>Objective: </strong>We report on a Voice of the Patient (VOP) series that used tenets from photovoice and hermeneutic phenomenology methods. The approach prioritized respecting and engaging patients as they share individual experiences of living with ME/CFS.</p><p><strong>Methods: </strong>We developed a 5-step process that could be replicated for interviewing patients in their own words. The process prioritized respecting patients while developing, documenting, and sharing individual accounts of living with ME/CFS. The standardized process for gathering each VOP story enabled individuals to share and participate on their own terms.</p><p><strong>Results: </strong>Over four years, eight VOP stories were completed and posted on CDC's ME/CFS website. The stories received over 196,000 page views. Each story was completed in approximately six months. Participants expressed gratitude for the opportunity to share experiences and were appreciative of the process that involved them in the development of stories.</p><p><strong>Conclusions: </strong>Qualitative methods guided the process for participants taking a central role in sharing stories, which in turn may help educate about patient experiences with ME/CFS. Standardization of steps enabled consistency and transparency. Building flexibility into the process allowed interviewing a range of people with ME/CFS (i.e. bed bound to working) and enabled patients to give narratives in their voice. This process may help to share experiences of people with other chronic diseases or infection associated chronic conditions.</p>","PeriodicalId":44745,"journal":{"name":"Fatigue-Biomedicine Health and Behavior","volume":"13 2","pages":"1-11"},"PeriodicalIF":2.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11926923/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143693836","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Face and content validity of a holistic assessment questionnaire to assess cancer-related fatigue after breast cancer.","authors":"Kim A E Wijlens, Annemieke Witteveen, Lian Beenhakker, Ester J M Siemerink, Reinoud Achterkamp, Sabine Siesling, Miriam M R Vollenbroek-Hutten, Christina Bode","doi":"10.1080/21641846.2024.2389007","DOIUrl":"https://doi.org/10.1080/21641846.2024.2389007","url":null,"abstract":"<p><strong>Background and objective: </strong>Cancer-related fatigue (CRF) affects the quality of life after breast cancer. In a previous study, we developed a 72-item questionnaire that assesses CRF from a holistic point of view; named the Holistic Assessment of CRF (HA-CRF) questionnaire. The current study assessed the face and content validity of the HA-CRF questionnaire.</p><p><strong>Methods: </strong>Using a mixed-method approach, ten breast cancer survivors (BCS) did a cognitive walkthrough of the HA-CRF via an app followed by a semi-structured interview about relevancy and essentiality (qualitative). In addition, ten health care professionals (HCPs) assessed the relevancy, clarity, and essentiality of each item via a questionnaire (quantitative).</p><p><strong>Results: </strong>BCS indicated minor textual improvement for four items and six items were not completely clear. The app was considered easy to use and the HC-CRF was on average completed in 18 minutes. The HA-CRF questionnaire provided openness about fatigue and gave the feeling of being heard. The items were helpful and induced self-awareness. HCPs indicated 71% of items being very clear or minor revisions proposed by the minority, with 64% of items being essential and 92% considered relevant.</p><p><strong>Conclusions: </strong>The HA-CRF showed good face and excellent content validity. Further research is needed to assess its ability to monitor in daily life.</p>","PeriodicalId":44745,"journal":{"name":"Fatigue-Biomedicine Health and Behavior","volume":"12 4","pages":"293-307"},"PeriodicalIF":2.6,"publicationDate":"2024-08-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11404859/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142298053","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Psychometric evaluation of the Arabic version of the fatigue 5-item measure (FM) among physiotherapy patients in Libya","authors":"Alhadi M. Jahan, Ali E. Rwaiha, Fatma A. Iqmeea","doi":"10.1080/21641846.2023.2260482","DOIUrl":"https://doi.org/10.1080/21641846.2023.2260482","url":null,"abstract":"ABSTRACTBackground This cross-cultural validation study aimed to assess the psychometric properties and suitability of the Arabic version of the Fatigue Measure (FM) in the context of musculoskeletal patients in Libya.Methods A total of 139 patients from diverse physiotherapy facilities participated in the study. The FM was administered to assess participants’ perceived fatigue levels. Statistical analyses were performed to examine the FM's cross-cultural validity, including the assessment of internal consistency, test-retest reliability, construct validity, Exploratory Factor Analysis, and the ROC curve analysis.Results The FM demonstrated strong internal consistency and reliability in the Libyan context, with a Cronbach's alpha coefficient of 0.87. Test-retest reliability was high (ICC = 0.92, Cronbach alpha = 0.95). The EFA confirmed the unidimensionality of this measure, indicating the stability of the FM's underlying dimensions in this cultural setting. The ROC curve analysis revealed significant results with the AUC value = 0.95 [95% CI 0.91–0.97], (p &lt; 0.001), indicating excellent sensitivity and specificity.Conclusions The findings support the cross-cultural validity of the FM among musculoskeletal patients in Libya, suggesting its suitability as an effective tool for assessing fatigue in this population. Its brevity and ease of use make it valuable for clinicians and researchers seeking to address fatigue-related issues in the context of musculoskeletal conditions in Libya. Further research could explore the FM's responsiveness to intervention and longitudinal changes in fatigue levels to enhance its utility in clinical practice. Overall, the FM holds promise as a reliable instrument for measuring fatigue in musculoskeletal patients in the Libyan cultural context.KEYWORDS: Validationfatigue measureLibyapsychometric propertiesfactor analysisarabic Disclosure statementNo potential conflict of interest was reported by the author(s).Additional informationNotes on contributorsAlhadi M. JahanDr. Alhadi M. Jahan is a dedicated musculoskeletal physiotherapist, researcher, and scholar with a passion for improving the lives of individuals through his expertise in rehabilitation. In 2022, he earned his PhD in Rehabilitation Sciences, building upon a strong academic foundation that included a Master's degree in Rehabilitation obtained in 2009 and a Bachelor's degree in Physiotherapy, which he completed in 2006. He is also a lecturer at the Physiotherapy Department, College of Medical Technology, Misrata, Libya.Ali E. RwaihaAli E. Rwaiha is a neurological physiotherapist. Currently, he is working in physiotherapy clinics in Misrata, Libya. He is also a lecturer at Physiotherapy Department, College of Medical Technology, Misrata, Libya. He holds a master's degree in physiotherapy from Sheffield Hallam University, UK.Fatma A. IqmeeaFatma A. Iqmeea is an undergraduate student in the Department of Physiotherapy, College of Medical Technology, Misrata, Li","PeriodicalId":44745,"journal":{"name":"Fatigue-Biomedicine Health and Behavior","volume":"11 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135207519","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Prediction of evening fatigue severity in outpatients receiving chemotherapy: less may be more.","authors":"Kord M Kober,&nbsp;Ritu Roy,&nbsp;Anand Dhruva,&nbsp;Yvette P Conley,&nbsp;Raymond J Chan,&nbsp;Bruce Cooper,&nbsp;Adam Olshen,&nbsp;Christine Miaskowski","doi":"10.1080/21641846.2021.1885119","DOIUrl":"https://doi.org/10.1080/21641846.2021.1885119","url":null,"abstract":"<p><strong>Background: </strong>Fatigue is the most common and debilitating symptom experienced by oncology patients undergoing chemotherapy. Little is known about patient characteristics that predict changes in fatigue severity over time.</p><p><strong>Purpose: </strong>To predict the severity of evening fatigue in the week following the administration of chemotherapy using machine learning approaches.</p><p><strong>Methods: </strong>Outpatients with breast, gastrointestinal, gynecological, or lung cancer (<i>N</i>=1217) completed questionnaires one week prior to and one week following administration of chemotherapy. Evening fatigue was measured with the Lee Fatigue Scale (LFS). Separate prediction models for evening fatigue severity were created using clinical, symptom, and psychosocial adjustment characteristics and either evening fatigue scores or individual fatigue item scores. Prediction models were created using two regression and three machine learning approaches.</p><p><strong>Results: </strong>Random forest (RF) models provided the best fit across all models. For the RF model using individual LFS item scores, two of the 13 individual LFS items (i.e., \"worn out\", \"exhausted\") were the strongest predictors.</p><p><strong>Conclusion: </strong>This study is the first to use machine learning techniques to predict evening fatigue severity in the week following chemotherapy from fatigue scores obtained in the week prior to chemotherapy. Our findings suggest that the language used to assess clinical fatigue in oncology patients is important and that two simple questions may be used to predict evening fatigue severity.</p>","PeriodicalId":44745,"journal":{"name":"Fatigue-Biomedicine Health and Behavior","volume":"9 1","pages":"14-32"},"PeriodicalIF":2.8,"publicationDate":"2021-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/21641846.2021.1885119","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39174577","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Saliva Fatigue Biomarker Index As a Marker for Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community Based Sample.","authors":"Leonard A Jason,&nbsp;John Kalns,&nbsp;Alicia Richarte,&nbsp;Ben Z Katz,&nbsp;Chelsea Torres","doi":"10.1080/21641846.2021.1994222","DOIUrl":"https://doi.org/10.1080/21641846.2021.1994222","url":null,"abstract":"<p><strong>Objective: </strong>The prevalence of pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been estimated from an ethnically and sociodemographically diverse community-based random sample of 10,119 youth aged 5-17. A team of physicians made a final diagnosis of ME/CFS if the participants met criteria for up to three selected case definitions following medical and psychiatric evaluations. We assessed whether a salivary biomarker of fatigue could identify youth with ME/CFS.</p><p><strong>Study design: </strong>We examined the ratio of the concentrations of 2 peptide fragments in saliva, referred to as the Fatigue Biomarker Index (FBI), in participants from our study diagnosed with ME/CFS (n=59) and matched controls (n=39).</p><p><strong>Results: </strong>Significant overall differences were found in the FBI between those participants with severe ME/CFS and those with ME/CFS and the controls.</p><p><strong>Conclusions: </strong>If confirmed in other populations, the FBI could serve as an objective test to aid in the diagnosis of severe ME/CFS.</p>","PeriodicalId":44745,"journal":{"name":"Fatigue-Biomedicine Health and Behavior","volume":"9 4","pages":"189-195"},"PeriodicalIF":2.8,"publicationDate":"2021-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8855987/pdf/nihms-1751687.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39815187","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Fatigue Severity among Adults with Chronic Low Back Pain: Relations to Opioid Use and Hazardous Alcohol Use.","authors":"Kara Manning,&nbsp;Andrew H Rogers,&nbsp;Justin M Shepherd,&nbsp;Cameron Matoska,&nbsp;Joseph W Ditre,&nbsp;Lorra Garey,&nbsp;Brooke Y Kauffman,&nbsp;Michael J Zvolensky","doi":"10.1080/21641846.2021.1966984","DOIUrl":"https://doi.org/10.1080/21641846.2021.1966984","url":null,"abstract":"<p><strong>Background: </strong>Chronic low back pain is the second leading cause of disability in the United States and is related to greater risk of opioid misuse. Research suggests that severe fatigue may be a relevant factor for better understanding the greater rates of opioid and misuse among adults with chronic low back pain. Therefore, the current study sought to examine differences in opioid misuse, risk for opioid use disorder, and hazardous alcohol use in two different groups: one group with clinically significant fatigue, and one group without clinically significant fatigue.</p><p><strong>Methods: </strong>Participants were recruited utilizing a validated online survey management system that yielded 1,681 adults (70.0% female, 81.1% White, <i>M</i> _<i>age</i> = 44.5 years, <i>SD</i> = 11.88) with current mild to severe chronic low back pain. One-way analysis of covariance (ANCOVA) models were conducted to examine group differences.</p><p><strong>Results: </strong>Among adults with chronic low back pain, those with clinically significant fatigue reported significantly greater opioid misuse and risk for opioid use disorder compared to those without clinically significant fatigue. These results were evident after controlling for pain severity and interference. The results for hazardous alcohol use were not significantly different between groups.</p><p><strong>Conclusions: </strong>Clinically significant fatigue is a distinguishing characteristic among adults with chronic low back pain in terms of opioid misuse and risk for opioid use disorder. Potential clinical implications of such findings suggest that it may be important for clinicians to assess fatigue levels to better manage opioid misuse potential among adults with chronic low back pain.</p>","PeriodicalId":44745,"journal":{"name":"Fatigue-Biomedicine Health and Behavior","volume":" ","pages":"148-158"},"PeriodicalIF":2.8,"publicationDate":"2021-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8675936/pdf/nihms-1733098.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39851981","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A hierarchical logistic regression predicting rapid respiratory rates from post-exertional malaise.","authors":"Joseph Cotler,&nbsp;Ben Z Katz,&nbsp;Corine Reurts-Post,&nbsp;Ruud Vermeulen,&nbsp;Leonard A Jason","doi":"10.1080/21641846.2020.1845287","DOIUrl":"https://doi.org/10.1080/21641846.2020.1845287","url":null,"abstract":"<p><strong>Background: </strong>Past research has found high rates of hyperventilation in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), but hyperventilation can be influenced by psychological factors. Clinical respiratory rates have been less frequently assessed.</p><p><strong>Aim: </strong>This study aimed to identify the predictors of rapid respiratory rates in patients referred to an outpatient clinic specializing in ME/CFS.</p><p><strong>Methods: </strong>Adults (<i>n</i> = 216) referred to an outpatient clinic specializing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) participated in a two-day cardiopulmonary exercise test. As part of that evaluation, subjects had resting respiratory rates measured on two consecutive days. The current study used questionnaires to assess the relationship between tachypnea (rapid respiratory rates) and a variety of domains including post-exertional malaise (PEM), a common complaint in patients with ME/CFS, and psychiatric/somatic symptoms, using hierarchical logistic regression analysis.</p><p><strong>Results: </strong>PEM was a significant predictor of tachypnea, while psychological/somatic assessments and sedentary behaviors were not significantly predictive of tachypnea.</p><p><strong>Conclusions: </strong>These findings suggest that respiratory rate may be useful as an objective clinical metric of PEM, and potentially ME/CFS.</p>","PeriodicalId":44745,"journal":{"name":"Fatigue-Biomedicine Health and Behavior","volume":" ","pages":"205-213"},"PeriodicalIF":2.8,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/21641846.2020.1845287","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40458568","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Moderating Role of Fatigue Sensitivity in the Relation between Depression and Alcohol and Opioid Misuse among Adults with Chronic Low Back Pain.","authors":"Kara Manning,&nbsp;Andrew H Rogers,&nbsp;Lorra Garey,&nbsp;Michael J Zvolensky","doi":"10.1080/21641846.2020.1818933","DOIUrl":"https://doi.org/10.1080/21641846.2020.1818933","url":null,"abstract":"<p><strong>Objective: </strong>Chronic low back pain is the second leading cause of disability in the United States and is frequently related to increased risk of opioid and alcohol misuse. Depression is associated with poor substance use outcomes among persons with chronic low back pain. Theoretically, the influence of depression on opioid and alcohol misuse among those with chronic low back pain may vary as a function of fatigue sensitivity.</p><p><strong>Method: </strong>To empirically test this theorized model, the current study examined fatigue sensitivity as a moderator for the relation between depression and opioid and alcohol misuse among 291 adults (69.1% female, <i>M</i> _<i>age</i> <i>=</i> 45.77 years, <i>SD</i> = 11.22) with chronic low back pain currently using opioids.</p><p><strong>Results: </strong>Results suggested that fatigue sensitivity moderated the effect of depression on opioid misuse (β=0.60, <i>p</i>= .001, 95%CI [0.02, 0.06]) and alcohol misuse (β=0.45, <i>p</i>= .025, 95%CI [0.002, 0.03]). Examination of simple slopes revealed that the association between depression and opioid and alcohol misuse was statistically significant for those with higher levels of fatigue sensitivity, but not lower levels of fatigue sensitivity.</p><p><strong>Conclusions: </strong>Overall, the current investigation provides initial empirical support for the moderating role of fatigue sensitivity in the relation between depression and alcohol and opioid misuse among adults with chronic low back pain.</p>","PeriodicalId":44745,"journal":{"name":"Fatigue-Biomedicine Health and Behavior","volume":"8 3","pages":"130-143"},"PeriodicalIF":2.8,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/21641846.2020.1818933","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39276960","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The International Collaborative on Fatigue Following Infection (COFFI).","authors":"Ben Z Katz, Simon M Collin, Gabrielle Murphy, Rona Moss-Morris, Vegard Bruun Wyller, Knut-Arne Wensaas, Jeannine L A Hautvast, Chantal P Bleeker-Rovers, Ute Vollmer-Conna, Dedra Buchwald, Renée Taylor, Paul Little, Esther Crawley, Peter D White, Andrew Lloyd","doi":"10.1080/21641846.2018.1426086","DOIUrl":"10.1080/21641846.2018.1426086","url":null,"abstract":"<p><strong>Background: </strong>The purpose of the Collaborative on Fatigue Following Infection (COFFI) is for investigators of post-infection fatigue (PIF) and other syndromes to collaborate on these enigmatic and poorly understood conditions by studying relatively homogeneous populations with known infectious triggers. Utilizing COFFI, pooled data and stored biosamples will support both epidemiological and laboratory research to better understand the etiology and risk factors for development and progression of PIF.</p><p><strong>Methods: </strong>COFFI consists of prospective cohorts from the UK, Netherlands, Norway, USA, New Zealand and Australia, with some cohorts closed and some open to recruitment. The 9 cohorts closed to recruitment total over 3,000 participants, including nearly 1000 with infectious mononucleosis (IM), > 500 with Q fever, > 800 with giardiasis, > 600 with campylobacter gastroenteritis (CG), 190 with Legionnaires disease and 60 with Ross River virus. Follow-ups have been at least 6 months and up to 10 years. All studies use the Fukuda criteria for defining chronic fatigue syndrome (CFS).</p><p><strong>Results: </strong>Preliminary analyses indicated that risk factors for non-recovery from PIF included lower physical fitness, female gender, severity of the acute sickness response, and autonomic dysfunction.</p><p><strong>Conclusions: </strong>COFFI (https://internationalcoffi.wordpress.com/) is an international collaboration which should be able to answer questions based on pooled data that are not answerable in the individual cohorts. Possible questions may include the following: Do different infectious triggers different PIF syndromes (e.g., CFS vs. irritable bowel syndrome)?; What are longitudinal predictors of PIF and its severity?</p>","PeriodicalId":44745,"journal":{"name":"Fatigue-Biomedicine Health and Behavior","volume":"6 2","pages":"106-121"},"PeriodicalIF":2.6,"publicationDate":"2018-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6333416/pdf/nihms-1514861.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"36926493","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Using a participatory approach to develop and implement the UK ME/CFS Biobank.","authors":"Eliana M Lacerda,&nbsp;Caroline C Kingdon,&nbsp;Erinna W Bowman,&nbsp;Luis Nacul","doi":"10.1080/21641846.2018.1396021","DOIUrl":"https://doi.org/10.1080/21641846.2018.1396021","url":null,"abstract":"Since the millennium, we have witnessed an increasing number of biobanks acting as key infrastructure for biomedical research [1]. Biobanks are a cost-effective and nimble means of providing high-quality samples linked to comprehensive clinical and socio-demographic participant data. This editorial highlights the importance of biobanks for the advancement of scientific knowledge and of patient participation and engagement as drivers of success by outlining the procedures and rationale behind the development of the UK ME/CFS Biobank, which used a participatory approach. For over 30 years, participatory community research has brought together successfully academics and potential research participants in the planning stages of projects, allowing both parties to share the power of decision-making [2] in the research process, despite a perceived threat to the academic research establishment [3]. Having its roots grounded on two distinct schools of thought, Kurt Levin’s cycle of ‘fact finding, action and reflection’ was initiated in the 40’s while empowering dialogical research methods originated in developing countries during the 70’s [4,5,6]. The participatory research approach incorporated further contributions from feminist and post-colonialist authors, and has evolved into a framework, with the interconnected elements of participation, research, and action at its core [5]. The lack of validation and legitimisation of ME/CFS has resulted in part from an inadequate understanding of its aetiology and pathophysiology as well as the absence of sensitive and specific tests to confirm diagnosis. This in turn has hampered investigation into, and development of, effective treatments. Despite the growing number of published biomedical research studies on ME/CFS [7], advances in understanding disease mechanisms and the translation of research findings into clinical practice have been limited. The lack of coordination in ME/CFS research, of consensus on case definitions, and of attention to methodological rigour have worked together to threaten the interpretation of evidence and the comparability and generalisability of study outcomes [8,9,10]. Such poor understanding of the causality and disease mechanisms of ME/CFS has led to disagreements about its nature and management among professionals, patients, and the general population. These differences have further impeded research progress and affected the healthcare provided to people with ME/CFS (PWME), who often need to overcome significant barriers related to the recognition of their illness and its effect on their lives, as well as to access to care and effective treatment [11]. Particularly problematic have been conflicts between patients, doctors and researchers related to distinct perceptions of the nature of the condition and its management [12,13]. In the clinical context, PWME often have defined ideas about what their issues are and how they might be analysed and managed, which sometimes conflict with","PeriodicalId":44745,"journal":{"name":"Fatigue-Biomedicine Health and Behavior","volume":"6 1","pages":"1-4"},"PeriodicalIF":2.8,"publicationDate":"2018-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/21641846.2018.1396021","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"36253122","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}