Tag: patient experience

The Journey Towards Becoming Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Patients’ Experiences

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome is a disease that negatively affects patients’ quality of life. Previous research has shown that these patients are commonly not taken seriously when seeking medical attention.

Aim: The aim was to examine the experiences of patients with ME/CFS regarding their interaction with Swedish primary healthcare professionals.

Method: The study used a qualitative and exploratory design, taking place in a specialist clinic in Sweden. Data consisted of interviews with 13 patients with ME/CFS, which were analysed using content analysis.

Findings: For patients, it was Feeling truly connected during the period before they received a diagnosis. Time is an important factor, and in the phase from initial symptoms to diagnosis, Knowledge is power.

Conclusion: Patients with ME/CFS were met with different levels of knowledge and interest from healthcare professionals. These challenges might be related to the relative unawareness and lack of knowledge of the disease and the underlying cultural scepticism still present.

Source: Bo Christer Bertilson., et al. “The Journey Towards Becoming Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Patients’ Experiences”. EC Neurology 14.2 (2022): 49-56.  https://www.ecronicon.com/ecne/pdf/ECNE-14-01012.pdf (Full text as PDF file)

Lessons from Long COVID: working with patients to design better research

The perspectives of people with lived experience of any condition being researched must actively inform the research questions asked and the way in which we go about answering them. The experience of Long Covid gives a contemporary example of how working together with patients is integral to medical research.

When ‘Long COVID’ emerged as a concept in Spring 2020, it was those with lived experience of the disease who gave it its name and characterized it to the world, initially through use of social media1. Even though chronic illness induced by viral infection is not a new phenomenon, awareness of this potential outcome of the COVID-19 pandemic was entirely absent from public messaging, even at a time when large numbers of people were becoming infected with SARS-CoV-2.

Read the rest of this article HERE.

Source: Alwan, N.A. Lessons from Long COVID: working with patients to design better research. Nat Rev Immunol (2022). https://doi.org/10.1038/s41577-022-00692-6  (Full text)

Stigma perceived by patients with functional somatic syndromes and its effect on health outcomes – A systematic review

Abstract:

Background: Patients with functional somatic syndromes (FSS) experience stigma which arguably affects their health.

Aim: To determine the presence of perceived stigma and its effects on physical and mental health in patients with FSS compared to patients with comparable explained conditions.

Methods: A comprehensive search of PubMed, Embase, PsycINFO, CINAHL and Cochrane Library was performed to select studies focusing on stigma perceived by patients with irritable bowel syndrome (IBS), fibromyalgia (FM) or chronic fatigue syndrome (CFS), comparing these patients to patients with comparable but explained conditions.

Results: We identified 1931 studies after duplicate removal. After screening we included eight studies: one study about all three FSS, one about IBS, five about FM and one about CFS. We found that patients with IBS did not consistently experience higher levels of stigma than those with a comparable explained condition. Patients with CFS and FM experienced higher levels of stigma compared to patients with comparable explained conditions. All studies showed a correlation between stigma and negative health outcomes.

Discussion: Patients with FSS experience stigma and negative health outcomes. However, experiencing stigma is not restricted to patients with FSS, as many patients with explained health conditions also experience stigma. Whether stigma has more negative health consequences in patients with FSS compared to patients with explained health conditions remains unclear and should be assessed in future research.

Source: Ko C, Lucassen P, van der Linden B, Ballering A, Olde Hartman T. Stigma perceived by patients with functional somatic syndromes and its effect on health outcomes – A systematic review. J Psychosom Res. 2022 Jan 6;154:110715. doi: 10.1016/j.jpsychores.2021.110715. Epub ahead of print. PMID: 35016138. https://pubmed.ncbi.nlm.nih.gov/35016138/

 

The contested meaning of “long COVID” – Patients, doctors, and the politics of subjective evidence

Abstract:

In our article, we reconstruct how the patient-made term “long COVID” was able to become a widely accepted concept in public discourses. While the condition was initially invisible to the public eye, we show how the mobilization of subjective evidence online, i.e., the dissemination of reports on the different experiences of lasting symptoms, was able to transform the condition into a crucial feature of the coronavirus pandemic. We explore how stakeholders used the term “long COVID” in online media and in other channels to create their illness and group identity, but also to demarcate the personal experience and experiential knowledge of long COVID from that of other sources.

Our exploratory study addresses two questions. Firstly, how the mobilization of subjective evidence leads to the recognition of long COVID and the development of treatment interventions in medicine; and secondly, what distinguishes these developments from other examples of subjective evidence mobilization. We argue that the long COVID movement was able to fill crucial knowledge gaps in the pandemic discourses, making long COVID a legitimate concern of official measures to counter the pandemic.

By first showing how illness experiences were gathered that defied official classifications of COVID-19, we show how patients made the “long COVID” term. Then we compare the clinical and social identity of long COVID to that of chronic fatigue syndrome (ME/CFS), before we examine the social and epistemic processes at work in the digital and medial discourses that have transformed how the pandemic is perceived through the lens of long COVID. Building on this, we finally demonstrate how the alignment of medical professionals as patients with the movement has challenged the normative role of clinical evidence, leading to new forms of medical action to tackle the pandemic.

Source: Roth PH, Gadebusch-Bondio M. The contested meaning of “long COVID” – Patients, doctors, and the politics of subjective evidence. Soc Sci Med. 2021 Nov 30;292:114619. doi: 10.1016/j.socscimed.2021.114619. Epub ahead of print. PMID: 34906823. https://pubmed.ncbi.nlm.nih.gov/34906823/

Survey of people with Myalgic Encephalomyelitis (ME) to explore their use and experiences of physiotherapy services in the UK

Abstract:

250,000 people live with Myalgic Encephalitis (ME) in the UK, this compares to 100,000 living with Multiple Sclerosis. In 2019, a survey by MEAction of 1906 people with ME, identified that over 50% of people who attended specialists ME clinics, employing physiotherapists, were unsatisfied with the services. People with ME (PwME) are also seen in regular musculoskeletal, community, neurological and paediatric physiotherapy services but the views of PwME related to these services are not known. The aim of this present survey, therefore, was to identify the experiences of PwME of physiotherapy services throughout all areas of physiotherapy practice.

Source: Clague-Baker N, Bull, M, Lesile K, Hilliard N. Survey of people with Myalgic Encephalomyelitis (ME) to explore their use and experiences of physiotherapy services in the UK. Physiotherapy, P076, VOLUME 113, SUPPLEMENT 1, E101-E102, DECEMBER 01, 2021. https://www.physiotherapyjournal.com/article/S0031-9406(21)00164-4/fulltext

Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys

Abstract:

Cognitive behavioural therapy and graded exercise therapy are promoted as evidence-based treatments for myalgic encephalomyelitis/chronic fatigue syndrome. This article explores patients’ symptom responses following these treatments versus pacing therapy, an approach favoured by many sufferers. We analyse data from a large cross-sectional patient survey (n = 1428) and compare our findings with those from comparable patient surveys (n = 16,665), using a mix of descriptive statistics and regression analysis modelling.

Findings from analysis of primary and secondary surveys suggest that cognitive behavioural therapy is of benefit to a small percentage of patients (8%-35%), graded exercise therapy brings about large negative responses in patients (54%-74%), while pacing is the most favoured treatment with the lowest negative response rate and the highest reported benefit (44%-82%).

Source: Geraghty K, Hann M, Kurtev S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. J Health Psychol. 2019 Sep;24(10):1318-1333. doi: 10.1177/1359105317726152. Epub 2017 Aug 29. PMID: 28847166. https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full (Full text)

ME/CFS and the biopsychosocial model: a review of patient harm and distress in the medical encounter

Abstract:

Objective: Despite the growing evidence of physiological and cellular abnormalities in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), there has been a strong impetus to tackle the illness utilizing a biopsychosocial model. However, many sufferers of this disabling condition report distress and dissatisfaction following medical encounters. This review seeks to account for this discord.

Methods: A narrative review methodology is employed to synthesize the evidence for potential iatrogenesis.

Results: We identify seven potential modalities of iatrogenesis or harm reported by patients: difficulties in reaching an acceptable diagnosis; misdiagnosis, including of other medical and psychological conditions; difficulties in accessing the sick role, medical care and social support; high levels of patient dissatisfaction with the quality of medical care; negative responses to controversial therapies (cognitive behavioral therapy and graded exercise therapy); challenges to the patient narrative and experience; psychological harm (individual and collective distress).

Conclusion: The biopsychosocial framework currently applied to ME/CFS is too narrow in focus and fails to adequately incorporate the patient narrative. Misdiagnosis, conflict, and harm are observable outcomes where doctors’ and patients’ perspectives remain incongruent. Biopsychosocial practices should be scrutinized for potential harms. Clinicians should consider adopting alternative patient-centred approaches.

Implications for rehabilitation: Patients with ME/CFS may report or experience one or more of the modalities of harms and distress identified in this review. It is important health and rehabilitation professionals seek to avoid and minimize harms when treating or assisting ME/CFS patients. There are conflicting models of ME/CFS; we highlight two divergent models, a biopsychosocial model and a biomedical model that is preferred by patients. The ‘biopsychosocial framework’ applied in clinical practice promotes treatments such as cognitive behavioral therapy and exercise therapy, however, the evidence for their success is contested and many patients reject the notion their illness is perpetuated by dysfunctional beliefs, personality traits, or behaviors. Health professionals may avoid conflict and harm causation in ME/CFS by adopting more concordant ‘patient-centred’ approaches that give greater prominence to the patient narrative and experience of illness.

Source: Geraghty KJ, Blease C. Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter. Disabil Rehabil. 2019 Dec;41(25):3092-3102. doi: 10.1080/09638288.2018.1481149. Epub 2018 Jun 21. PMID: 29929450. https://pubmed.ncbi.nlm.nih.gov/29929450/

Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected

Abstract:

People who are severely and very severely affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) experience profound suffering. This suffering comes from the myriad of losses these patients experience, the grief that comes from these losses, the ongoing stigma that is often experienced as a person with a poorly understood, controversial chronic illness, and the trauma that can result from how other people and the health care community respond to this illness. This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness.

Using a systems approach, this phase framework illustrates the effects of suffering on the patient and can be utilized to help the clinician, patient, family, and caregivers understand and respond to the patient’s experiences. We highlight the constructs of severity, uncertainty, ambiguity, and chronicity and their role in the suffering endured by patients with ME/CFS. A composite case example is used to illustrate the lives of severely and very severely affected patients. Recommendations for health care providers treating patients with ME/CFS are given and underscore the importance of providers understanding the intense suffering that the severely and very severely affected patients experience.

Source: Fennell PA, Dorr N, George SS. Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected. Healthcare (Basel). 2021 May 9;9(5):553. doi: 10.3390/healthcare9050553. PMID: 34065069. https://pubmed.ncbi.nlm.nih.gov/34065069/

Extremely Severe ME/CFS—A Personal Account

Abstract:

A personal account from an Extremely Severe Bedridden ME/CFS patient about the experience of living with extremely severe ME/CFS. Illness progression, medical history, description of various aspects of extremely severe ME/CFS and various essays on specific experiences are included.

Source: Dafoe W. Extremely Severe ME/CFS—A Personal Account. Healthcare. 2021; 9(5):504. https://doi.org/10.3390/healthcare9050504 https://www.mdpi.com/2227-9032/9/5/504/htm (Full text)

Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness

Abstract:

Chronic illness is a risk factor for suicide but is often explained with depression. Research has shown an increased suicide rate in patients with myalgic encephalomyelitis and chronic fatigue syndrome, but specific risk factors have been unexplored. We qualitatively analyzed responses from 29 patients who endorsed suicidal ideation but did not meet depression criteria. Two themes were developed: (1) feeling trapped and (2) loss of self, loss of others, stigma and conflict. Myalgic encephalomyelitis and chronic fatigue syndrome caused patients severe disability, restructured their lives, and inflicted serious pain. Participants emphasized that they were not depressed, but felt trapped by the lack of treatments available.

Source: Devendorf AR, McManimen SL, Jason LA. Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness. J Health Psychol. 2020 Nov-Dec;25(13-14):2106-2117. doi: 10.1177/1359105318785450. Epub 2018 Jul 11. PMID: 29992837. https://pubmed.ncbi.nlm.nih.gov/29992837/