Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome

Froehlich, Laura; Hattesohl, Daniel B. R.; Cotler, Joseph; Jason, Leonard A.; Scheibenbogen, Carmen; Behrends, Uta

doi:10.1177/13591053211027631

Cited by 29 publications

(21 citation statements)

References 51 publications

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“…We did this in part due to its brevity and high acceptability within the medical community. Because it can be completed in approximately 5 min, it can easily be implemented in a routine clinical setting for screening purposes ( 15 , 16 ). The DSQ-SF has been translated into many languages and is being used as an outcome measure in a PASC clinical trial in Ireland ( 17 ).…”

Section: Discussionmentioning

confidence: 99%

Improvement of Long COVID symptoms over one year

et al. 2023

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ImportanceEarly and accurate diagnosis and treatment of Long COVID, clinically known as post-acute sequelae of COVID-19 (PASC), may mitigate progression to chronic diseases such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Our objective was to determine the utility of the DePaul Symptom Questionnaire (DSQ) to assess the frequency and severity of common symptoms of ME/CFS, to diagnose and monitor symptoms in patients with PASC.MethodsThis prospective, observational cohort study enrolled 185 people that included 34 patients with PASC that had positive COVID-19 test and persistent symptoms of >3 months and 151 patients diagnosed with ME/CFS. PASC patients were followed over 1 year and responded to the DSQ at baseline and 12 months. ME/CFS patients responded to the DSQ at baseline and 1 year later. Changes in symptoms over time were analyzed using a fixed-effects model to compute difference-in-differences estimates between baseline and 1-year follow-up assessments.ParticipantsPatients were defined as having PASC if they had a previous positive COVID-19 test, were experiencing symptoms of fatigue, post-exertional malaise, or other unwellness for at least 3 months, were not hospitalized for COVID-19, had no documented major medical or psychiatric diseases prior to COVID-19, and had no other active and untreated disease processes that could explain their symptoms. PASC patients were recruited in 2021. ME/CFS patients were recruited in 2017.ResultsAt baseline, patients with PASC had similar symptom severity and frequency as patients with ME/CFS and satisfied ME/CFS diagnostic criteria. ME/CFS patients experienced significantly more severe unrefreshing sleep and flu-like symptoms. Five symptoms improved significantly over the course of 1 year for PASC patients including fatigue, post-exertional malaise, brain fog, irritable bowel symptoms and feeling unsteady. In contrast, there were no significant symptom improvements for ME/CFS patients.Conclusion and relevanceThere were considerable similarities between patients with PASC and ME/CFS at baseline. However, symptoms improved for PASC patients over the course of a year but not for ME/CFS patients. PASC patients with significant symptom improvement no longer met ME/CFS clinical diagnostic criteria. These findings indicate that the DSQ can be used to reliably assess and monitor PASC symptoms.

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Section: Discussionmentioning

confidence: 99%

Improvement of Long COVID symptoms over one year

et al. 2023

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“…Owing to this, CFS/ ME often gets delegitimized as "not a real physiological condition" and patients often face stigma from their peers and healthcare professionals alike. 25 This further deteriorates the quality of life for people with CFS/ME, who are already experiencing trauma, grief and loss due to their severe symptoms, and could lead to the development of depression and a heightened risk of suicide. 26,27 Many patients, clinicians and experts associate the persistent stigmatization of the disease with the name 'chronic fatigue syndrome' and suggest that it should be referred to as 'myalgic encephalomyelitis' to underline the neuroimmunological character of the disease.…”

Section: E D I T O R I a L E X A C T Amentioning

confidence: 99%

“…To date, there is no test or biomarker for objective diagnosis. Owing to this, CFS/ME often gets delegitimized as “not a real physiological condition” and patients often face stigma from their peers and healthcare professionals alike 25 . This further deteriorates the quality of life for people with CFS/ME, who are already experiencing trauma, grief and loss due to their severe symptoms, and could lead to the development of depression and a heightened risk of suicide 26,27 .…”

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confidence: 99%

Chronic fatigue syndrome: An old public health issue highlighted by the COVID‐19 pandemic

Bonk

Khedkar

2022

Acta Physiologica

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“…The new guideline acknowledges that people with ME/CFS may have experienced prejudice and disbelief [ 6 , 7 ] by people who do not understand their illness and encourages practitioners to consider: how this may have affected the person with ME/CFS, and that the individual may have lost trust in health and social services and be hesitant about their involvement. …”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

What Primary Care Practitioners Need to Know about the New NICE Guideline for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults

Kingdon

Lowe

Shepherd³

et al. 2022

Healthcare

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The new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), published in October 2021, makes significant changes in treatment recommendations. It acknowledges the complexity of this chronic medical condition, which always impacts quality of life and can be profoundly disabling, recognising the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test. The guideline outlines steps for accurate diagnosis, recognising post-exertional malaise as a core symptom; importantly, ME/CFS can now be diagnosed after just 3 months in a bid to improve long-term health outcomes. It recommends the need for individual, tailored management by a multi-disciplinary team, ensuring that the wellbeing of the individual is paramount. The guideline makes clear that any programme based on fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (GET), should not be offered as a treatment for ME/CFS and emphasises that cognitive behavioural therapy (CBT) should only be offered as a supportive intervention. Because of the rigorous methodology required by NICE Committee review and the inclusion of the testimony of people with lived experience as committee members, this guideline will influence the future diagnosis and management of ME/CFS in the UK and beyond.

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Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome

Cited by 29 publications

References 51 publications

Improvement of Long COVID symptoms over one year

Improvement of Long COVID symptoms over one year

Chronic fatigue syndrome: An old public health issue highlighted by the COVID‐19 pandemic

What Primary Care Practitioners Need to Know about the New NICE Guideline for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults

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