Developing services for long COVID: lessons from a study of wounded healers

Ladds, Emma; Rushforth, Alexander; Wieringa, Sietse; Taylor, Sharon; Rayner, Colin R.; Husain, Laiba; Greenhalgh, Trisha

doi:10.7861/clinmed.2020-0962

Cited by 87 publications

(122 citation statements)

References 14 publications

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“…It would appear that long COVID has so far avoided the earlier obscure fate of ME/CFS, with an outpouring of public and expert acknowledgement for its status as a medical illness and its significant long-term health impact [79][80][81][82]. Many have attested to the importance of providing patient support and monitoring patients' chronic symptoms post-COVID, as well as the need for further research into long COVID [83][84][85]. Though there is no established treatment protocol for patients with long COVID symptoms, many have acknowledged and suggested the need and benefits of rehabilitation [86,87].…”

Section: Discussionmentioning

confidence: 99%

Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—A Systemic Review and Comparison of Clinical Presentation and Symptomatology

2021

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Background and Objectives: Long COVID defines a series of chronic symptoms that patients may experience after resolution of acute COVID-19. Early reports from studies with patients with long COVID suggests a constellation of symptoms with similarities to another chronic medical illness—myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). A review study comparing and contrasting ME/CFS with reported symptoms of long COVID may yield mutualistic insight into the characterization and management of both conditions. Materials and Methods: A systemic literature search was conducted in MEDLINE and PsycInfo through to 31 January 2021 for studies related to long COVID symptomatology. The literature search was conducted in accordance with PRISMA methodology. Results: Twenty-one studies were included in the qualitative analysis. Long COVID symptoms reported by the included studies were compared to a list of ME/CFS symptoms compiled from multiple case definitions. Twenty-five out of 29 known ME/CFS symptoms were reported by at least one selected long COVID study. Conclusions: Early studies into long COVID symptomatology suggest many overlaps with clinical presentation of ME/CFS. The need for monitoring and treatment for patients post-COVID is evident. Advancements and standardization of long COVID research methodologies would improve the quality of future research, and may allow further investigations into the similarities and differences between long COVID and ME/CFS.

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Section: Discussionmentioning

confidence: 99%

Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—A Systemic Review and Comparison of Clinical Presentation and Symptomatology

2021

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“… 9 Enabling self-management in the community is a key arm in the multidisciplinary approach to the management of long COVID. 10 This can include education regarding self-monitoring, patient support groups, and direction regarding management of mental health. This could perhaps be undertaken by trained non-clinical staff such as social prescribers in the first instance, providing welfare calls with a clinician’s review where indicated.…”

Section: Discussionmentioning

confidence: 99%

Patients’ Experiences of “Long COVID” in the Community and Recommendations for Improving Services: A Quality Improvement Survey

Razai

Al-Bedaery

Anand³

et al. 2021

J Prim Care Community Health

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Introduction: “Long COVID” is a multisystem disease that lasts for 4 or more weeks following initial symptoms of COVID-19. In the UK, at least 10% of patient report symptoms at 12 weeks following a positive COVID-19 test. The aims of this quality improvement survey were to explore patients’ acute and post-acute “long” COVID-19 symptoms, their experiences of community services and their recommendations for improving these services. Methods: Seventy patients diagnosed with COVID were randomly selected from 2 large socially and ethnically diverse primary care practices. Of those contactable by telephone, 85% (41/48) agreed to participate in the quality improvement survey. They were interviewed by telephone using a semi-structured questionnaire about community services for COVID-19 patients. Interviews lasted 10 to 15 minutes. Results: Forty-nine percent of patients reported at least 1 post-acute COVID-19 symptom. The most common were severe fatigue (45%), breathlessness (30%), neurocognitive difficulties (such as poor memory), poor concentration and “brain fog” (30%), headaches (20%), and joint pain (20%). Many patients felt isolated and fearful, with scant information about community resources and little safety netting advice. Patients also expected more from primary care with over half (56%) recommending regular phone calls and follow up from healthcare staff as the most important approach in their recovery. Conclusions: In line with patients’ requests for more support, the practices now routinely refer patients with long COVID to an on-site social prescriber who explores how they are getting on, refers them to the GP or practice nurse when required, and sign posts them to support services in the community.

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“…While exercise is likely to be beneficial for some, there are many unknowns, including whether all patients with persistent symptoms should undergo screening for respiratory and cardiac complications before beginning exercise; whether exercise rehabilitation needs to be medically supervised; what level of tailoring is required; what frequency, intensity, duration and type of exercise can be recommended; and the trajectory of recovery for people living with long COVID. These uncertainties, and the fact that little data exists to date, mean treatment may require a multidisciplinary care pathway [87,88]. Limited reporting of interventions with overinterpretations regarding safety [21] do not serve the long COVID research, allied health professional, nor patient community.…”

Section: Discussionmentioning

confidence: 99%

Chronic fatigue and post-exertional malaise in people living with long COVID

Twomey

DeMars²,

Franklin

et al. 2021

Preprint

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Purpose: People living with long COVID describe a high symptom burden, and a more detailed assessment of chronic fatigue and post-exertional malaise (PEM) may inform the development of rehabilitation recommendations. The aims of this study were to use validated questionnaires to measure the severity of fatigue and compare this with normative data and thresholds for clinical relevance in other diseases; measure and describe the impact of PEM; and describe symptoms of dysfunctional breathing, self-reported physical activity/sitting time, and health-related quality of life. Methods: This was an observational study involving an online survey for adults living with long COVID (data collection from February-April, 2021) following a confirmed or suspected SARS-CoV-2 infection. Questionnaires included the Functional Assessment of Chronic Illness Therapy-Fatigue Scale (FACIT-F) and DePaul Symptom Questionnaire-Post-Exertional Malaise. Results: After data cleaning, n=213 participants were included in the analysis. Participants primarily identified as women (85.5%), aged 40-59 (78.4%), who had been experiencing long COVID symptoms for ≥6 months (72.3%). The total FACIT-F score was 18±10 (where the score can range from 0-52, and a lower score indicates more severe fatigue), and 71.4% were experiencing chronic fatigue. Post-exertional symptom exacerbation affected most participants, and 58.7% met the scoring thresholds used in people living with myalgic encephalomyelitis/chronic fatigue syndrome. PEM occurred alongside a reduced capacity to work, be physically active, and function both physically and socially. Conclusion: Long COVID is characterized by chronic fatigue that is clinically relevant and is at least as severe as fatigue in several other clinical conditions, including cancer. PEM appears to be a common and significant challenge for the majority of this patient group. Patients, researchers, and allied health professionals are seeking information on safe rehabilitation for people living with long COVID, particularly regarding exercise. Fatigue and post-exertional symptom exacerbation must be monitored and reported in studies involving interventions for people with long COVID.

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Developing services for long COVID: lessons from a study of wounded healers

Cited by 87 publications

References 14 publications

Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—A Systemic Review and Comparison of Clinical Presentation and Symptomatology

Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—A Systemic Review and Comparison of Clinical Presentation and Symptomatology

Patients’ Experiences of “Long COVID” in the Community and Recommendations for Improving Services: A Quality Improvement Survey

Chronic fatigue and post-exertional malaise in people living with long COVID

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