Post-viral fatigue and COVID-19: lessons from past epidemics

Posted on 07/01/2020 by wames

Post-viral fatigue and COVID-19: lessons from past epidemics, by Mohammed F Islam, Joseph Cotler,  & Leonard A Jason in Fatigue: Biomedicine, Health & Behavior 25 Jun 2020 [doi.org/10.1080/21641846.2020.1778227]

 

Review Abstract:

The COVID-19 pandemic, resulting from Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2), has severely impacted the population worldwide with a great mortality rate.

The current article reviews the literature on short- and long-term health consequences of prior epidemics and infections to assess potential health complications that may be associated with post-COVID-19 recovery.

Past research on post-epidemic and post-infection recovery has suggested that such complications include the development of severe fatigue. Certain factors, such as the severity of infection, in addition to the ‘cytokine storm’ experienced by many COVID-19 patients, may contribute to the development of later health problems.

We suggest that the patterns observed in past epidemics and infections may re-occur in the current COVID-19 pandemic.

Excerpts from Concluding remarks:

Past research has shown that elevated levels of post-infectious fatigue are common for some survivors of epidemics such as SARS and Ebolavirus. Chronic widespread musculoskeletal pain, fatigue, depression and disorder sleep in chronic post-SARS syndrome; a case-controlled study.  Post-Ebola syndrome among Ebola virus disease survivors in Monsterraro county, Liberia 2016. Moreover, fatigue has been associated with infections, such as infectious mononucleosis, that occur frequently outside of an epidemic or pandemic scale. Chronic fatigue syndrome following infections in adolescents.

These types of outcomes are not limited to just viral infections, but also bacterial infections. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. Given such evidence, we expect that some survivors of COVID-19 will develop post-infectious fatigue and other complications.

… Since the start of the epidemic, enough time has not elapsed to study the long-term trajectory of COVID-19, but reports are emerging about the occurrence of serious potentially longer-term health consequences. For example, several patients in Italy have developed Guillain-Barré.  There are reports of children developing Kawasaki disease, and other reports of COVID-19 causing lung scarring, blood clots, renal failure, and neurological complications.  Shi et al. found 19% of 416 hospitalized COVID-19 patients showed signs of heart damage. These types of findings of COVID-19 reinforce our contention that a portion of survivors will experience a variety of longer-term health complications including post-infectious fatigue.

ME Research UK: COVID-19 – should we expect an increase in ME/CFS cases?  7 Jul 2020

 

 

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Preliminary ICF core set for patients with ME/CFS in rehabilitation medicine

Posted on 06/30/2020 by wames

Preliminary ICF core set for patients with myalgic encephalomyelitis/chronic fatigue syndrome in rehabilitation medicine, by Indre Bileviciute-Ljungar, Marie-Louise Schult, Kristian Borg, Jan Ekholm in J Rehabil Med 2020; 52: jrm0000X [DOI:10.2340/16501977-2697]

 

Lay Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition with no diagnostic or prognostic markers. The patient group is heterogeneous, and impairments in functioning and disability vary between patients. The International Classification of Functioning, Disability and Health (ICF) is a well-established method to assess patient’s functioning and disability. This study sets out a preliminary Brief ICF Core Set for ME/CFS in rehabilitation medicine. However, this requires improvement, and approval by research society and clinicians working with ME/CFS. The introduction of post-exertional malaise as a new category in the ICF should also be considered.

Research abstract:

Objective:  To create and evaluate a preliminary ICF Core Set for myalgic encephalomyelitis/chronic fatigue syndrome using a team-based approach.

Design: Observational study.
Subjects/patients: A total of 100 consecutive patients (mean age 45 years, standard deviation (SD) 9 years) were assessed by a rehabilitation team and included in the study.

Methods: A preliminary International Classification of Functioning, Disability and Health (ICF) Core Set was created, based on literature studies, and on discussion forums between the team and the researchers. Patients were assessed by a rehabilitation medicine team regarding impairments in body function, activity limitations, and restrictions in participation.

Results: Clinical assessments of the component Body Functions found impairments in energy, fatigue, physical endurance, fatigability, sleep and pain in 82–100% of patients. At least half of the patients had impairments in higher cognitive functions, attention, and emotions, as well as sound and light hypersensitivity, general hyper-reactivity and thermoregulatory functions.

For the component Activity/Participation, the most frequent limitations and restrictions were in doing housework (93%), assisting others (92%), acquisition of goods and services (90%), remunerative employment (87%), handling stressful situations (83%), preparing food (83%), recreation and leisure (82%), informal socializing (78%) and carrying out daily activities (77%).

The most frequent degrees of impairments/limitations/restrictions assessed were light and moderate, except for remunerative employment, for which restrictions were severe.

Conclusion: Using unconventional methods, this study sets out a preliminary ICF Core Set list for patients with myalgic encephalomyelitis/chronic fatigue syndrome. Further studies are required to improve and test this Core Set in myalgic encephalomyelitis/ chronic fatigue syndrome populations.

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Clinical history segment extraction from CFS assessments to model disease trajectories

Posted on 06/29/2020 by wames

Clinical history segment extraction from Chronic Fatigue Syndrome assessments to model disease trajectories by Sonia Priou, Natalia Viani, Veshalee Vernugopan, Chloe Tytherleigh, Faduma Abdalla Hassan, Rina Dutta, Trudie Chalder, Sumithra Velupillai in Digital Personalized Health and Medicine, Vol 270, pp 98-102, 2020

 

Research abstract:

Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms and condition trajectories. To improve the understanding of these, automated analysis of large amounts of patient data holds promise. Routinely documented assessments are useful for large-scale analysis, however relevant information is mainly in free text.

As a first step to extract symptom and condition trajectories, natural language processing (NLP) methods are useful to identify important textual content and relevant information.

In this paper, we propose an agnostic NLP method of extracting segments of patients’ clinical histories in CFS assessments. Moreover, we present initial results on the advantage of using these segments to quantify and analyse the presence of certain clinically relevant concepts.

Excerpt from Discussion:

When searching for pre-defined clinically relevant CFS concepts, most documents had at least one (94%), and most concepts were found inside the extracted segments (90%). Concepts only found outside of segments were either mentioned in a different context than clinical history (e.g. the concept anxiety was used to describe the patient’s current state) or used in the first sentence of the document (mainly for ‘virus/viral’).

We plan to extend this analysis by looking at additional concept mapping techniques such as word embeddings, clustering and topic modelling approaches.

Our main contributions in this study are:

an agnostic method of extracting segments of EHR text that convey history information, and an initial experiment of the benefit of using these segments to analyse the presence of certain clinically relevant concepts in a CFS cohort. This is a first step towards large-scale studies on CFS disease trajectories.

Download full book chapter

WAMES’ Comment

Analysing clinical histories to gather useful information on the nature and course of ME or CFS is dependant on the clinical histories being an accurate account of the patient experience. Many people with ME have been unhappy with the way their illness has been perceived and recorded by medical professionals, often due to an overemphasis on possible psychological factors and lack of a commonly used vocabulary.

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NICE ME/CFS Guideline to be published April 2021

Posted on 06/26/2020 by wames

NICE ME/CFS Guideline to be published April 2021

 

WAMES has received notification from NICE about the dates the stakeholder meetings will reconvene, and the proposed publication date of the revised ME/CFS clinical guideline.

 

24/6/20

Dear Stakeholder,

As you will be aware, because of the need to prioritise work on COVID-19 guidance and to avoid drawing frontline staff away from their clinical work, NICE cancelled all guideline committee meetings. This included meetings for the ME/CFS guideline. We have now rescheduled the remaining committee meetings for this guideline and agreed a revised timeline. This means that the consultation on the draft guideline will now start on 10 November, and the guideline will now publish on 21 April 2021.

 

Kind regards,

Katie Stafford, Senior Guideline Coordinator

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Economic burden of ME/CFS to patients: comparative study

Posted on 06/26/2020 by wames

Economic burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to patients: comparative study, by D Araja, E Brenna, RM Hunter, D Pheby, U Berkis, A Lunga, M Murovska in Value in Health, Vol 22, Supp 3, Nov 2019, Page S909 [https://doi.org/10.1016/j.jval.2019.09.2671] ABSTRACT ONLY

 

Abstract:

Objectives:

Research is performed in framework of COST (European Cooperation inScience and Technology) Action 15111 EUROMENE (European Myalgic Encephalo-myelitis/Chronic Fatigue Syndrome (ME/CFS) Research Network) to investigate the opportunities for evaluation of economic impact of ME/CFS to patients.

Methods:

To achieve the objectives of this research, a study based on patient-reported survey has been carried out in Latvia, Italy and the United Kingdom (UK). The survey included questions concerning the socio-economic consequences of the disease, particularly regarding the health care costs. For data processing and analysis, the methods of economic analysis and statistical analysis are embraced.

Results:

In Latvia the survey has been launched with coverage of 100 patients (with dominance income of €500 per household member monthly). The results show that 1% of respondents spend more than €100 as an out-pocket payment for medicines and health care services monthly, 1.8% spend €51-100 for medicines, health care services and food supplements monthly, 17.2% spend €21-50, and 80% of respondents spend until €20 monthly to reduce the ME/CFS consequences.

The study performed in Italy with 87 participants suffered by ME/CFS found that 23% were unemployed and 55% had an income less than €15.000 annually. Patients spend average €210 monthly on medication and therapy.

A study conducted in the UK covered 262 patients with ME/CFS and healthy controls. The analysis shows marked lower economic well-being of people with ME/CFS in comparison with healthy controls. Average adjusted income for participants with CFS/ME was £12.242, but for healthy controls -£23.126. Considering the prevalence of ME/CFS in the UK population, the total cost of illness was estimated at £1.713 million per year.

Conclusions:

The patient-reported outcomes is a significant tool to collect the data for evaluation of socio-economic impact of ME/CFS, but for comparative studies the purchasing power parities should be taken into account.

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Characterization of cortisol dysregulation in FM & CFS: a state-space approach

Posted on 06/25/2020 by wames

Characterization of Cortisol Dysregulation in Fibromyalgia and Chronic Fatigue Syndromes: A State-Space Approach, by Divesh Deepak Pednekar, Md. Rafiul Amin, Hamid Fekri Azgomi, Kirstin Aschbacher, Leslie J Crofford, Rose T Faghih in Published in: IEEE Transactions on Biomedical Engineering PP(99):1-1 · March 2020 [DOI: 10.1109/TBME.2020.2978801]

 

Research abstract:

Objective:

Cortisol secretion & regulation model

Fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS) are complicated medical disorders, with little known etiologies.

The purpose of this research is to characterize FMS and CFS by studying the variations in cortisol secretion patterns, timings, amplitudes, the number of underlying pulses, as well as infusion and clearance rates of cortisol.

Methods:

Using a physiological state-space model with plausible constraints, we estimate the hormonal secretory events and the physiological system parameters (i.e., infusion and clearance rates).

Results:

Our results show that the clearance rate of cortisol is lower in FMS patients as compared to their matched healthy individuals based on a simplified cortisol secretion model. Moreover, the number, magnitude, and energy of hormonal secretory events are lower in FMS patients. During early morning hours, the magnitude and energy of the hormonal secretory events are higher in CFS patients.

Conclusion:

Due to lower cortisol clearance rate, there is a higher accumulation of cortisol in FMS patients as compared to their matched healthy subjects. As the FMS patient accumulates higher cortisol residues, internal inhibitory feedback regulates the hormonal secretory events. Therefore, the FMS patients show a lower number, magnitude, and energy of hormonal secretory events. Though CFS patients have the same number of secretory events, they secrete lower quantities during early morning hours. When we compare the results for CFS patients against FMS patients, we observe different cortisol alteration patterns.

Significance:

Characterizing CFS and FMS based on the cortisol alteration will help us to develop novel methods for treating these disorders.

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Epidemiological and clinical factors associated with post-exertional malaise severity in patients with ME/CFS

Posted on 06/24/2020 by wames

Epidemiological and clinical factors associated with post-exertional malaise severity in patients with myalgic encephalomyelitis/chronic fatigue syndrome, by Alaa Ghali, Paul Richa, Carole Lacout, Aline Gury, Anne-Berengere Beucher, Chadi Homedan, Christian Lavigne & Geoffrey Urbanski in Journal of Translational Medicine vol 18, no. 246 (2020) Published: 22 June 2020

 

Research abstract:

Background

Post-exertional malaise (PEM), the cardinal feature of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), occurs generally after exposure to a stressor. It is characterized by the worsening of ME/CFS symptoms and results in aggravating the course of the disease and the quality of life of patients. Due to its unpredictable onset, severity, and recovery time, identifying patients with higher risk for severe PEM would allow preventing or reducing its occurrence. We thus aimed at defining possible factors that could be associated with PEM severity.

Methods

Adult patients fulfilling ME international consensus criteria who attended the internal medicine department of University hospital Angers-France between October 2011 and December 2019 were included retrospectively. All patients were systematically hospitalized for an etiological workup and overall assessment. We reviewed their medical records for data related to the assessment: epidemiological data, fatigue features, clinical manifestations, and ME/CFS precipitants.

PEM severity was appreciated by the Center for Disease Control self-reported questionnaire. The study population was classified into quartiles according to PEM severity scores. Analyses were performed with ordinal logistic regression to compare quartile groups.

The two-way link between recurrent infections and PEM in ME/CFS patients. An infectious precipitant results in impaired immune function leading to susceptibility to recurrent viral infections and some of ME/CFS manifestations such as fatigue and flu-like symptoms. Stress and mood changes can also impact the immune system. PEM will occur after a stressor (physical, cognitive, emotional and/or infectious) leading to a worsening of ME/CFS baseline symptoms, including immune/inflammatory-related symptoms and psychological disturbances. This will perpetuate the immune dysfunction with aggravation of ME/CFS symptoms, and more frequent viral infections. aME/CFS: myalgic encephalitis/chronic fatigue syndrome. bPEM: post-exertional malaise

Results

197 patients were included. PEM severity was found to be positively associated with age at disease onset ≥ 32 years (OR 1.8 [95% CI 1.1–3.0] (p = 0.03)), recurrent infections during the course of the disease (OR 2.1 [95% CI 1.2–3.7] (p = 0.009)), and when ME/CFS was elicited by a gastrointestinal infectious precipitant (OR 5.7 [1.7–19.3] (p = 0.006)).

Conclusion

We identified some epidemiological and clinical features, which were positively associated with PEM severity in subsets of ME/CFS patients. This could help improving disease management and patients’ quality of life.

Excerpt from conclusion:

Given the non-homogeneity of the ME/CFS population, and knowing that PEM is associated with disability and poorer outcome, we attempted to identify patients with higher risk for severe PEM on epidemiological and clinical features. To the best of our knowledge, our study is the first to identify factors that may influence PEM severity in ME/CFS patients.

We observed more severe PEM in older patients at disease onset, and among those who were suffering from recurrent infections during their disease course. More severe PEM was also observed in patients in whom ME/CFS onset was preceded by GI infectious precipitants.

Accordingly, this will allow adapting and individualizing the disease management, especially in the absence of curative treatment. Hence older patients should be advised to adhere more strictly to pacing strategies, and specific measures against infections together with pacing should be recommended for those who display recurrent and/or persistent infections. The aim is to prevent PEM occurrence, or at least reducing its severity, to help improving disease course and patients’ quality of life.

ME Research UK: Predicting the severity of post-exertional malaise

Key findings

Three factors were found to be associated with increased PEM severity, and may help to identify patients who would benefit from pacing strategies:

  • Developing ME/CFS at the age of 32 years or older.
  • Being susceptible to recurrent viral infections.
  • Developing ME/CFS after a gastrointestinal infection.
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A qualitative exploration of treatment preference in paediatric randomised control trials

Posted on 06/23/2020 by wames

A qualitative exploration of treatment preference in paediatric randomised controlled trials, by Lucy Beasant PhD thesis, University of Bristol, [Bristol Medical School (PHS), Bristol Population Health Science Institute] November 28, 2019. Supervisors: Esther M Crawley, Nicola J Mills & Bridget Young

 

Research abstract:

Randomised controlled trials (RCTs) rely on effective recruitment and retention for successful completion. Potential trial participants’ preference for a treatment (trial intervention) can affect recruitment, post randomisation drop-out and adherence to intervention groups in adult RCTs, but little is known about how they may affect paediatric
trials.

Communication of trial information in paediatric trial settings is complex as it needs to accommodate the parent’s as well as young person’s perspective, whilst at the same time maintaining high standards of trial conduct. This PhD explored how treatment preferences influenced recruitment and participation in paediatric RCTs by undertaking a systematic review of the literature and embedding qualitative research in four paediatric trials.

The systematic literature review focused on paediatric RCTs and qualitative studies that reported the treatment preferences of children and young people aged 0-17 years, and their parents. Fifty-two papers were identified, twelve of which contained qualitative data.

CONSORT figures reporting decline or withdrawal from trials due to treatment preference were tabulated and discussed descriptively. Techniques of meta-ethnography were drawn on to evaluate qualitative data. The systematic review showed treatment preferences acting as a barrier to recruitment to paediatric RCTs, particularly from a parental perspective. Parents’ understanding of trial processes and perceptions of the benefits and risks associated with treatments promoted discussion of preference. Few RCT papers reported the views of young people in relation to preference for treatment.

Qualitative methods were embedded in three chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) trials, and one surgical trial for acute, uncomplicated appendicitis. The QuinteT Recruitment Intervention (QRI) has been embedded successfully in adult RCTs to identify and address recruitment difficulties with the intention to optimise informed decision-making and recruitment.

Methods and approaches from the QRI (audio-recorded recruitment consultations,
interviews, recruiter training) were employed in the present research to explore the treatment preferences of young people, their parents, and to discuss issues of equipoise with recruiting health professionals. Data analyses drew on techniques of constant comparison, content and thematic analysis. All four RCTs were able to successfully recruit paediatric participants, but preference for treatment was a consistent reason for trial decline, post randomisation drop-out and discontinued treatment in the four trials under investigation.

Young people and their parents expressed treatment preferences when considering RCT participation in all four trials. However, young people were less likely to express preferences than their parents.

The views and equipoise of those recruiting and treating patients influenced families at all stages of recruitment, and during trial participation. Providing training for recruiters and wider clinical teams that promoted communicating equipoise, and the exploration of preference during discussions with families, had a positive effect on observed recruitment practices. More efforts are now needed to understand preference for treatment in paediatric RCT settings, particularly in relation to the impact on trial retention and the treatment outcomes under investigation.

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Post-viral fatigue in Covid-19

Posted on 06/23/2020 by wames

Post viral fatigue in Covid-19, by Karen Leslie, Dr Michelle Bull, Natalie Hilliard and Dr Nicola Clague-Baker in Frontline [Chartered Society of Physiotherapy (CSP) Journal] June 2020 no. 6

 

Excerpt:

What is post viral fatigue syndrome (PVFS), and how do I recognise it?
PVFS is a persistent state of ill health following a viral infection. Symptoms include fatigue, loss of energy, muscular aches and pains, intermittent flares of viral symptoms and an inability to return to previous levels of activity.  PVFS is not the same as being deconditioned. Ignoring or exacerbating the symptoms may worsen them.

If there has been a sustained change to daily life and if rehabilitation isn’t progressing as you think it should, consider PVFS.

Where, say, a person may have returned to work but uses their weekends to recover, or is struggling even with basic daily tasks, it’s worth considering PVFS.

With PVFS there is a possibility of development into Myalgic Encephalomyelitis (ME – often known as chronic fatigue syndrome or CFS). The link between severe viral infection and ME is clear. Previous outbreaks of SARS and Epstein Barr saw a 10 per cent rise in the number of patients diagnosed with ME1,2. ME affects approximately 250,000 people in the UK, more than multiple sclerosis and Parkinson’s disease combined. Around 25 per cent of patients are completely bedbound.

If I suspect someone recovering from Covid-19 is developing PVFS, what should I do?
Adapt to provide pacing strategies to work within energy levels, rather than push beyond limits. And make sure you are clearly communicating your concerns with the multidisciplinary team for ongoing monitoring and support.

The best approach is to ensure adequate:

  • rest
  • nutrition
  • sleep

How do I know if a person with PVFS has developed ME?
The hallmark feature of ME is post-exertional malaise (PEM), which is characterised by a set of symptoms including fever, muscle ache, headache, sensitivities, fatigue and dizziness. PEM is triggered by physical or cognitive exertion, which can be as simple as taking a shower or talking to a relative, and it can last days, weeks, or even months. PEM can manifest up to 24-48 hours after exertion, so it is not always apparent what activity was the trigger.

The authors continue with clinical signs to look for, advice on avoiding graded exercise therapy to avoid triggering PEM.

Read full article

Full article also available on ME Association site

 

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“The child’s got a complete circle around him ”. The care of younger children (5–11 years) with CFS/ME.

Posted on 06/22/2020 by wames

“The child’s got a complete circle around him ”. The care of younger children (5–11 years) with CFS/ME. A qualitative study comparing families’, teachers’ and clinicians’ perspectives’, by Amberly Brigden, Alison Shaw, Rebecca Barnes, Emma Anderson, Esther Crawley in Health and Social Care in the Community, Published online 9 June 2020 [https://doi.org/10.1111/hsc.13029]

 

What is known about this topic

  • An increasing number of children are living with a chronic health condition.
  • Integrating care across educational and healthcare settings is important, particularly for younger children who are dependent on adults for their care.
  • However, these children are often not adequately supported at school and there is little evidence on how health and education systems might integrate practice.

What this paper adds

  • This is the first qualitative study to explore the care of younger children with CFS/ME; it suggests that a socio‐ecological conceptualisation of care may be beneficial.
  • Primary school teachers have close and consistent relationships with their pupils and are well‐placed to support their health needs.
  • There is little direct contact between clinic and school. This is appropriate for some families, but problematic for those with complex needs.

Research abstract:

Society needs to improve the care of children with complex needs. Guidelines recommend integrating care across health and educational settings, however, there is little research on whether this is achieved or how this can be done in practice.

Our aim was to address this gap by examining how the care of children (aged 5–11 years) with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) is shared across home, education and health settings, in order to generate recommendations for integrating care.

We undertook semi‐structured interviews with families (22 participants), teachers (11 participants) and healthcare providers (9 participants), analysing the data thematically and comparatively. Our analysis of the data was informed by a socio‐ecological perspective as we sought to understand the complexity of the relationships and systems around the child.

The first theme focuses on the child (“individual level”); child‐centred care is seen as essential whilst acknowledging that the child has limited capacity to manage their own care.

The second theme presents the distinct roles of parents, teachers and clinicians (“interpersonal and organisational levels”).

The third describes how these three levels interact in the management of the child’s care, in the context of the health and education systems and policies (“policy levels”).

The fourth explores optimal ways to integrate care across home, school and clinical settings.

In conclusion, there is opportunity to support a child with complex health needs by targeting the systems around the child; parents, teachers and clinicians, as well as education and health policy that can enable shared‐care. Involving schools in assessment, communicating diagnosis across settings and using a stepped‐care approach to integrated care may be beneficial. Further work is needed to explore these recommendations, with attention to the policy factors that may act as barriers and enablers.

This paper is part of EXPLORER, a project lead by Amberly Brigden of the University of Bristol that aims to explore treatments for younger children with ME/CFS. One study plans to look into ME/CFS in younger children aged 5 to 7. https://www.bristol.ac.uk/academic-child-health/research/research/cfsme/explorer/

Miss Brigden is funded by the National Institute for Health Research (NIHR Doctoral Research Fellowship, DRF‐ DRF‐2017–10–169). Prof Crawley is funded by the NIHR Senior Research Fellowship, SRF‐2013–06–013). This report is independent research. The views expressed in this publication are those of the authors(s) and not necessarily those of the NHS, NIHR or the Department of Health and Social Care.

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