The ME Association ME/CFS (& Long Covid) Weekly Research Round-up

May 21, 2021

The weekly research round-up now includes recent publications about ME/CFS and about Long Covid. We highlight several studies that have particularly caught our interest and follow these with the full list of publications together with their abstracts (summaries).

All research relating to ME/CFS can be located in the ME Association: Index of ME/CFS Published Research. It is a free resource and available to anyone.

This extensive library of research is normally updated at the end of each month, but with the change in staff, it will be updated again by 01 June 2021.

The Index provides an A-Z of published research studies, selected key documents and articles, listed by subject matter, on myalgic encephalomyelitis, myalgic encephalopathy, and/or chronic fatigue syndrome (ME/CFS).

You can use it to easily locate and read any research that you might be interested in regard to, e.g., epidemiology, infection, neurology, post-exertional malaise etc.

You can also find the Research Index in the Research section of the website together with a list of Research Summaries that provide more detailed lay explanations of the more interesting work that has been published to date.

ME/CFS Research Published 08 May – 14 May 2021

Three new research studies on ME/CFS have been published during this period and we have also included 10 new studies on Long Covid. There wasn't very much that caught our interest, but we highlight one on ME/CFS and one on long-COVID from the selection below:

Along with the debilitating fatigue and other symptoms experienced by people with ME/CFS, problems with sleep are typically reported, such as unrefreshing sleep and sleep disturbances.

The first paper (1) is a review of the published literature on the sleep characteristics in ME/CFS. Unfortunately, the review did not add to our understanding as the results were inconsistent.

However, It did serve to highlight problems in ME/CFS research e.g., small sample sizes and non-replicated findings, showing the need for more well-designed studies to, in this instance, better understand what is happening during sleep to people with this condition.

Some promise is being demonstrated by research into Long-Covid and its similarities to ME/CFS. Scientists are looking at defining the clinical presentation of Long-Covid, which could perhaps lead to tests for diagnosing ME/CFS. In the eighth study (8) on Long-Covid, significantly higher levels of insomnia were found as well as a reduced quality of life.

ME/CFS Research References and Abstracts

1. Systematic Review of Sleep Characteristics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Maksoud R, Eaton-Fitch N, Matula M, Cabanas H, Staines D, Marshall-Gradisnik S
Healthcare 2021, 9, 568


Background—Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multifaceted illness characterized by profound and persistent fatigue unrelieved by rest along with a range of other debilitating symptoms. Experiences of unrefreshing and disturbed sleep are frequently described by ME/CFS patients. This is the first systematic review assessing sleep characteristics in ME/CFS. The aim of this review is to determine whether there are clinical characteristics of sleep in ME/CFS patients compared to healthy controls using objective measures such as polysomnography and multiple sleep latency testing.

Methods—the following databases—Pubmed, Embase, Medline (EBSCO host) and Web of Science, were systematically searched for journal articles published between January 1994 to 19 February 2021. Articles that referred to polysomnography or multiple sleep latency testing and ME/CFS patients were selected, and further refined through use of specific inclusion and exclusion criteria. Quality and bias were measured using the Joanna Briggs Institute checklist.

Results—twenty observational studies were included in this review. The studies investigated objective measures of sleep quality in ME/CFS. Subjective measures including perceived sleep quality and other quality of life factors were also described.

Conclusions—Many of the parameters measured including slow-wave sleep, apnea-hypopnea index, spectral activity and multiple sleep latency testing were inconsistent across the studies. The available research on sleep quality in ME/CFS was also limited by recruitment decisions, confounding factors, small sample sizes and non-replicated findings. Future well-designed studies are required to understand sleep quality in ME/CFS patients.

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

Fennell PA, Dorr N, George SS
Healthcare 2021, 9, 553


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.

3. mapMECFS: a portal to enhance data discovery across biological disciplines and collaborative sites

Mathur R, Carnes MU, Harding A, Moore A, Thomas I, Giarrocco A, Long M, Underwood M, Townsend C, Ruiz-Esparza R, Barnette Q, Brown LM, Schu M

Research Square 2021


Background:Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disease which involves multiple body systems (e.g., immune, nervous, digestive, circulatory) and research domains (e.g., immunology, metabolomics, the gut microbiome, genomics, neurology). Despite several decades of research, there are no established ME/CFS biomarkers available to diagnose and treat ME/CFS. Sharing data and integrating findings across these domains is essential to advance understanding of this complex disease by revealing diagnostic biomarkers and facilitating discovery of novel effective therapies.

Methods: The National Institutes of Health funded the development of a data sharing portal to support collaborative efforts among an initial group of three funded research centers. This was subsequently expanded to include the global ME/CFS research community. Using the open-source comprehensive knowledge archive network (CKAN) framework as the base, the ME/CFS Data Management and Coordinating Center developed targeted metadata collection, smart search capabilities, and domain-agnostic data integration to support data findability and reusability while reducing the barriers to sustainable data sharing.

Results:We designed the mapMECFS data portal to facilitate data sharing and integration by allowing ME/CFS researchers to browse, share, compare, and download molecular datasets from within one data repository. At the time of publication, mapMECFS contains data curated from public data repositories, peer-reviewed publications, and current ME/CFS network researchers.

Conclusions: mapMECFS is a disease-specific data portal to improve data sharing and collaboration among ME/CFS researchers around the world. mapMECFS is accessible to the broader research community with registration. Further development is ongoing to include novel systems biology and data integration methods.

Long-Covid Research References

  1. Health Complications in Patients Recovering from COVID-19: A Narrative Review of Post-COVID Syndrome.
  2. Frequency, signs and symptoms, and criteria adopted for long COVID: a systematic review
  3. Post COVID-19 Syndrome (Long Haul Syndrome): Description of a Multidisciplinary Clinic at the Mayo Clinic and Characteristics of the Initial Patient Cohort
  4. The Pathogenesis of Long-Term Neuropsychiatric COVID-19 and the Role of Microglia, Mitochondria, and Persistent Neuroinflammation: A Hypothesis
  5. COVID-19- A Redox Disease What a Stress Pandemic Can Teach Us About Resilience and What We May Learn from the Reactive Species Interactome About its Treatment
  6. Epidemiology and organ specific sequelae of post-acute COVID19: A Narrative Review
  7. A prospective study of long-term outcomes among hospitalized COVID-19 patients with and without neurological complications
  8. Long-COVID Syndrome? A Study on the Persistence of Neurological, Psychological and Physiological Symptoms
  9. Post-COVID Syndrome: An Insight on Its Pathogenesis
  10. Frequency, signs and symptoms, and criteria adopted for long COVID: a systematic review

Katrina Pears, Research Correspondent, ME Association

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