The weekly research round-up includes recent publications about ME/CFS and Long Covid. We highlight the studies that have particularly caught our interest and follow these with the full list of publications together with their abstracts (summaries).
The ME Association maintains a comprehensive index of published research on ME/CFS and Long Covid that is free to use and updated weekly.
Audio Commentary by Dr Katrina Pears
ME/CFS Research Published 13 – 20 February 2023
It’s been a comparatively quiet week for ME/CFS research, with four new ME/CFS studies but seventeen new Long Covid studies.
None of the studies particularly caught our eyes this week, with one of the studies (paper two (2)) being on the use of CBT in a range of chronic health conditions, with the introduction claiming that CBT is an evidence-based treatment for ME/CFS (which is against the new NICE guidelines advice). Paper three (3) is an Educational Psychology Thesis on school-based experiences. Paper four (4) is an opinion piece, in which the author believes that the bacteria staphylococcus aureus plays a role in about a third of ME/CFS cases.
We have highlighted one of the ME/CFS studies in more detail below:
Paper one (1) is a case report and presents data on one medical case study, which details characterising post-Covid-19 ME/CFS with post-exertional malaise (PEM) and low serum acylcarnitine levels (biological intermediates that play a vital role in energy production).
This published report doesn’t tell us anything we don’t know already, with the central idea being to establish the key symptoms in Long Covid which would lead to a ME/CFS diagnosis. The researchers summarise a selection of previously published research, with only a total of four pages and 17 studies referenced. The study concludes that PEM is key to diagnosis and believe graded exercise therapy and cognitive behavioural therapy have been reported to be safe and effective.
The authors also comment that there is “common agreement that ME/CFS is associated with changes in acylcarnitine and l-carnitine homeostasis”, which is confirmed in the one patient which was tested in this study. The authors also claim that low serum acylcarnitine levels confirm an accurate diagnosis, however, there are no established biomarkers in ME/CFS.
There have been very mixed findings in previous research, some studies finding normal carnitine levels in ME/CFS (Soetekouw et al., 2000) (a brief summary of the research in this area can be found here). To also explain the context of these findings, carnitine and acylcarnitine are very similar, interchangeable and can be converted by enzymes with the addition or removal of the acetyl group. Although acylcarnitine is more easily absorbed in the gut.
In conclusion, this is definitely not a strong study, it doesn’t add to the field, and there is an unfortunate typo of ME/CFS (ME/CSF) in the 49-word abstract.
There are several papers which you may be interested in reading in the Long Covid reference section this week:
- Paper one (1) shows multi-organ impairment after one year in people with Long Covid, you can read further coverage of this study here.
- Paper two (2) is a promising preprint looking at muscle biopsies from 11 patients, showing fewer capillaries, thicker capillary basement membranes and increased numbers of CD169+ macrophages (types of white blood cell) in Long Covid patients compared to controls. However, the Covid-19 virus could not be detected in the muscle tissue, but genetic changes were found here, which suggest immune dysregulation and altered metabolic pathways.
ME/CFS Research References and Abstracts
Jinushi R, Nishiguchi S, Masuda S, Sasaki A, Koizumi K, Ryozawa S.
Clin Case Rep. 2023 Feb 10;11(2):e6930.
COVID-19 afflicts patients with acute symptoms and longer term sequelae. One of the sequelae is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is often difficult to diagnose, having no established tests. In this article, we synthesize information from literature reviews on patients with ME/CSF that developed after recovery from COVID-19.
Nijhof, L., Nijhof, S., Van de Putte, E., Houtveen, J., Van Montfrans, J., & Knoop, H.
Behavioural and Cognitive Psychotherapy, 1-6.
Background: Severe fatigue is a prominent symptom among adolescents with a chronic medical condition, with major impact on their well-being and daily functioning. Internet-based cognitive behavioural therapy (I-CBT) is a promising treatment for severe fatigue among adolescents with a chronic medical condition, but its effectiveness has not been studied.
Aims: We developed an I-CBT intervention for disabling fatigue in a chronic medical condition and tested its feasibility and effectiveness in an adolescent with an immune dysregulation disorder (IDD), namely juvenile idiopathic arthritis (JIA).
Method: The application of I-CBT is illustrated through a clinical case study of a 15-year-old girl with JIA and chronic severe fatigue. An A-B single case experimental design was used with randomization of the waiting period prior to start of the intervention. Outcomes were weekly measures of fatigue severity, physical functioning, school absence and pain severity.
Results: Fatigue severity significantly decreased following I-CBT. Improvements were observed towards increased school attendance and improved physical functioning following the intervention, but these effects were too small to become significant.
Conclusions: The study provides preliminary support for the feasibility and effectiveness of the application of I-CBT for severe fatigue in adolescents with a long-term medical condition.
Lewis, Mariana L.
Educational Psychology Thesis (DEdPsy). University of Bristol.
Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is a complex chronic medical condition, affecting up to 2% of secondary school aged children in the UK (Collard & Murphy, 2020). It is an illness that has historically been contested and is widely misunderstood, contributing to negative stereotyping and stigma (Blease et al, 2017). Together with the physical symptoms of a complex illness, this has significant implications for the school experiences of young people with ME/CFS.
Using a social constructionist framework that recognises that knowledge creation is a shared enterprise, this research adopts a social justice perspective, which shapes the entirety of the research process. Adopting Narrative Inquiry as a methodology, this study explores the stories constructed by three young people with ME/CFS, aged between sixteen and seventeen, in relation to their school experiences.
The young people used audio or written diaries to construct their narratives and participate in an optional follow up reflective interview. The young people’s narratives were analysed using the Listening Guide (Brown & Gilligan, 1993), a ‘Voice Centred Relational Method’, revealing the complex, unique and subjective nature of individual experience. Bronfenbrenner’s ecological systems theory (1979) and Ryan and Deci’s Self-determination theory (2017) were used as explanatory frameworks to illustrate the findings, which indicated that understanding, communication and flexibility of adaptations were key factors shaping the young people’s experiences of school.
A model for practice has been created for Educational Psychologists to consider using with schools, in order to identify factors within the young people’s environmental systems that could be addressed to promote a positive school experience.
This dissertation concludes with considerations of how narrative approaches can be used to guide the work of Educational Psychologists. Implications for professional practice have been shared, highlighting the importance of viewing the needs of young people with ME/CFS holistically, and adopting a person-centred approach.
Gustavo Aguirre Chang and Aurora Natividad Trujillo Figueredo.
Nasal Decolonization is performed with an antiseptic such as Povidone-iodine. For the Therapeutic Test an Antibiotic such as Flucloxacillin plus Probiotics or other supplements with an effect against S.aureus is indicated.
There is a Subgroup of patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID Syndrome or PACS who present a persistent bacterial infection that affects the upper respiratory tract, and especially at the level of the nostrils.
We estimate that this Subgroup of patients presenting this persistent infection as a causal or contributing factor would be around a third of all cases.
The most frequent causative agent of these persistent and/or recurrent infections is the Staphylococcus aureus bacterium. According to the studies carried out, this bacterium is present in the nasal passages of between 16 and 36% of the general population, who are asymptomatic carriers of Staphylococcus aureus, and are often unaware of it.
In health professionals who carry out care work, the percentage of carriers can exceed 50%. In a recent study carried out in health workers and medical students, 65% of nasal carriers of S. aureus were reported, and of these, 74% were multidrug-resistant (MDR) bacteria and 69% were biofilm-forming bacteria .
Long-COVID Research References
- Post-COVID syndrome is associated with capillary alterations, macrophage infiltration and distinct transcriptomic signatures in skeletal muscles
- Long COVID-19 Syndrome Severity According to Sex, Time from the Onset of the Disease, and Exercise Capacity—The Results of a Cross-Sectional Study
- STIMULATE-ICP: A pragmatic, multi-centre, cluster randomised trial of an integrated care pathway with a nested, Phase III, open label, adaptive platform randomised drug trial in individuals with Long COVID: A structured protocol
- Post-COVID-19 Syndrome Comprehensive Assessment: From Clinical Diagnosis to Imaging and Biochemical-Guided Diagnosis and Management
- The long COVID evidence gap: comparing self-reporting and clinical coding of long COVID using longitudinal study data linked to healthcare records
- The role of serum brain injury biomarkers in individuals with a mild-to moderate COVID infection and Long-COVID – results from the prospective population-based COVI-GAPP study
- Effects of pilates on peripheral muscle strength, dyspnea and fatigue in patients with post-covid-19 syndrome: controlled and ranzomized clinical trial
Dr Katrina Pears,
The ME Association.