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).
RESEARCH INDEX
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 20 December 2022 – 3 January 2023
This week’s research roundup covers the entirety of the Christmas break, due to the lull in the published research which we would usually see in this period. There have been four new ME/CFS studies and twenty-one new Long Covid studies.
None of the ME/CFS research studies particularly caught our attention over the Christmas period.
We have highlighted one of the ME/CFS studies in detail below:
Paper four (4) is a review article from Australia on the guidance and management of ME/CFS in adolescents. This article gives a detailed background of ME/CFS in adolescents, including diagnosis being possible after 3-6 months with unresolving fatigue to an average duration in an Australian cohort studied being 5 years.
Many of the key points and findings of this review are well detailed in the abstract (summary), however, the review lists five points that are crucial for management, which cover: being believed, receiving a diagnosis, identifying worst symptoms, self management plans and regular follow-ups to discuss symptoms and plans.
There is definitely an in depth understanding of ME/CFS in this review especially from a young persons point of view, there is consideration of family aspects, education/schooling, future aspirations and social aspects, with these sections being worth reading. The common symptoms are tabulated with both non-pharmacological and pharmacological treatments which could be used, although I feel this is a bit lacking with the number of symptoms that were included.
However, there is some concern when talking about management plans, that these include the need to build in physical activity, which the author claims is needed to prevent de-conditioning. There also seems to be a stress on planning and not leaving activities out, and following the plan of activities to avoid excessive post-exertional malaise (PEM). However, in my experience, there is a need to listen to your body and change plans when there’s a need to stop, which I do not think is stressed by this guidance. Furthermore, the author says in regard to weekly activity plans these need to be sustained “over the month before reviewing the plan and increasing some activity”. To me, caution needs to be taken as this seems very similar to graded-exercise therapy (although talking about all daily activities).
On balance this review article has some well thought out recommendations putting young people at the centre, but caution does need to be taken on some of the guidance given. If you are interested in reading the full article, there is a read-aloud function available on the publishers website. The ME Association has a range of free leaflets on ME/CFS in children and young people.
ME/CFS Research References and Abstracts
Oter-Quintana, C.; Esteban-Hernández, J.; CuéllarPompa, L.; Gil-Carballo, M.C.; Brito-Brito, P.R.; Martín-García, A.; Alcolea-Cosín, M.T.; MartínezMarcos, M.; Alameda-Cuesta, A.
Healthcare 2022, 10, 2506.
Abstract:
Although previously developed qualitative studies have explored the experience of illness of individuals with myalgic encephalomyelitis/chronic fatigue syndrome, these findings have not been undertaken for the purpose of enabling the identification of nursing care needs in such patients.
This study aims to identify NANDA-I nursing diagnoses of adults with myalgic encephalomyelitis/chronic fatigue syndrome based on a qualitative literature review of their experience of illness.
The protocol includes: searches in the electronic databases Medline, Embase, CINAHL, PsycINFO, SCI-EXPANDED, SSCI, SciELO, LILACS, and Cuiden; and manual searches in specialised journals and the references of the included studies. The authors will systematically search qualitative research studies published in databases from 1994 to 2021. Searches are limited to studies in Spanish and English. All stages of the review process will be carried out independently by two reviewers. Any disagreements shall be resolved through joint discussions, involving a third reviewer if necessary.
The findings will be synthesised into a thematic analysis informed by the Domains and Classes of the NANDA-I Classification of Nursing Diagnoses, which will then serve to identify nursing diagnoses.
This review will enable nursing professionals to identify the care needs of individuals with myalgic encephalomyelitis/chronic fatigue syndrome by taking into consideration their experience of illness in its entirety.
David F Marks.
Arch Epidemiol Pub Health Res, 1(2), 97-143.
Abstract
The psychosomatic approach to medically unexplained symptoms, myalgic encephalomyelitis and chronic fatigue syndrome (MUS/ME/CFS) is critically reviewed using scientific criteria. Based on the ‘Biopsychosocial Model’, the psychosomatic theory proposes that patients’ dysfunctional beliefs, deconditioning and attentional biases cause or make illness worse, disrupt therapies, and lead to preventable deaths.
The evidence reviewed suggests that none of these psychosomatic hypotheses is empirically supported. The lack of robust supportive evidence together with the use of fallacious causal assumptions, inappropriate and harmful therapies, broken scientific principles, repeated methodological flaws and an unwillingness to share data all give the appearance of cargo cult science.
The psychosomatic approach needs to be replaced by a scientific, biologically grounded approach to MUS/ME/CFS that can be expected to provide patients with appropriate care and treatments. Patients with MUS/ME/CFS and their families have not been treated with the dignity, respect and care that is their human right. Patients with MUS/ME/CFS and their families could consider a class action legal case against the injuring parties.
Barnden, L.; Crouch, B.; Kwiatek, R.; Shan, Z.; Thapaliya, K.; Staines, D.; Bhuta, S.; Del Fante, P.; Burnet, R.
Brain Sci. 2022, 12, 1693.
Abstract
Differential axonal myelination synchronises signalling over different axon lengths. The consequences of myelination processes described at the cellular level for the regulation of myelination at the macroscopic level are unknown.
We analysed multiple cohorts of myelin-sensitive brain MRI. Our aim was to (i) confirm a previous report of anti-correlation between myelination in subcortical and sensorimotor areas in healthy subjects, (ii) and thereby test our hypothesis for a regulatory interaction between them.
We analysed nine image-sets across three different human cohorts using six MRI modalities. Each image-set contained healthy controls (HC) and ME/CFS subjects.
Subcortical and Sensorimotor regions of interest (ROI) were optimised for the detection of anti-correlations and the same ROIs were used to test the HC in all image-sets. For each cohort, median MRI values were computed in both regions for each subject and their correlation across the cohort was computed.
We confirmed negative correlations in healthy controls between subcortical and sensorimotor regions in six image-sets: three T1wSE (p = 5 × 10−8, 5 × 10−7, 0.002), T2wSE (p =2 × 10−6), MTC (p = 0.01), and WM volume (p = 0.02). T1/T2 was the exception with a positive correlation (p = 0.01).
This myelin regulation study is novel in several aspects: human subjects, cross-sectional design, ROI optimization, spin-echo MRI and reproducible across multiple independent image-sets.
In multiple independent image-sets we confirmed an anti-correlation between subcortical and sensorimotor myelination which supports a previously unreported regulatory interaction.
The subcortical region contained the brain’s primary regulatory nuclei. We suggest a mechanism has evolved whereby relatively low subcortical myelination in an individual is compensated by upregulated sensorimotor myelination to maintain adequate sensorimotor performance.
Rowe K.
Adolescent Health, Medicine and Therapeutics, Volume 14: 13-26.
Abstract
This paper reviews the current understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and whether any treatment strategies have been effective.
ME/CFS is a condition of as yet unknown etiology that commonly follows an infective process. It includes a new onset of fatigue (of more than 3– 6 month duration and not relieved by rest), post-exertional malaise, cognitive difficulties and unrefreshing sleep, and frequently orthostatic intolerance, somatic symptoms and pain.
Long COVID has renewed interest in the condition and stimulated research with findings suggestive of a multisystem neuroimmune disease.
There are no definitively effective treatments. Despite earlier recommendations regarding graded exercise therapy and cognitive behavior therapy, the current recommendations are managing symptoms, with lifestyle management and supportive care.
This paper provides an outline of strategies that young people and their families have reported as helpful in managing a chronic illness that impacts their life socially, physically, emotionally, cognitively and educationally.
As the illness frequently occurs at a time of rapid developmental changes, reducing these impacts is reported to be as important as managing the physical symptoms. Young people face a mean duration of 5 years illness (range 1– 16 years) with a likely residual 20% having significant restrictions after 10 years.
Their feedback has suggested that symptom management, self-management strategies, advocacy and educational liaison have been the most helpful. They value professionals who will listen and take them seriously, and after excluding alternative diagnoses, they explain the diagnosis, are supportive and assist in monitoring their progress.
Remaining engaged in education was the best predictor of later functioning. This allowed for social connections, as well as potential independence and fulfilling some aspirations. The need to consider the impact of this chronic illness on all aspects of adolescent development, as part of management, is highlighted.
Plain Language Statement
This paper reviews the current understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and whether any treatment strategies in adolescents have been effective.
ME/CFS has been reported in the literature for more than 150 years but with different names depending on the supposed etiology. Similarities with long COVID have renewed interest in the condition and stimulated research with findings suggestive of a multisystem neuroimmune disease.
There are currently no definitively effective treatments. Despite earlier recommendations regarding graded exercise therapy and cognitive behavior therapy, the current recommendations are managing symptoms, with lifestyle management and supportive care.
This paper provides an outline of strategies that young people and their families have reported as helpful in managing a chronic illness that impacts their life socially, physically, emotionally, cognitively and educationally.
Their feedback has suggested that symptom management, self-management strategies, advocacy and educational liaison have been the most helpful. The need to consider the impact of this chronic illness on all aspects of adolescent development, as part of management, is highlighted.
Long-COVID Research References
Dr Katrina Pears,
Research Correspondent.
The ME Association.
