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.
MEA audio commentary on this week's research
ME/CFS Research Published 25 – 31 January 2022
Compared to last week it’s been a very disappointing week for ME/CFS research. There has only been three new pieces of ME/CFS research but fourteen studies on Long Covid.
None of the studies reported in this weeks roundup are in peer-reviewed journals or present results from biomedical research. In summary:
- Paper one (1) is an abstract from a Chapter in a book which talks about the role of the gut in ME/CFS. We cannot access the full content so cannot comment any further.
- Paper two (2) is a letter published in the Journal of Translational Medicine on endothelial dysfunction (layer of cells lining blood vessels) being the cause of pain, inflammation and post-exertional malaise in ME/CFS.
- Paper three (3) is an abstract from a PhD thesis on care for ethnic minority children with ME/CFS. The research suggests ways to improve access to services, but I don’t feel this tells us anything new about accessing ME/CFS specialist services. We may see a peer-reviewed paper come out of this in the future.
There are a few interesting biomedical studies to note in the Long Covid reference section. In summary to highlight a few of the studies:
- Paper one (1) presents new research evidence demonstrating that there is a similar type of cytokine mediated immune system activation in Long Covid that has also been found in ME/CFS.
- Paper two (2) unsurprisingly further shows more similarities between ME/CFS and Long Covid, where chronic fatigue and post-exertional malaise are characterised symptoms.
- Paper three (3) is from the small pilot study which has been publicised on the BBC news of late, showing the damage to the lungs of Long Covid patients using xenon gas scan. This is a very small study, using only 11 people not admitted to hospital but this study helps to explain the breathlessness experienced.
ME/CFS Research References and Abstracts
Sharma A., Wakode S., Sharma S., Fayaz F.
Book chapter: In: Kaur I.P., Deol P.K., Sandhu S.K. (eds) Probiotic Research in Therapeutics. Springer, Singapore.
Chronic fatigue syndrome (CFS) is a combination of complex illness characterized by tiredness or intense fatigue that may worsen with too much exertion. Among the wide range of neuropsychological symptoms, 97% CFS patients have been reported with neuronal disorders such as headaches and symptoms in the emotional realm.
Patients with CFS also show noticeable alterations in microflora, lowering level of Lactobacilli and Bifidobacterium.
Recent researches explain that probiotics in the gastrointestinal tract (GIT) can greatly influence the neuronal pathways and central nervous system (CNS) to modulate behavior.
Various studies expressed the benefit of probiotic therapy in normalizing fatigue patients and also restored mitochondrial electron transport function in patients with CFS.
In this chapter, we provided a historical skeleton, bidirectional communication pathophysiology, selection criteria of probiotics, CFS treatment, and clinical implications of gut–brain connections. In summary, various aspects concerning the potential and safety of probiotics in the management of chronic fatigue syndrome are discussed in this chapter.
J Transl Med 20, 40 (2022).
In their hypothesis paper, Wirth, Scheibenbogen, and Paul describe how endothelial dysfunction could produce a wide range of neurological symptoms in people with ME/CFS . As they and others work to refine their understanding of ME/CFS and the related Long COVID syndrome, I would encourage consideration of the possibility that endothelial dysfunction and vascular damage could also explain other symptoms, including widespread pain and inflammation and post-exertional malaise.
For the past four years, my wife and I have been caregivers for our teenage daughter, who has ME/CFS, hypermobile Ehlers-Danlos syndrome, craniocervical instability, Chiari malformation and several other comorbid conditions. Through observation and trial and error, I have developed a number of hypotheses on these matters that I offer here in the hope they might prompt formal research into how to effectively treat these conditions .
Full letter with discussion on Widespread pain and inflammation and post-exertional malaise can be found here.
Bristol Medical School. Student thesis: Doctoral Thesis › Doctor of Philosophy (PhD)
Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a relatively common, complex and disabling condition. CFS/ME is more common in ethnic minority adults, and is likely to be more common in ethnic minority children, but very few ethnic minority children access specialist CFS/ME services.
The aim of this PhD was to explore both the barriers and facilitators ethnic minority children face in accessing CFS/ME services, with an aim to make access more equal. Different methods were used: 1) systematic review, 2) data analysis, 3) qualitative interviews with young people, parents, community ‘influencers’, healthcare professionals, and 4) focus groups with community members.
I conducted a mapping systematic review to: (1) understand barriers ethnic minority children experience when accessing specialist medical services for chronic or mental healthcare conditions, (2) interventions to improve access. This synthesis describes the most common barrier to be ‘Knowledge’ but ‘Cultural Factors’ and ‘Stigma’ were also important. Interventions that focus on reducing multiple access barriers showed the most promise. This review also highlighted the role of facilitators, which informed the PhD.
Data analysis of the baseline characteristics of children who accessed specialist paediatric CFS/ME services and were recruited into a clinical trial showed only 3.93% of children described themselves as an ethnic minority, however data capture methods suggest ethnicity may not be accurately recorded.
Interviews with 25 participants (3 young people with CFS/ME; 5 family members, 14 community leaders and 3 medical professionals), and focus groups with 23 community participants were conducted and thematic analysis identified multiple barriers to accessing CFS/ME services, with three key barriers (‘Conceptualisation of CFS/ME’; ‘Cultural Factors’; and ‘Going to the Doctors’) and few facilitators. Terminology was also important, with “community leaders” declining the term “leader”.
Participants suggested the following ideas to improve access: 1) knowledge and awareness building initiatives to increase understanding of CFS/ME and reduce stigma and 2) healthcare system improvements, including more General Practitioner (GP) consultations, shorter waiting times, and staff of different ethnicities. Future work is needed to pilot these ideas to improve access and develop interventions.
Long-COVID Research References
- What should a family physician know about nutrition and physical exercise rehabilitation' advices to communicate to “long-term COVID-19” patients?
- Multi-disciplinary collaborative consensus guidance statement on the assessment and treatment of cognitive symptoms in patients with post-acute sequelae of SARS-CoV-2 infection (PASC)
- Diagnostic challenges posed by intersections between post-acute covid syndrome and neurocognitive disorders
- Symptoms compatible with long-COVID in healthcare workers with and without SARS-CoV-2 infection – results of a prospective multicenter cohort
- The Investigation of Pulmonary Abnormalities using Hyperpolarised Xenon Magnetic Resonance Imaging in Patients with Long-COVID
- Long COVID in general practice: an analysis of the equity of NHS England's enhanced service specification
Dr Katrina Pears,
The ME Association.