Turning a Corner in ME/CFS Research

Abstract

This collection of research papers addresses fundamental questions concerning the nature of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), the problem of disbelief and lack of knowledge and understanding of the condition among many doctors and the origins of this problem, and its impact on patients and their families. We report briefly the growing knowledge of the underlying pathological processes in ME/CFS, and the development of new organizations, including Doctors with ME, the US ME/CFS Clinical Coalition and EUROMENE, to address aspects of the challenges posed by the illness. We discuss the implications of COVID-19, which has much in common with ME/CFS, with much overlap of symptoms, and propose a new taxonomic category, which we are terming post-active phase of infection syndromes (PAPIS) to include both. This collection of papers includes a number of papers reporting similar serious impacts on the quality of life of patients and their families in various European countries. The advice of EUROMENE experts on diagnosis and management is included in the collection. We report this in light of guidance from other parts of the world, including the USA and Australia, and in the context of current difficulties in the UK over the promulgation of a revised guideline from the National Institute for Health and Care Excellence (NICE). We also consider evidence on the cost-effectiveness of interventions for ME/CFS, and on the difficulties of determining the costs of care when a high proportion of people with ME/CFS are never diagnosed as such. The Special Issue includes a paper which is a reminder of the importance of a person-centred approach to care by reviewing mind–body interventions. Finally, another paper reviews the scope for prevention in minimizing the population burden of ME/CFS, and concludes that secondary prevention, through early detection and diagnosis, could be of value.

Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity

“…In the ME/CFS research landscape, the focus has traditionally been on comparing patients with healthy controls, with limited attention to longitudinal aspects and periods of improvement ( 58 , 59 ). Our study addresses this gap by taking a single patient-centered approach ( 60 , 61 ) exploring molecular and phenotypic differences underlying severity improvements in ME/CFS. While acknowledging the N-of-1 nature of our study and the necessity for larger cohort studies, our integrative longitudinal strategy, incorporating health, clinical, cytokine profiling, and textual data over more than 4 years period offers invaluable insights.…”

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: the biology of a neglected disease

“…The diverse symptom presentation and patient heterogeneity indicate that ME/CFS is likely to have a multifactorial origin ( 23 , 30 , 53 , 58 ), with multiple physiological processes implicated in the pathogenesis ( 52 , 59 ). It is unlikely that one single protein or RNA transcript will be consistent across the disease spectrum ( 60 ).…”

“…Since stress has been described as a potential trigger for ME/CFS ( 422 ) and cause of symptom flare-ups ( 423 , 424 ), it is likely that the HPA axis- the neurobiological stress system- may be implicated in ME/CFS ( 53 , 425 , 426 ), as well as abnormalities in growth hormone (GH) secretion and dysfunctional adrenergic metabolism ( 255 ). Immune and inflammatory responses in the blood are mediated by the HPA axis to prevent any autoimmune alterations ( 63 ).…”

“…Since not enough is known about the risk factors of ME/CFS, it makes primary prevention unlikely ( 53 ). However, secondary prevention is possible to reduce diagnostic delay, the incidence of severe and prolonged disease, and costs of care.…”

“…However, secondary prevention is possible to reduce diagnostic delay, the incidence of severe and prolonged disease, and costs of care. One way to minimise diagnostic delays is to rectify the disbelief of doctors and the stigmatization around ME/CFS ( 53 , 533 , 534 ). In 1969, the WHO classified ME/CFS as a neurological disease ( 44 ) based on the neurological features of the disease.…”