Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Who Have Already Visited Some Medical Institutions: Diagnosis, Treatment and Research

Abstract:

Myalgic encephalitis/chronic fatigue syndrome (ME/CFS) is an acquired intractable disease characterized by profound fatigue, post-exertional malaise, sleep disturbance, cognitive impairment, and orthostatic intolerance, among other features. The onset often follows an infectious episode. Importantly, the various types of autonomic dysfunctions, pain, and intolerance to various stimuli in ME/CFS patients are intrinsically different from the “fatigue” of healthy individuals. In this short essay, I summarize the current diagnostic and therapeutic strategies for ME/CFS, as well as the progress in the immunological and imaging research on this intractable disease.

Source: Sato W. [Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Who Have Already Visited Some Medical Institutions: Diagnosis, Treatment and Research]. Brain Nerve. 2022 May;74(5):652-659. Japanese. doi: 10.11477/mf.1416202093. PMID: 35589660. https://pubmed.ncbi.nlm.nih.gov/35589660/ [Article in Japanese]

A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

We propose a framework for the treatment, rehabilitation, and research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) using a natural history of disease approach to outline the distinct disease stages, with an emphasis on cases following infection to provide insights into prevention.

Moving away from the method of subtyping patients based on the various phenotypic presentations and instead reframing along the lines of disease progression could help with defining the distinct stages of disease, each of which would benefit from large prospective cohort studies to accurately describe the pathological mechanisms taking place therein. With a better understanding of these mechanisms, management and research can be tailored specifically for each disease stage.

Pre-disease and early disease stages call for management strategies that may decrease the risk of long-term morbidity, by focusing on avoidance of further insults, adequate rest to enable recovery, and pacing of activities.

Later disease stages require a more holistic and tailored management approach, with treatment—as this becomes available—targeting the alleviation of symptoms and multi-systemic dysfunction.

More stringent and standardised use of case definitions in research is critical to improve generalisability of results and to create the strong evidence-based policies for management that are currently lacking in ME/CFS.

Source: O’Boyle S, Nacul L, Nacul FE, Mudie K, Kingdon CC, Cliff JM, Clark TG, Dockrell HM and Lacerda EM. A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Front. Med. 8:688159. https://www.frontiersin.org/articles/10.3389/fmed.2021.688159/full (Full text)

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): An Overview

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic systemic disease that manifests via various symptoms such as chronic fatigue, post-exertional malaise, and cognitive impairment described as “brain fog”. These symptoms often prevent patients from keeping up their pre-disease onset lifestyle, as extended periods of physical or mental activity become almost impossible. However, the disease presents heterogeneously with varying severity across patients. Therefore, consensus criteria have been designed to provide a diagnosis based on symptoms. To date, no biomarker-based tests or diagnoses are available, since the molecular changes observed also largely differ from patient to patient.

In this review, we discuss the infectious, genetic, and hormonal components that may be involved in CFS pathogenesis, we scrutinize the role of gut microbiota in disease progression, we highlight the potential of non-coding RNA (ncRNA) for the development of diagnostic tools and briefly mention the possibility of SARS-CoV-2 infection causing CFS.

Source: Deumer US, Varesi A, Floris V, Savioli G, Mantovani E, López-Carrasco P, Rosati GM, Prasad S, Ricevuti G. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): An Overview. J Clin Med. 2021 Oct 19;10(20):4786. doi: 10.3390/jcm10204786. PMID: 34682909; PMCID: PMC8538807. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8538807/ (Full text)

Turning a Corner in ME/CFS Research

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.
Source: Pheby DFH, Friedman KJ, Murovska M, Zalewski P. Turning a Corner in ME/CFS Research. Medicina. 2021; 57(10):1012. https://doi.org/10.3390/medicina57101012  https://www.mdpi.com/1648-9144/57/10/1012 (Full article available as PDF file)

A Comprehensive Update of the Current Understanding of Chronic Fatigue Syndrome

Abstract:

This is a comprehensive literature review of chronic fatigue syndrome (CFS). We provide a description of the background, etiology, pathogenesis, diagnosis, and management regarding CFS. CFS is a multifaceted illness that has many symptoms and a wide array of clinical presentations.

As of recent, CFS has been merged with myalgic encephalomyelitis (ME). Much of the difficulty in its management has stemmed from a lack of a concrete understanding of its etiology and pathogenesis. There is a potential association between dysfunction of the autoimmune, neuroendocrine, or autonomic nervous systems and the development of CFS. Possible triggering events, such as infections followed by an immune dysregulation resulting have also been proposed. In fact, ME/CFS was first described following Epstein Barr virus (EBV) infections, but it was later determined that it was not always preceded by EBV infection.

Patient diagnosed with CFS have shown a noticeably earlier activation of anaerobic metabolism as a source of energy, which is suggestive of impaired oxygen consumption. The differential diagnoses range from tick-borne illnesses to psychiatric disorders to thyroid gland dysfunction. Given the many overlapping symptoms of CFS with other illnesses makes diagnosing it far from an easy task.

The Centers for Disease Control and Prevention (CDC) considers it a diagnosing of exclusion, stating that self-reported fatigue for at minimum of six months and four of the following symptoms are necessary for a proper diagnosis: memory problems, sore throat, post-exertion malaise, tender cervical or axillary lymph nodes, myalgia, multi-joint pain, headaches, and troubled sleep. In turn, management of CFS is just as difficult.

Treatment ranges from conservative, such as cognitive behavioral therapy (CBT) and antidepressants, to minimally invasive management. Minimally invasive management involving ranscutaneous electrical acupoint stimulation of target points has demonstrated significant improvement in fatigue and associated symptoms in a 2017 randomized controlled study. The understanding of CFS is evolving before us as we continue to learn more about it. As further reliable studies are conducted, providing a better grasp of what the syndrome encompasses, we will be able to improve our diagnosis and management of it.

Source: Noor N, Urits I, Degueure A, Rando L, Kata V, Cornett EM, Kaye AD, Imani F, Narimani-Zamanabadi M, Varrassi G, Viswanath O. A Comprehensive Update of the Current Understanding of Chronic Fatigue Syndrome. Anesth Pain Med. 2021 Jun 26;11(3):e113629. doi: 10.5812/aapm.113629. PMID: 34540633; PMCID: PMC8438707. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8438707/  (Full text)

Chronic fatigue syndrome: source of controversy

Abstract:

Chronic fatigue syndrome (CFS) remains a controversial medical disorder. A combination of poorly executed studies using variable case definitions and diagnostic criteria have led to controversial results. These controversies cloud our vision on CFS, and lead to scepticism and frustration among patients, doctors and researchers. For future perspective, interdisciplinary studies of high quality with large well-defined patient groups and adequate controls are needed.

Source: Raijmakers RPH, van der Meer JWM. Het chronische-vermoeidheidsyndroom: bron van ophef [Chronic fatigue syndrome: source of controversy]. Ned Tijdschr Geneeskd. 2020 Dec 10;164:D5611. Dutch. PMID: 33332043. [Article in Dutch] https://pubmed.ncbi.nlm.nih.gov/33332043/

The case of Chronic Fatigue Syndrome-Myalgic Encephalomyelitis

Overview:

Chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) affect approximately 1 million Americans (Jason, Richman, Rademaker, Jordan, Plioplys, Taylor, et al., 199%); while some individuals believe that CFS and ME refer to the same illness, others characterize ME as a more severe, neurological disorder that is discrete from CES (Twisk, 2013). This controversy will be reviewed in detail. The widespread, debilitating symptoms of the illnesses include but are not limited to feeling sick after activity (known as post-exertional malaise), memory and concentration problems, and unrefreshing sleep (IOM, 2015).

Some researchers suggest that ME and CFS were first conceptualized under the diagnostic label ‘newrasthenia,’ defined as a neurological disease characterized by muscle weakness or fatigue. Notably, neurasthenia was one of the most frequently diagnosed illnesses in the late nineteenth century. However, use of this term had substantially decreased by the mid-twentieth century (Wessely, 1994)

Throughout the twentieth century, several outbreaks of idiopathic, fatigue-related illneses occurred, including ‘atypical poliomyelitis’ at Los Angeles County Hospital in 1934 (Meals, Hauser, & Bowe 1938), ‘encephalomyelits’ at the Royal Free Hospital in London in 1955 (Crowley, Nelon, & Stovi 1957), and ‘chronic mononucleosis-like syndrome’ in Lake Tahoe, Nevada, in 1984 (Barnes, 1986). After the Lake Tahoe outbreak, national attention began to focus on this illness (Wessely, 1994), and in 1988, it was named donc fatigue syndrome by the Centers for Disease Control and Prevention (CDC; Holmes, Kaplan, Gantz, Komaroff, Schonberger, Straus, ct al, 1988). For over two decades, the ease definition that the CDC developed (Fukuda, Straus, Hickic, Sharpe, Dobbins, & Komaroff, 1994) has bbeen prominently used in research and clinical practice; however, the Institute of Medicine (10M) recently developed an updated clinical case definition (IOM, 2015).

The annual direct and indirect costs of ME and CFS in the United States are estimated to be between $19 and $24 billion (Jason, Benton, Johnson, & Valentine, 2008). Individuals with ME and CES have an increased risk of cardiovascular-related mortality and a lower mean age of death by suicide and cancer in comparison to the general US population (McManimen, Devendorf, Brow Moore, Moore, & son, 2016).

In addition, arthritis, high blood pressure, fibromyalgia, and multiple chemical sensitivities are commonly comorbid (Jason, Porter, Hunnell, Brown, Rademaker, & Richman, 2011). Although no virus has been identified as the cause of ME and CFS, the immune system may be overactive (Fischer, William, Strauss, Unger, Jason, Marshall, etl, 2014), and there is and fibromyalgia using regression tree analysis and artificial neural network analysis, composed of computer-based models used to evaluate complex correlations. The patients were randomly divided into two groups. One group served to derive classification criteria sets by sophisticated procedures, including artificial neural networks in parallel. These criteria were then validated with the second group. Symptoms that best differentiated patients with ME and CES from the other patients were acute onset of fatigue and sore throat.

Additionally, a recent study highlighted that the duration of post-exertional malaise symptoms can distinguish ME and CFS from other chronic illnesses (Cotler, Holtzman, Dudun, & Jason, 2018). The lesson that is apparent from this section is that it is essential for a consensus on a case definition among investigators for establishing a solid empiric foundation in any illness or disease.

Source: Handbook of Research Methods in Health Psychology, Chapter 17: Chronic Illness, pp 228-241, Date:  November 29, 2020 and January 2021 URL: https://books.google.com/books?id=fPQCEAAAQBAJ&pg=PA228  Ref: https://www.routledge.com/Handbook-of-Research-Methods-in-Health-Psychology/Ragin-Keenan/p/book/9780429488320

 

Chronic fatigue syndrome: progress and possibilities

Abstract:

Chronic fatigue syndrome (CFS) is a prevalent condition affecting about one in 100 patients attending primary care. There is no diagnostic test, validated biomarker, clear pathophysiology or curative treatment. The core symptom of fatigue affects both physical and cognitive activities, and features a prolonged post-activity exacerbation triggered by tasks previously achieved without difficulty.

Although several different diagnostic criteria are proposed, for clinical purposes only three elements are required: recognition of the typical fatigue; history and physical examination to exclude other medical or psychiatric conditions which may explain the symptoms; and a restricted set of laboratory investigations. Studies of the underlying pathophysiology clearly implicate a range of different acute infections as a trigger for onset in a significant minority of cases, but no other medical or psychological factor has been reproducibly implicated.

There have been numerous small case-control studies seeking to identify the biological basis of the condition. These studies have largely resolved what the condition is not: ongoing infection, immunological disorder, endocrine disorder, primary sleep disorder, or simply attributable to a psychiatric condition. A growing body of evidence suggests CFS arises from functional (non-structural) changes in the brain, but of uncertain character and location. Further functional neuroimaging studies are needed.

There is clear evidence for a genetic contribution to CFS from family and twin studies, suggesting that a large scale genome-wide association study is warranted. Despite the many unknowns in relation to CFS, there is significant room for improvement in provision of the diagnosis and supportive care. This may be facilitated via clinician education.

Source: Sandler CX, Lloyd AR. Chronic fatigue syndrome: progress and possibilities. Med J Aust. 2020 Apr 5. doi: 10.5694/mja2.50553. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/32248536

Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: Indications of change over a decade

Abstract:

This commentary identifies recent scientific and clinical milestones that appear to have increased legitimization of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). These milestones include government-funded reports recognizing the seriousness of ME/CFS, new initiatives for biomedical research sponsored by the US National Institutes of Health, official endorsement of the ME/CFS name, publication of practitioner primers, and the launch of a new peer-review fatigue journal. These positive developments are tempered by ongoing illness challenges including patient stigma, absence of diagnostic markers, a lack of established treatments, and a dearth of researchers and knowledgeable, interested clinicians.

Source: Fred Friedberg (2020) Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2020.1718292

Editorial: Advances in ME/CFS Research and Clinical Care

Editorial:

Advances in ME/CFS Research and Clinical Care spotlights Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a maligned, stigmatized, under-researched disease, which lacks a definitive, objective clinical test for its diagnosis, and definitive palliative and curative treatments. A few brave physicians attempt to alleviate the suffering of the afflicted. They rely upon the patients’ symptoms to guide them. Physicians can provide symptomatic relief and improve upon patients’ abnormal physiological and metabolic parameters by intervening to cause the latter to approach normal limits.

Documented to be more severely disabling than HIV-AIDS, ME/CFS receives disturbingly little funding in the United States and around the world. ME/CFS patients constitute an identifiable, underserved population that is in need of the recognition which would raise them from their current, underserved or non-served patient status into the mainstream of healthcare worldwide. ME/CFS is a common disease worldwide, affecting approximately 1 percent of the world’s population.

You can read the rest of this article HERE.

Source: Friedman KJ, Bateman L, Bested A, Nahle Z. Editorial: Advances in ME/CFS Research and Clinical Care. Front Pediatr. 2019 Sep 18;7:370. doi: 10.3389/fped.2019.00370. eCollection 2019. https://www.frontiersin.org/articles/10.3389/fped.2019.00370/full (Full article)