Category: Myalgic Encephalomyelitis

Clinical overlap between fibromyalgia and myalgic encephalomyelitis. A systematic review and meta-analysis

Abstract:

Introduction: Myalgic encephalomyelitis is an illness characterized by profound malaise after mental or physical effort occurring in patients already suffering from constant fatigue. On the other hand, widespread pain and widespread allodynia are the core fibromyalgia clinical features.

There is controversy on these two syndromes alikeness. Through the years, different diagnostic and/or classification criteria have been put forward to appraise both fibromyalgia and myalgic encephalomyelitis.

The epidemiology of these two illnesses, and their overlap, may vary accordingly to the used definition. The most recent Wolfe et al. 2016 fibromyalgia diagnostic criteria incorporates three myalgic encephalomyelitis features including fatigue, waking unrefreshed and dyscognition. The objective of this meta-analysis was to define the clinical overlap between fibromyalgia and myalgic encephalomyelitis based on a systematic literature review.

Methods: PubMed, Embase, Lilacs, and Cochrane data bases were searched on January 25, 2021 linking the medical subject heading “Fibromyalgia” to the following terms “chronic fatigue syndrome”, “myalgic encephalomyelitis” and “systemic exertion intolerance disease”.

Our review included all original articles in which the clinical overlap between fibromyalgia and myalgic encephalomyelitis could be quantified based on recognized diagnostic or classification criteria. Articles scrutiny and selection followed the PRISMA guidelines. Each study quality was assessed according to GRADE recommendations. The global clinical overlap was calculated using a fixed effect model with inverse variance-weighted average method.

Results: Twenty one publications were included in the meta-analysis. Reviewed studies were highly dissimilar in their design, objectives, sample size, diagnostic criteria, and/or outcomes yielding a 98% heterogeneity index.

Nevertheless, the clinical overlap between fibromyalgia and myalgic encephalomyelitis was a well defined outcome that could be reliably calculated despite the high heterogeneity value.

All reviewed publications had moderate GRADE evidence level. Most evaluated articles used the old 1990 Wolfe et al. fibromyalgia diagnostic criteria. Myalgic encephalomyelitis and fibromyalgia diagnoses overlapped in 47.3% (95% CI: 45.97-48.63) of the reported cases.

Conclusion: This meta-analysis found prominent clinical overlap between fibromyalgia and myalgic encephalomyelitis. It seems likely that this concordance would be even higher when using the most recent Wolfe et al. 2016 fibromyalgia diagnostic criteria.

Source: Ramírez-Morales R, Bermúdez-Benítez E, Martínez-Martínez LA, Martínez-Lavín M. Clinical overlap between fibromyalgia and myalgic encephalomyelitis. A systematic review and meta-analysis. Autoimmun Rev. 2022 Aug;21(8):103129. doi: 10.1016/j.autrev.2022.103129. Epub 2022 Jun 9. PMID: 35690247. https://www.sciencedirect.com/science/article/abs/pii/S1568997222000994?via%3Dihub

Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway

Abstract:

Public health and welfare systems request documentation on approaches to diagnose, treat, and manage myalgic encephalomyelitis and assess disability-benefit conditions. Our objective is to document ME patients’ experiences with services/interventions and assess differences between those meeting different diagnostic criteria, importantly the impact of post-exertional malaise.

We surveyed 660 fatigue patients in Norway using respondent-driven sampling and applied validated DePaul University algorithms to estimate Canadian and Fukuda criteria proxies. Patients on average perceived most interventions as having low-to-negative health effects. Responses differed significantly between sub-groups for some key interventions. The PEM score was strongly associated with the experience of most interventions. Better designed and targeted interventions are needed to prevent harm to the patient group.

The PEM score appears to be a strong determinant and adequate tool for assessing patient tolerance for certain interventions. There is no known treatment for ME, and “do-no-harm” should be a guiding principle in all practice.

Source: Kielland A, Liu J, Jason LA. Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway. J Health Psychol. 2023 Apr 28:13591053231169191. doi: 10.1177/13591053231169191. Epub ahead of print. PMID: 37114822. https://journals.sagepub.com/doi/10.1177/13591053231169191 (Full text)

Achieving symptom relief in patients with Myalgic encephalomyelitis by targeting the neuro-immune interface and optimizing disease tolerance

Abstract:

Myalgic encephalomyelitis, ME, previously also known as chronic fatigue syndrome (CFS) is a heterogeneous, debilitating syndrome of unknown etiology responsible for long-lasting disability in millions of patients worldwide. The most well-known symptom of ME is post-exertional malaise, but many patients also experience autonomic dysregulation, cranial nerve dysfunction and signs of immune system activation. Many patients also report a sudden onset of disease following an infection.

The brainstem is a suspected focal point in ME pathogenesis and patients with structural impairment to the brainstem often show ME-like symptoms. The brainstem is also where the vagus nerve originates, a critical neuro-immune interface and mediator of the inflammatory reflex which regulate systemic inflammation.

Here we report the results of a randomized, placebo-controlled trial using intranasal mechanical stimulation (INMEST) targeting nerve endings in the nasal cavity, likely from the trigeminal nerve, possibly activating additional centers in the brainstem of ME-patients and correlating with a ∼30% reduction in overall symptom scores after eight weeks of treatment.

By performing longitudinal, systems-level monitoring of the blood immune system in these patients, we uncover signs of chronic immune activation in ME, as well as immunological correlates of improvement that center around gut-homing immune cells and reduced inflammation.

The mechanisms of symptom relief remains to be determined, but transcriptional analyses suggest an upregulation of disease tolerance mechanisms. We believe that these results are suggestive of ME as a condition explained by a maladaptive disease tolerance response following infection.

Source: Lucie Rodriguez, Christian Pou, Tadepally Lakshmikanth, Jingdian Zhang, Constantin Habimana Mugabo, Jun Wang, Jaromir Mikes, Axel Olin, Yang Chen, Joanna Rorbach, Jan-Erik Juto, Tie Qiang Li, Per Julin, Petter Brodin, Achieving symptom relief in patients with Myalgic encephalomyelitis by targeting the neuro-immune interface and optimizing disease tolerance, Oxford Open Immunology, 2023;, iqad003, https://doi.org/10.1093/oxfimm/iqad003 (Full text available as PDF file)

Understanding myalgic encephalomyelitis

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe condition characterized by post-exertional neuroimmune exhaustion (PENE) accompanied by neurological, immunological, gastrointestinal (GI), and mitochondrial disturbances (1). The global prevalence of ME/CFS is ∼1%, affecting 17 million to 24 million people (2). ME/CFS is heterogeneous not only in symptom presentation but also illness trajectories, which can be worsening, plateauing, improving, or relapsing-remitting. Approximately 25% of patients with ME/CFS are considered severe and are bound to their homes. Although the etiology of ME/CFS is elusive, a large proportion of patients (∼60%) report post-infectious onset, such as after Epstein-Barr virus infection (3). The recent emergence of a chronic post-infectious condition, called Long Covid, overlaps considerably with ME/CFS in immunological, mitochondrial, and neurological dysfunctions (4). These similarities have resulted in increased interest and acceptance of ME/CFS as a disease and may stimulate research, the development of a diagnostic test, and pharmacotherapeutic interventions in ME/CFS that may be applied to Long Covid.

Read the rest of this article HERE.

Source: Sonya Marshall-Gradisnik and Natalie Eaton-Fitch. Understanding myalgic encephalomyelitis. SCIENCE, 8 Sep 2022, Vol 377, Issue 6611, pp. 1150-1151, DOI: 10.1126/science.abo126 https://www.science.org/doi/10.1126/science.abo1261 (Full text)

Known unknowns, and as yet medically unexplained diseases

Seen from the outside, the process of scientific exploration of diseases seems chaotic and confusing. Indeed, from within, it is tempting to deduce that clinical academics are chaotic and confused.

To be fair, that is an appropriate deduction. Einstein famously said, ‘If we knew what we were doing, it wouldn’t be called research.’ The vast majority of medical research can be compared to solving a particularly complex crossword puzzle. We start with the ‘easy answers’, then progress to the deducible, before staring endlessly at the problems that don’t make sense to us. The hope is that the pieces we already have will enable us to fill the gaps and produce a semblance of sense.

Practising medicine often does not allow this freedom of thought. If the CRP is falling, the antibiotics are working; if it is rising, they’re not; fracture is a fracture; air under the diaphragm represents burst viscera.

Where, then, do we place conditions that we don’t as yet have diagnostic tests for?

Read the rest of this article HERE.

Source: Known unknowns, and as yet medically unexplained diseases by David Strain. BMA, May 12, 2022. https://www.bma.org.uk/news-and-opinion/known-unknowns-and-as-yet-medically-unexplained-diseases

Medical School Education on Myalgic Encephalomyelitis

Abstract:

Background and objectives: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS is a common complex multi-system disease with a significant impact on the quality of life of patients and their families, yet the majority of ME/CFS patients go unrecognised or undiagnosed. For two decades the medical education establishment in the UK has been challenged to remedy these failings, but little has changed. This study was designed to ascertain the current UK medical school education on ME/CFS and to identify challenges and opportunities to inform the future of medical education.

Materials and methods: A questionnaire, developed under the guidance of the Medical Schools Council, was sent to all 34 UK Medical Schools to collect data for the academic year 2018-2019.

Results: Responses were provided by 22 out of a total of 34 medical schools (65%). 59% of respondents taught ME/CFS, led by specialists drawn from 6 medical disciplines. Teaching delivery was usually by lecture; however, discussion case studies and e-learning were used. 7 schools included questions on ME/CFS in their examinations and 3 schools reported likely clinical exposure to ME/CFS patients. 64% of respondents were interested in receiving further teaching aids in ME/CFS. None of the schools shared details of their teaching syllabus so it was not possible to ascertain what students were being taught.

Conclusions: UK medical school teaching in ME/CFS is shown to be inadequate. Several medical disciplines, with known differences about the disease, need to set these aside to give greater clarity in teaching undergraduates so they can more easily recognise and diagnose ME/CFS. Improvements are proposed in ME/CFS medical education consistent with the international paradigm shift in biomedical understanding of this disease. Many medical schools (64% of respondents) acknowledge this need by expressing a strong appetite for the development of further teaching aids and materials. The GMC and MSC are called upon to use their considerable influence to bring about the appropriate changes to medical school curricula so future doctors can recognise, diagnose and treat ME/CFS. The GMC should also consider creating a registered speciality encompassing ME/CFS, post viral fatigue and Long Covid.

Source: Muirhead, N.; Muirhead, J.; Lavery, G.; Marsh, B. Medical School Education on Myalgic Encephalomyelitis. Preprints 2021, 2021030420 https://www.preprints.org/manuscript/202103.0420/v1

Illness intrusiveness in myalgic encephalomyelitis: an exploratory study

Abstract:

This study assessed the relationship between illness intrusiveness, symptoms, disability and depression in patients with myalgic encephalomyelitis (ME). Participants were 16 patients with ME and eight patients with ME plus co-morbid disorders. The patients with co-morbid disorders reported greater illness intrusiveness than the patients with ME alone, but there were no differences between the groups on the other variables. Significant correlations were found between illness intrusiveness on the one hand, and fatigue, cognitive dysfunction, disability and depression, on the other. We conclude that ME is a disabling illness, which has a major impact on various life domains.

 

Source: Goudsmit EM, Stouten B, Howes S. Illness intrusiveness in myalgic encephalomyelitis: an exploratory study. J Health Psychol. 2009 Mar;14(2):215-21. Doi: 10.1177/1359105308100205. https://www.ncbi.nlm.nih.gov/pubmed/19237488

 

Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research

Abstract:

This review examines research findings in patients with myalgic encephalomyelitis in light of the current debate about this chronic multiple-symptom, multiorgan, multisystem illness and the conflicting views in medicine. These issues cannot be separated from the political opinions and assertions that conflict with science and medicine, and will be part of this review as they have enormous consequences for scientific and medical research, patients, clinicians, carers and policy makers.

 

Source: Hooper M. Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research. J Clin Pathol. 2007 May;60(5):466-71. Epub 2006 Aug 25. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1994528/ (Full article)

 

Definitions and aetiology of myalgic encephalomyelitis: how the Canadian consensus clinical definition of myalgic encephalomyelitis works

Abstract:

A perspective on the various definitions of myalgic encephalomyelitis and the process of discovering its aetiology is presented. The importance of clinical guidelines is emphasised to encourage clinicians to provide clear descriptions of their individual patients required for proper clinical activity; diagnosis, estimation of severity of effect, prognosis, treatment and rehabilitation. This individual knowledge is informed by general and (hopefully) publicly confirmed knowledge resulting from scientific research during the second-person interaction which lies at the core of the clinical encounter. Both types of knowledge are essential.

 

Source: Carruthers BM. Definitions and aetiology of myalgic encephalomyelitis: how the Canadian consensus clinical definition of myalgic encephalomyelitis works. J Clin Pathol. 2007 Feb;60(2):117-9. Epub 2006 Aug 25. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860613/ (Full article)

 

Myalgic encephalopathy–an inexact report with doubtful conclusions

Norwegian Knowledge Centre for Health Services was recently commissioned to clarify the scientific basis for the diagnosis and treatment of Myalgic encephalopathy (ME). The report is unfortunately imprecise and conclusions questionable.

Myalgic encephalopathy (ICD-10: G 93.3) is a disease or a spectrum of diseases which are described in many clinical reports internationally. Patients have symptoms of multiple organ systems, often with widespread pain and neurocognitive disorders, and they have an abnormal response by physical or mental activity, with sometimes extreme fatigue and worsening of symptoms and long recovery time. The etiology is unclear.

You can read the rest of this comment here: http://tidsskriftet.no/2006/08/brev-til-redaktoren/myalgisk-encefalomyelopati-upresis-rapport-med-tvilsomme-konklusjoner

 

Source: Eriksen W. Myalgic encephalopathy–an inexact report with doubtful conclusions. Tidsskr Nor Laegeforen. 2006 Aug 24;126(16):2144; author reply 2144-5. [Article in Norwegian] http://tidsskriftet.no/2006/08/brev-til-redaktoren/myalgisk-encefalomyelopati-upresis-rapport-med-tvilsomme-konklusjoner (Full article)