Definition of Myalgic Encephalomyelitis
Myalgic encephalomyelitis (ME) is a debilitating chronic disease that presents with symptoms in multiple body systems. ME has been classified as a neurological disorder in the World Health Organisation’s International Classification of Diseases since 1969 (ICD 10 G93.3). 1
From Doctors with ME:
“ME patients are not just unusually neglected. Quality of life scores are shocking – worse than nearly all conditions encountered in primary and secondary care (with little difference in emotional or mental health, despite repeated confirmation of ME as a greater physical disability). They are unusually vulnerable, often with little physical capacity to address issues that affect them, implying the need for additional care in clinical frontline services and administrative contexts.
Quantified quality of life comparators vs ME in the above statement include HIV/AIDS, heart disease, congestive heart failure, cancer, stroke, end stage renal failure, lung disease, type 2 diabetes, osteoarthritis, multiple sclerosis, epilepsy, eosinophilic gastroenteritis, cystic fibrosis, sciatica and other maladies.” 2
ME benefits from straightforward diagnostic criteria that are clear. Common patterns are often evident e.g. post-viral onset. Future research may potentially split these into cohorts.
The belief that ME has no diagnostic marker and is a diagnosis of exclusion (similar to Parkinsons) is a misrepresentation. Exclusion is critical to avoid misdiagnosis of mental health or other physical diseases as ME, but systemic exertion intolerance characterised by Post Exertional Malaise (PEM) / Post Exertional Symptom Exacerbation (PESE) / Post Exertional Neuroimmune Exhaustion (PENE) is a cardinal symptom. Abnormalities are observable in controlled research contexts with the two day cardio-pulmonary exercise tests (an inappropriate risk if only for diagnosis) and in metabolic and other findings.
The most appropriate diagnostic criteria are the Institute of Medicine Criteria, the International Consensus Criteria and the Canadian Consensus Criteria. The field has previously been undermined by lax criteria that scaled misdiagnoses and contributed to ongoing stigma and discrimination. The Oxford, Fukuda and NICE 2007 criteria should not be used, and research studies using those criteria do not apply to ME 6
The cruel thing about myalgic encephalomyelitis is that there currently is no standard treatment. However, researchers are working on solutions and it seems to be more promising than it has been for decades. Also, the COVID-19 pandemic has created much more awareness about post viral illnesses which could benefit ME-patients greatly.
For many years, patients were put on graded exercise therapy and cognitive behavioural therapy programs. These two approaches were heavily promoted by influential people, often psychiatrists. They have been able to push these ideas although they are not based on science. These therapies have now been proven to be unhelpful to patients, as seen in the 2021 NICE guidelines for M.E. 7
The fact that there is no standard treatment has – unfortunately – been exploited by snake oil salesmen for decades.