Case definitions and diagnostic criteria for Myalgic Encephalomyelitis and Chronic fatigue Syndrome: from clinical-consensus to evidence-based case definitions

Abstract:

The symptom spectrum of Myalgic Encephalomyelitis (ME) was first detailed in 1959 and later operationalised into a diagnostic protocol (Melvin Ramsey). In 1988 the Holmes case definition coined the term chronic fatigue syndrome (CFS). Fukuda’s Centers for Disease Control and Prevention criteria are very heterogeneous and comprise patients with milder symptoms than the Holmes case definition. The CDC Empirical Criteria for CFS lack sensitivity and/or specificity. Other CFS definitions, e.g. the Oxford criteria, delineate people with idiopathic fatigue. Some authors make the clinical CFS diagnosis when slightly increased self-rated fatigue scores are present. In 2011, Carruthers’ International Consensus Criteria attempted to restore the focus on selecting people who suffer from ME.

Cognitive bias in criteria construction, patient selection, data collection and interpretation has led to the current state of epistemological chaos with ME, CFS, CFS/ME and ME/CFS, and CF being used interchangeably. Moreover, none of the above mentioned classifications meet statistically based criteria for validation. Diagnostic criteria should be based on statistical methods rather than consensus declarations. Ongoing discussions about which case definition to employ miss the point that the criteria did not pass appropriate external validation.

In 2012, Maes et al. performed pattern recognition methods and concluded that CFS patients (according to Fukuda’s criteria) should be divided into those with CFS or ME, on the basis that people with ME display a worsening of their illness following increases in physical or cognitive activity. Both ME and CFS are complex disorders that share neuro-immune disturbances, which are more severe in ME than in CFS. This paper expands on that strategy and details a range of objective tests, which confirm that a person with ME or CFS has a neuro-immune disease.

By means of pattern recognition methods future research should refine the Maes’ case definitions for ME and CFS by including well-scaled symptoms, staging characteristics and neuro-immune biomarkers, including immune-inflammatory assays, bioenergetic markers and brain imaging.

 

Source: Morris G, Maes M. Case definitions and diagnostic criteria for Myalgic Encephalomyelitis and Chronic fatigue Syndrome: from clinical-consensus to evidence-based case definitions. Neuro Endocrinol Lett. 2013;34(3):185-99. https://www.ncbi.nlm.nih.gov/pubmed/23685416

 

Comment:

Ellen M Goudsmit

2014 Mar 01 2:10 p.m.
Dr. Melvin Ramsay began writing about the illness now known as ME after the outbreak in north London in 1955. I looked in his book (1988) for a paper written by him in 1959 and found none. The best known article from 1959 was written by the late Dr. Acheson, who gave ME its name in a leader in the Lancet (1956). Dr Ramsay offered a diagnostic protocol but not until the 1980s.

I agree with Morris and Maes that the core symptom of ME is an exacerbation of symptoms following minimal exertion (supported by Paul et al who referred to CFS but actually selected patients with ME, pers. comm.). It should also be noted that none of the existing criteria for ME and CFS have been found to have the required specificity and sensitivity. And that includes the 2011 version.
The abstract indicates a lack of attention to detail. This undermines the understanding of the issues and shows a lack of respect, not only for the researchers but also for the patients, 99% of whom would know how to spell the name of arguably one of the most knowledgeable experts in this field. This failure to check for accuracy is a major cause for confusion in the literature on ME and CFS. And what happened to peer review? Any peer would have noticed the problem with the first sentence.
People really interested in ME and CFS may like to purchase an excellent publication by Shepherd and Chaudhuri summarising the knowledge to date. It’s available from the ME Association in the UK. An authoritative and accurate review (2013).
Leading article. A new clinical entity? Lancet, 1956, 1, 789-790.
Paul, L et al. Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome. European Journal of Neurology, 1999, 6, 63-69.
Ramsay, AM. Myalgic encephalomyelitis and postviral fatigue states. Second Ed. Gower Medical Publ. 1988. now available from the MEA Association, UK.

 

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