The many definitions proposed for CFS over time indicate how difficult it has been for the research community to agree what this disorder is.
Success in the ME/CFS research field may be more a function of how good the definition is than anything else. A poor definition that inadvertently brings in other disease groups will result in inconsistent or mediocre study results and stagnation in the research field. A good, tight definition, on the other hand, should allow researchers to laser in on the cause/causes of ME/CFS, lead to positive study results and advance the field.
Researchers have been haggling over how to define this disorder since the term myalgic encephalomyelitis was coined over 60 years ago…..
An early name for ME/CFS in the UK and Europe, myalgic encephalomyelitis or ‘ME’ formed the basis for several early attempts to define the disorder. Several aspects of the early definition including the focus on ‘post-exertional malaise’ informed later conceptions of CFS. Starting in 2005 efforts to merge the older definition of ME and the conception of ‘CFS’ formed in the US., lead to the emergence of the term ‘ME/CFS’ which is in wide use today and has been adopted by the NIH.
- The Myalgic Encephalomyelitis Definitions Over Time Pt I: From Symptoms To SPECT Scans by Cort Johnson
- Ch,Ch, Ch, Changes….Myalgic Encephalomyelitis Now and Then by Cort Johnson
- Re-inventing ‘CFS’- the International Consensus Criteria for ME: the Marj Van de Sande Interview with Cort Johnson
The Fukuda (International) Definition (1994)
Produced by a CDC sponsored committee, the Fukuda definition was developed because of concerns that the first definition developed for ME/CFS, the Holmes definition, was, because of its requirement for eight symptoms, selecting ‘CFS patients’ with more psychiatric disorders. The Fukuda definition with its fewer symptom requirements (4 plus fatigue) has held sway over the ME/CFS research field for over two decades despite the fact that the authors readily acknowledged the definition’s limitations at the time of publication.
In its 2012 program announcement for ME/CFS the NIH, for the first time, allowed other research definitions in its grant applications. Only recently have other definitions begun to appear in research studies.
The Canadian Consensus Criteria for ME/CFS
Developed in Canada by physicians and researchers to provide a better description for doctors, the CCC emphasized post-exertional malaise (relapse after exertion) and cognitive problems. The definition won acclaim for its apt portrayal and description of CFS patients but has not (as of 2013) been used much in the research arena. Several non-profit foundations (CFI, CAA, WPI), are, however, using the definition in some of their studies.
Recently questions have been raised whether, by requiring more symptoms than other definitions, the CCC is inadvertently selecting patients with higher incidences of psychiatric disorders.
The Pediatric Definition of ME/CFS
Developed under the auspices of International Association of chronic fatigue syndrome/ ME (IACFS/ME), the Pediatric Definition describes how the disease appears in children and is very similar to the Canadian Consensus Definition
The Centers for Disease Control (CDC) created a controversial new definition of CFS. In this series of papers Cort takes the definition apart to see what’s in it, examine the controversy surrounding it and try to figure out what it holds for the future.
- Hitting A Moving Target I: Defining and Quantifying CFS the New Prevalence Estimate – Cort Johnson on the new prevalence estimates – an overview of the CDC’s efforts to define CFS, the controversy over the new definition and what it may hold for CFS.
- Hitting a Moving Target II: Defining and Quantifying CFS – Cort Johnson on Another Smoke Filled Room?, Testing the Definition – the Early Results, Increased Prevalence Rates – What Increased Prevalence Rates?, Metrosexual Problems in Georgia? and more.
- Cort Johnson Interviews Leonard Jason on the Empirical Definition and the increased prevalence estimates.
- Check out the Empirical Definition
The International Consensus Criteria for ME
- Re-inventing CFS: the International Consensus Criteria for ME – the Marje Van de Sande Interview – Marge talks about how the criteria came about, why it was created and the impact she hopes it will have.
- Are the Canadian Consensus and International Consensus Criteria Broken? Study Suggests Both May Select for More Psychiatric Patients- A DePaul University study suggests the ICC selects for more severely ill patients but also patients with more psychological disorders.
- To PEM or Not to PEM: That is the Question for the Case Definition – Leonard Jason discusses the need to include post-exertional malaise (PEM) in an ME/CFS definition and how to measure it.
- Finding the True Face of CFIDS – 2004 Prohealth Q&A with Leonard Jason on defining ME/CFS.
- Leonard Jason talks with David Tuller of the New York Times on ME/CFS (2008)
Dr. Leonard Jason’s group at DePaul University are in the midst of operationalizing ME/CFS symptoms with the idea of producing a clear and statistically validated definition. Thus far the DePaul team has published two studies suggesting both the CCC and ICC select for more functionally disabled patients than the Fukuda definition but also more patients with psychiatric disorders. At this point Jason suggests a shorter definition focusing on post-exertional malaise and cognitive symptoms may be the most appropriate for ME/CFS. Studies, however are ongoing…
When Definitions Obscure: A Neuroinflammatory View of Chronic Fatigue Syndrome Pt. IV – Marco suggests that the search for a ‘tighter’ definition could inadvertently limit the search for broad, underlying pathologies.