A recent study from Leonard A. Jason of the Center for Community Research at DePaul University in Chicago (USA) and Suvetha Ravichandran and Aiden Rathmann looked into whether there might be a consensus about research criteria for ME and ME/CFS case definitions.
The paper Can a consensus occur on a research case definition for ME/CFS? states:
“To determine if there might be a consensus among patients, healthcare workers, and researchers, a brief questionnaire was distributed to an international group of patients to assess key issues involving ME and ME/CFS case definitions.”
Results included the following:
“Considerable support occurred for the ME-ICC (Myalgic Encephalomyelitis-International Consensus Criteria) and the Canadian Consensus Criteria (CCC), whereas the Fukuda Criteria received the least support.”
I am only able to read the abstract as the rest of the paper is behind a paywall. So my comments are based on that information.
Importance of using the ICC for ME Research
The International Consensus Primer (ICP) for ME (based on the ICC from 2011) was written in 2012 by many of the same people who wrote the CCC in 2003. The ICP on pg ii explains how the ICC is based on the CCC. It states:
“The ICC advance the successful strategy of the Canadian Consensus Criteria (CCC) of grouping coordinated patterns of symptom clusters that identify areas of pathology.”
They go on to explain the usefulness of the ICC for researching myalgic encephalomyelitis:
“The logical way to advance science is to select a relatively homogeneous patient set that can be studied to identify biopathological mechanisms, biomarkers and disease process specific to that patient set, as well as comparing it to other patient sets.
It is counterproductive to use inconsistent and overly inclusive criteria to glean insight into the pathophysiology of ME if up to 90% of the research patient sets may not meet its criteria (Jason 2009).
Research on other fatiguing illnesses, such as cancer and multiple sclerosis (MS), is done on patients who have those diseases. There is a current, urgent need for ME research using patients who actually have ME.”
They clarify the importance of using ICC research for confirmation of previous studies:
“When research is applied to patients satisfying the ICC, previous findings based on broader criteria will be confirmed or refuted. Validation of ME being a differential diagnosis, as is multiple sclerosis (MS), or a subgroup of chronic fatigue syndrome, will then be verified.”
In clarifying the importance of patient selection they explain that those diagnosed with ME/CFS need to be screened using the ICC.
“Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC.”
NOTE: ME/CFS at the time of writing the ICC was referring to ME/CFS defined by the CCC. The current use of the label ME/CFS refers to the CDC’s definition based on the IOM/NAM report from 2015. As this is even broader than the CCC, it is important to make sure anyone with an ME/CFS diagnosis is screened using the ICC.
Research into patients who fit into multiple categories has led to inaccurate and confusing research results. I have ME, so I want to see research that applies to my situation. According to these experts, not everyone diagnosed using the ME/CFS criteria are appropriate to be used in ME research. To understand how ME/CFS has multiple meanings, see my article ME/CFS is an Umbrella Term. To read more about this study and thoughts on moving forward the field of ME forward, see this Consensus Criteria for Myalgic Encephalomyelitis Research article.
Colleen Steckel
View from the Trenches of Myalgic Encephalomyelitis
The ME Global Chronicle 