Establishing a consensus on ME/CFS exclusionary illnesses

ABSTRACT

Introduction

The diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is generally reached based on meeting the criteria of a case definition and eliminating other conditions that could be causing the patient’s symptoms. Investigators in the ME/CFS field are currently confronted with 139 medical exclusionary conditions listed among the various ME/CFS case definitions. There is a need to standardize the illnesses/diagnoses that should be excluded.

Methods

Exclusionary conditions were listed for several prominent ME/CFS case definitions. From this list, symptoms were also identified as exclusionary by several physicians with experience in diagnosing ME/CFS. Input was also solicited from representatives from the patient community for a consensus list of exclusionary comorbid conditions.

Results

Once overlapping illnesses were eliminated, a consensus was reached on a briefer set of exclusionary conditions. The final set of exclusionary conditions is divided into 14 categories with 53 specific examples.

Conclusions

It is important for ME/CFS researchers to select uniform medical conditions to exclude from their studies so that samples across different studies are consistent and generate generalizable ME/CFS findings. This list can be applied to ME/CFS case definitions in order to enhance the reproducibility of identifying patients with ME/CFS for research studies.

KEYWORDS:

• Exclusionary
• comorbidity
• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
• case definitions
• criterion variance

Acknowledgements

The authors thank Mary Dimmock and Oved Amitay for their helpful feedback on this article.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

Research reported in this publication was supported by the National Institute of Neurological Disorders and Stroke and the National Institute of Allergy and Infectious Diseases of the National Institutes of Health [Award Numbers R01NS111105 and R01AI10578]. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Notes on contributors

Leonard A. Jason

Leonard Jason, PhD, is a professor of psychology and director of the Center for Community Research at DePaul University. He is also chairperson of the Diagnostics Testing and Test Algorithms subcommittee of the NIH RECOVER Commonalities with Other Post Viral Syndromes Task Force, and serves as ME/CFS expert for the ILLInet HUB in RECOVER.

Suvetha Ravichandran

Suvetha Ravichandran is a research assistant at the DePaul Center for Community Research where she is developing a consensus statement on ME/CFS comorbid conditions.

Ben Z. Katz

Ben Z. Katz, MD, is a pediatric infectious disease physician at the Ann & Robert H. Lurie Children's Hospital of Chicago, and his main research interests are the pathophysiology of viral infections in immunocompromised versus normal hosts and post-viral fatigue.

Benjamin H. Natelson

Benjamin Natelson, MD, is a neurologist at Mount Sinai in New York. He has been studying and caring for patients with ME/CFS for many years, and is now adding care of those with Long Covid to his practice.

Hector Fabio Bonilla

Hector Fabio Bonilla, MD, is an infectious disease doctor and researcher at Stanford University, specializing in HIV/AIDS, Hepatitis C virus (HCV), and ME/CFS.