A woman in a lab coat, with her back to the viewer, standing in a laboratory.

How To Research ME

Researching myalgic encephalomyelitis

From the ME International Consensus Primer (pg iv)

Research on ME:

“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.”

Research confirmation:

“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. Focus on treatment efficacy: With enhanced understanding of biopathological mechanisms, biomarkers and other components of pathophysiology specific to ME, more focus and research emphasis can target expanding and augmenting treatment efficacy.”

List of possible biomarkers – stratification needed to confirm results.

How To Select Cohorts

Research stratification:

For more information see our Kohortestratificering side.

Because pediatric autonomic disorders are comorbid with ME, this data dictionary of 589 terms, compiled by 25 authors may be helpful.  “‘At a 2017 meeting of the Pediatric Section of the American Autonomic Society, it was determined that an autonomic data dictionary comprising aspects of evaluation and management of pediatric patients with autonomic disorders would be an important resource for multiple stakeholders.”

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