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.”
“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
- Fulfills the ME International Consensus Criteria (ME ICC). Also see our Understanding Criteria page.
- Cohort screened for often overlooked diagnosis, like multiple sclerosis. See our Conditions to Rule Out info sheet.
- Disease onset (sudden or gradual)
- Length of time ill (before or after 5 years is an option)
- Disease severity
- Pre- and Post-menopause
For more information see our Cohort Stratification page.
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.”