Myalgic Encephalomyelitis Research

Brief Update on research lists

As part of my advocacy efforts, I help maintain lists of research into myalgic encephalomyelitis (ME).

The two main lists are:

1.  ME-ICC research - patients in this research fit the International Consensus Criteria.  (May also use patients who fit other criteria)

2. ME/CFS-CCC research - patients in this research fit the Canadian Consensus Criteria. (May also use patients who fit other criteria)

These research lists are separated into categories similar to what is found in the ME International Consensus Primer. We hope this will help make it more clear how important it is to recognize the neurological, immunological and cardiac issues seen in ME.

Included is a category that shows the importance of stratifying patients. I hope all researchers understand the value of stratifying patients into criteria, gender, length of illness, onset type, etc.

These lists also notate if the research is a possible biomarker.  We are still working on making sure we have fully notated all possible biomarker research.

The right hand column also includes the last name of researchers, making it easier to see which researchers are using this most up to date criteria.  We are also beginning to add how many patients were used in the research.

A Few Important Facts about research into ME

The International Consensus Criteria, created in 2011, is the current research criteria for ME.  The ME/CFS-CFS research using the Canadian Consensus Criteria is worth tracking because the patient selection for that group is closely aligned with the ICC, but the CCC (2003) was not created to be a research criteria.  

It is important that any research using the CCC or other criteria is duplicated using patients who fit the ICC to ensure we have reliable information.

As stated in the ME ICP on 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.

We welcome feedback about research we may have missed (or miscategorized).  

Please share widely to help advocate and educate about the biological reality of ME.

Colleen