Myalgic Encephalomyelitis Biomarker Research
Biomarkers
There has been a narrative that Myalgic Encephalomyelitis is a diagnosis of exclusion. Repeatedly saying “there are no biomarkers” has been interpreted by too many doctors as ME not being a recognizable biological disease.
ME became known as a diagnosis of exclusion - rule out everything else. Too often patients were not given thorough screenings to actually rule out everything else. This led to a vast array of patients lumped into the mixed category of ME, ME/CFS and CFS.
In my opinion, ME as originally defined, should never have been a diagnosis of exclusion. There is a pattern of recognizable clinical signs that can differentiate this patient population from other diseases. See webform HERE from the Swiss Society for ME & CFS to screen for possible ME using the International Consensus Criteria.
Recently Rebekah Maksoud, Chandi Magawa, Natalie Eaton-Fitch, Kiran Thapaliya and Sonya Marshall-Gradisnik of National Centre for Neuroimmunology and Emerging Diseases (NCNED), Menzies Health Institute Queensland, Griffith University, Gold Coast, Australia published a paper that goes over some of the biomarkers that have been found so far. The paper, Biomarkers for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): a systematic review states:
“A total of 101 publications were included in this systematic review.
Potential biomarkers ranged from
genetic/epigenetic (19.8%),
immunological (29.7%),
metabolomics/mitochondrial/microbiome (14.85%),
endovascular/circulatory (17.82%),
neurological (7.92%),
ion channel (8.91%) and
physical dysfunction biomarkers (8.91%).
Most of the potential biomarkers reported were blood-based (79.2%). Use of lymphocytes as a model to investigate ME/CFS pathology was prominent among immune-based biomarkers.
Most biomarkers had secondary (43.56%) or tertiary (54.47%) selectivity, which is the ability for the biomarker to identify a disease-causing agent, and a moderate (59.40%) to complex (39.60%) ease-of-detection, including the requirement of specialised equipment.”
Tracking Biomarkers
Over the years I kept seeing research papers that indicated findings of possible biomarkers. I, along with other volunteers in my Facebook groups, started compiling a list of possible biomarkers. Over time this collection has become three separate lists.
ME-ICC: List of research based on the International Consensus Criteria.
ME/CFS-CCC: List of research based on the Canadian Consensus Criteria.
ME Possible Biomarkers: List of research for papers using unknown criteria or other criteria that may or may not apply to people with ME.
These ME-ICC and ME/CFS-CCC lists include published papers we have come across so far. Within those lists we have notated “Biomarker” in the right hand column for those studies that may point to possible biomarkers. We continue to update these lists as more studies are brought to our attention. (The same website link will always go to the latest version.)
What I have learned from tracking these over the years is that we know a LOT more about ME than is often presented in the “no biomarker” narrative.
I think when more advocates and patients understand how much we already know about ME, we will be better positioned to advocate for research money to finalize biomarkers. There may not be “one” biomarker, but using these findings in combination seems to be a clear road to a diagnosis of inclusion instead of exclusion.
The ME IC Primer states the following about biomarkers & tests:
Cardiopulmonary exercise test-retest, recorded by use of an electrocardiogram (ECG) can confirm many symptoms: PENE [post-exertional neuroimmune exhaustion], decreased cerebral oxygen, prolonged recovery period, loss of capacity to recover from acidosis.
There is significant peak oxygen consumption VO2 or VO2 at AT - decline of 8% or greater on test 2 indicates metabolic dysfunction.
Brain scans support cognitive impairments. Refer to pathophysiology and laboratory assessment for further objective impairment markers.”
Note: The cardiopulmonary exercise test-retest is a post-exertional neuroimmune exhaustion inducing test. Alternative options are desperately needed to avoid harming patients.
What can be done?
Support researchers who are pursuing biomarkers using patients who fit the International Consensus Criteria (ICC).
(See names of researchers on the ME-ICC list of research)
Advocate on national and international levels about the importance of using the ME-ICC in all ME research.
Patients can ask their doctor to use the ME International Consensus Primer to confirm a diagnosis of ME so when researchers are looking for subjects, patients have already been pre-screened.
For more information about the ME-ICC see this Table of Contents.
We never know what science will find. I know we will have answers someday… how fast we get there depends on the funding provided for quality research.
Colleen