MAY 2023 STATUS REPORT

Another May 12, International Day of Awareness, is here.  For many of us, this marks decades of living with myalgic encephalomyelitis (ME). ME advocates have been raising awareness about the disease as well as the uphill fight against Health and Human Services (HHS) who have attempted to disappear ME for decades. 

In Amy McLaughlin’s guest blog The Forever Flu, Amy describes an experience many of us can relate to with our own journey of contracting and living with myalgic encephalomyelitis.  

The history of May 12 can be found in last year’s blog May12.org 10 Year Anniversary and our 2018 blog The 26th ME Awareness Day: Still Fighting Unscientific Claims.

While MEadvocacy has been mostly inactive, our volunteers have continued to advocate in various ways.  Colleen Steckel, wrote about how ICD codes are being used to bury ME. 

To follow news in the ME community we recommend ME Global Chronicle. Their most recent index to articles can be found HERE.

ADVOCATING FOR ME

The publication last year of “The Why - The Historic ME/CFS Call to Arms” by Hillary Johnson has been educating the more recently ill to the historical misconduct by the CDC toward people with ME.  “Journalist Hillary Johnson’s The Why: The Historic ME/CFS Call to Arms packs the story of the CDC’s misdeeds and anti-science agenda regarding Myalgic Encephalomyelitis (ME) into 92 jaw-dropping pages. She describes how the agency botched a critical investigation of a large outbreak in 1985 and, unwilling to change course, proceeded to rename the disease, eagerly characterizing sufferers as hysterics and depressives.”

MEadvocacy has been writing about how the Health and Human Services (HHS), the National Institute of Health (NIH) and the Centers for Disease Control (CDC) have been mishandling the US government's approach to ME since 2014.  Unfortunately, much of what we have shared over the years continues to be relevant today.  We invite you to revisit our blogs to learn more.

RESEARCH

There have been some significant developments in the research of ME we wanted to share.

We are glad to see more researchers are using the International Consensus Criteria (ME-ICC) to select patients.  This has led to findings that show the importance of stratifying patients and underscores the value of using the ME-ICC for quality research. 

Connectivity between Salience and Default Mode Networks and subcortical nodes distinguishes between two classes of ME/CFS published originally in Dec 2022 stated:  “Physicians are now instructed that the recent, more stringent (ICC) questionnaire criteria define a disease that is distinct from those remaining subjects defined by the previous Fukuda criteria. This work reports the remarkable finding that functional magnetic resonance imaging connectivity can differentiate between these two classes of ME/CFS. This is the first objective medical evidence that the questionnaire-based diagnosis does indeed differentiate between two different disease states. This facilitates a clearer understanding of ME/CFS and can better direct research and therapy development.”

Symptom-based clusters in people with ME/CFS: an illustration of clinical variety in a cross-sectional cohort published in February 2023 stated. “Classification of ME/CFS patients according to severity and symptom patterns might be useful to develop tailored treatment options.”  “Almost 90% of the participants fulfilled the Fukuda case definition, compared to 80%, 59% and 39% fulfilling the IOM, CCC and ME-ICC case definitions, respectively.”

Volumetric differences in hippocampal subfields and associations with clinical measures in myalgic encephalomyelitis/chronic fatigue syndrome published March 2022 states:  “Our study found left hippocampal subiculum, presubiculum, and fimbria volumes were significantly larger in ME/CFSICC patients compared with HC, but not for ME/CFSFukuda patients. Furthermore, this study demonstrated that multiple hippocampal subfield volumes are different in ME/CFSICC patients meeting the strict ICC case definition, and they exhibited strong associations with clinical measures. Therefore, strict case definitions are essential in the investigation of the pathophysiology of ME/CFS. Subiculum and parasubiculum volumes were larger in ME/CFS in contrast to reductions seen in other neurological disorders.”

Note: the term ME/CFS is used instead of ME in some papers.

To see research using the International Consensus Criteria (ICC) see HERE and the Canadian Consensus Criteria (CCC) see HERE.

ME ACCOUNTS TO FOLLOW

MEadvocacy on Facebook 

MEadvocacy on Twitter 

May12.org Resources

May12.org on Twitter

ME Global Chronicle - Facebook

ME Global Chronicle - Website

ME-ICC & Other Marginalized Diseases - Public Facebook Group

ME-ICC Info - Private Facebook Group (for those who fit the ME-ICC diagnostic criteria)

Colleen Steckel on Twitter and on Substack

Tracey Ann-Tempel Smith on Twitter

Eileen Holderman on Twitter

Hillary Johnson on Twitter