It is estimated that chronic fatigue syndrome - CFS (which also includes undiagnosed ME patients) strikes about 1.7 to 3.38 million American men, women and children; 580,000 Canadians; and about 17 million worldwide. Estimates indicate ME is around 1 million in the USA.
If you have been diagnosed with chronic fatigue syndrome, fibromyalgia, chronic Lyme or other immune dysfunction diseases, it is important to be evaluated for myalgic encephalomyelitis. Patients diagnosed with CFS are currently being relabeled with ME/CFS. Please understand there is no diagnostic code for ME/CFS. Doctors in the US must choose between the ME code G93.3 and CFS R53. 82. These diseases are tracked as separate diseases per the USA version of the World Health Organization’s (WHO) ICD.
Chronic fatigue syndrome is actually an artificial construct and not a distinct disease. During the 1980s, several USA outbreaks provoked an investigation by USA’s Centers for Disease Control and Prevention (CDC). Instead of officially recognizing these outbreaks as the distinct disease ME which had appeared in dozens of worldwide outbreaks, CDC pressed researchers and clinicians to create a new name and research/diagnostic criteria.
CFS criteria was then re-manipulated in the early 1990s by world government health agencies to represent a heterogeneous population of patients that share a similar group of symptoms with the vague symptom of fatigue as its hallmark. Poor criteria and misrepresentation of the disease led to psychology researchers taking control of the majority of the meager research funding to apply their belief of psychosomatic causes for the fatigue syndrome.
Due to the minimizing and inaccurate re-framing of the worldwide outbreaks of ME, the disease became falsely recognized as a false illness belief that manifests in the physical symptom of fatigue. This resulted in misdiagnosis of many individuals that had treatable conditions as well as dissolved away the differences between depression caused fatigue and other fatigue diseases - all erroneously melting into myalgic encephalomyelitis.
It took decades of USA advocates teamed with other global myalgic encephalomyelitis advocates to push against worldwide government institutional bias that prevented funding for significant biomedical research. By utilizing patient driven funding campaigns and occasional meager governmental research funding, over 9000 research papers have uncovered many clues to the biomedical pathways and causes for CFS as well as ME. Results are muddied due to the unreliable CFS criteria that were created.
The global health governments’ refused to adopt myalgic encephalomyelitis criteria that were created by ME disease experts, and continued to redefine CFS with overly broad criteria. In 2015, the USA Institute of Medicine [IOM, now known as the National Academy of Medicine (NAM)] relabeled a new CFS criteria with the term ME/CFS (May12.org uses the term ME/CFS-SEID to refer to this criteria) thus confounding the criteria and leading the patients into thinking that ME was just another name for CFS without given the option of being properly diagnosed for ME.
Disease Names:
Recognizing Disease Labels
There have been many names given to the different patient populations involved in the history of ME.
To improve clarity, May12.org will use labels that associate names with their criteria.
Red = Fatigue narrative
Blue = Immunological/neurological disease
Purple = Combo of fatigue narrative and immunological/neurological disease
- ME-Ramsay (Ramsay case description - 1981) Link
- CFS-Holmes (Original CFS description - 1988) Link
- CFS-Oxford (UK criteria - 1991) Link
- CFS-Fukuda (Fukuda - 1994) Link
- CFS-Reeves (Empirical - 2005) Link
- ME/CFS-CCC (Canadian Consensus Criteria - 2003) Link
- ME-Hyde (Dr. Byron Hyde - enteroviruses - 2007/updated 2016) Link
- ME-ICC (International Consensus Criteria - 2011) Link
- ME/CFS-SEID (Systemic Exertion Intolerance Disease - Beyond ME/CFS IOM Report - 2015) Link
Shared Disease Pathways:
Patients may have ME, fibromyalgia, undiagnosed Lyme disease (including chronic or late stage), exposure to those with Gulf War Illness, mold/biotoxin Illness, post-sepsis syndrome, and/or other undiagnosed/untreated conditions. Please see May12.org Resources tabs for ME and Lyme for further information about diagnosis.
One of the initial patients in the Lake Tahoe, Nevada epidemic discovered he has mold/biotoxin illness. This is the outbreak that instigated the formation of CFS terminology. Over the years, other patients have identified with mold illness. Please see May12.org Resources tab OTHER for more information regarding mold/biotoxin illness, Gulf War Illness, and post-sepsis syndrome.
It is important to advocate for yourself and work with your doctor(s) on evaluating for disease. Most doctors have not been educated by the medical establishment on the knowledge that clinical experts have acquired on these diseases.
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