Welcome To MEI
Myalgic Encephalomyelitis International
What is ME?
Myalgic Encephalomyelitis (ME) is a severely debilitating disease affecting millions of people around the world.
It is characterized by immune, neurological and cardiac dysfunction with severe worsening of symptoms following any exertion.
ME is an inability to properly generate energy which prevents sufferers from working, studying, socializing or otherwise living a normal and functional life. ME can present itself with varying symptoms and fluctuate from mild to very severe.
Severe to very severe ME sufferers are profoundly affected. They can be completely bed-bound and require help with basic needs.
The International Consensus Primer (ICP) recommends using the term ME (myalgic encephalomyelitis).
The ICP states: Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the International Consensus Criteria (ICC) because a distinctive disease entity should have one name.
What We Do
On a global scale, ME International (MEI) aims to:
- Provide information to patients, medical providers, researchers and governments.
- Support ME patients, caregivers, family, friends, organizations, and advocates.
Our goal is to ensure all patients receive adequate care, screening and treatment using the methodology outlined within the:
- Myalgic Encephalomyelitis – Adult and Pediatric: International Consensus Primer for Medical Practitioners* (ICP)¹ which is based on;
- The Myalgic Encephalomyelitis: International Consensus Criteria (ICC)²
Faces of ME
From our members who face the daily challenges living with ME.
ME by the numbers:
An estimated 25% are severe, or very severe, housebound or bedbound, with some requiring tube feeding.
Impacts women, men and children of all ages.
Symptom severity and presentation may fluctuate from day to day or hour to hour.
Even Mild sufferers have significantly reduced activity level.
Post-exertional neuroimmune exhaustion (P.E.N.E.) is a defining factor in diagnosis. It causes severe worsening of symptoms following any exertion.
ME is a physical disease similar to MS. It is NOT a mental health condition.
ME patients have one of the lowest quality of life as compared to MS, stroke,
diabetes, renal failure, lung disease, heart failure, cancer and others.
Activity outside our energy envelope can cause a permanent decline of function.
Many other conditions often present alongside ME and patients need to be thoroughly screened.
Patients generally die younger due to cancer, cardiac and immune dysfunction.
Suicide is more prevalent due to an extremely poor quality of life.
Who We Are
Established in 2019, ME International is an all-volunteer organization dedicated to raise awareness and education for the ME community and medical institutions alike.
If you would like to become a volunteer and support the ME community, reach out to us on our “Connect” page.
Our position is that any patient experiencing post-exertional neuroimmune exhaustion symptoms should be screened for ME.
We think the ICC and the ICP are the best tools to review and manage ME. The ICP approach makes sure no patient is seen as too challenging to accurately assess.
Our aim is for anyone who has been given the label of ME, CFS, ME/CFS, CFS/ME, or Long Covid have the tools necessary to confirm diagnosis and get proper care.
To learn more about our position see our Position Paper.
In 2011 a panel of experts who had over 500 years of combined experience collaborated to create the International Consensus Criteria (ICC), whose precursor was the Canadian Consensus Criteria (CCC). The ICC in combination with the IC Primer closely aligns with the original patient group described by Dr. Ramsay.
For more information, Visit our Understanding Criteria page.