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.

The cover of the IC Primer, entitled "International Consensus Primer for Medical Practitioners". A Brain and spinal cord covers the left side, while Myalgic Encephalomyelitis is printed in the upper right corner.
Do I have ME?
Graphic in English describing the symptoms of Myalgic Encephalomyelitis. A line-figure of a body is in the center, with graphics to its sides depicting: brain issues, pain, a thermometer. a bent knee, a stretched muscle, a heart, a pair of lungs, a stomach and intestines, and a pair of kidneys.

Click HERE for a Spanish translation of this image.

Post-Exertional Neuroimmune Exhaustion (P.E.N.E.) information HERE.

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:

 
¹The ICP is an effective tool to help medical practitioners diagnose and manage ME. It also offers thorough screening guidance to help identify other treatable conditions. The ICP authors have more than 500 years combined experience with ME.
 
²The ICC is used to diagnose because there is currently no standard laboratory test to diagnose ME. The criteria is a consensus by world leading experts on ME. 
Photo of two people looking down, showing their shoes on a sidewalk with the words "PASSION LED US HERE" written on the sidewalk.

Faces of ME

A rectangular collage of 48 faces of ME International members who have myalgic encephalomyelitis.

From our members who face the daily challenges living with ME.

ME by the numbers:

The number 1 in black text, inside of a teal green dot.

An estimated 25% are severe, or very severe, housebound or bedbound, with some requiring tube feeding.

The number 2 in black text, inside of a teal green dot.

Impacts women, men and children of all ages.

The number 3 in black text, inside of a teal green dot.

Symptom severity and presentation may fluctuate from day to day or hour to hour.

The number 4 in black text, inside of a teal green dot.

Even Mild sufferers have significantly reduced activity level.

The number 5 in black text, inside of a teal green dot.

Post-exertional neuroimmune exhaustion (P.E.N.E.) is a defining factor in diagnosis.  It causes severe worsening of symptoms following any exertion.

The number 6 in black text, inside of a teal green dot.

ME is a physical disease similar to MS.  It is NOT a mental health condition.

The number 7 in black text, inside of a teal green dot.

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.

The number 8 in black text, inside of a teal green dot.

Activity outside our energy envelope can cause a permanent decline of function.

The number 9 in black text, inside of a teal green dot.

Many other conditions often present alongside ME and patients need to be thoroughly screened.

The number 10 in black text, inside of a teal green dot.

Patients generally die younger due to cancer, cardiac and immune dysfunction.

The number 11 in black text, inside of a teal green dot.

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. 

To find out more about our organization and our goals, visit our About MEI page and meet the Board of Directors. 

If you would like to become a volunteer and support the ME community, reach out to us on our “Connect” page. 

Our Approach

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.

ME Criteria

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.

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