Myalgic Encephalomyelitis

1 About ME/CFS

1.1 What is ME/CFS?

1.2 From Chronic Fatigue Syndrome to Myalgic Encephalomyelitis. Why many use the term ME/CFS.

1.3 Onset and Prognosis

1.4 Severity

1.5 Comorbid conditions

1.6 ME in Children
2 Diagnostic Criteria
3 Care & Treatment

3.1 Introduction

3.2 Medical Help

3.3 Disability Help

3.4 Patient Safety re exercise therapy and rehabilitation

3.5 Self-Management

3.6 Support
4 Socioeconomic Impact
5 Research is Ongoing
6 Similarities with long COVID
7 Useful links & Resources

1 About ME

1.1 What is ME/CFS?

Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. This picture will change as research into the condition continues to accelerate driven both by improving research tools and the prevalence of Long Covid.

Fully half of Long Covid patients meet the diagnositc criteria for ME.

1.2 From Chronic Fatigue Syndrome to Myalgic Encephalomyelitis. Why many use the term ME/CFS.

Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are the same condition. For a variety of reasons both the research community and patient groups are pressing for replacement of CFS with ME. During this transition the use of ME/CFS is a common compromise.

1.3 Onset and Prognosis

Most people end up with ME after an infection but this is not universally true.

Some patients return to full function but we don’t hear about them. Others never fully recover, and some become extremely ill. In between there are those whose course of disease is episodic. These people experience both remission and relapses.

1.4 Severity

ME ranges from mild to severe. Severity can fluctuate during the day, from day to day, and throughout the illness.

Some people can continue to work whereas it is estimated that 25% end up housebound or bedbound. This latter group is somewhat invisible because they cannot visit their doctor or a clinic.

1.5 Co-morbid conditions

There are many conditions that are co-morbid (can co-exist) with ME and, where present, usually mean an increased symptom burden. It is important to recognize these co-morbid conditions.

Fibromyalgia, a common co-morbid diagnosis is an example as it can increase the muscle pain experienced. Identifying and appropriately treating co-morbidities can improve quality of life.

1.6 ME in children

ME does occur in young children but is more common in adolescents. Because there has been very little research specific to children, we know less about it in that population than in the adult population.

2 Diagnostic Criteria

2.1 Common Symptoms

Fatigue, PEM, Unrefreshing Sleep, Cognitive impairment, Orthostatic Intolerance

2.2 Case Definitions

Lists of Symptoms used to define/diagnose ME/CFS

2.2.1 Case Definitions Most Commonly Used for Diagnosis

The 2015 Institute of Medicine (IOM) Diagnostic Criteria for ME/CFS is used by the CEP and the CDC so if you live in Ontario these are the criteria that will apply to you.