How Do I Know if I Have ME?

Art: Robin Mead

What’s ME?

The International Consensus Criteria defines Myalgic Encephalomyelitis as “an acquired neurological disease with complex global dysfunctions.”

Myalgic Encephalomyelitis is sometimes referred to as “Chronic Fatigue Syndrome.” However, this is gradually yet persistently changing, as many patient advocates and medical specialists find that this term to be inadequate and inaccurate. Some people use the term ME/CFS.

Do I Have ME?

Many of our readers report that they had a “lightbulb moment” when they first read the The International Consensus Criteria for Myalgic Encephalomyelitis. This report was prepared by a panel medical clinicians and research scientists from around the world. Below you can find excerpts about assessment and diagnosis, plus links to the full text.

An increasing number of people with long COVID are now being diagnosed with ME.

What’s “Post-Exertional Neuroimmune Exhaustion”?

There are four categories listed below. The first is called “Post-Exertional Neuroimmune Exhaustion”

This is a confusing-sounding term which basically means: Your symptoms get worse after you do things.

You may start to feel worse immediately afterwards. Or several days later. You may feel worse for a short time. Or a long time. Or indefinitely.

Some people experience worsened symptoms after heavy activity (such as running, swimming or exercising) and some people experience symptoms after light activity  (such as walking to the bathroom) or mental activity (such as reading or strong emotions).

---

International Consensus Criteria – Assessment and Diagnosis

---

I

Post-Exertional Neuroimmune Exhaustion

Compulsory

This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. (Translation: “My body does not produce enough energy.”)

Characteristics are:

1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. (Translation: “After I do physical things, I feel worse” or “After I read or write or do other mental tasks, I feel worse”)

2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms (Translation: “After I do things, I feel like I have the flu, or feel pain, or feel worse in other ways”)

3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days. (Translation: “I may not feel worse right away. I may start to feel worse in a few hours, or the next day, or the day after that.”)

4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer. (Translation: “I can feel worse for a day, or for few days, or for a few weeks, or longer”)

5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level. (Translation: “I can no longer do the things I used to be able to do.”)

Notes: “Cognitive fatigability in response to exertion.” (Translation: “After I do things, I may feel worse physically or mentally. I may have problems with memory, focus or concentration.”)

---

II

Immune, Gastro-intestinal

& Genitourinary Impairments

At least one symptom from three of the following five categories

1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion. e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation

2. Susceptibility to viral infections with prolonged recovery periods

3. Gastro-intestinal tract: e.g. nausea, abdominal pain, bloating, irritable bowel syndrome (IBS)

4. Genitourinary: e.g. urinary urgency or frequency, nocturia

5. Sensitivities to food, medications, odors or chemicals

---

III

Neurological Impairments

At least one symptom from three of the following four categories

1. Neurocognitive Impairments

• Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia
• Short-term memory loss: e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory

2. Pain

• Headaches: e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches
• Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is noninflammatory in nature and often migrates. e.g. generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain

3. Sleep Disturbance

• Disturbed sleep patterns: e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares
• Unrefreshed sleep: e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness

4. Neurosensory, Perceptual and Motor Disturbances

• Neurosensory and perceptual: e.g. inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception
• Motor: e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia

---

IV

Energy Metabolism/Ion Transportation Impairments

At least one symptom

1. Cardiovascular: e.g. inability to tolerate an upright position – orthostatic intolerance (OI), neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), palpitations with or without cardiac arrhythmias, light-headedness/dizziness (Translation: “When I stand up or sit up, I get symptoms and/or my heart rate increases and/or my blood pressure drops.”)

2. Respiratory: e.g. air hunger, laboured breathing, fatigue of chest wall muscles

3. Loss of thermostatic stability: e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities

4. Intolerance of extremes of temperature

---

Additional Information in ICC Primer

The ICC Primer for Medical Practitioners includes additional information on identifying and treating ME, along with listings of laboratory tests that are sometimes used for ME patients. A diagnosis of ME is often made after excluding other conditions.

On a case-by-case basis, other conditions that might be ruled out: “Infectious disorders: TB, AIDS, Lyme, chronic hepatitis, endocrine gland infections; Neurological: MS, myasthenia gravis, B12; Autoimmune disorders: polymyositis & polymyalgia rheumatica, rheumatoid arthritis; Endocrine: Addison’s, hypo & hyper thyroidism, Cushing’s Syndrome; cancers; anemias: iron deficiency, B12 [megaloblastic]; diabetes mellitus; poisons.”

Other conditions to be excluded: “Primary psychiatric disorders, somatoform disorder, substance abuse & pediatric ‘primary’ school phobia.”

It is not required to completely rule out all conditions. Some people have ME plus other conditions (This is called “co-occurring” disorders).

International Consensus Criteria

• Printable version of this page
• MEadvocacy ICC Questionnaire
• International Consensus Criteria Full Text
• ICC Primer for Medical Practitioners
• How Colleen Used the ICC to Finally Get a Diagnosis that Fit

Tools for Troublemakers

• How To Save Spoons: A Self-Advocacy Guide for ME/CFS
• How to Get Diagnosed with ME or Chronic Fatigue Syndrome
• Potential Dangers of Exercise and Activity for People with ME
• How to Practice Pacing
• Great Facebook Groups for ME and Related Conditions

Thanks for Reading

This page is part of the free online guide: The Sleepy Girl Guide to Social Security Disability. Please share this page with others by pressing one of these magic little buttons: