Revised November 14, 2016 to include steps to evaluate for atypical ME as defined by ICC.

MEadvocacy.org understands there is a great deal of confusion about the various criteria for myalgic encephalomyelitis, so we created an easy to follow questionnaire to help patients see if they may fit the 2011 International Consensus Criteria.

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Do I fit the International Consensus Criteria?

Questionnaire for patients over age 18

Disclaimer: This questionnaire does not replace the full International Consensus Criteria (ICC) document or the primer. It is based on the symptoms of the criteria and should not be used as a substitute for medical advice from a licensed medical professional. This document is for informational purposes. Consult a physician experienced in diagnosing ME. It is important to evaluate for other diseases before assigning a diagnosis of ME (ICD code G93.3).

According to the ICC a six month waiting period is NOT required for diagnosis of ME. Removing the waiting period is very important so ME patients can be advised to get complete rest as soon as possible in order to get the best possibility of improved health.  

Must have Post Exertional Neuroimmune Exhaustion (PENE)

PENE is physical inability to produce sufficient energy on demand.

The following are signs you have PENE:

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.

2. Post-exertional symptom exacerbation: such as acute flu-like symptoms, pain and worsening of other symptoms

3. Post-exertional exhaustion: may occur immediately after activity or be delayed by hours or days

4. Recovery period is prolonged, usually taking 24 hours or longer.  A relapse can last days, weeks or longer

5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

Symptom severity must result in a significant reduction of pre-illness activity level.

The 2 day Cardio Pulmonary Exercise Test available at Workwell Foundation (California) and Ithaca College (New York) is a 2 day CPET specifically designed to look for inability to repeat physical activity two days in a row.

If you aren’t sure if you have PENE, watching the following video may help you answer the question.

Video by Mark VanNess explaining an abnormal physiological response to exertion and the 2 day test:  https://www.youtube.com/watch?v=FXN6f53ba6k&app=desktop

Do you have PENE:  ___ Yes   ___No

If YES, go to next section.

If NO, stop quiz. You do not fit this criteria.

SECTION 2

Check off the ones that apply to you.

Neurocognitive Impairments

• ____  Difficulty processing information: slowed thought, impaired concentration such as confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia

• ____  Short-term memory loss: difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory

Pain

• ____  Headaches: such as 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 non inflammatory in nature and often migrates. In other words have generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain.

Definitions:

Hyperalgesia: increased sensitivity to pain

Myofascial: pertaining to a muscle and its sheath of connective tissue, or fascia

 Sleep Disturbance

• ____  Disturbed sleep patterns: such as insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, waking much earlier than before illness onset, vivid dreams/nightmares

• ____  Unrefreshed sleep: awaken feeling exhausted regardless of duration of sleep, day-time sleepiness

 Neurosensory, perceptual and motor disturbances

• ____  Neurosensory and perception:  inability to focus vision, sensitivity to light, noise, vibration, odor, taste and touch; impaired depth perception

• ____  Motor:  muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia

Definitions:

Ataxia:  Inability to coordinate muscle activity

Did you check at least one box in at least three categories in section 2?  __ Yes   __ No

If YES, go to next section.

If NO, continue for possible atypical ME criteria.

SECTION 3

Check off the areas that apply to you.

• ____  Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion. Such as sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender

• ____  Susceptibility to viral infections with prolonged recovery periods

• ____  Gastro-intestinal tract: such as nausea, abdominal pain, bloating, irritable bowel syndrome

• ____  Genitourinary: such as urinary urgency or frequency, excessive urination at night

• ____  Sensitivities to food, medications, odors or chemicals

Did you check at least three boxes in section 3?     ___ Yes  ___ No

If YES, go to next question.

If NO, continue for possible atypical ME criteria.

SECTION 4

Check off the ones that apply to you:

• ____  Cardiovascular - inability to tolerate an upright position - orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness

• ____  Respiratory - air hunger, laboured breathing, fatigue of chest wall muscles

• ____  Loss of thermostatic stability - subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities

• ____  Intolerance of extremes of temperature

Did you check at least one box in section 4?     ___Yes  ___ No

If NO, continue for possible atypical ME criteria.

If you have answered YES to each section, you fit the

International Consensus Criteria for Myalgic Encephalomyelitis.

If you answered no in section 2, 3, or 4 you may have atypical ME.

Myalgic encephalomyelitis International Consensus Criteria Authors: B. M. Carruthers, M. I. van de Sande, K. L. De Meirleir, N. G. Klimas, G. Broderick, T. Mitchell, D. Staines, A. C. P. Powles, N. Speight, R. Vallings, L. Bateman, B. Baumgarten-Austrheim, D. S. Bell, N. Carlo-Stella, J. Chia, A. Darragh, D. Jo, D. Lewis, A. R. Light, S. Marshall-Gradisnik, I. Mena, J. A. Mikovits, K. Miwa, M. Murovska, M. L. Pall, S. Stevens

Note: pediatric symptoms vary - See source at this link for pediatric: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full  

Link to the International Consensus Primer for Physicians which lists tests and treatment options for those who fit the ICC:  http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf

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PRINTABLE VERSION:

Here is a link to the Questionnaire if you would prefer to print it out.

https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/22/attachments/original/1478717636/ICC_Questionnaire_Nov_2016.pdf?1478717636

WHAT CAN YOU DO?

LEARN MORE:  

To better understand the various criteria used for ME. and CFS, please read our blog, Analysis of CFSAC August 2015 Recommendations for the IOM Criteria, from Dec 2015: http://www.meadvocacy.org/analysis_of_cfsac_august_2015_recommendations_for_the_iom_criteria

EDUCATE OTHERS:

Help us educate patients so they can become their own advocate by sharing/liking this blog on social media platforms; liking/and or sharing the MEadvocacy facebook page posts; and liking/retweeting MEadvocacy tweets.