What is ME and do I have it?
(from page 1 of the IC Primer)
“Myalgic Encephalomyelitis (ME): a complex, acquired multi-systemic disease”
“Pathophysiology: Profound dysfunction/dysregulation of the neurological control system results in faulty communication and interaction between the CNS and major body systems, notably the immune and endocrine systems, dysfunction of cellular energy metabolism and ion transport, and cardiac impairments.”
“Cardinal symptom: a pathological low threshold of fatigability that is characterized by an inability to produce sufficient energy on demand. There are measurable, objective, adverse responses to normal exertion, resulting in exhaustion, extreme weakness, exacerbation of symptoms, and a prolonged recovery period.”
“Note: Myalgic encephalomyelitis (ME) is the name recommended for those meeting the ICC.”
“Classification: Myalgic encephalomyelitis has been classified as a neurological disease by the WHO since 1969. WHO stipulates that the same condition cannot be classified to more than one rubric because, by definition, individual categories and subcategories must remain mutually exclusive. Thus, it is essential that patients meeting the ICC for ME are removed from overly inclusive groups.”
“Myalgic encephalomyelitis: neurological disease WHO ICD G93.3” (Now G93.32)
Do I Have ME?
The ME IC Primer states:
“Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.“
Steps to Getting Diagnosed
1. Use the ME-ICC Questionnaire(s).
The Swiss Society for ME & CFS offers a web form questionnaire to enable you to determine whether the diagnosis of ME (Myalgic Encephalomyelitis) according to the International Consensus Criteria (ICC) may be applicable to you. Upon completion of the form there will be a printout you can give to your doctor.
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Also, there is an “atypical” ME diagnosis for those who don’t fully meet the criteria. (See info at the bottom of the MEadvocacy.org questionnaire.) This is useful for clinicians but not recommended to be used for research criteria. NOTE: If you have post-exertional neuroimmune exhaustion but do not fulfill all the requirements to fit the ICC, you may have atypical ME. Atypical ME is treated the same as ME.
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2. Work with a medical professional using the ME IC Primer to confirm the diagnosis. ME IC Primer (hyperlinks):
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A PERSONALIZED CLINICAL ASSESSMENT & DIAGNOSTIC WORKSHEET FOR ME begins on page 10 and includes how to confirm issues recognized in ME and testing recommendations to rule out other diseases.
3. Part of the process of confirming an ME diagnosis is to rule out other diseases. Too often patients discover after getting an ME (or ME/CFS or CFS) label that a treatable illness had been overlooked. Our Conditions to Rule Out handout has useful patient information regarding how to help diagnose ME Some conditions may occur with ME so treatment of those conditions may not fully resolve symptoms.