How Colleen Used the ICC to Finally Get a Diagnosis that Fit

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Elizabeth D’Angelo

~ Guest Post by Colleen Steckel

I have had chronic illness for 27 years. I was originally diagnosed with Chronic Fatigue Immune Dysfunction Syndrome. Over the years, doctors have given me various other diagnoses – including Fibromyalgia and Postural Tachycardia Syndrome. None of these fully explained my illness.

When I found the International Consensus Criteria, I had an “aha” moment. It described exactly what I’ve experienced.

What is The ICC?

The International Consensus Criteria for Myalgic Encephalomyelitis was written in 2011 by an international panel of clinicians, research investigators, teaching faculty, and an independent educator, representing diverse backgrounds, medical specialties and geographical regions.

Myalgic Encephalomyelitis (ME) is a profound dysregulation of the central nervous system and immune system, dysfunction of cellular energy metabolism and ion transport as well as cardiovascular abnormalities. The disease affects people of all ages, genders, races and economic levels. Unfortunately, in the United States most doctors are unfamiliar with ME and so many of us are misdiagnosed.

In the International Consensus Criteria, Chronic Fatigue Syndrome is described as an umbrella term. ME fits under that umbrella. So, all people with ME have Chronic Fatigue Syndrome. But all people with Chronic Fatigue Syndrome do not have ME.

What’s Cool about the ICC?

I, personally, prefer the International Consensus Criteria over other criteria because of its accuracy and the fact it does NOT require a six month waiting period. I believe early intervention leads to better outcomes.

I’ve found that some people diagnosed with other conditions find they fit this criteria and now have a better understanding of their illness and possible treatments. There is a lot more that can be done than tell patients to go home and rest.

How to Use the ICC

At MEadvocacy.org, we created a questionnaire to make it easier for patients to understand if they fit criteria:

Learn More


Colleen Steckel is Founder of the North Carolina and Ohio M.E./FM Support group on Facebook and an Advisory Committee Member at MEadvocacy

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