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

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Art: 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.

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.

Why Use the Name ME? 

The International Consensus Primer states:

“Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease.

“Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for Chronic Fatigue Syndrome or its hybrids… should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing Chronic Fatigue Syndrome classification.”

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/Ohio ME & FM Support Group on Facebook. This group welcomes people from all areas. Colleen is also an Advisory Committee Member at MEadvocacy.org.

1 thought on “How Colleen Used the ICC to Finally Get a Diagnosis that Fit”

  1. Thanks so much to everyone who writes here for the time you take to assist others, your wisdom & creativity, & your devotion to helping those with different abilities !!

    Like

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