ICC Criteria For MECFS
Shorthand Version
Myalgic Encephalomyelitis is no longer a definition of exclusion. You must meet the following diagnostic criteria:
You must have PEM and 1 symptom in each of the following categories*
1.) Neurological
2.) Immunological or Gastrointestinal
3.) Energy Impairment or Cardiovascular
*atypical ME may be diagnosed where one category is absent.
Confused? Follow the prompts ahead for a clearer picture.
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Do you have Post Extertional Neuroimmune Exhaustion (aka as Post Exertional Malaise or PEM)
This required feature is inability to produce enough energy on demand with extreme symptoms following exertion leading to…
Marked, rapid physical and/or cognitive fatigability in response to minimal exertion. As well as acute flu-like symptoms, pain and worsening of other symptoms.
PEM may occur immediately after activity or be delayed by hours or days. Recovery period is prolonged, usually taking 24h or longer. A relapse can last days, weeks or longer.
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Notes:
This lack of stamina must result in a substantial reduction in pre-illness activity level. 50% reduction in activity is considered mild. However, previous lifestyle must be taken into account. (For example a pro athlete may still be quite active at a 50% reduction in function)
If you don't have this symptom you don't have MECFS. Lucky you. Skip the rest of this post.
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For the next 3 categories you only need 1 of the listed symptoms to proceed. If you have none of the listed symptoms you can rule out MECFS.
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Category 1 - Neurological
Options:
-Neurocognitive impairments such as…
--short term memory loss
--"brain fog"
-Pain
--any sort of chronic headache
--joint or muscular pain
-Sleep disturbance
--insomnia or disturbed sleep patterns
--unrefreshing sleep
-Neurosensory, perceptual or motor
--light or noise sensitivity
--difficulty with coordination
--muscle twitching or spasm
--any other major neurological symptom
If you have at least 1 symptom continue. Otherwise you may have atypical ME, EDS, or another rare disease.
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Category 2 - Immune and Gasto
-Flu like symptoms
-Frequent and/or prolonged infections
-Gastro
--IBS
--Nausea
--Bloating
--Abdominal pain
--Frequent or urgent urination
-Allergens
--MCAS
--sensitivity to foods, odors or medications
If you have at least 1 of the above continue. Otherwise you may have atypical ME, EDS, or another rare disease.
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Category 3 - Energy Impairment and Cardiovascular
-Cardio
--POTS or Orthostatic Intolerance
--Dizziness and/or lightheadedness when standing quickly or for prolonged periods
-Inability to tolerate upright positions
-Respiratory
--Air hunger, feeling short of breath
--Fatigue of chest muscles or diaphram
-Dysautonomia
--hot or cold flashes
--inability to regulate temperature
--Raynaud's syndrome (cold white hands and feet)
--intollerance of extreme temperatures
If you have at least 1 symptom continue. Otherwise you may have atypical ME, EDS, or another rare disease.
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Welp... if you made it here you have Myalgic Encephalomyelitis. MECFS is a severe neuroimmulogical disease affecting around 1% of the population. Only 1 in 4 people with ME can work even part time and 25% are permenantly housebound or bedbound. Here's what you can do about it:
-Look up and begin pacing, avoiding triggering PEM* and thus stopping your condition from progressing
-Look into ACT* or Acceptance and Commitment Therapy to begin to learn how to live a fullfilling life with your condition
-Don't give up on searching for additional conditions that may be compounding your fatigue and have better treatment options
*see other posts @m.e_and_more
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Common commorbidities include Fibromyalgia, myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, Raynaud’s phenomenon, prolapsed mitral valve, migraines, allergies, multiple chemical sensitivities, Hashimoto's thyroiditis, Sicca syndrome, reactive depression. Migraine and irritable bowel syndrome may precede ME but then become associated with it. Fibromyalgia overlaps.
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Myalgic Encephalomyelitis is not a diagnosis of exclusion. It is not chronicfatigue and it is not the same thing as fibromyalgia despite what many doctors may believe. So what is it?
Here are the ICC diagnostic criteria for MECFS aka Myalgic Encephalomyelitis aka ME aka CFS aka chronic fatigue syndrome. If you fit this diagnosis I believe the most advantageous term for all of us is Myalgic Encephalomyelitis as it clearly lays out the medical issue at hand
My(muscle)-algic(pain) Encephalo(brain)myel(muscle)itis(inflammation)
This post was created to transcribe the ICC diagnostic criteria into a form as accessible as possible while remaining as scientifically accurate as possible. The origional guidelines are widely available online by googing "International Consensus Criteria MECFS"
Many posts on this account refer to pacing and other severe functional limitations required by MECFS patients due to PEM or post-exterional malaise. Understanding these diagnostic criteria is important so that you do not limit yourself unnecessarily or so that you understand the rigerous criteria behind your diagnosis and thus the importance of severely life altering treatments.
It is also important that these guidelines be widely shared and known through the medical community, medical instagram, fatigue, chronicillness chronic fatigue, spoonie, med school community, etc. As misunderstandings around the diagnosis of MECFS which affects only 1 in 20 chronic fatigue patients is the cause of large amount of medical gaslighting and false claims of recovery from MECFS, a severely dehbilitating incurable neuroimmulogical disease.
Finally if these guidelines tell you that you have MECFS please take it seriously. This is not an opinion post or my personal feeling on diagnosis it is the worlds best consensus criteria for diagnosing this illness. Seek out medical help and begin implementing pacing immediately. Keep fighting until you find a doctor and support network that will protect your health and safety with this extremely neglected and misunderstood illness. I am so sorry this happened to you. But accepting and understanding is the first step to healing.
