Links to Diagnostic Criteria for ME/CFS

[Sushi]

This list of links was compiled by @PatJ -- Thanks!

IOM ME/CFS/SEID diagnosis flowchart

Canadian Consensus Criteria - List of common ME symptoms agreed upon by ME specialists

International Consensus Criteria - Another list of common ME symptoms agreed upon by ME specialists

 

[Shoshana]

@HelloGoodbye

This is some material, you may want to look at.

 

[Pyrrhus]

International Consensus Criteria (ICC)​

International Consensus Criteria (ICC) - This is a comprehensive set of diagnostic criteria, based upon the older Canadian Consensus Criteria. It uses the term "Myalgic Encephalomyelitis" and discourages the use of the term "Chronic Fatigue Syndrome". It also uses the term "Post-Exertional Neuroimmune Exhaustion (PENE)" instead of the older term "Post-Exertional Malaise (PEM)".

To qualify as having Myalgic Encephalomyelitis according to the ICC, you must have the following:


Post-exertional neuroimmune exhaustion (PENE):

• A "post-exertional symptom exacerbation" defined by "marked, rapid physical and⁄or cognitive fatigability in response to exertion". PENE may occur immediately following exertion or be delayed for hours or days. Recovery from PENE may take days, weeks, or longer. This lack of stamina results in a substantial reduction in daily activity.

At least 3 of the following 4 neurological symptoms:

1. Cognitive dysfunction (formerly known as "brain fog")
2. Pain, either headaches or increased pain sensitivity
3. Sleep problems, either disturbed sleep patterns or unrefreshing sleep
4. Sensory or movement dysfunction, either light/sound hypersensitivity (including blurred vision) or muscle weakness (including muscle twitching or balance problems)

At least 3 of the following 5 immune or gastrointestinal symptoms:

1. Flu-like symptoms that occur or worsen after exertion, including sore throat, sinusitis, or lymph node swelling
2. Frequent infections, with prolonged recovery
3. Irritable Bowel Syndrome (IBS), including nausea, pain, bloating, constipation, or diarrhea
4. Frequent urination
5. Food sensitivities or Multiple Chemical Sensitivity (MCS)

At least 1 of the following 4 "energy" symptoms:

1. Orthostatic Intolerance (OI), palpitations, or arrythmias
2. Breathing problems ("air hunger" or "dyspnea")
3. Body temperature problems, including night sweats, feverish feeling, cold hands or feet
4. Hypersensitivity to a hot or cold environment

For more information, see:

Primer for Medical Practitioners
by the authors of the International Consensus Criteria
http://www.investinme.org/Documents/Guidelines/Myalgic Encephalomyelitis International Consensus Primer -2012-11-26.pdf

Do I Fit the International Consensus Criteria?
by MEAdvocacy
https://d3n8a8pro7vhmx.cloudfront.n...636/ICC_Questionnaire_Nov_2016.pdf?1478717636

Do I Have M.E.?
by the Swiss ME/CFS Society
https://sgme.ch/icc/en/

 

[Pyrrhus]

Canadian Consensus Criteria (CCC)​

Canadian Consensus Criteria (CCC) - This is an older, but still comprehensive, set of diagnostic criteria for ME/CFS, agreed upon by top ME/CFS specialists.

To qualify as having ME/CFS according to the CCC, you must have the following:


Fatigue:

• Physical and mental fatigue that substantially reduces your daily activities.

Post-Exertional Malaise (PEM):

• An inappropriate loss of physical strength and mental ability after exertion, along with a worsening of other symptoms.

Sleep problems:

• Unrefreshing sleep, disturbed sleep patterns, or insomnia

Pain:

• Muscle soreness or headaches

At least 2 of the following 3 neurological symptoms:

1. Cognitive dysfunction (formerly known as "brain fog") (includes "perceptual disturbances" and blurred vision)
2. Balance problems, muscle weakness, or muscle twitching.
3. Hypersensitivity to light, sound, odors, cognitive stress, or emotional stress.

At least 2 of the following 3 other categories of symptoms:

1. Dysautonomia: Including Orthostatic Intolerance (OI) (including light-headedness and extreme pallor), Irritable Bowel Syndrome (IBS) (including nausea), frequent urination, heart palpitations or arrhythmias, or breathing problems ("air hunger" or "dyspnea")
2. Hormone problems: Body temperature problems, including night sweats, feverish feeling, cold hands or feet. Hypersensitivity to a hot or cold environment. Weight change. Stress intolerance.
3. Immune problems: Flu-like symptoms, including sore throat or lymph node swelling. Food sensitivities or Multiple Chemical Sensitivity (MCS)

Lastly, the illness must have lasted at least 6 months.

 

[Pyrrhus]

IOM/NAM Diagnostic Criteria (SEID)​

IOM/NAM Diagnostic Criteria (SEID) - This is a basic set of diagnostic criteria that is much less detailed than the ICC or CCC, but is easier to understand. It encourages use of the term "Systemic Exertion Intolerance Disease" or SEID, instead of ME/CFS.

To qualify as having Systemic Exertion Intolerance Disease (SEID) according to the IOM/NAM Diagnostic Criteria, you must have the following:


Inability to perform your usual work, study, social, or personal activities due to fatigue:

• There must be a substantial reduction in pre-illness activities that persists for more than 6 months. This is accompanied by new or unusual fatigue, which is often profound. Furthermore, the fatigue is not the result of overwork, and is not substantially alleviated by rest.

Post-Exertional Malaise (PEM):

• There is a worsening of symptoms after physical, cognitive, or emotional activity. This should be more than mild and should occur at least half of the time.

Un-refreshing Sleep:

• Feeling as tired upon waking as before going to bed. This symptom should be more than mild and should occur at least half of the time.

At least 1 of the following 2 symptoms:

1. Cognitive Dysfunction (formerly known as "brain fog"): An inability to concentrate on tasks or process information. This symptom can be more debilitating than the physical symptoms. This symptom should be more than mild and should occur at least half of the time.
2. Orthostatic Intolerance (OI): Symptoms include light-headedness, headaches, weakness, increased heart rate, or chest pain. Symptoms worsen upon standing, and improve upon lying down.

For more information, see:

• CDC links regarding the IOM/NAM Diagnostic Criteria

 

[Pyrrhus]

Here is the Phoenix Rising poll on the ICC:

Poll: Do you have Myalgic Encephalomyelitis (ICC)
https://forums.phoenixrising.me/threads/poll-do-you-have-myalgic-encephalomyelitis-icc.85648/

Note that people who almost fit the ICC, but not exactly, are referred to as "Atypical ME" in the ICC:

Atypical myalgic encephalomyelitis:
Meets criteria for postexertional neuroimmune exhaustion but has a limit of two less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.

 

[Pyrrhus]

Why does the ICC use "PENE" instead of "PEM"?

In the English language, the word "malaise" can refer to just a slight discomfort, so some feel that it's not really accurate to refer to PEM as "malaise". They therefore find the term "PEM" offensive.

To replace the word "malaise", people have come up with Post-Exertional Neuroimmune Exhaustion (PENE) and, more recently, Post-Exertional Symptom Exacerbation (PESE). Personally, I prefer PESE.

 

[Pyrrhus]

Related research on diagnostic criteria:

Contrasting Case Definitions: ME International Consensus Criteria vs. the Fukuda et al. CFS Criteria (Brown et al., 2013)
https://forums.phoenixrising.me/thr...teria-vs-the-fukuda-et-al-cfs-criteria.24865/

The importance of a research case definition (Jason et al., 2017)
https://forums.phoenixrising.me/threads/the-importance-of-a-research-case-definition.55300/

ICC vs. Fukuda: Diffusion tensor imaging results differ based on diagnostic criteria (Thapaliya et al., 2021)
https://forums.phoenixrising.me/thr...agnostic-criteria-thapaliya-et-al-2021.85111/