Diagnosis Part 1
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For diagnosis and management use the International Consensus Criteria, ICC-ME 2011 & the International Consensus Primer, ICP-ME 2012, both specifically written about and for ME, designed to assess the unique combination of symptoms found in ME.
Links to those below: -
The ICC alone is not enough to confirm an ME diagnosis, the next step is to confirm the ME diagnosis. The International Consensus Primer guides doctors to diagnose, treat and rule out other diseases. It is a booklet prepared by ME experts to guide doctors in treating those who fit the ICC. The IC Primer is a physician guide that includes immune dysfunction, neurological issues, and cardiac abnormalities that are often overlooked in other information.
Post Exertional Neuroimmune Exhaustion (PENE) is a key symptom of Myalgic Encephalomyelitis (ME). PENE is referred to as PEM by others. The PEM questionnaire by De Paul is a questionnaire on the post exertional response, i.e., PEM (PENE as per the ICC), an essential criterion for an ME diagnosis. See more on PENE (PEM) further on in this guide.
By answering the questions, you get an idea of how ‘activity’, anything you do physically, cognitively, emotionally, affects you and what your individual post exertional response is, i.e., what symptoms occur and increase. Every person with ME is different. The post exertional response for a lot of people might not occur straight away and tends to be delayed 24 hours or 48 hours after activity. The questionnaire includes key indicators that show within answering a set of questions that it sounds like ME.
This is the link to the De Paul Post Exertional Questionnaire.
We tend to refer to the different severities of ME as Mild, Moderate, Severe, Very Severe, Profound - we refer to those as general categories which really have ranges within themselves ie Mild has its own range, as does Moderate and so on.
A good scale that could be used along with these categories to determine near exact range is the Bells Disability Scale for example, see below. Different people suffer in different ways but the scale gives an idea of the level of disability.
• It can be used by both Patient and Doctor to monitor progress/relapses of ME over time.
Bells Disability Scale
% Description
100 No symptoms at rest; no symptoms with exercise; normal overall activity level; able to work fulltime without difficulty.
90 No symptoms at rest; mild symptoms with activity; normal overall activity level; able to work full-time without difficulty.
80 Mild symptoms at rest; symptoms worsened by exertion; minimal activity restriction noted for activities requiring exertion only; able to work full-time with difficulty in jobs requiring exertion.
70 Mild symptoms at rest; some daily activity limitation clearly noted; overall functioning close to 90% of expected except for activities requiring exertion; able to work full-time with difficulty.
60 Mild to moderate symptoms at rest; daily activity limitation clearly noted; overall functioning 70% - 90%; unable to work full-time in jobs requiring physical labour, but able to work full-time in light activities if hours flexible.
50 Moderate symptoms at rest; moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected; unable to perform strenuous duties, but able to perform light duty or desk work 4-5 hours a day, but requires rest periods.
40 Moderate symptoms at rest; moderate to severe symptoms with exercise or activity; overall level reduced to 50% - 70% of expected; not confined to house; unable to perform strenuous duties; able to perform light duty or desk work 3-4 hours a day but requires rest periods.
30 Moderate to severe symptoms at rest; severe symptoms with any exercise; overall activity level reduced to 50% of expected; usually confined to house; unable to perform strenuous tasks; able to perform desk work 2-3 hours a day, but requires rest periods.
20 Moderate to severe symptoms at rest; severe symptoms with any exercise; overall activity level reduced to 30% - 50% of expected; unable to leave house except rarely; confined to bed most of day; unable to concentrate for more than 1 hour a day.
10 Severe symptoms at rest; bedridden the majority of the time; no travel outside of the house; marked cognitive symptoms preventing concentration.
0 Severe symptoms on a continuous basis; bedridden constantly; unable to care for self
Simple Tool to determine if the patient meets the ICC Criteria
Part of the process of confirming an ME diagnosis is to rule out other diseases. Too often patients discover after getting an ME label that a treatable illness had been overlooked. ME International's Conditions to Rule Out handout has useful patient information regarding how to help diagnose ME.
- Introduction to ME entitled Introduction to ME
- Reduced function and the range of symptoms in ME: Patients Accounts - Symptoms
- Exertional intolerance, the cardinal feature of ME: Understanding Post Exertional Malaise - a Hallmark Feature
- A Brief Guide to Post Exertional Intolerance
- Diagnosis of Myalgic Encephalomyelitis (ME) Part 2 here
- Diagnosis of Myalgic Encephalomyelitis (ME) Part 3 here
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