Diagnosis Part 1
|Image by MEAI|
Essential Steps & Resources for
Making a Diagnosis of
Myalgic Encephalomyelitis - M.E.
Questionnaires & Tools to Assess ME Symptoms & Severity
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. The Primer is written with doctors and other healthcare providers in mind.
Links to those below: -
The Myalgic Encephalomyelitis (ME) International Consensus Criteria ( )
|A patient will meet the criteria for postexertional neuroimmune exhaustion (A), at least one symptom from three neurological impairment categories (B), at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and at least one symptom from energy metabolism/transport impairments (D).|
|This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:|
|which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.|
|may occur immediately after activity or be delayed by hours or days.|
|usually taking 24h or longer. A relapse can last days, weeks or longer.|
|slowed thought, impaired concentration ,|
|e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory|
|e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches|
|can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is noninflammatory in nature and often migrates. ,|
|e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares|
|e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness|
|e.g. inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception|
|e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia|
|e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation|
|e.g. nausea, abdominal pain, bloating, irritable bowel syndrome|
|e.g. urinary urgency or frequency, nocturia|
|e.g. inability to tolerate an upright position - orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness|
|e.g. air hunger, laboured breathing, fatigue of chest wall muscles|
|e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities|
|Symptoms may progress more slowly in children than in teenagers or adults. In addition to postexertional neuroimmune exhaustion, the most prominent symptoms tend to be neurological: headaches, cognitive impairments, and sleep disturbances.|
|Severe or chronic headaches are often debilitating. Migraine may be accompanied by a rapid drop in temperature, shaking, vomiting, diarrhoea and severe weakness.|
|Difficulty focusing eyes and reading are common. Children may become dyslexic, which may only be evident when fatigued. Slow processing of information makes it difficult to follow auditory instructions or take notes. All cognitive impairments worsen with physical or mental exertion. Young people will not be able to maintain a full school programme.|
|Joint hypermobility is common.|
Severe ME, which includes those with severe, very severe and profound ME, sees patients suffering from a horrendous, disabling form of Myalgic Encephalomyelitis. These patients are isolated/confined to bed due to the severity of their symptoms and disabilities, and are often unable to leave their home even to seek medical care.]Severe ME considerations
|Myalgic Encephalomyelitis: International Consensus Criteria 2011|
The Myalgic Encephalomyelitis (ME) International Consensus Primer (ICP)
Symptom Questionnaire (DePaul Symptom Questionnaire DSQ)
PEM Questionnaire (De Paul DSQ PEM Questionnaire - DPEMQ)
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.
Full access to all the DePaul questionnaires
Bells Disability Scale
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
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
How to Measure Grip Strength:
Grip strength is measured using an instrument called a dynamometer. Measure your grip strength with a dynamometer using the following steps:
- Hold your arm with your elbow bent at a 90-degree angle.
- Squeeze the dynamometer as hard as possible.
- Apply grip force in a smooth motion. Avoid jerking.
- Repeat twice more for a total of three times.
- Your grip strength is the average of the three readings.
NASA Lean Test
An alternative to Tilt Table Testing is the NASA Lean TestNote! Most people with ME especially those with more severe ME would not be able to do Tilt Table Testing. An alternative test for those who can get out of bed without difficulties, and who are able to sit up for 10 minutes and then also stand for at least 10 minutes is the NASA Lean Test (same as 'poor man's tilt table test). For those with more severe ME, doctors can monitor pulse and blood pressure while the patient is standing, and again while lying down. This may need to be repeated several times, and is known as the ‘poor man’s tilt table test, or more modernly as the NASA Lean Test.
Step By Step Procedure in the NASA Lean Test
Ask the patient to lie down and rest quietly for 15 - 20 minutes.
Then take the first blood pressure and pulse readings and make a note of them.
Ask the patient to sit up for 10 minutes, or as long as they can manage without severe problems, and then take another set of readings and make a note.
Then direct the patient to stand up for 10 minutes, leaning against a wall, but without fidgeting or moving or talking which can affect the result. Then take another set of readings and make a note.
After another 10 minutes of standing and leaning, take the readings again and make a note.
Keep leaning. Do not flex any muscles or talk.
After another ten minutes, take the readings again.
Important Notes for the doctor and patient with regards to the NASA Lean Test!
If at any time the patient starts to feel sweaty or hot or nauseous, the doctor/practitioner needs to take the patient's bp and pulse readings right away and get the patient lying down as soon as possible.
Many patients will not be able to tolerate this much time upright and will need to stop the test partway through. If this happens, take another reading (if possible) and then the patients lies down again.
Failure to stop the tests when the patient becomes severely ill can lead to a loss of consciousness, or severe relapse lasting days, weeks or even months in the very severely affected. Someone should always be standing near the patient to catch them if they fall and serious requests to stop the test must be acted on in a timely manner.
Assessing the readings taken:
For Neurally Mediated Hypotension* (NMH), the patient has to have a 20-25 mm drop in systolic blood pressure (the higher number).
If the patient's pulse suddenly rises at least 30 bpm (beats per minute), then it is likely they have Postural Orthostatic Tachycardia Syndrome* (POTS).
Dr. Rowe believes that they are both really the same thing - with either, if the patient doesn't lie down, they're going to pass out. And the treatment for both is the same.
*Neurally mediated hypotension is also known by the following names: the fainting reflex, neurocardiogenic syncope, vasodepressor syncope, the vaso-vagal reflex, and autonomic dysfunction. Hypotension is the formal medical term for low blood pressure, and syncope is the term for fainting. Neurally mediated hypotension occurs when there is an abnormal reflex interaction between the heart and the brain, both of which usually are structurally normal.
*Postural orthostatic tachycardia syndrome (or POTS) is a condition of orthostatic intolerance in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, often, but not always accompanied by a fall in blood pressure. Patients with POTS also have problems in maintaining homeostasis when changing position ie moving from one chair to another or reaching above their heads.
Symptoms include an abnormally large increase in heart rate upon standing, lightheadedness, extreme fatigue, nausea, headache, chest pain, exercise intolerance and impaired concentration. Patients may exhibit mild hypotension while standing, but most do not experience fainting. POTS patients are usually significantly debilitated by their symptoms.
More Information on the NASA Lean Test
'A Simple Way to Assess Orthostatic Intolerance', an information document by Lucinda Bateman, includes images and pdf copies of instructions for medical providers and patients about how to do the NASA Lean Test, see here.
More Useful Resources for Diagnosis
Patient Doctor Check List Based on the ICC
Simple Tool to determine if the patient meets the ICC Criteria
Conditions to Rule Out Information Sheet (by ME International US)
- Diagnosis of Myalgic Encephalomyelitis (ME) Part 2 here
- Diagnosis of Myalgic Encephalomyelitis (ME) Part 3 here
- Communicating with Doctors & other healthcare providers here
- Information for Doctors & other healthcare providers here