ME/Long-COVID Symptoms & diagnosis
Symptoms of ME and Long-COVID
Hallmark Symptoms for ME and Long-COVID
​Additional symptoms that may occur with both
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Joint and general body pain; headache
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Light, sound, smell, vibration, touch, chemical, and food sensitivities
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Fever-like symptoms, sore or swollen glands, sore throat, tinnitus
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Cardiovascular symptoms, like rhythm irregularities
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Feeling of lack of oxygen (air hunger)
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Digestive issues (bloating, abdominal pain, nausea, diarrhea, or constipation)
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Sweating, chills, trouble with heat or cold
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Rashes and swelling
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Effective functions (emotions) can be altered, and anxiety and mood changes may range from mild to severe. Depression may also occur, as a reaction to, rather than as a cause of ME.
For diagnosis, must have all of:
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Extreme Fatigue that is not improved by rest and interferes with daily activities
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Post-exertional malaise (PEM) - a worsening of symptoms after physical, mental, or emotional effort
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Unrefreshing or disturbed sleep
Must also have at least one of:
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Cognitive impairment (brain fog), such as problems with memory, concentration, thinking, or speaking
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Orthostatic intolerance - a feeling of lightheadedness, dizziness, imbalance, or fainting when standing or sitting up
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Additional symptoms that are common with Long-COVID
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Cough, chest pain, trouble breathing
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Persistent loss of taste or smell
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Challenges with diagnosis
It often takes years or decades to get an ME diagnosis and the CDC estimates that over 90% of people with ME in the US remain undiagnosed or misdiagnosed, and this is likely similar in Canada.
“The path to an ME diagnosis is often lengthy and challenging… with few practitioners knowledgeable or confident to diagnose” (p.15).
In a 2021 report, 83% of healthcare workers in BC reported no to moderate knowledge of ME. They also had very low confidence in their ability to diagnose ME, with 76% stating they had no confidence to diagnose.
With the increased awareness around Long-COVID, diagnosis for both illnesses may become less challenging.
CAUTION!
Functional Capacity Evaluations or FCEs are not recommended for people with ME/CFS.
The test may not work
The results of FCEs are likely incorrect or invalid (will significantly overestimate functioning) in people with ME/CFS.
The test may cause a crash
The test itself poses a serious risk of triggering PEM (post exertional malaise, or a worsening of symptoms immediately or 12-48 hours after exertion), that may not be evident for a day or more.
The test may contribute to permanent worsening of your illness
Triggering PEM can cause an immediate crash and triggering PEM too hard or often may lead to a permanent or long-term worsening of your illness.
These conclusions should apply equally to those with Long-COVID who exhibit exercise intolerance and PEM.
Path to diagnosis
Both ME and Long-COVID have no single test or biomarker to confirm diagnosis. This means that both illnesses are diagnosed:
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by a list of symptoms, that may be very different day to day and person to person (see above).
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by excluding other illnesses that have common or overlapping symptoms.
There are tests that can help.
Note: Diagnosis requires persistence of symptoms for several weeks
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6 months for adults for ME
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3 months for children for ME
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3 months for everyone with Long-COVID.
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There are available tools for your doctor, such as the symptom list above, a summary on the healthlinkbc website adapted from a National Academies clinician’s guide (previously IOM, 2015), the Canadian Consensus Criteria for ME, the National Institute for Care and Excellence, (NICE, 2021) and the WHO Clinical Case Definition for Long-COVID.
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If they are comfortable to do so, your GP can give you a diagnosis.
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