03 January 2010

Signs and symptoms of ME/CFS


A sign is the objective, observable or measurable evidence of disease, which can be observed by a clinician, such as pulse, temperature or blood pressure.

A symptom is the subjective experience of the individual, things that are not measurable but that the patient reports, such as pain, dizziness or tiredness.

The following is the list of signs and symptoms attributed to ME/CFS, and their implications on the individual. At a later date I will address how ME/CFS can affect work capacity, social interactions and general participation in activities of daily living, and how this may impact on the dynamics of relationships of family, friends and colleagues.

In the Canadian Consensus Document there are seven criteria. There is a link at the bottom of this page with the PDF file of the Canadian Consensus Document, which I recommend printing off and sharing with family, friends and medical professionals.

1. Fatigue
The pathological fatigue experienced by those with ME/CFS includes a combination of exhaustion, weakness, heaviness of limbs, overall physical malaise and cognitive fatigue.
The cognitive fatigue associated with ME/CFS is much more global than forgetting names or directions, it can encompass the inability to process information and sensory over stimulation. This is evident when the individual with ME/CFS demonstrates a delay in information retrieval, such as difficulty responding to questions.
There may be an inability to maintain sustained upright activity, orthostatic intolerance, an overwhelming urgent need to lie down, or at least sit with the feet and/or legs raised. More about this will be discussed under neurological manifestations.
A frequent experience of those who have ME/CFS is sleep dysfunction, such as insomnia. People commonly report being too tired to sleep.
It is extremely important to note that the fatigue experienced by individuals with ME/CFS is not alleviated by sleep or rest.

2. Post-Exertional Fatigue and/or Malaise
There is a significant restriction on mental and physical stamina, and physical activity can trigger a rapid onset of malaise, and/or fatigue, and/or muscle pain. In some cases, exercise may trigger a full blown relapse with exacerbation of all signs and symptoms, which may take considerably longer to recover from.

3. Sleep Dysfunction
Common sleep dysfunctions which may be present in cases of ME/CFS include Hypersomnia (the need to nap frequently during the day), Difficulty getting to sleep, staying asleep, getting to stage 4 level of sleep, non restorative sleep, exhaustion on waking, Insomnia. Sleep difficulty is usually chronic (ongoing) as opposed to acute or intermittent. These difficulties, of course, worsen durning a relapse.

4. Pain
Pain experienced by individuals with ME/CFS is chronic and muscular in nature, which may be described as deep, throbbing, sharp, dull, burning, shooting. Headaches and migraines are very common.

5. Neurological/Cognitive manifestations
Cognitive manifestations: Brain fog is an experience referred to by many individuals with ME/CFS. This includes confusion, slow reaction time, difficulty processing information, difficulty with word retrieval or speaking, impaired concentration, attention, forgetfulness are all common factors in CFS/ME. There is a susceptibility to interference also. An example is when your writing down one word, while your friend says another, you end up writing the word that was spoken by your friend.
Overload: Individuals with CFS/ME are hypersensitive to sensory stimulation, such as lighting, colour, noise, temperature and sometimes texture. Individuals with ME/CFS experience impaired attention and focus when there is multiple sensory input. For example noise and visual input may lead to worsening symptoms or trigger a crash.
Motor and Perceptual disturbance: Individuals with ME/CFS experience muscle weakness, leading to problems with balance and stability.

6a. Autonomic Manifestations
Chronic Orthostatic Intolerance is a common experience in individuals with ME/CFS. This is characterised by the inability to maintain upright positions, and an overwhelming need to lie down. Standing still is not tolerated well, and can induce a drop in blood pressure with or without and increase in the heart rate.

6b. Neuroendocrine Manifestations
Thermostatic instability which includes fluctuations of temperature throughout the day, with episodes of feverishness and sweating alternating with shivering, occurs in individuals with ME/CFS. Experiences of thermal intolerance also occur and may trigger worsening of symptoms, or a relapse. There is frequently marked weight changes, either increase or decrease, and associated anorexia or abnormal appetite. The ANS system disregulations also play a role in loss of adaptability, and the worsening symptoms with stress.

6c Immune Manifestations
Infections and viruses can often precede onset of ME/CFS, such as Epstien-Barr/Glandular Fever/Mononucleosis, as well as HHV-6. Some of the symptoms associated with the immune manifestations include general malaise, tender lymph nodes, recurrent sore throat, and new sensitivities to food and chemicals such as washing powders.

An individual with ME/CFS may not exhibit all of these symptoms, or different symptoms may come and go over time. For the complete document, please go to the following link:



  1. Your doing a GREAT job with your Bloging Emma, just remember to take time for you to rest up.
    ((Hugs)) & Smiles

  2. awsome blog Emma, I hope you you have a wonderful and happy new year


  3. Wonderful information... keep up the good work. I have several people on PLM watching this as well.

  4. Just found your blog through Facebook. Looks like you're off to a good start! I signed up to follow.

    I also write a CFS blog at www.livewithcfs.blogspot.com

    Nice to "meet" you!


  5. Thanks for the excellent info.
    I would love if you could do a blog about distinguishing between CFS/ME and Fibromyalgia.

    On a related note - I've written a children;s book about a family dealing with chronic illness called "Mommy is too tired to play". A portion of proceeds goes towards research into CFS/ME and FMS.


  6. Thanks for this blog Emma. I've read your story and can identify with so much of it.

  7. Hello Possum ;)
    This post is excellent. Infinitely better than the usual "you must have had fatigue for more than 6 months" wishywashyness.

    I'd love to see the sleep info expanded on. (In your own time - don't work too hard!)

  8. Excellent well written summary.. thank you!

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