We are concerned that the real symptoms of ME (mild to profound) are being covered up under the term fatigue and ignored. ME is not fatigue, fatigue is just one of many, many symptoms and probably not even everyone’s worst one.
People in the ME community have different severities of ME- Mild, Moderate, Severe, Very Severe, *Profound. No matter what the degree of severity they do not describe themselves as fatigued or relate to ‘fatigue’ as their primary symptom.
According to the ICC 2011 -
“Using ‘fatigue’ as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has ‘chronic fatigue’ attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME.
Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day.”
ME is a multi-systemic disease with many organ and bodily systems affected, producing a myriad of symptoms.
The complex range of symptoms in ME include:
● Dysfunctional immune system
● Underlying intestine disorders
● Problems of oxidative stress
● Faulty mitochondria – shortage of oxygen and energy supply in body.
● Cardiac abnormalities
● Neurological abnormalities
● Endocrine abnormalities
● Various muscle abnormalities, malfunction at the molecular level of the ionic channels
● Central Nervous System involvement
● Structural and functional brain abnormalities
● Gene expression abnormalities
● Sleep abnormalities
(see more detailed symptom list below as described by ME patients)
People with ME, in particular those with Severe ME are daily battered by a multiple, never-ending, overwhelming, symptom experience, an experience which is trivialised by the use of the word ‘Fatigue’.
“My wife has had Severe, now Very Severe ME, for decades. She most certainly does not describe herself as fatigued or relate to “fatigue” as her primary symptom. We are concerned that the real symptoms are being covered up under the term ‘fatigue” or simply ignored. We have found this to be true with my wife’s most serious and debilitating repeated daily and nightly symptom: PARALYSIS.”
- Greg Crowhurst
In an attempt to show the wide separation between the term “fatigue” and the actual presentation of people who have ME - Mild, Moderate, Severe, Very Severe, Profound – we list the symptoms as described by those who responded to a question posed by ME advocate and carer Greg Crowhurst when he looked for more information and recognition of the true symptoms of ME and people’s actual experience of the illness.
The symptoms that “fatigue” actually covers over: -
PENE (as per the ICC) also referred to as Post Exertional Malaise (PEM)
Paralysis: Total/Partial (*more on Paralysis at the bottom of post)
Chronic nerve pain
Global wide-spread pain
Jolts of pain
Costrochondritis (inflamed chest wall)
Skin crawling sensations
Vein pain Inflammation
Severe Menstrual issues
Feeling of toxicity
Pins and needles
Muscle spasms (shaking)
Violent, uncontrollable ‘tics’ in limbs
Lack of strength
Hyperacusis (noise sensitivity)
Photophobia (light sensitivity) Hypersensitivity to smells
Inability to focus
Poor spatial recognition
Fuzzy/ blurred vision
Double letter vision
Flashing eyes (open or shut)
Seeing pinpoints of light in the dark
Feeling of toxicity
Hyperesthesia (Touch sensitivity)
Mercury intolerance (silver fillings)
Temperature control problems/ dysregulation (too hot or cold)
Gut and bowel issues
Loss of sensation
Loss of proprioception
Extreme excess mucous
No restful sleep
Inability to stay awake
Low and/or high blood pressure
Bradycardia (low heart rate)
Tachycardia (high heart rate)
Loss of equilibrium
Loss of balance
Inability to stand
Inability to walk
Inability to sit
Poor/loss of co-ordination
Raynaud’s phenomenon (poor circulation in fingers and toes)
Cognitive dysfunction (brain fog):
An inability to follow conversation
Lack of ability to process information
Loss of ability to plan
Loss of ability to think
Loss of memory
Loss of speech
Not recognising faces
Inability to understand
Inability to identify left from right
Switching letters round in words
Difficulty retaining information
Unable to hold two-way conversation
Not fully conscious
Unable to read
Unable to write
Inability to hold things
Inability to lift things
Severe sensory issues
Loss of touch
Loss of taste
Lack of stamina
Compromised immune system
Slow recovery from colds/flu
Shortness of breath
Easily dislocated joints
Vitamin D deficiency
The above list is very long but is not a limited list of symptoms in ME.
The danger is that the long list of symptoms above can still, unintentionally, underplay their severity and seriousness, the totally disabling nature and the individual intensity of each one, which together add up to a physical nightmare of indescribable proportion.
Greg Crowhurst includes a fuller description of peoples’ actual illness experience, in stark contrast to the simplification of ME described as “Pain, Sleep and Fatigue”. He gives a much fuller picture of the devastation of ME in his full article called 'ME - The Fatigue Cover-Up'
See more about symptoms and diagnosis from one of our previous posts.
Thanks to Greg & Linda Crowhurst for the image and for much of the information shared above.
When ME Advocates Ireland (MEAI) refer to the different severities of ME- 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.
*Paralysis in Myalgic Encephalomyelitis (ME)
Paralysis, a recognised part of Myalgic Encephalomyelitis (ME) is generally ignored, downplayed, disrespected, or treated as not real.
Paralysis has been taken seriously in other diseases, for example in Lyme, Multiple Sclerosis, Stroke, and Brain Injury, but not in ME.
There has not been any relevant research into this terrifying symptom of ME which mostly occurs in people in the Severe categories. The only scientific study I could find was a 2001 Belgian study involving 2073 patients in which 27.2% of patients meeting the Fukuda criteria and 33.2% of patients meeting the Holmes criteria reported paralysis.
There is currently not enough examination, biomedical investigation, and comprehension about what people with ME are going through, nor adequate medical explanation, only varying hypotheses. There is no real language, even amongst people with the disease, to help them to identify this key symptom clearly, or articulate their complex symptom experience, because the medical focus is not upon neurological symptoms, as one might expect for a neurological disease, but on fatigue.
Paralysis is not treated as if it is part of ME, especially in Severe/Very Severe ME.
Who is treating or taking paralysis seriously as a symptom especially in Severe ME?
For more on paralysis see this post from our facebook.