Saturday, 12 March 2022

Myalgic Encephalomyelitis (ME) - The Real Symptoms


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.”




JS - Posters and ME





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)
Heavy limbs
Muscle weakness
Pain:
Chronic nerve pain
Crushing pain
Global wide-spread pain
Muscle pain
Joint pain
Jolts of pain
Painful feet
Glandular pain
Sore throat
Hoarseness
Swollen glands
TMJ
Trigeminal neuralgia
Occipital neuralgia
Chest pain
Costrochondritis (inflamed chest wall)
Skin crawling sensations
Burning Itching
Stabbing pain
Sharp pain
Aching
Skin pain
Vein pain Inflammation
Severe Menstrual issues
Swelling
Inflammation
Severe Headaches
Migraine
Head pain
Neck pain
JS - Posters and ME

________________
Tinnitus
Feeling of toxicity
Breathing difficulty
Respiratory depression
Air hunger
Cramps
Pins and needles
Tingling
Peripheral neuropathy
Tremor
Muscle spasms (shaking)
Twitching
Violent, uncontrollable ‘tics’ in limbs
Restless legs
Muscle wasting
Lack of strength
Hyperacusis (noise sensitivity)
Photophobia (light sensitivity) Hypersensitivity to smells
Visual disturbance:
Staring
Inability to focus
Poor spatial recognition
Fuzzy/ blurred vision
Double letter vision
Tunnel vision
Eye pain
Dry eyes (do not hold tear film)
JS - Posters and ME

Itching eyes
Burning eyes
Flashing eyes (open or shut)
Seeing pinpoints of light in the dark
__________________________________
MCS
Drug sensitivity
Tinnitus
Feeling of toxicity
Incontinence
Multiple Sensitivities
Hyperesthesia (Touch sensitivity)
Movement Sensitivity
Motion Sensitivity
Light Sensitivity
Temperature Sensitivity
Sound Sensitivity
Smell Sensitivity
_____________________________
Nausea
Vomiting
Allergies (multiple)
Gastric issues
Swallowing difficulties
Choking
Acid reflux
Hypoglycaemia
Dental issues
Mercury intolerance (silver fillings)
Temperature control problems/ dysregulation (too hot or cold)
Sweating profusely
Temperature fluctuations
Heat intolerance
Cold Intolerance
IBS
Gut and bowel issues
Food allergy
Food sensitivity
Malabsorption issues
Weight loss
Oxygen depletion
JS - Posters and ME

Loss of sensation
Numbness
Loss of proprioception
Sinus problems
Extreme excess mucous
Severe anxiety
Sleep difficulties:
Lucid dreaming
Insomnia
Sleep disruption
Unrefreshing sleep
Sleep apnea
Nightmares
No restful sleep
Inability to stay awake
__________________________-
Hypnogogic jerks
Dizziness
Vertigo
Black outs
Lightheadedness
Low and/or high blood pressure
Heart issues:
Palpitations
Cardiomyopathy
Bradycardia (low heart rate)
Tachycardia (high heart rate)
Orthostatic intolerance
POTS
Dysautonomia
Loss of equilibrium
Loss of balance
Inability to stand
Inability to walk
Inability to sit
Poor/loss of co-ordination
Clumsiness
Raynaud’s phenomenon (poor circulation in fingers and toes)
B12 deficiency
Endocrine dysfunction
Seizures
Unconsciousness
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
Forgetfulness
Greg Crowhurst

Loss of speech
Slurring
Forgetting names
Not recognising faces
Word loss
Inability to understand
Inability to identify left from right
Switching letters round in words
Difficulty retaining information
Mental Confusion
Difficulty concentrating
Unable to hold two-way conversation
Not fully conscious
Unable to read
Unable to write
Inability to hold things
Inability to lift things
Sensory overload
Severe sensory issues
Loss of touch
Loss of taste
No energy
No strength
Lack of stamina
Disabling fatigue
Emotional lability
Compromised immune system
Repeated infections
Severe thirst
Dehydration
Excessive saliva
Mouth sores
Kidney infections
Flu-like symptoms
Crippling Exhaustion
Chronic infections
Slow recovery from colds/flu
Cysts
Skin rashes
Fevers
Shortness of breath
Malaise
Loose joints
Easily dislocated joints
Hair Loss
Vitamin D deficiency
Weight Gain
Weight Loss


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?
Who is researching paralysis in ME?


Image by JS - Posters and ME




For more on paralysis see this post from our facebook.






MD