Saturday 12 March 2022

About Myalgic Encephalomyelitis (ME)

Image by JS - Posters and ME

Myalgic Encephalomyelitis (ME) is a complex neurological disease involving profound dysregulation of the central nervous system & immune system, dysfunction of cellular energy metabolism & ion transport & cardiovascular abnormalities, as per the International Consensus Criteria, ICC 2011.

ME, which includes mild, moderate & Severe forms of ME, all of which can evidence fluctuating severe symptoms, can involve profound levels of suffering & extreme symptoms which can be life threatening. Life is reduced to basic survival struggling moment by moment, enduring extreme pain & no let up to the high intensity of symptoms. Needs are diverse & complex.

Myalgic Encephalomyelitis (ME) is classified as a neurological illness since 1969 by the World Health Organisation (WHO) ICD G93.3

Myalgic Encephalomyelitis (ME) Classifications:

  • WHO Classification ICD 10 G93.3 classified as a Neurological disorder

  • WHO Classification ICD 11 8E49 classified as a Neurological disorder 

  • SNOMED Classification SCTID: 118940003 classified as a disorder of the nervous system 

  • NASS (HRB) G93.3

Worldwide there are millions missing from their previous active lives having acquired Myalgic Encephalomyelitis (ME). In Ireland there are an estimated 10,000 to 19,000 people living with ME. These figures are extrapolations based on a comparison of prevalence rates worldwide as there is no official collation of data on prevalence here in Ireland. 

However, caution is urged with these figures as the diagnosis of ME is not always made using the best clinical evidence available, i.e. the International Consensus Criteria -M.E.-2011. The criteria for a diagnosis of Chronic Fatigue Syndrome (CFS) for example is less strict and there are concerns that the numbers of true ME patients may be over-estimated as a result. 

ME is an acquired complex neurological disorder affecting multiple systems of the body. The body’s ability to generate and produce energy at a cellular level is seriously impaired meaning systems and organs cannot function properly causing progressive systemic deterioration

Post Exertional Neuroimmune Exhaustion (PENE) is the cardinal symptom of ME. According to the International Consensus Criteria (2011) on ME 'this cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.'  Essentially any action whether physical, cognitive, emotional, social etc drains available energy and if the ability to replace this energy is impaired this can lead to a worsening of all symptoms which can last for days, weeks or months – even causing permanent, non-recoverable systemic damage.

·     Many people with ME are reliant on carers for their basic needs.

·     Deaths among the ME population are usually attributed to secondary causes such as cancers, cardiac issues and suicide

·     Life expectancy is shortened as deterioration becomes cumulative

·     There are NO ME specialist hospital consultants in Ireland

·     The HSE have failed abysmally to adopt and put in place appropriate diagnostic criteria and proper care plan pathways for people with ME.

·     The ‘treatments’ suggested by the HSE have been demonstrated to be ineffective and to cause harm to people and children with ME

·     There is no factual collation of data on numbers with the condition here in Ireland

·      The Royal Academy of Medicine in Ireland concluded in a published paper on ME in Sept 2010 [2] “There is a need for further education of the medical progression on this debilitating condition and there is clearly a need for further research into treatment which directly impacts upon the quality of sufferers”.

See more about Myalgic Encephalomyelitis (ME) in our Information Pack here.

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. When we 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 i.e., Mild has its own range, as does Moderate and so on.

Severity Scale
When we 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 i.e., 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.

Image by 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 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 in the results of a survey by Greg Crowhurst)

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’.

The Problem with Focusing on Fatigue
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.”

Image by Greg Crowhurst

“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

"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."

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 potential 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 potential symptoms in ME which are minimised by emphasis on “fatigue”: -

PENE (as per the ICC) also referred to as Post Exertional Malaise (PEM)
Paralysis: Total/Partial (*more on Paralysis following this section)
Heavy limbs
Muscle weakness
Chronic nerve pain
Crushing pain
Global wide-spread pain
Muscle pain
Joint pain
Jolts of pain
Painful feet
Glandular pain
Sore throat
Swollen glands
Trigeminal neuralgia
Occipital neuralgia
Chest pain
Costrochondritis (inflamed chest wall)
Skin crawling sensations
Burning Itching
Stabbing pain
Sharp pain
Skin pain
Vein pain Inflammation
Severe Menstrual issues
Severe Headaches
Head pain
Neck pain
JS - Posters and ME


Feeling of toxicity
Breathing difficulty
Respiratory depression
Air hunger
Pins and needles
Peripheral neuropathy
Muscle spasms (shaking)
Violent, uncontrollable ‘tics’ in limbs
Restless legs
Muscle wasting
Lack of strength
Hyperacusis (noise sensitivity)
Photophobia (light sensitivity) Hypersensitivity to smells
Visual disturbance:
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

Drug sensitivity
Feeling of toxicity
Multiple Sensitivities
Hyperesthesia (Touch sensitivity)
Movement Sensitivity
Motion Sensitivity
Light Sensitivity
Temperature Sensitivity
Sound Sensitivity
Smell Sensitivity

Allergies (multiple)
Gastric issues
Swallowing difficulties
Acid reflux
Dental issues
Mercury intolerance (silver fillings)
Temperature control problems/ dysregulation (too hot or cold)
Sweating profusely
Temperature fluctuations
Heat intolerance
Cold Intolerance
Gut and bowel issues
Food allergy
Food sensitivity
Malabsorption issues
Weight loss
Oxygen depletion
JS - Posters and ME

Loss of sensation
Loss of proprioception
Sinus problems
Extreme excess mucous
Severe anxiety
Sleep difficulties:
Lucid dreaming
Sleep disruption
Unrefreshing sleep
Sleep apnea
No restful sleep
Inability to stay awake

Hypnogogic jerks
Black outs
Low and/or high blood pressure
Heart issues:
Bradycardia (low heart rate)
Tachycardia (high heart rate)
Orthostatic intolerance
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)
B12 deficiency
Endocrine dysfunction
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
Greg Crowhurst

Loss of speech
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
Excessive saliva
Mouth sores
Kidney infections
Flu-like symptoms
Crippling Exhaustion
Chronic infections
Slow recovery from colds/flu
Skin rashes
Shortness of breath
Loose joints
Easily dislocated joints
Hair Loss
Vitamin D deficiency
Weight Gain
Weight Loss

Two Important Points to Consider
  1. The above list of potential symptoms in ME is very long but is not a limited list of symptoms.
  2. 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'. Within each symptom there are different severities experienced by the patient, so I may have moderate ME, let's say, but I may have severe widespread pain which may improve to a point where I can call it mild.

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'

* Paralysis in Myalgic Encephalomyelitis (ME)

We included Paralysis as a symptom in the long list of potential symptoms in ME above but we would like to highlight this symptom because it is the most horrific and disabling symptom in ME, especially in severe ME, but it is misunderstood and ignored by medics and overlooked by research.

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?

Further Reading

- About ME

  • The Myalgic Encephalomyelitis (ME) label & a Brief Introduction to ME here

  • 'The True Symptoms of Myalgic Encephalomyelitis (ME) here
  • 'Severities in Myalgic Encephalomyelitis (ME)' here
  • 'Post Exertional Neuroimmune Exhaustion (PENE) in Myalgic Encephalomyelitis (ME)' here
  • 'Measuring Symptoms & Severity as well as PENE (also referred to as PEM) in ME here
  • 'Paralysis in Myalgic Encephalomyelitis (ME) and the Dismissal of Paralysis by Clinicians' here
  • 'Diagnosis of Myalgic Encephalomyelitis (ME) in Adults & Children' here (facebook post)

Paediatric ME

  • Myalgic Encephalomyelitis (ME) in Children and Young People Part 1 and Part 2

Criteria/Guidelines on Diagnosis & Management
  • 'The International Consensus Criteria (ICC) & Primer for ME' here

  • 'Doctor-Patient Relationship – What is Required and What Should Be Avoided' here

About the Problems Around ME (political, other)
  • 'The Current Situation in Ireland re Myalgic Encephalomyelitis (ME)' here
  • 'An Illness Misunderstood, Misrepresented & Maligned - ME' here

Harmful Therapies
  • 'Information re Harmful Therapies - Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT)' here

Thanks to Greg & Linda Crowhurst for sharing your experience and knowledge of severe ME and for some information on severe ME.

No comments:

Post a Comment