About Myalgic Encephalomyelitis (ME)

Image by JS - Posters and ME

Myalgic Encephalomyelitis

Myalgic Encephalomyelitis (ME) is an acquired chronic 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.

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

Severities

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.

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

A good scale that could be used along with the severity categories to determine near exact range is the Bells Disability Scale for example.

Myalgic Encephalomyelitis (ME) Classifications:

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

• 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

Prevalence

Worldwide there are estimated millions missing from their previous active lives having acquired Myalgic Encephalomyelitis (ME). 

In Ireland there are an estimated 10,000 to 21,000 people living with ME in 2024. These figures are extrapolations based on a comparison of prevalence rates worldwide (0.2 - 0.4%) as there is no official collation of data on prevalence here in Ireland.

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. 

Until we have a single biomarker to diagose ME we must see these figures as estimates only; the true estimates are clouded by various issues such as incorrect criteria being used to diagnose ME, misdiagnosis, lack of diagnosis and lack of data collection.

Post Exertional Neuroimmune Exhaustion (PENE)

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.

Image by JS - Posters and ME

Symptoms

ME is a multi-systemic disease with many organ and bodily systems affected, producing a myriad of symptoms.

The broader 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

(please see the more detailed symptom range below as described by ME patients in the results of a survey by Greg Crowhurst, i.e., 'The potential symptoms in ME which are minimised by emphasis on “fatigue”)

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 International Consensus Criteria (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.”

- International Consensus Criteria (ICC) 2011

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

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

Two Important Points to Consider

• The above list of potential symptoms in ME is very long but is not a limited list of symptoms.

• 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.

* 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?

Warning about Exercise & Activity

Graded Exercise Therapy (GET) is contraindicated in anyone with ME. Do not offer people with ME any therapy based on physical activity or exercise as a cure for ME. The cardinal feature of Myalgic Encephalomyelitis (ME) is post-exertional neuroimmune exhaustion (P.E.N.E.). Exceeding the safe activity threshold can lead to serious deterioration. Graded Exercise Therapy (GET) is contraindicated in anyone with ME. Overload phenomena is part of the complex pathophysiology of Severe ME as the body reacts to sensory inputs which it does not have the energy to manage. Minimising the need to ‘react’ is essential as reaction causes a physiological response which affects the already out of balance central and autonomic nervous systems. Being forced to react results in an exacerbation of symptoms. Harmful Graded Exercise Therapy is discontinued and must not be replaced with renamed or rebranded versions, which would be clinically, scientifically and legally unsustainable. The NICE guidance on ME (NG206) includes the following: Do not offer people with ME: • any therapy based on physical activity or exercise as a cure for ME • generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses • any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4) • physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME

NICE ng206 Revommendations

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)

• Greg Crowhurst gives a much fuller picture of the devastation of ME in his article called 'ME - The Fatigue Cover-Up a description of individuals’ actual illness experience, in stark contrast to the simplification of ME described as “Pain, Sleep and Fatigue”.

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

Problems Around ME (political, other)

• 'The Current Situation in Ireland re Myalgic Encephalomyelitis (ME)' here

• 'An Illness Misunderstood, Misrepresented & Maligned - ME' here

Harmful Therapies

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

Thanks to Greg & Linda Crowhurst for information we used relating to patient experience and knowledge of Severe ME