About Myalgic Encephalomyelitis (ME)

Image by JS - Posters and ME

Myalgic Encephalomyelitis

Myalgic encephalomyelitis is a complex, chronic, multi-system physical disease which causes unusually severe disability and can affect people of any age or demographic, including children.

Myalgic Encephalomyelitis (ME) involves 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.

The main feature of ME is a post exertion response that leads to worsening of symptoms and relapse. This is often referred to as PENE or PEM.

ME is one of the great public health challenges of our times. Despite being unusually disabling, it is misunderstood and maligned. The evidence is that both diagnosis and management are too often neglected by lack of medical knowledge and misconceptions. Poor knowledge among healthcare professionals puts people with ME at risk of harm.

Severities

People with ME have different severities of ME - Mild, Moderate, Severe, Very Severe, *Profound. 

No matter what the degree of severity ME patients describe themselves as having no energy to complete daily activities, and following even minor activity patients feel profoundly exhausted and unwell.

All severities of ME, all of which can evidence fluctuating severity of symptoms, can involve profound levels of suffering and extreme symptoms, which lower the persons quality of life. Life is reduced to basic survival struggling moment by moment with no let up to the high intensity of symptoms. Needs are diverse and complex.

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 the severity categories to determine disability/functional ability 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 53,400 to 106,800 people living with ME in 2026, many of whom are likely to be undiagnosed. These figures are extrapolations based on a comparison of prevalence rates worldwide (1%- 2%) 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, e.g., the International Consensus Criteria (2011).

Until a time when 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.

Main Feature 

Post Exertional Neuroimmune Exhaustion (PENE)

Post Exertional Neuroimmune Exhaustion (PENE) is the cardinal feature of ME. It is the hallmark of the disease in which even trivial amounts of activity result in a prolonged exacerbation of symptoms and a reduction in function. Any action whether physical, cognitive, emotional or social drains available energy. The ability to replace this energy is impaired which leads to a worsening of all symptoms - a relapse which can last for days, weeks or months – even causing permanent, non-recoverable systemic damage.

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.

Facts

·    Myalgic Encephalomyelitis (ME) is a complex, acquired multi-systemic disease.

·    ME has one of the lowest scores for quality of life compared to many diseases.

·    ME can severely impair patients’ ability to conduct their normal lives.

·    The cause(s) of ME are unknown, but many individuals with the disease remain ill after an acute infection with symptoms that persist. 

·    There is no diagnostic test or FDA-approved treatment for ME.

·    A significant percentage of people with ME are reliant on carers for their basic needs. Those most severely affected may require 24/7 care and tube feeding.

·    Deaths among the ME population are usually attributed to secondary causes such as cancers, cardiac issues and suicide. Deaths, particularly among people with very severe ME can be attributed to malnutrition.

·     Life expectancy is shortened as deterioration becomes cumulative.

·     Many people with ME are undiagnosed.

·     At least one-quarter of individuals with ME are bedbound or housebound at some point in the disease and most never regain their pre-disease level of functioning.

·     There are NO ME specialist hospital consultants in Ireland.

·     The HSE urgently need to create appropriate guidelines and provide suitable care pathways for people with ME.

·     There is no factual collation of data on numbers with ME 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”.

Image by JS - Posters and ME

Dysfunction

Myalgic Encephalomyelitis (ME) is a complex, multi-system disease that affects many organs and body systems. Because it impacts so many areas of the body, it can cause a wide and varied range of disabling symptoms that leads to functional impairments .

These may include dysfunction in the following areas:

• Immune system

• Gastrointestinal (intestinal)

• Oxidative stress issues

• Mitochondria (reduced cellular energy production and oxygen utilization)

• Cardiac

• Neurological

• Endocrine (hormonal)

• Muscles (including problems at the molecular level affecting ion channels)

• Central nervous system

• Structural and functional changes in the brain

Because ME affects multiple interconnected systems, symptoms can vary significantly from person to person and may fluctuate in severity over time.

Potential Symptoms in ME

• Atypical post-exertional response (worsening of symptoms after physical or mental activity) referred to as PENE or PEM

• Severe debilitating exhaustion not relieved by rest or sleep

• Cognitive dysfunction (“brain fog”, poor memory, slow processing)

• Unrefreshing sleep

• Muscle pain (myalgia)

• Joint pain (without swelling)

• Headaches

• Tender lymph nodes

• Dizziness or lightheadedness

• Orthostatic intolerance

• Temperature dysregulation

• Multiple sensory hypersensitivities (to light, sound, touch, or chemicals)

• Gastrointestinal problems

• Palpitations

• Immune symptoms (sore throat, swollen glands)

• And many other symptoms that are also made worse by exertion of any sort. 

Please see a list of symptoms in the De Paul University DSQ-2 Symptom and Severity Questionnaire which is based on research, starting at number 13 here

Potential Symptoms, Issues, Features and *Comorbidities in ME as Reported by People with ME

PENE or PEM: an atypical post-exertional response (worsening of symptoms after physical or mental activity) referred to as PENE or PEM. This is the main feature and must be present for a diagnosis.

No energy

No strength

Lack of stamina

Disabling exhaustion

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

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                                  

Severe Headaches

Migraine

Head pain

Neck pain

Cramps

Tinnitus

Worsening Perimenopause

Feeling of toxicity

Breathing difficulty

Respiratory depression

Air hunger

Pins and needles

Tingling

Peripheral neuropathy

Tremor

Muscle spasms (shaking)

Twitching

Violent, uncontrollable ‘tics’ in limbs

Restless legs

Muscle wasting

Lack of strength

Hoarseness

Paralysis: Total/Partial especially in Severe ME

Visual disturbances:

Staring

Inability to focus

Poor spatial recognition

Fuzzy/ blurred vision

Double letter vision

Tunnel vision

Eye pain

Dry eyes (do not hold tear film)                   

Itching eyes

Burning eyes

Flashing eyes (open or shut)

Seeing pinpoints of light in the dark

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 easily

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               

Loss of sensation

Numbness

Loss of proprioception ( the body loses its ability to sense its own position, movement, and location in space.

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 (sleep starts)

Dizziness

Vertigo

Black outs

Lightheadedness

Low and/or high blood pressure

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

Vitamin D deficiency

Endocrine dysfunction

Seizures

Unconsciousness

Cognitive dysfunction:

An inability to follow conversation

Lack of ability to process information

Loss of ability to plan

Loss of ability to think

Loss of memory, especially short term memory

Forgetfulness             

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

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

Slow recovery from surgery

Cysts

Skin rashes

Fevers

Shortness of breath

Malaise

Loose joints

Easily dislocated joints

Hair Loss

Weight Gain

Weight Loss

*Comorbidities is the simultaneous presence of two or more disease or medical conditions in a patient.

Two Important Points to Consider

• The above list of potential symptoms in ME is very long but is it 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, but I may have severe widespread pain.

Overfocus 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

Severe ME

From the Hummingbirds Foundation:

"For very severely affected M.E. sufferers there is virtually no ‘safe’ level of physical or mental activity, orthostatic stress or sensory input; no level which does not produce a worsening of symptoms, and perhaps also contribute to disease progression. Even the most basic actions – speaking a few words, being exposed to moderate light or noise for a few minutes, turning over in bed, having hair or body washed in bed by a carer or chewing and swallowing food – cause severe and extended symptom exacerbations in such patients. It is not uncommon to hear of very severely affected sufferers who are unable to bathe themselves (or even be bathed by a carer) more often than once a week, or even once every few weeks, or even less. Some sufferers cannot chew or swallow food any longer and need to be tube fed. Many patients with severe M.E. are no longer able to toilet themselves, and so on. Either sufferers are just too ill to do these things at all, or they cannot tolerate the very long and severe relapses that come after such activities.

For people with severe M.E. even the smallest movement, thought, touch, light, noise or period upright can make their already very severe symptoms far worse. Thus few illnesses demand such isolation and loss of quality of life as severe M.E.

Very often people with very severe M.E. can barely communicate, or even tolerate the presence of another person. This is what makes M.E. such a cruel disease and such an isolating disease. The illness can cause an unrelenting level of disability, suffering and isolation that is just unimaginable to anyone not familiar with very severe M.E.”

Paralysis in Myalgic Encephalomyelitis (ME)

We include Paralysis as a feature in the long list of potential symptoms in ME above. We would like to highlight paralysis because it is one of the most horrific and disabling symptoms in ME, especially in severe ME. Despite this, it is misunderstood and often 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 which mostly occurs in people in the Severe range of ME. 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 understanding about what people with ME are going through, nor adequate medical explanation, only varying hypotheses. 

There is no defining language set, even amongst people with the disease, to help them to identify this most disabling feature clearly or easily, or to articulate the complex symptom experience associated with it. 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 feature in ME, especially in Severe ME?

Who is researching paralysis in ME?

Warning about Exercise & Activity

Graded Exercise Therapy (GET) is not suitable for anyone with ME.

The cardinal feature of Myalgic Encephalomyelitis (ME) is an atypical post-exertional response known as post-exertional neuroimmune exhaustion (PENE), also referred to as PEM (Post Exertional Malaise).

Doing any usual daily activites can cause PENE.

Exceeding the safe activity threshold can lead to serious deterioration. For those with very severe ME this could happen easily, for example, noise from outside the place where an individual is resting can cause PENE, or the movement of someone walking into their room, or the perfume worn by a visitor.

Harmful Graded Exercise Therapy (GET) is discontinued and must not be replaced with renamed or rebranded versions, which would be clinically and scientifically 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

Healthcare Professionals - do not offer people with ME any therapy based on physical activity or exercise as a cure for ME.

People with ME - do not agree to do or attempt to do any therapy based on physical activity or exercise as a cure for ME.

Further Reading

• The meaning of 'Myalgic Encephalomyelitis'here

• 'The True Symptoms of Myalgic Encephalomyelitis (ME)' here

• 'Severities in Myalgic Encephalomyelitis (ME)' here

• 'Post Exertional Neuroimmune Exhaustion (PENE) in (ME)' here

• 'Measuring Symptoms & Severity as well as PENE 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”.

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

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

Criteria/Guidelines on Diagnosis & Management

• 'The International Consensus Criteria (ICC) & Primer for ME' here

  
  

Harmful Therapies

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