About Myalgic Encephalomyelitis (ME)

Image by JS - Posters and ME

Myalgic Encephalomyelitis

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

According to the International Consensus Criteria (2011), Myalgic Encephalomyelitis (ME) is a complex illness that disrupts the nervous and immune systems and affects the body’s energy production and cardiovascular function.

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 which leads to worsening of symptoms and relapse. This is referred to as PENE (post exertional neuro-immune exhaustion) or PEM (post exertional malaise).

ME is one of the significant public health challenges of our time. Despite being profoundly disabling, it remains widely misunderstood. 

Evidence shows that diagnosis and management can be delayed or inconsistent, often due to gaps in medical knowledge and longstanding misconceptions about the condition. Improving awareness and education within healthcare settings is essential to ensure people with ME receive safe, appropriate, and timely care.

Severities

ME affects people at different levels of severity: mild, moderate, severe, very severe, and profound.

Regardless of severity, people with ME commonly experience overwhelming exhaustion and a lack of energy that makes everyday activities difficult. Even small amounts of physical or mental activity can leave them feeling 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-11 classifies ME as a neurological disorder.

• WHO Classification ICD 11 8E49 classified as a neurological disorder grouped under diseases of the nervous system, formerly ICD-10 G93.3 - Neurological
  

  
  

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

The modern reference point used in advocacy discussions is ICD-10 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.

Some 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 multiple organ systems. Because it impacts many areas of the body, it can cause a wide and varied range of disabling symptoms that lead to significant functional impairment.

These may involve dysfunction or abnormalities in the following systems:

• Immune system

• Gastrointestinal system

• Cellular energy metabolism (including mitochondrial function)

• Autonomic and cardiovascular function

• Neurological system

• Endocrine (hormonal) regulation

• Muscular system

• Central nervous system

Research has also demonstrated structural and functional abnormalities in the brain in people with ME.

Because ME affects multiple interconnected systems, symptoms can vary considerably from person to person and often fluctuate in severity over time. Symptom severity can range from mild to very severe.

Potential Symptoms in ME

• Atypical post-exertional response (worsening of symptoms after 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. 

Here is another list of symptoms based on research findings in the De Paul University DSQ-2 Symptom and Severity Questionnaire here (questions 13-91)

Sample of the De Paul Symptom & Severity Questionnaire from

(PDF) DePaul Symptom Questionnaire 2 (DSQ-2)

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

Greg Crowhurst and Linda Crowhurst compiled a wide-ranging list of potential symptoms of Myalgic Encephalomyelitis (ME) based on survey responses shared through their website Stonebird. Their list reflects lived experience and is intentionally broad, capturing the multi-system nature of ME. Below is a structured summary of the kinds of symptoms included in their survey findings:

Core Feature

• Post-Exertional Malaise (PEM) – worsening of symptoms after physical, cognitive, emotional, or sensory exertion (often delayed and prolonged)

Neurological / Cognitive

• Cognitive issues (described by some as 'brain fog')

• Memory problems (short-term especially)

• Difficulty concentrating

• Slowed information processing

• Word-finding problems

• Sensory overload

• Hypersensitivity to light, sound, touch, smell

• Headaches or migraines

• Poor temperature regulation

• Sleep disturbance (unrefreshing sleep, insomnia, hypersomnia)

Pain

• Muscle pain (myalgia)

• Joint pain (without inflammation)

• Nerve pain

• Burning sensations

• Chest pain

• Abdominal pain

Autonomic Dysfunction

• Orthostatic intolerance

• Dizziness or lightheadedness

• Palpitations

• Blood pressure instability

• Sweating abnormalities

• Fainting or near-fainting

Immune

• Recurrent sore throat

• Tender lymph nodes

• Malaise

• Feeling feverish without high temperature

• Heightened sensitivity to infections

• Slow recovery from illness

Gastrointestinal

• Nausea

• Bloating

• Irritable bowel symptoms

• Food intolerances

Muscular / Physical Function

• Profound fatigue (not relieved by rest)

• Muscle weakness

• Heavy or leaden limbs

• Tremors

• Coordination problems

• Reduced stamina

Cardiovascular / Respiratory

• Breathlessness

• Air hunger

• Chest tightness

Hormonal / Other

• Menstrual irregularities

• Adrenal-type symptoms

• Weight fluctuations

• Chemical sensitivities

The survey aimed to show that ME is a multi-system, complex illness, not simply “chronic fatigue. Not every person with ME experiences all symptoms.

*’Comorbidities’ is the simultaneous presence of two or moredisease or medical conditions in a patient.

Two Important Points to Consider

• The above lists of potential symptoms in ME are very long but they are not limited lists.

• The danger is that any list of symptoms evidenced by a person with ME 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 an individual may have moderate ME, but 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

A description of severe ME from the Hummingbirds' Foundation for ME

"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 a 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)

Paralysis is included as a feature in ME in the list of potential symptoms in ME.

We focus on paralysis because it is one of the most horrific and disabling symptoms in ME, especially in severe ME. Despite this, paralysis is often treated as not real - it is misunderstood and overlooked by healthcare professionals and research.

There hasn't been any relevant research into this terrifying feature which mostly occurs in people in the Severe range of ME. The only scientific study we 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 used to refer to paralysis in ME to help 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.

Important Questions

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.

Graded Exercise Therapy (GET) is discontinued as a treatment for ME because it is harmful. GET 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 treatment for ME.

People with ME - do not agree to do, or attempt to do any therapy based on physical activity or exercise suggested as a treatment 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