Sunday 7 May 2023

About Severe and Very Severe Myalgic Encephalomyelitis (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 is classified as a neurological illness since 1969 by the World Health Organisation (WHO)- ICD G93.3

Myalgic Encephalomyelitis (ME) is one of the most disabling diseases there is. The level of disability can exceed that in Polio, MS, advanced HIV, and other serious illnesses, including the effects of chemotherapy. 

It is hard for anyone to understand the horrors of living with Myalgic Encephalomyelitis (ME). Finding a way to enable the ME - unaware to get a glimpse of the conversation they need to enter into to learn about Severe ME is vital. It is very important to raise awareness amongst both health professionals and society about this group who just don’t exist in the consciousness & experience of those they need knowledgeable, guided & appropriate care from.



'An M.E. patient feels effectively the same every day as an AIDS patient feels two weeks before death.'


Severe Myalgic Encephalomyelitis (ME)
Severe Myalgic Encephalomyelitis (ME)


People with Severe Myalgic Encephalomyelitis require unique care due to the tendency for the illness to be exacerbated by everyday stimuli such as light, noise and movement.

They are often too ill to use a wheelchair or can only do so to a very limited degree. Many need to spend their time lying flat in silence and darkness to avoid deterioration.  Some are tube-fed, incontinent, unable to communicate, allergic to medications, and unable to move.  

For people with Very Severe ME 'resting' implies 'complete incapacitation’ which means that inactivity is the only option. Those severely ill are often incapacitated because it is physically impossible for them to do anything else.  Lying down in a dark room in silence and with absolute zero sensory input, with absolute zero physical movement or cognitive activity. Clothing and bed linen must be comfortable but sometimes no clothing is preferred and particular materials for bed linen essential. The room must have a very moderate temperature; not too hot or too cold.



Greg Crowhurst produced and published a public visual document of very severe ME in 2007, showing his wife Linda speaking of her condition and showing her neurological symptoms. Linda is now bedbound barely able to move and unable to feed herself. (Please note that you may need to mute the volume because there are very loud adverts shown ahead of the film)

See the film 'Hope For A Better Moment' which features Linda via this link



Severe/Very Severe ME equals severe illness and multi-system dysfunction.

Those with very severe Myalgic Encephalomyelitis (ME) experience profound levels of suffering and extreme symptoms, which can be life-threatening. Life may be reduced to basic survival, struggling moment by moment while enduring extreme pain.

For some there is no let up to the high intensity of their symptoms and their needs are diverse and complex.

Common Symptoms and Features of Severe ME include:

PENE - Post Exertional Neuro-immune Exhaustion/Post Exertion Crisis
Pain (muscle, nerve, joint)
Paralysis (partial or full body)
Spasms (muscles inc throat)
Severe Digestive problems
Minimal to zero energy levels, resulting in the patient being housebound or bedridden
Severe generalised continuous throbbing, burning & stabbing pain
Severe continuous headache
Hyperaesthesia/extreme sensitivity to touch
Abdominal pain, worse after food, this may be so severe as to interfere with nutrition
Problems with eating and drinking, chewing and swallowing, this can be due to either general weakness or actual dysphagia, and this may necessitate tube feeding
Food Allergies
Sleep disturbance, possible hypersomnolence or difficulty sleeping on account of pain and headache (insomnia)
Major problems with cognition, concentration and short-term memory
Extreme sensitivity to light and sound
Multiple chemical sensitivities
Persistent sore throats
Myoclonic jerks
Cardiac problems
Compromised immune system
Hyper Sensitivities - intolerant to light/sound/smell/movement/touch – profoundly hypersensitive to everything
Cognitive problems
No energy - Ability to make energy at cell level is lost
Pins and needles
Feeling ill
Extreme discomfort
Temperature Dysregulation
Immobile - No Possible movement
Absolute pain
Profoundly hypersensitive even to fabrics, e.g. clothes and bed linen
Blank mind
Look asleep but totally aware and conscious
Everything is out of reach
Completely unable to communicate
Cannot sit up/stand/move or walk due to orthostatic intolerance
Dizziness & balance problems
Struggle to breath
Light hurts and noise damages
Stroke-like experiences
Smells set the person back and they can feel so unwell just from someone’s perfume
Zero energy to function
A fog of inability
Impaired consciousness
Blackouts and coma-like states

And the list goes on, it is limitless. ME can cause dysfunction in all the major systems - neurological, immune, endocrine, cardiovascular, musculoskeletal, gastrointestinal, respiratory, and genito-urinary, which is why people with Myalgic Encephalomyelitis have so many 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’.

The symptoms experienced by someone with Severe/Very Severe ME can be unimaginable - the level of highly tormenting hypersensitivities to ordinary things are both distressing and attacking, adding to the difficulty of getting safe, supportive, and experienced care.

The sheer severity of suffering experienced by patients with the above symptoms can actually be worse than that suffered by patients with other chronic conditions such as multiple sclerosis and cancer.

The extreme severity of the person with severe ME can be a trigger to disbelief, as the doctor may find it difficult to accept that the patient not only has to lie in a darkened room but has to wear eye protection in addition.

The abdominal pain may be so severe as to interfere with nutrition, an issue which has been responsible for some fatalities.


‘I cannot convey how much the slightest wrong thing can cause unimaginable suffering and unnecessary endurance of intolerable levels of pain and other symptom deterioration, due to my profound levels of sensitivity to sound, light, movement, motion, perfume/chemical sensitivity.

The slightest wrong movement, sudden exposure to perfume, light, coughing, talking, clicking, banging or drilling sound, can trigger hours to days of unbearable paralysis, weakened muscles, shaking muscle spasms, intensified pain, massive headache, a completely blank mind, with every thought lost, just like that.

What is worse is knowing that a little extra awareness or care might make the difference between hours of paralysis or not: it is the unnecessary impact of small things that causes great dismay.’

~ Greg Crowhurst ~

Issues of Noise, Light,Touch, Chemical & Movement Sensitivity in Severe/ Very Severe ME 

Carers and others need to be aware of issues of noise, light,couch, chemical & movement sensitivity in Severe/ Very Severe ME, see more in Notes from Greg Crowhurst

Measuring and Tracking Symptoms in Severe ME 

See our information re measuring and tracking symptoms here

How do people with Myalgic Encephalomyelitis become so extremely ill?

Some people with Severe Myalgic Encephalomyelitis (ME) may have been severely affected from the first day of the illness. In other cases a 'milder' form of Myalgic Encephalomyelitis (ME) may worsen and become severe. In some people the severity increases over time. The progress of the disease is unpredictable, and few recover fully.

Some people in the mild or moderate categories have been treated so badly by medics and mismanaged to the point that they deteriorate and drop to a very severe level of ME.



People with Severe ME make up approximately 25% of our ME community.

People with Very Severe ME are approximately 2% of our ME community.



Challenges for the person with Severe ME when faced with an ME/Severe ME-Unaware/Uninformed Doctor

Despite the relatively high percentage of people with Severe ME there is very little understanding of what people with Severe and Very Severe ME go through and little knowledge of how to safely look after them at home and elsewhere.

Most medics, ME- unaware medics do not know how to look after people with Severe/Very Severe ME, and the lack of awareness and education in a hospital or other healthcare setting can be difficult and dangerous for a person with Severe/Very Severe ME.

Most medics don’t know anything about ME because it doesn’t feature on medical school curricula, it’s not taught to professionals and there’s no directive calling for adoption and use of important gold standard guidelines like the International Consensus Criteria (ICC) 2011. There’s no national policy on ME.

Lack of knowledge can lead the doctor to adopting a strategy of avoidance, refusing to accept that they have a duty of care to the patient, and regrettably many patients with Severe ME suffer near total neglect by their doctors.


‘The main lesson I learnt is that one needs to be proactively protective of one’s patient, especially against other professionals, and disbelieving friends and relatives.

For professionals affected by “Furor Therapeuticus”, i.e., the feeling that one has to do something, it is better to remember that there is no proven curative treatment, and that they should perhaps concentrate on the “Do No Harm” element in the Hippocratic Oath.’

~ Dr Nigel Speight ~




More Must Watch Films About Severe ME


'Wasteland' is a film by Greg Crowhurst which visually documents his wife Linda's very severe ME. (Please note that you may need to mute the volume because there are very loud adverts shown ahead of the film)



Two films from Dialogues for a Neglected Illness (Natalie Boulton & Josh Biggs)

‘Very severe ME can be a very frightening disease, not only for the family and carers of the severely ill patient, but also for doctors who are unlikely to have any previous experience of these most severe presentations. Patients can die from very severe ME and it’s complications, and this is more likely to happen when their condition is badly managed by ill-informed doctors. It is important that doctors listen to the patient, or if the patient wishes, to their carers.  Specialist help should be available for these very severe cases.’


The first film is an introduction to the more severe end of the spectrum of ME and the second film gives a more detailed look at very severe ME

See films here




‘Voices from the Shadows’, a very informative and educational piece, is a film about Severe ME that is available online and on dvd.

The film shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper.

‘Voices From the Shadows’ was filmed and edited between 2009 and 2011 by the brother and mother of a person with ME in the UK. The film shows the devastating consequences that occur when people with ME are disbelieved and the illness is misunderstood.

Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the reality of this physical illness and the severe relapse or exacerbation of symptoms that can be caused by increased physical or mental activity, over exposure to stimuli and by further infections.

An incorrect attitude and very mistaken belief in behavioural and psychological causes, particularly when ME becomes very severe and chronic, following mismanagement, is still taught to medical students and healthcare professionals in the UK.

As a consequence, situations very similar to those shown in the film are taking place right now in Ireland, in the UK and in other countries.

The original 1 hour  film is available to view free of charge on Vimeo at this link

(enter the promo code VOICES at the $3 button)

See other details and a shorter 30 minute version of the film here



Supports online

The 25% Severe ME Group (UK) was set up to support all who have the severe form of ME and those who care for them. This includes people who are housebound, bedbound and dependent on help for physical functions - people who may be tube fed, who suffer from great pain and multi-sensitivities along with other horrific disabling symptoms. 

Severe ME Remembrance Day, set up by the 25% Severe ME Group, aims to bring public attention to the illness for the sake of all those presently suffering from Severe/Very Severe Myalgic Encephalomyelitis and to remember all those who have died from ME - ' a day to honour the strength of spirit of all those who have endured  and continue to endure decades of suffering profound physical dysfunction and yet receive little, or no recognition or help, but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability.'

25% Severe ME Group website

25% Severe ME Group on Facebook




We don’t have official data on how many people have ME in Ireland or data on how many with Severe ME.

We could make an estimate that there are 100s of people with Severe ME given the estimated prevalence rates* and taking into account the approx 25% with Severe ME...which could be somewhere between 2500 and 4750 possible patients

That’s a lot given that there are no official guidelines for ME nor HSE notes for Carers of people with ME.


* International Prevalence rates suggest that there are somewhere between 10,000-19,000 people with ME in Ireland



We remember Aylwin Catchpole

Aylwin suffered from ME for more than 20 years, please see more about her here

“I am a ghost in the land of the living – forgotten, ignored and drifting on the edges of life, whispering my message in the ears of the lucky ones who can participate in life...I have Myalgic Encephalomyelitis. I call it paralysis, muscle and cardiac failure, brain injury, a living plague that kills only slowly, but does kill.”

 ~ Aylwin (Jennifer) Catchpole~ 

Person with Severe ME patient

Died in August 2010

Caring for Someone with Severe ME

See post for information about caring for someone with Severe ME herehere & here 

Managing Severe ME 

In order for family carers, agency carers, doctors and other healthcare staff to manage Severe ME they would be required to know about Severe ME, in particular they would need to know details of the the complexities that separate Severe ME from less disabling severities in ME; they would need to recognise the distinctions between the illness as suffered by someone with mild or moderate ME and know that those with severe ME suffer a completely different condition, i.e., an horrendous life limiting condition that sees some patients permanently confined to bed, tube fed, suffering various hyper sensitivities, and post exertion crisis in response to the smallest movement, or to someone being near them trying to support them here

Further Reading

Adrenal Issues in ME here 

Paralysis in ME here

Oesophageal Spasms in ME here

Excessive Thirst in ME here

Visual Disturbances in ME here

Malnutrition in Severe ME here

Much thanks to Linda Crowhurst and Greg Crowhurst for content and advice re Severe ME

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance. 

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