Saturday 13 May 2023

The True Symptoms of ME and Severe ME


Myalgic Encephalomyelitis (ME) is a chronic, fluctuating, multi-systemic, neurological disease with many organ and bodily systems affected, producing a myriad of symptoms. It is characterized by neurological, immune, cardiac, energy production and ion transport dysfunction. The main feature is exertion intolerance where there is severe worsening of symptoms following any exertion. 

There are several levels of severity in ME, ranging from mild to profound ME and which include mild, moderate, severe, very severe and profound ME. Within each range of severity are other levels which means that within the mild range of ME  there may be significant impact on an individual’s health. Severe to very severe ME sufferers are profoundly affected.  They can be completely immobile, lying still in darkened rooms, requiring help with their basic needs.

People with ME can experience debilitating pain, inability to be active, lack of energy (ME is an inability to properly generate energy which prevents sufferers from being active mentally or physically), cognitive difficulties, multiple sensitivities, a range of other symptoms associated with post-exertional neuroimmune exhaustion (PENE)  - the body and brain’s inability to recover after using even small amounts of energy, and marked fluctuation of symptom severity from day to day or hour to hour.

The physical symptoms of ME can be as disabling as multiple sclerosis, systemic lupus, rheumatoid arthritis, congestive heart failure and other chronic conditions. Research shows that people with ME score lower overall on health-related quality of life tests than most other chronic conditions.

Very few people make good progress or recover, many can remain ill for a number of years and may not get better. Feedback shows that those who experience recovery and remission may relapse so it may always be necessary to manage the illness to avoid relapse. Feedback shows us that people who experience remission don’t go back to complete full health the way they felt before they became ill, but they do recover sufficiently to lead a fairly fulfilling life. 

Symptoms in Myalgic Encephalomyelitis (ME) 

Research shows, due to the severity of symptoms, 75% of people with ME are unable to work and 25-29% are unable to leave their home or bedroom due to profound symptoms. ME is more debilitating than many chronic illnesses including multiple sclerosis, chronic renal failure, lung cancer, stroke, and type 2 diabetes.

Symptoms can fluctuate and vary in severity. Individual symptoms vary widely in severity and people may have some symptoms more severely than others. ME can be unpredictable - symptoms may come and go - some symptoms may disappear and new symptoms may come along, or there may be changes in how they improve or how bad they are over time. 

A person's experience with ME and symptoms associated with ME can vary enormously. Not everyone will experience the same symptoms so it's important not to compare yourself or someone who has ME to another person who has ME. 

Symptom management should not be delayed until a diagnosis is established. Management should be tailored to the specific symptoms the person has and be aimed at minimising the impact of daily life and activities on symptoms and exertional response, i.e., PENE.

NB: The presence or absence of ‘fatigue’ is largely irrelevant in determining an ME diagnosis. 

List of Potential Symptoms and Features in ME

Here is a list of potential symptoms that can occur with ME, including symptoms as described by those who responded to a question posed by ME advocate/carer/writer Greg Crowhurst and his wife Linda when they looked for more information and recognition of the true symptoms of ME and people’s actual experience of the illness.

Post-Exertional Neuro Immune Exhaustion (PENE)

is the cardinal feature of ME as per the International Consensus Criteria (ICC). PENE is sometimes referred to as ‘payback’ / ‘crash’ / ‘relapse’/’PEM’


Lack of energy 

most of the time which feels different from ordinary fatigue. Ability to make energy at cell level is lost.


Persistent pain

Chronic nerve pain

Crushing pain

Global wide-spread pain

Muscle pain

Joint pain

Jolts of pain

Increased sensitivity to pain

Painful feet

Glandular pain

Sore throat (recurrent)


Swollen glands


Trigeminal neuralgia

Occipital neuralgia

Chest pain

Back pain

Twitching muscles or cramps

Abdominal pain (stomach or bowel problems)

Costochondritis (inflamed chest wall)

Skin crawling sensations

Burning itching

Stabbing pain


Skin pain

Eye pain, back of eyes pain

Vein inflammation pain

Severe menstrual pain





Generalised head pain

Neck pain


Cognitive dysfunction:

Problems concentrating, e.g. an inability to follow conversation

Lack of ability to process information

Loss of ability to plan

Loss of ability to think

Loss of memory

Poor short term memory

General forgetfulness

Loss of speech

Slowed 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

Inability to read (without a learning issue present)

Inability to write (without a learning issue present)

Problems with thinking 

Cognitive overload

Reduced attention span

Word-finding difficulties

Inability to or organise thoughts and/or speech


Cardiac issues:





Orthostatic intolerance


Insufficient increase in blood pressure on exertion

Reduced blood flow

Arterial elasticity dysfunction

Reduced heart rate variability during sleep suggests a pervasive state of nocturnal sympathetic hyper-vigilance and may contribute to poor sleep quality

Vascular abnormalities suggest there is insufficient circulating blood volume in the brain when in an upright position, and blood may pool in the extremities.

Respiratory issues:

Respiratory depression

Air hunger

Chest pain

Laboured breathing

Breathing difficulty

Pins and needles 

Oxygen depletion

Shortness of breath


Multiple sensitivities: 

(intolerance to light/sound/smell/movement/touch/food/materials/other)

Hyperacusis (noise sensitivity)

Photophobia (light sensitivity)

Hypersensitivity to smells

Hyperesthesia (touch sensitivity)

Motion sensitivity

Chemical sensitivity

Drug sensitivity

Food sensitivity

Alcohol sensitivity/intolerance

Materials sensitivity/intolerance

Vibration intolerance


Visual disturbances:


Inability to focus

Impaired depth perception

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



Total paralysis

Partial paralysis


Elevated oxidative stress markers, ncreased with exertion 

Gastrointestinal Issues:

Loss of appetite


Excessive wind/bloating

Stomach Cramps

Alternating diarrhoea and constipation




Food Allergies (multiple)

Gastric issues

Swallowing difficulties         


Acid reflux


Gut and bowel issues

Food sensitivity

Malabsorption issues

Weight loss


(some of the above symptoms may lead to life threatening malnutrition in severe ME cases)


Genitourinary issues

Urinary urgency

Urinary frequency

Excessive urination at night

Dental issues:

Mercury intolerance (silver fillings)


Temperature control problems/dysregulation & loss of thermostatic stability: 

Sweating profusely

Feeling feverish

Feeling extreme cold, cold extremities

Abnormal body temperature

Temperature fluctuations

Heat intolerance

Cold Intolerance

Poor Circulation


Sleep difficulties:


Lucid dreaming


Sleep disruption - frequent awakening

Unrefreshing sleep

Sleep apnea


Inability to stay awake

Difficulty getting to sleep

Waking for long periods

Restless sleep

Sleep reversal (e.g. sleeping from 4am till noon)

Flu-like symptoms:

Sore throat

Tender Lymph nodes

Susceptible to infection

Susceptible to repeated infections

Slow recovery


More symptoms/features:


Peripheral neuropathy


Muscle spasms (shaking) including in the throat)


Violent, uncontrollable ‘tics’ in limbs

Restless legs

Muscle wasting

Lack of strengt

Heavy limbs

Muscle weaknes

Hyperacusis (sensitivity to noise sometimes alternating with deafness or normal hearing

Tinnitus (constant sound in the ears)

Feeling of toxicit

Loss of sensatio

Paraesthesiae: numbness or tingling in the extremeties

Pins & needles

Loss of proprioception

Sinus problems

Extreme excess mucous

Severe anxiet

Hypnogogic jerk

Hypoglycaemia leading to fainting attack



Black outs


Low and/or high blood pressure



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 is common

Vitamin D deficiency is common

Endocrine dysfunction



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* (see more re fatigue below)

Emotional lability

Compromised immune system

Severe thirst


Excessive saliva

Mouth sores

Kidney infections

Crippling Exhaustion

Chronic infections

Slow recovery from colds/flu


Skin rashes


Loose joints

Easily dislocated joints

Hair loss

Weight los

Weight gain


Compromised immune system


Discomfort all over

Feeling generally unwell (malaise)

Feeling generally exhausted,  exhaustion reached more rapidly





Within each symptom there may be a wide spectrum of severity, from mild to moderate to severe to very severe and profound. There may be marked fluctuation of symptom severity from day to day or hour to hour.

You or a person with ME may only experience some of the symptoms listed above, and not all at the same time. Everyone with ME has a different range of symptoms and severities. 

We are not medics but our advice is to always get new or worsening symptoms checked by your doctor so that they can assess whether the symptoms are part of your ME or are caused by something different.

Treat individual symptoms as far as possible, looking at the worst symptoms first (eg. pain, sleep issues, restless legs orthostatic intolerance, irritable bowel syndrome, migraine, headaches, etc).  

Because of the complexity of ME - its fluctuating nature and the broad range of symptoms, different management strategies work for different people. 

Not all prescription drugs/over the counter medicines/supplements work in the same way for everyone so it may be a case of trial and error getting the drug/medicine/supplement and dosage right for an individual. Some people may be intolerant to drugs/medicines/supplements and may have to look into alternative therapies.

For the millions of patients suffering from the intense symptoms of ME additional research is needed to understand the disease process, identify biomarkers for diagnostic criteria and determine appropriate treatment for care.

For the thousands with Severe ME attending a medical appointment is likely impossible or being seen by a doctor at home unlikely because of the post exertional crisis that occurs when a Severe ME patient  is disturbed by anyone simply entering their bedroom.

Common Symptoms and Features of Severe ME Listed By Severe ME Patient

PENE - Post Exertional Neuro-immune Exhaustion/Post Exertional Crisis
Horrendous Pain (muscle, nerve, joint)
Extreme Weakness
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 malnutrition and in some cases fatalities.


How the person with Severe/Very Severe/Profound ME Feels as well as suffering from the above debilitating symptoms/features (by Greg Crowhurst): 

• Totally dependent

• Extreme discomfort

• Trapped inside a numb, empty shell of a body

• No possible movement

• Total paralysis

• Absolute pain

• Profoundly hypersensitive even to fabrics, e.g. clothes and bed linen

• Helpless

• Blank mind

• Look asleep but totally aware and conscious

• Everything is out of reach

• Completely unable to communicate

• Shaking

• Cannot sit up/stand/move or walk

• Extremely dizzy

• Struggles to breath

• Eating is difficult so the patient must be tube fed

• Cannot comprehend information

• Light hurts and noise damages

• Smells set the person back and they can feel so unwell just from someone’s perfume

• Zero energy to function

• Lives in a fog of inability.


‘The danger is that the lengthy list of symptoms 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.’

~Greg Crowhurst~


* The Problem with ‘Fatigue’

People in the ME community have different severities of ME- Mild, Moderate, Severe, Very Severe, Profound. Within each symptom suffered there is a fluctuating range of severity where symptoms can be either mild, or moderate or severe, or very severe or profound. No matter what the degree of severity people with ME do not describe themselves as being fatigued and they do not relate to ‘fatigue’ as their primary symptom. The presence or absence of ‘fatigue’ is largely irrelevant in determining an ME diagnosis. 

There is a concern that the real symptoms of ME (mild to profound) are being covered up under the term fatigue, or ignored.

"Using ‘fatigue’ as a name of a disease giver 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."


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.




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.

People with Severe ME make up approximately 25% of 

our ME community

People with Very Severe ME are approximately 2% of 

our ME community

We are not sure how many exist with Profound ME

because they are likely permanently confined to bed

 suffering a most horrendous illness and possibly isolated

 without care or without an advocate to be their voice


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 the best avaiilable 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 ~



Resources for Patients, Carers, Doctors, Medical Practitioners & Others

  • About Severe ME and Managing Severe ME
  • Issues of Noise, Light,Touch, Chemical & Movement Sensitivity in Severe/ Very Severe ME 
  • Must Watch Films About Severe ME
  • Supports Online
  • Caring for Someone with Severe ME
  • Managing Severe ME 
  • Measuring and Tracking Symptoms in Severe ME
  • For Doctors & Others - Information about Diagnosis & Management in Adults and Children and in Severe ME.

About Severe ME and Managing Severe ME

Please see our notes in our 'Information for Doctors and Other Healthcare Providers' pdf from page 28 onwards here

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

 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). Please see Wasteland

  • Two films from Dialogues for a Neglected Illness: 'An introduction to the more severe end of the spectrum of ME' and 'Symptoms and Management of Very Severe ME'. (by 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, please see films here



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

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

About the Film  
The film 'Voices from the Shadows' 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.


  • Hope For a Better Moment

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 Crowhurst, person with Severe ME


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 on Facebook



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 and here

Measuring and Tracking Symptoms in Severe ME 

It is important that each patient or the carer tracks and records symptoms and symptom severity, especially in Severe ME to keep an eye on new symptoms and to convey to any medical pravtitioners involved with the patient. 

Please see our information re measuring and tracking symptoms here.

For Doctors & Others

Doctors and Other Healthcare Providers - Information about Myalgic Encephalomyelitis (ME) Diagnosis & Management in Adults and Children, and in Severe ME by ME Advocates Ireland (MEAI) PDF here

In Memory 

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




The long symptom list further above and the How the Person with Severe ME May Feel' list is based on feedback put together by Greg Crowhurst following a study on symptoms in Severe ME.
 (additional sypmtoms have been added from our own feedback and  elsewhere).
Thanks to Greg and his wife Linda for their invaluable insight into 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 in some instances. 

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