There are a range of serious physical symptoms, with underlying neuro- immune and other physiological implications, which are highlighted further on.

Currently there is no biomedical pathway in the UK to help the investigation to recognise and validate the most severe symptoms and extreme suffering that people endure for decades on end once diagnosed. There are certain associated conditions that may be co-morbid conditions with ME, namely Ehlers Danlos Syndromes (EDS), Mast Cell Disease, Periodic Paralysis, Mitochondrial Disease, that should be thoroughly explored.

List of Symptoms:

How it affects a personHow it may feel
  • Words back to front.
  • Letters back to front.
  • Memory loss.
  • Confusion
  • Inability to think
  • Difficulty processing information
  • Difficulty with mental maths
  • Difficulty or loss of reading ability
  • Upsetting
  • Silly/foolish/unaware
  • Blank fog
  • Empty-minded
  • Not understanding
  • Unable to explain
  • Lost abilities
  • Unsafe
How it affects a personHow it may feel

Nerve pain

Muscle pain

Head pain

New type of Headache

Eye pain

Allover body pain

Gut pain

Hard to impossible to alleviate

Burning, throbbing, irritated,

Throbbing, crushing, crawling

Inflamed, throbbing, extreme, acute

Sharp, constant, focussed, diffuse

Swollen, dry, irritated, itchy, burning

Stabbing, screaming, agony without end

Throbbing, acidic, intense, hurts to touch

Feels like massive Internal pressure


How it affects a person.How it may feel

Mitochondrial issues

Thyroid issues

Adrenal  Insufficiency

Pituitary issues

Unrefreshed by sleep

No or reduced energy. Limited energy disappears quickly. Limbs feel too heavy to move

How it affects a personHow it may feel
  • Unable to sustain use of muscles
  • Muscle loss

Exhausting, weakening, suddenly unable to hold things, stand, move or walk. Extremely debilitating, incapacitating. Drop things. Pain is increased. Risk of falling or tripping

How it affects  a personHow it feels
  • Post-exertional
  • Neuroimmune exacerbation

Symptom deterioration and reduced energy after effort, even slight, both from thought and/or physical action.

May be delayed onset and long lasting impact. Instantly drained of all energy and ability. Worsened

How it affects a personHow they feel
  • May affect individual muscles or limbs, neck. partial, one sided or total body paralysis
  • May occure with muscle overuse or effort
Exhausting, uncontrollable, unpredictable. Painful. Tense. May last minutes or hours. May feel quite violent in nature. Utterly draining.
How it affects a personHow they feel
  • Gut muscle tremor
May be invisible or fine tremor. Irritating, painful, fluttery, throbbing, crawling or shaky
How it affects a personHow they feel
  • Individual muscles may be affected. Or one sided or total, body paralysis
  • Stiff or flaccid muscle tone
  • May experience loss of sensation, including eyes, mouth or jaw
  • Facial palsy, inability to speak
  • Throat paralysis, gastroparesis, (needs specialist input). Various triggers
  • May be brief or lasting hours, day, months or years, transient or permanent
  • Loss of proprioceptive awareness, maybe periodic, occasional, several times a day/night or all day/night
  • Associated temperature fluctuations
  • Nausea and swelling
Extremely weakening, intensely painful mind blanking, emptying, jelly-like feeling, unimaginable discomfort, numbing, brutal, exhausting, agonising, intolerable, isolating, upsetting, completely disabling, lost, disorientating, confusing. Frustrating, weakening, silent pain. Unable or very difficult to communicate. Ignored. Neglected
How it affects a personHow they feel
  • Disorientation
  • Inability to tolerate movement nearby
  • Difficulty tolerating motion
  • Unable to tolerate movement past you
May be unbearable to be pushed in a wheelchair, pulled backwards or tipped up or tilted or passed by
How it affects themHow they feel
  • Touch sensitivity
  • Inability to tolerate pressure, movement on or contact on skin
  • Difficulty with blood pressure cuff and blood withdrawals, catheters etc
Agony on contact. Difficulty with intimacy. May cry out on contact. Any procedure or help requiring contact is complicated/painful
How it affects themHow they feel
  • Nausea, vomiting, stomach swelling, IBS symptoms
  • Food intolerance
  • Can affect drugs and food absorption
  • Can impact breathing
  • Weight loss/increase

Difficulty in knowing what to eat. Pressure, swelling and tummy ache. Exhausting, distressing, physically isolating, difficulty with diet and enough calories.

May be extremely painful

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How it  affects a personHow they feel
  • POTS
  • Dizziness
  • Blood pressure/heart rate issues
  • Temperature dysregulation
  • Sweating
  • Gut issues
  • Visual disturbance

Cannot stand still, posture related difficulties, feel cold or faint, confused, weak. Heart pounding/fluttering.

Too hot or cold, shivery.

Tipping/tilting intolerable

Light headed, odd sensations, distressing, confusing, disorienting, may feel frightening, unsafe at risk of falls

How it affects a personHow it may feel
  • Circadian Rhythm shifted
  • Sleep paralysis
  • Increase in pain
  • Intense dreams
  • Continually waking or sleeping
  • Difficulty waking up
  • Unrefreshing sleep
Groggy, disoriented, mentally blank, not alert, irritable, sleepy, sleeping through the day. Forgetful, exhausted. Desperate for rest.

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How it affects a personHow it may feel
  • Uncontrollable, sudden changes in mood
  • May be linked to hypoglycaemia

Suddenly weepy, irritable, may feel irritated suddenly, argumentative, out of balance

How it affects a personHow it may feel
  • Pins and needles – not just in hands and feet, other less usual places as well, like back of head
Weak, painful, will not go away like other short-lived pins and needles, can turn into severe pain. Burning, itching feelings that can be prolonged and extremely strong sensations. Flowing sensations
How it affects a personHow it may feel
  • Swings in temperature
  • Difficulty keeping warm or cool
  • Hot sweats, shivering, not necessarily relating to external or room temperature
  • May experience night sweats
  • Extremities may be very cold
Unable to control temperature. May need extra heat or cooling. Clothes may become easily saturated. Extremely uncomfortable, requiring much more energy than available to deal with continually. It may make you feel very unwell with it, like your bones are icy or on fire
How it affects a personHow it may feel
  • Noise sensitivity
  • Tinnitus may accompany it
  • May trigger pain and paralysis
  • Ears may be itchy, hurt, feel inflamed
  • May need personal sound protection, if tolerable and/or environmental protection –  windows, doors, walls, sound-reducing curtains
  • Inflammation

Painful, irritating, disturbing, distressing, isolating, separating and vulnerable.

Can have devastating impact, utterly disabling.

Sound can be heard acutely. Some may tolerate earplugs or noise cancelling headphones/ear defenders, if pressure of them tolerable.

A quiet environment essential

How it affects a person

How it may feel
  • Light sensitivity, light is painful, after image for ages after exposure
  • Minimal exposure may be intolerable
  • May vary in intensity or worsen with deterioration of other symptoms
  • May need photo-reactive or dark glasses
  • Curtains closed, extra thick, additional blinds or black-out curtains

Extremely painful, agony on sudden exposure, may be distressed or irritated by exposure, weakened or paralysed.

May need total darkness –  a huge adjustment

How it affects a personHow it may feel
  • Eyes will not hold focus
  • Tunnel vision
  • Darker vision
  • Loss of colour awareness
  • Staring eyes, difficulty opening eyes
  • Dry eyes, numbness, feel swollen
  • Double letter vision, difficulty reading
  • Lose of visual acuity
  • Eye muscle fatigue

Difficulty seeing clearly, reading , writing, interpreting.

Limited or impossible to read or write.

Confusing, unsafe,, likely to fall or bump into things, spatial disorientation, difficulty with co-ordination and focusing

How  it affects a personHow it may feel
  • Perfume and chemical sensitivity, rashes, swelling, nausea, headaches, throat irritation, swallowing difficulties, weakness. Worsening of symptoms. Coughs, increased mucous
Irritating, irritable, upset, feel sick, feel weakened or itchy, pain impacting other symptoms. Increased hypersensitivity with contact
How it affects a personHow it may feel
  • Paradoxical reactions to drugs, bad reactions
  • May need lower dosages to be effective
  • Need to be aware of packaging/fillers in drugs
  • General and local anesthetic issues  i.e. sensitivity
  • Difficult with dental treatment

Bad reactions, feel horrendous. Impact can be long lasting or damage can be permanent.

A huge concern not knowing what is safe to take

How it affects a personHow it may feel
  • Increased frequency of urination
  • Some people may need a catheter
  • May experience incontinence and/or frequent infections
  • Risk of pressure sores

May experience difficulty with getting to toilet or commode.

May need support and help to use a toilet.

Time consuming and exhausting