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Severe
ME/CFS :
Experience & Symptoms |
Patient’s Experience
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Some
Possible Symptoms (Marshall et al 2001, Bassett 2005)
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I can’t think |
Cognitive impairments (impaired attention, memory and reasoning) are
among the most frequently reported and least investigated components of
CFS/ME.
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I can’t understand |
Processing
problems, brain fog, intermittent partial or complete memory loss,
recurrent stupor or
stroke-like episodes, tremors, aphasia, ataxia, discalcula, .
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I can’t cope with
noise |
Hyperacusis,
loss
of adaptability and worsening of symptoms with stress
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I can’t speak |
Word
, number and thought sequencing difficulties , information absorbing
difficulties, difficulty with voice production, paraphasia – incorrect
word selection. |
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I can’t sleep |
Reversed sleep
pattern disturbance, hypersomnia, vivid & disturbing dreams |
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I can’t eat |
Food intolerances,
difficulty with swallowing, choking, abdominal pains, problems with
diarrhoea |
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I can’t sit up |
Muscle weakness,
severe pain, palindromic arthropathies. |
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I can’t walk |
Pain, muscle
fatigue, paralysis, persisting dysequilibrium and ataxia, cardiac
arrthmia,
angina-like chest pain |
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I can’t telephone
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Noise sensitivity,
no energy, muscle weakness, loss of memory, concentration, intractable
pain |
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I can’t write
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Pain, weakness,
numbness, parasthesia, cognitive impairment,
agraphia (inability to locate the words for writing),
neurological
changes in motor skills (handwriting, walking gait, vision, etc
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I can’t get to the
toilet
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Muscle dysfunction
and twitching, orthostatic intolerance, Extreme post-exertional muscle
fatiguability, recurrent nausea and profound, incapacitating malaise.
Light-headedness and/or syncope (fainting), lower than normal blood
volume,
hypotension, loss of thermostatic stability, |
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I can’t wash
myself |
Poor coordination,
pain
in muscles, joints, head, back, limbs, chest and stomach |
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I can’t stand up
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Orthostatic
intolerance, muscle fatigue, weakness, difficulty with breathing,
sudden attacks of
breathlessness, dyspnoea ; the more severely affected are unable to
stand unsupported for more than a few minutes. |
Patient’s Experience
|
Some
Possible Symptoms (Marshall et al 2001, Bassett 2005)
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I can’t cook
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Transient
paralysis, pain, brain fog, poor coordination and balance, dizziness,
volitional problems and/or cognitive slowing, loss of fine motor skills. |
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I can’t read
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Dry eyes, pain,
blurred and double vision, difficulty in focusing , swollen and painful
eyelids, word blindness, alexia (problems with reading) |
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Colour hurts my
eyes
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Neuralgia,
disorders of colour perception,
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Touch hurts me
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Hyperesthesia,
light touch can be acutely painful |
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People’s energy
affects me
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Severe lack of
energy to cope, prosopagnosia
- not being able to recognize faces, facial agnosia, impairment of
concentration, difficulty with visual and aural
comprehension, an exaggerated response to even small amounts of
additional input.
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Light hurts me
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Photophobia,
perceptual and sensory disturbances, special instability and
disorientation,
abnormalities of sensation. |
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Food hurts me
|
Food intolerance,
IBS, problems with maldigestion or malabsorption of food,
histamine
intolerance,
esophageal spasms
,
difficulty swallowing, esophageal reflux, changes in taste and smell,
bloating, abdominal pain, nausea, indigestion or vomiting , intense
gallbladder pain,
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