ULTRA-COMPREHENSIVE ME/CFIDS SYMPTOMS AND SIGNS LIST

Bron: Jodi Bassett, 2004 (www.ahummingbirdsguide.com)

ME/CFIDS is a severe acquired systemic illness. It manifests symptoms predo­mina­te­ly based on neurological, immunological and endocrinological dys­func­­tion and occurs in both epidemic and sporadic forms. The severity of symptoms varies unpre­dictably from week to week, day to day, even hour to hour. Some symptoms can be extremely severe, and in rare instances ME/CFIDS can also be fatal. Characteristics/signs of ME/CFIDS include: Physical as well as cognitive exertions exacerbate all other symptoms. Activity rhythms in the physical, cognitive and emotional realms are unpredictable. Significantly lower peak oxygen consumption. Low cardiac reactivity to cogni­tive stress. There is clinical evidence of immune system activation in the absen­ce of viral exposure and/or associated with inappropriate events such as physical exercise and stress. Severe and prolonged exacerbation of illness if activity limits are transgressed too deeply or too often.

 CARDIAC & CARDIOVASCULAR SYMPTOMS

ð Sensations of chest pain, chest pressure or fluttering sensations in the mid-chest.
ð Light-headedness and/or syncope (fainting), lower than normal blood volume, low blood pressure: Hypotension.
ð Reduced maximum heart rate and/or an elevated resting heart rate.
ð Extreme pallor or edema (swelling of the hands and feet).
ð Neurally Mediated Hypotension (NMH) low blood pressure which occurs when there is an abnormal reflex interaction between the heart and the brain) which can also oc­cur with Delayed Postural Hypotension (usually delays are around 10 minutes or more).
ð Postural Orthostatic Tachycardia Syndrome - POTS (a heart rate increase of 30 bpm or more from the supine to the standing position within ten minutes or less) which can also occur with Delayed Postural Orthostatic Tachy-cardia Syndrome (usually delays are around 10 minutes or more).
ð Palpitations (skipped heart beats), tachycardia (rapid heart beat - up to 150 bpm), premature atrial and ventri-cular contractions (early or extra eartbeats), various arrhythmias (abnormal heart rhythms) or ectopic heart beats (a contraction of the heart that occurs out of its normal rhythmic pattern, it may feel like a thumping sensation in the chest) can all occur.

COGNITIVE & EMOTIONAL SYMPTOMS

ð Slowed retrieval of long term memories and difficulty making and consoli­da­ting memories (particularly short term memories).
ð Prosopagnosia: not being able to recognize faces, even those of close friends and family, (facial agnosia) and also a difficulty associating faces with names.
ð Multitasking problems and an inability to learn to perform new tasks. (as well as forgetting how to perform routine tasks).
ð Volitional problems; difficulty starting or stopping tasks and/or cognitive slowing (tasks can take much longer than usual).
ð Impairment of concentration. 
ð Difficulty with visual and aural comprehension; Difficulty following oral or written directions, trouble distinguishing figure from ground and delayed speech comprehension. Greater difficulty with auditory than visual memory is common.
ð Paraphasia - incorrect word selection, such as using the wrong word from the right category or using a word that sounds similar to the correct word but has a different meaning.
ð Word blindness - inability to recognize words.
ð Word, letter and short term ordering problems, for example; transposition - reversal of letters or numbers, or words when speaking or writing (pseudo­dyslexia).
ð Difficulty/inability to understand speech (Wernicke's Aphasia) and/or an in­ability to express language ie.speak (Broca's Aphasia). Difficulty pronouncing words intelligibly (Dysarthria).
ð Inability to locate the words for writing (Agraphia) and/or problems with reading (Alexia).
ð Loss of arithmetic skills, inability to do simple addition, count money etc (Dyscalculia).
ð Perceptual and sensory disturbances eg, spatial instability and disorientation and an inability to focus vision.
ð Altered time perception (losing time), feeling 'spaced out' or 'cloudy' or not quite real somehow.
ð Disorders of colour perception - recognizing colors but forgetting what they mean, at traffic lights for example.
ð Hypersensitivity to noise and/or emotional overload.
ð An exaggerated response to even small amounts of additional input, inco­ming messages become scrambled or blurred resulting in distorted signals and odd sensations.
ð Difficulty organizing, integrating, and evaluating information to form conclusions or make decisions.
ð Personality changes - usually intensification of a previous tendency, mood swings (emotional lability) Crying easily, excessive irritability etc or intense emotions such as rage, terror, overwhelming grief, anxiety, depression and guilt or sometimes, there can be emotional flattening or situations may be erronously interpreted as novel (due to prefrontal cortex dysfunctions).
ð Anxiety and panic attacks (often not tied to environmental triggers).

DIGESTIVE DISTURBANCES

ð Esophageal spasms (felt as extreme pain in the centre of the chest that sometimes radiates to the chest or mid-back).
ð Difficulty swallowing (or an inability to swallow altogether) or esophageal reflux (heartburn).
ð Great thirst and/or increased appetite and/or food cravings or lack of appetite.
ð Inability to tolerate much fat in the diet (gallbladder problems).
ð Changes in taste and smell, an increased sense of smell or bizarre smells. Strange taste in mouth (bitter, metallic).
ð Multiple new food allergies and intolerances.
ð Bloating. abdominal pain, nausea, indigestion or vomiting.
ð Intense gallbladder pain (in the upper right quadrant of the abdomen) or liver pain, tenderness or dis-comfort. Liver problems can lead to a poisoned feeling, and alcohol intolerance is extremely common.
ð Diarrhea, constipation or an alternation between the two.

ENDOCRINE & NEUROENDOCRINE DISTURBANCES

ð Thyroid pain, inflammation and/or dysfunction (usually secondary hypo­thyroidism) and/or adrenal gland dysfunction (aspects of both overactive and underactive adrenal function) and/or pituitary dysfunctions.
ð Loss of thermostatic stability - subnormal body temperature and marked diurnal fluctuation (temperature fluctuation throughout the day) and/or poor temperature regulation - suddenly feeling cold in warm weather and/or recurrent feelings of feverishness and/or hot flashes particularly involving the upper body.
ð Sweating episodes (profuse sweating, sometimes even when cold) - with the sweat often having quite a sour smell.
ð Cold hands and feet, sometimes on only one side.
ð Swelling of the extremities or eyelids.

EXERCISE & STAMINA

ð A feeling of agitated exhaustion (feeling 'tired but wired') is common.
ð A sudden unexpected feeling of being 'high' can occur (due to neurological malfunctions) leading to (usually short) bouts of physical hyperactivity.
ð Impaired cognitive processing when engaged in challenging physical exertion and/or a reduced maximum heart rate and/or a drop in body temperature and/or dyspnea (shortness of breath) with exertion.
ð Loss of the natural antidepressant effect of exercise.
ð Severe muscle weakness - paresis (Note that problems arise from sustained muscle use, they may function normally to start with but pain and weakness develop after very short periods of use and often come on very suddenly) or paralysis.
ð Post-exertional malaise, 'fatigue' or pain which is often delayed until 12 - 24 or even 48 hours after trivial exertion (compared to pre illness levels of activity), that can last for days, weeks or months afterward.

HEADACHES

ð Onset of a new type, severity or pattern of headaches is common; These can be experienced as a feeling of extreme pressure felt at the base of the skull and/or severe pain or sensation of pressure behind the eyes (or ears). Sinus, pressure or tension headaches (dull continual headaches which are not actually caused by anxiety as the name may suggest) can occur, as can hypoglycemia headaches (generalized prickly ache over the top of the head, sleepiness).

HEARING, VESTIBULAR & SPEECH PROBLEMS

ð Hyperacuity - an intolerance to normal sound volume and range, but particularly sounds in the higher frequen-cies. Sudden loud noises can also cause a startle response (flushing and a rapid heart beat) and there can also be an extreme intolerance to vibration.
ð Tinnitus - ringing, buzzing, humming, clicking, popping and squeaking noises generated in the ear.
ð Hearing loss - sound can be muffled or indistinct or sound strangely flat.
ð Sharp transient ear pain, deep itching in the ears and/or swelling of the nasal passages.
ð Dizziness or Vertigo - a sensation that your surroundings (or you) are spinning wildly (can cause vomiting).
ð Acute profound ataxia (balance problems) and/or a sensitivity to motion/movement (which can affect balance)
ð Nystagmus - a rapid involuntary oscillation of the eyeballs (eyes rolling back in your head).
ð The voice may become very weak, hoarse or fall to a whisper, and then there can be total loss of speech.
ð Slowed rate of speech, sometimes with stammering, stuttering, muddled or slurred speech.
ð Difficulty moving the tongue to speak and/or difficulty getting enough air to speak more than a few words at a time.

HYPOGLYCEMIA

ð Hypoglycemia or hypoglycemia-like symptoms (low blood sugar).

IMMUNE SYSTEM PROBLEMS

ð Painful/swollen lymph nodes especially on the neck, underarms and/or groin, particularly on the left side, and recurrent flu-like symptoms (general malaise, fever and chills, sweats, cough, night sweats, low grade fever, sore throat, feeling hot often and low body temperature).
ð Throat pain, scratchiness and tenderness which often worsens with exercise, exertion, or before relapses. Throat may feel clogged and require constant clearing. Throat may appear red or have characteristic 'crimson crescents' around the tonsillar membranes of the upper throat.
ð Increased susceptibility to secondary infections or a decreased susceptibility to secondary infections. (There is a tendency to catch either every virus going around or none of them).
ð A worsening of existing allergies and/or new severe sensitivities/allergies/intolerances to airborne allergens: pollen mould, animal dander, fur and feathers, dust. Food. Chemical sensitivities: indoor and outdoor chemical air contaminants, drugs and medications, clothing and personal care products.
ð Allergy symptoms: Skin: pallor, itching, burning, tingling, flushing, warmth or coldness, sweating behind the neck, hives, blisters, blotches, red spots, pimples, dermatitis, eczema.
ð Eyes: blurred vision, itching, pain, watering, eyelid twitching, redness of inner angle of lower lid, drooping or swollen eyelids.
ð Ears: earache, recurring ear infections, dizziness, tinnitus, imbalance.
ð Nose: nasal discharge or congestion, sneezing.
ð Mouth: dry mouth, increased salivation, stinging tongue, itching palate, toothache.
ð Throat: tickling or clearing, difficulty swallowing.
ð Lungs: shortness of breath, air hunger, wheezing, cough, mucous or recurrent bronchial infections.
ð Heart: pounding or skipped heartbeats, chest tightness.
ð Gastrointestinal tract: burping, heartburn, indigestion, nausea, vomiting, abdominal pain, gas, cramping, diarrhea, constipation, mucus in stool; frequent, urgent or painful urination, bedwetting (in children).
ð Muscular system: muscle fatigue, weakness, pain, stiffness, soreness.
ð Central nervous system: headache, migraine, vertigo, drowsiness, sluggishness, giddiness.
ð Cognition: lack of concentration, feeling of 'separateness', forgetting words or names, anxiety, tension, panic, overactivity, restlessness, jitteriness, depression, PMS.

JOINT PROBLEMS

ð Significant myalgia (pain) in joints is often widespread. The most common joints affected are knees, ankles, elbows, hips but pain in the fingers also occurs as does aching in the joints.
ð Gelling (stiffness) in the joints that develops after holding a position for awhile, usually sitting or upon awakening or be caused by changes in temperature or humidity.
ð Stiff slow gait (often with legs quite wide apart). Difficulty with tandem gait.

MUSCLE PROBLEMS

ð Significant myalgia in muscles is often widespread (sharp, shooting, burning or aching pain).
ð Transient tingling, numbness and/or burning sensations (or other odd sensations) in the face or extremities (paresthisias).
ð There is sometimes atrophy of specific muscle groups (a shrinking in size visible to the eye)
ð Inability to form facial expressions leading to a 'slack' facial appearance and/or a loss of ability to chew/swallow.
ð Paresis - severe muscle weakness (Note that problems arise from sustained muscle use, they may function normally to start with but pain and weakness develop after very short periods of use and often come on very suddenly) or paralysis.
ð Tremors and twitches of the muscles (involuntary movements), muscle spasms, which can be extremely severe and painful or there may be spasms of the hands and feet, which can lead to 'clawed' deformities.
ð Loss of co-ordination/clumsiness - difficulty in judging distance, placement and relative velocity (caused by proprioception disturbances, proprioception being the perception of stimuli relating to your own position, posture, equilibrium, or internal condition) Extension or quick rotation of the neck can cause dizziness (also due to proprioception disturbances).
ð Slight hesitation in movement or 'cogwheel' effect with movements.
ð Skin is very sensitive to the touch, there can be also be allodynia - a pain response to stimuli not usually painful and/or spontaneous bruising.

ORAL PROBLEMS

ð Dental decay and periodontal disease (gum disease) are much more common than in the general population.
ð Frequent canker sores (painful sores in the mouth which look like small bumps with white heads).
ð Loose teeth and endodontal (the soft tissue in the centre of the tooth) problems.
ð Temperature sensitivity in the teeth and/or pain.

REPRODUCTIVE SYMPTOMS

ð Menstrual cycles may become shorter, longer or irregular. Periods may also become lighter or disappear altogether (when illness is severe usually).
ð Intensification of ME/CFIDS symptoms before and during a period.
ð Lowered libido.
ð Impotence.

RESPIRATORY SYMPTOMS

ð Erratic breathing pattern and/or episodic hyperventilation.
ð Dyspnea  - air hunger, (often on waking or exertion), which can be severe.
ð Persistent coughing and wheezing can occur.

SEIZURES & SEIZURE ACTIVITY

ð Grand mal seizures (where there is loss of consciousness and motor disturbances), Petit Mal seizures - absence seizures (where you are conscious but unaware of your actions, a person may continue with an activity as though asleep) or Simple partial seizures (do not involve loss of consciousness but produce altered sensations, perception, mood or bodily sensation) can occur
ð Sensory storms/overload phenomena (hypersensitivity to light, sound, vibration, speed, odours and/or mixed sensory modalities)
ð Myoclonus (strong involuntary jerks of the arms, legs or entire body)

SKIN, HAIR & NAILS

ð Skin: extreme pallor, rashes, dry and peeling skin, acne, spontaneous bruising, fungal infections, butterfly rash on face, flushing of face, fingerpads may be atrophic so that the fingerprints are hard to see, skin may become red and shiny (after a substantial period of illness usually).
ð Hair: loss and poor quality regrowth.
ð Nails: vertical ridges, bluish nail bed, brittleness, fungal infections.

SLEEP PROBLEMS

ð Unrefreshing sleep (waking up feeling worse than when you went to bed).
ð Reversed or chaotic diurnal sleep rhythms (ie. your body clock resets itself inappropriately).
ð Insomnia - difficulty initiating or maintaining sleep or Hyposomnia - lack of sleep.
ð Hypersomnia - excessive sleeping (common in the earlier stages of the illness only).
ð Very light sleep.
ð Unusually vivid nightmares.
ð Dysania (morning fog).
ð Temporary paralysis after sleeping (also called waking paralysis, can last from minutes to hours) and/or early waking states (where you are neither asleep nor awake which can last for minutes or many hours).
ð In severe illness patients can become unconscious, comatose for up to 23, 24 hours a day (the brain becomes unable to maintain wakefulness).

URINARY TRACT PROBLEMS

ð Urinary frequency and bladder dysfunction, uncomfortable or painful/burning urination (Dysuria), difficulty passing urine or incontinence and/or nocturia (excessive urinating at night).

VISION & EYE PROBLEMS

ð Photophobia (extreme sensitivity to light). Oscillating or diminished pupillary accommodation responses with retention of reaction to light.
ð Pain or burning sensations in the eyes, floaters, spots and scratchiness in vision, sluggish focus, an inability to focus or accommodation difficulty (difficulty switching from one focus to another ) can all occur as can double, tunnel or blurred vision, night blindness and/or a transient loss of vision and/or loss of depth of field, less ability to make figure/ground distinctions.
ð Nystagmus - a rapid involuntary oscillation of the eyeballs (eyes rolling back in your head).
ð Tearing and dry eye.

WEATHER SENSITIVITY

ð Intolerance of extremes of hot and cold (exacerbation of symptoms during temperature extremes). Insomnia, migraines, irritability or generally 'feeling off' a day or two before the weather changes. Changes in temperature or humidity can cause stiffness or increased aching or pain in the muscles..
ð Changes in barometric pressure can cause night sweats and spontaneous sweating during the day.

WEIGHT CHANGES

ð Marked weight gain (often independent of dietary changes) or marked weight loss (often independent of dietary changes), rapid weight loss can also occur despite copious amounts of food being eaten.

ME/CFIDS FATALITIES

ð Most deaths from ME/CFS, around two thirds, are due to organ failure (according to the National CFIDS Association). Death can also occur as a result of secondary infections in a similar way to AIDS, or be due to severe cardiac irregularities or problems with maintaining breathing.

CO-MORBID ENTITIES:

 (Note that some conditions, such as NMH for example, are instead included in the general symptoms list because they are so central to ME/CFIDS)

ð Increased tendency for Mitral Valve Prolapse, especially in children (breathlessness, fatigue, edema).
ð Viral myocarditis - inflammation of the heart (usually of little consequence but which can sometimes lead to substantial cardiac damage and severe acute heart failure. It can also evolve into the progressive syndrome of chronic heart failure. There have been sudden deaths associated with exceptional physical exertion in patients with viral illnesses).
ð Pericarditis (the outer layer of the heart, pericardium, is inflamed. Symptoms include chest pain, shortness of breath, and rapid, shallow respiration)..
ð Secondary or reactive depression (as with any other chronic illness) or organic depression.
ð Irritable Bowel Syndrome.
ð Raynauds phenomenon (poor circulation).
ð Shingles.
ð Systemic yeast/fungal infections are common (eg. Candida).
ð Multiple Chemical Sensitivity Syndrome MCS.
ð Carpal tunnel syndrome (weakness, pain, and disturbances of sensation in the hand).
ð Pyriform muscle syndrome causing sciatica.
ð Positive Fibromyalgia tender points (FMS) and Myofascial trigger points (MPS) are common.
ð Temporomandibular Joint Syndrome TMJ (spasms of the jaw muscles causing intense pain).
ð Hashimoto's thyroiditis.
ð Sicca Syndrome.
ð Endometriosis (the presence and growth of functioning endometrial tissue in places other than the uterus that often results in severe pain and infertility) may be more common in ME/CFIDS.
ð Dysmenorrhea - menstrual pain experienced a week before, during and a few days after periods (other symptoms include; headache, suprapubic cramping, backache, pain radiating down to anterior thigh, nausea and vomiting, diarrhea, syncope).
ð More severe or new onset PMS.
ð Migraines (nausea, vomiting, head pain, light and noise sensitivity which can last for hours or days).
ð Restless Legs Syndrome RLS.
ð Sleep apnea.
ð Irritable Bladder Syndrome.
ð Cystitis (inflammation of the urinary bladder).
ð Prostatitis (inflammation of the prostate gland).
ð Sjogrens syndrome (autoimmune disorder affecting moisture producing glands in the body).

 

REFERENCES

 All symptoms/signs are taken from the following ME/CFIDS books, I've just put them all in the one place (and in the form of an easy to read list).

³ Bell, David S MD 1995, The Doctor's Guide to Chronic Fatigue Syndrome, Perseus Books, Massachusetts.
³ Berne, Katrina PH.D 2002, Chronic Fatigue Syndrome, Fibromyalgia and other Invisible Illnesses, Hunter House, California Colby, Jane 1996, ME: The New Plague, Ipswitch Book Company Ltd, Ipswitch.
³ Macintyre, Anne DR 1998, M.E. Chronic Fatigue Syndrome: A Practical Guide, Thorsons Publishers, London.
³ McGregor, Neil MDSc, PhD & Meirleir, Kenny De MD, PhD (ed) 2003 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Haworth Medical Press, New York.
³ Verillo, Erica F & Gellman, Lauren M 1997, Chronic Fatigue Syndrome - A Treatment Guide, St. Martin's Griffin, New York.