Have you got ME ?

Symptoms and signs of ME, all of which are exacerbated by stress, include :

  • Post-Exertional Malaise, which can lead to a catastrophic worsening of symptoms.
  • Chronic Sleep Dysfunction, characterised by non-restorative sleep.
  • There is significant degree of myalgia. Pain can be experienced in the muscles and/or joints, and is often widespread and migratory in nature. Often there are significant headaches of new type, pattern or severity.
  • Neurological/Cognitive manifestations such as brain fog, difficulties in processing information, sensory overload, sound, light and touch sensitivity , inability to focus vision, spatial instability , disorientation , Ataxia, muscle weakness and fasciculations .
  • Autonomic Manifestations including Chronic Orthostatic Intolerance; the inability to maintain a standing position, postural orthostatic tachycardia syndrome (POTS), extreme pallor, intestinal or bladder disturbances , palpitations with or without cardiac arrhythmia, vasomotor instability, and respiratory irregularities.
  • Neuroendocrine Manifestations , including temperature fluctuation, marked weight changes, loss of adaptability and worsening of symptoms with stress.
  • Immune Manifestations, including general malaise, tender lymph nodes, recurrent sore throat, and chemical sensitivity.

According to the Canadian Consensus Document to have ME : " A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations ", plus you must have been ill for at least six months.

Source : Caruthers, et al (2003) "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols," The Journal of Chronic Fatigue Syndrome, Vol. 11 (1) 2003, pp. 7-116. http://www.myalgic-encephalomyelitis.com/ME-CFS-canada-protocol.html

The New International Consensus Criteria (ICC) For ME (2011)

The new biomedical ME International Consensus Criteria (ICC), an attempt to identify the unique and distinctive characteristic symptoms of ME ( Carruthers et al 2011 ), uses the original clinical term of Myalgic Encephalomyelitis , in stark contrast to the prevailing vague, fatigue-based Oxford and CDC criteria which dominate at the moment. To be diagnosed as having ME :

A patient has to meet the criteria for :Postexertional neuroimmune exhaustion :

  • Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
  • Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.
  • Postexertional exhaustion may occur immediately after activity or be delayed by hours or days
  • Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.
  • Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction

They also have to have at least one symptom from three of four neurological impairment categories :

Neurocognitive impairments :

  • Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia.
  • Short-term memory loss:e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory.

Pain :

  • Headaches:e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches.
  • Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is noninflammatory in nature and often migrates. e.g. generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain.

Sleep disturbance :

  • Disturbed sleep patterns:e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares
  • Unrefreshed sleep : awaken feeling exhausted regardless of duration of sleep, day-time sleepiness

Neurosensory, perceptual and motor disturbances :

  • inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception
  • muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia.
  • Neurocognitive impairments, reported or observed, become more pronounced with fatigue.
  • Overload phenomena may be evident when two tasks are performed simultaneously. Respiratory:e.g. air hunger, laboured breathing, fatigue of chest wall muscles
  • Loss of thermostatic stability:e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities
  • Intolerance of extremes of temperature.

The International Consensus Criteria provide a framework for the diagnosis of ME that is consistent with the patterns of pathophysiological dysfunction emerging from published research findings and clinical experience. ( Carruthers et al 2011 )

  • Abnormal accommodation responses of the pupils are common.
  • Sleep disturbances are typically expressed by prolonged sleep, sometimes extreme, in the acute phase and often evolve into marked sleep reversal in the chronic stage.
  • Motor disturbances may not be evident in mild or moderate cases but abnormal tandem gait and positive Romberg test may be observed in severe cases.

At least one symptom is required from three immune/gastro-intestinal/genitourinary impairment categories :

  • Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion.e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation
  • Susceptibility to viral infections with prolonged recovery periods
  • Gastro-intestinal tract:e.g. nausea, abdominal pain, bloating, irritable bowel syndrome
  • Genitourinary: e.g. urinary urgency or frequency, nocturia
  • Sensitivities to food, medications, odours or chemicals.

And at least one symptom from energy metabolism/transport impairments :

  • Cardiovascular:e.g. inability to tolerate an upright position - orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness.

Since 1993 my wife has not known a moment’s respite from the screaming, throbbing, itching, symptoms that paralyse, numb, hurt every part of her body; sometimes I think that if took on board the full reality of my wife’s suffering I would explode.

The Stonebird Definition of Severe ME :

  • Severe ME is a hellish experience that you live and endure without treatment, cure or respect .
  • Severe ME is not knowing how to cope from minute to minute, moment to moment.
  • Severe ME is being tormented by people doing ordinary things.
  • Severe ME is being inhibited by paralysis.
  • Severe ME is being totally ill, all the time.
  • Severe ME is being unable to read.
  • Severe ME is being unable to hold anything.
  • Severe ME is falling over regularly.
  • Severe ME is your mind not working.
  • Severe ME is being unable to speak on the phone.
  • Severe ME is finding that going to bed makes you feel even more ill.
  • Severe ME is discovering that there is no possibility of rest, ever.
  • Severe ME is being unable to see anybody because they make you more ill, because you are so hypersensitive.
  • Severe ME is not knowing what to eat that won't hurt you.
  • Severe ME is being neglected by the Health Service.
  • Severe ME is having to regularly have to prove you are ill, just to get your benefits.
  • Severe ME is being always in constant pain.
  • Severe ME is finding that everything you try to do hurts you on some level somewhere.
  • Severe ME is feeling dizzy and disorientated most of the time.
  • Severe ME is spending your life predominantly sitting in a chair unable to move or function , or in bed, paralysed.
  • Severe ME is being not properly medically tested.
  • Severe ME is being unable to find any clothes that don't itch you.
  • Severe ME is being unable to go to the shops to buy clothes.
  • Severe ME is finding that any noise irritates you to distraction.
  • Severe ME means that your mind lives in a sea of fog and emptiness.
  • Severe ME is finding that everything normal is out of reach.
  • Severe ME is being unable to manage without help, all day long.
  • Severe ME is having no energy.
  • Severe ME is living in poverty.
  • Severe ME is being unable to decorate because you are chemically sensitive and the paint would make you more ill.
  • Severe ME is being unable to tidy away the things on your desk or sort anything out because it's too complex functionally for you to do.
  • Severe ME is being unable to carry things.
  • Severe ME is finding that everything in your world is hurting you , both inside and outside you.
  • Severe ME is being unable to travel without torment.
  • Severe ME is finding that motion makes you ill.
  • Severe ME is having no real choices , apart from not to despair.
  • Severe ME is a torture and a nightmare.
  • Severe ME is constantly feeling as if you are screaming with agony inside.
  • Severe ME is being more sick than an AIDS patient two months before death.
  • Severe ME is noticing that people with terminal cancer have a better quality of life than you, until they die.
  • Severe ME is being sick of not being understood.
  • Severe ME is being sick of the denial of your reality.
  • Severe ME is weeping everyday with the sheer physical pain of your life.
  • Severe ME is having all the things you love taken away from you.
  • Severe ME is being unable to bear being touched because of the pain and irritation that it causes.
  • Severe ME is your body going dead and numb regularly, awake and asleep.
  • Severe ME is having skin that crawls with intolerable sensations.
  • Severe ME is being cognitively disabled.
  • Severe ME is finding that anything you do will lead to worsening pain, paralysis and numbness.
  • Severe ME is feeling like you are dying.
  • Severe ME is having your illness misrepresented and negated by a powerful psychiatric lobby that denies the physical reality of your neurological disease.
  • Severe ME is finding that there is no one with any power or authority doing anything to change it.
  • Severe ME is being enraged by the untruths that exist about ME , that are accepted by professionals and society.
  • Severe ME is finding that your hypersensitivity is increasing.
  • Severe ME is being persecuted because you are disabled and ill.
  • Severe ME is having to buy own nutritional medicine and organic products; you cannot live cheaply as a disabled person.
  • Severe ME is never going on holiday
  • Severe ME is never going to social or family events.
  • Severe ME is having to fight for everything that you should be entitled to.
  • Severe ME is a desperate thirst that is unquenched.
  • Severe ME is an extreme head ache that goes on and on, throbbing unceasingly, day after day, and all night without relent.
  • Severe ME is where thinking is so painful you can't do it.
  • Severe ME is going to sleep and waking up worse.
  • Severe ME is having no energy to start with.
  • Severe ME is struggling to breathe.
  • Severe ME is struggling to eat because chewing is exhausting and swallowing is dangerous.
  • Severe ME is struggling to live.
  • Severe ME is numb eyeballs and itchy, burning eye pain and scratchy dry eyes.
  • Severe ME is not being able to read because the letters are dancing in and out and up and down and there seems to be two of everything.
  • Severe ME is where words lose their meaning and comprehension disappears and is replaced by tormenting pain in your head and worsening pain in your body instead.
  • Severe ME is emptiness in your mind where colour and thought once existed.
  • Severe ME is sleeping all morning and awake all night.
  • Severe ME is needing the toilet again and again.
  • Severe ME is a bizarre world where nothing seems as it is and every reaction is opposite to what you would expect.
  • Severe ME is where no one tells you what is going on in your body, to make sense of all the symptoms .
  • Severe ME is where you have to work it all out for yourself.

Linda Crowhurst

15th July 2010

Linda says :

"Another morning. I lie here in the vastness of agony. There are no words to describe its onslaught. It is intense, all encompassing, everywhere. I am in it and I am it.

My whole body lies motionless. My arms above my head, impaled upon the pillow, I cannot move them. Mysterious as to how they got there, I struggle with my breathing. How long have I lain deep in this posture ? My left leg is outstretched, numbness pervades it. My right leg is bent out at an angle. I cannot feel my toes. My feet and hands pound, in the very centre, a throbbing beat of pain.

How long will this go on ? Hours probably, yet always these experiences lie within me, the pain ever present whether I am paralysed in bed or sitting on a chair. The experience is ever present within me, no matter what my external posture.

My face burns, prickles, throbs too in rhythmic unison. My face is palsied. I cannot even cry out, yet the hurt rages in me and I long to escape from this tormented place.

My head pounds inwardly and burns outwardly.

Please do not touch me. The contact will send me over the edge and still I would not be able to move.

My eyeballs throb, my lids are shut, unable to open to the dim lit room which still would pierce my eyes with pain, were they open.

My head pounds too. The pain is even worse in my arms. My arms and chest have melted into one large immense ball of throbbing agony, immobilised my body feels dead in so many ways, only alive to the pain that holds it together.

This is no odd occurrence. I return to this place again and again; always impossibly difficult to describe."

Surviving Severe ME have published an extensive, accurate , vivid account of the physical devastation that this illness wrecks . Please see http://www.survivingsevereme.com/me.html