Copyright Jodi Bassett January 2005. This version updated June 2011. From www.hfme.org
Some time ago I was flicking through a book (looking for some artistic inspiration) when I came upon a stage-by-stage illustration of hummingbirds hovering and it struck a chord in me. Soon it hit me why. In the same way a hummingbird comes crashing to the ground with a big SPLAT! if it falters in the complex series of movements that keep it in the air, in a different sort of way, so do I.
I contracted Myalgic Encephalomyelitis (M.E.) in 1995 when I was 19. One day I was healthy and the next day absolutely everything changed. Since then I’ve been forced to keep on ‘flapping my wings’ endlessly lest I fall into an even more agony-filled and semi-conscious paralysed heap. I have to constantly remain aware of, and quickly adjust to, all sorts of small changes in my environment and my body. My version goes something like this;
FLAP! Making sure I don’t spend too much time flat in bed (consecutively), or my vertigo becomes much more severe, the room spins horribly and I feel I am falling over backwards as I try to walk, or have to struggle not to fall off the edge of my perfectly flat bed.
FLAP! Trying not to stand or sit up for too long or my heart just can’t cope and it struggles to beat properly and I feel extremely ill for hours afterward. It feels like a heart attack in every organ. Tests show my heart-rate can climb as high as 170 beats-per-minute just from a few minutes of ‘exertion.’
Then I forget for just a few moments about having to be careful about how much light I expose my eyes to and instantly
H! Burning pain that lasts for hours leaving me unable to open my eyes. But still I can’t let my guard down and have to get myself back in the air straight away…
FLAP, FLAP, FLAP! I manage to quickly close all my doors and put my headphones on to block out some neighbourhood noise that would have left me in agonising pain, experiencing seizures, memory loss and taking five days to recover from if I’d listened to it at full volume.
Then I forget to avoid one of the foods I am intolerant of (but that I tolerated perfectly well the day before) and a few minutes later...T H U D! Abdominal pain, headache, bloating, severe itching and nausea for hours afterward. But quickly I have to get myself back up in the air…
FLAP! I manage to make my bath neither too cold (which leaves me shaking and unable to get warm for hours), or too hot (which makes me light-headed, my heartbeat becoming irregular and fluttery for the next six hours so it feels like my heart is struggling to beat and I’m having a heart attack.)
Then I forget to put my blanket over myself properly and within a short while...S P L A T! I get so cold I can’t get myself warm again and it turns into a horrible shivering fever, which leads to delirium, paralysis and eventually loss of consciousness for several hours. I then spend the rest of the day partly paralysed and feeling (neurologically and cognitively) as if I’d had a stroke.
Because so many normal everyday things cause me to ‘crash’ I have to constantly monitor every little thing I do and every aspect of my environment to try and keep myself ‘in the air’ as much as possible. It’s a never-ending task and a fairly thankless one too, as my highest level of functioning is pretty low anyway – I’m 100% house-bound and 99% bed-bound on my best days, I’m in continual pain and experience many different neurological, cardiac, cognitive and other symptoms constantly. But it’s not so much having a painful and limited life that is so hard to bear (though obviously that’s part of it), but to have to plan and work so endlessly hard every minute just to keep my life this ‘good: that’s what really makes it a nightmare.
With a bit more research however, I quickly found a more positive reason to identify with hummingbirds. You see, although at first glance they are tiny, seemingly defenceless and extremely vulnerable to attack from anyone or anything, they are actually quite tough little critters. They never back down from a fight even if the odds are against them, taking on other birds much larger than they are when they need to. What their bodies lack in strength and power is made up for by their bravery, strength of mind and spirit.
I’ve met so many people with M.E. that share that same spirit, particularly with severe M.E.; people that have remained kind, witty, giving, optimistic and determined to make the best of what they have despite dealing with an unbelievably severe (and potentially fatal) neurological, cardiac and metabolic disease often without the support of family, friends or the health and welfare systems; indeed, often with direct opposition, criticism and sometimes abuse from these people and organisations.
I consider these people no less beautiful inside than a hummingbird is to the eye. The human spirit is capable of amazing resilience and endurance and I can see no greater example of this than people suffering from severe M.E. I think they are truly inspiring. When every hour of every day is so difficult and there’s no foreseeable end in sight, the fact that along with the obvious sadness and frustration there can also be hope and humour is just amazing.
The world is full of inspiring stories about people triumphing over quite small problems (compared to M.E.), always with the support of everyone around them and much back patting and praise when they’ve finished their short ‘ordeal’. There is nothing wrong with that, except that on the other hand, there are desperately ill people with severe M.E. who have no support at all yet are able to somehow keep going through one horrendous ordeal of a day after another, often for many years or even decades. Not only are they rarely acknowledged for their hard work and amazing strength, but they are sometimes actually labelled as malingerers, or seen as mentally weak or defective in some way. Sometimes they are, unbelievably, treated as if they were merely very ‘fatigued’ or ‘tired all the time’ instead of very ill with a severe neurological and cardiovascular disease. It really does boggle the mind that there can be such a gap between perception and reality.
I’ve since featured hummingbirds in many of my paintings and drawings and this is why. I see the same sort of strength and beauty, combined with such heartbreaking vulnerability in my M.E. friends everyday. Nothing I’ve seen on this earth is more inspiring to me, more beautiful, or more tragic, more heartbreaking. I think of people with severe M.E. as hummingbirds now – vulnerable, strong and strikingly beautiful all at once; and more than overdue for some consideration, compassion and care in this world.
This paper is dedicated to Ingeborg.
To see some of the hummingbird paintings or prints see the Hummingbird Gallery. 30 - 50% of the purchase price of each item will be donated towards funding M.E. advocacy.
A note about Myalgic Encephalomyelitis:
Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder.
M.E. can occur in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934. M.E. is similar in a number of significant ways to diseases such as multiple sclerosis, Lupus and Polio. M.E. can be very severe, or fatal.
It is very important to be aware that Myalgic Encephalomyelitis and 'Chronic Fatigue Syndrome' are not synonymous terms, and that 'fatigue' is not a defining feature of M.E. nor even an essential symptom of M.E. What defines M.E. is not mere 'fatigue' but a specific type of acute and acquired damage to the brain (the central nervous system) caused by a virus; an enterovirus.
‘CFS’ was created in the 1980s in the US in response to an outbreak of what was unmistakably M.E., but this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process that did not, and could not exist. The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has Myalgic Encephalomyelitis (M.E.), and (b) does not mean that the patient has any other distinct and specific illness named ‘CFS.’ Every diagnosis of CFS – based on any of the CFS definitions – can only ever be a misdiagnosis.
The bogus disease category of ‘CFS’ has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various psychiatric fatigue states and various unrelated fatigue syndromes for the benefit of insurance companies and various other organisations which have a significant vested financial interest in how these patients are treated, including the government. This has meant that most people with M.E. are given no appropriate medical care at all. Many are simply left to die at home, alone. The decades of systemic abuse and neglect of the million or more people with M.E. worldwide has to stop. People with M.E. must again be treated ethically and based on the available scientific evidence. To summarise:
Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as ‘CFS’ is ‘medically unexplained.’ A diagnosis of ‘CFS’ does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis. Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.
Myalgic Encephalomyelitis is a systemic neurological disease initiated by a viral infection. M.E. is characterised by (scientifically measurable) damage to the brain, and particularly to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.
M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely ‘fatigued’ instead of having M.E. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.
The bogus disease category of 'CFS' must be abandoned, (along with the use of other vague and misleading umbrella terms such as ‘ME/CFS’ ‘CFS/ME’ 'CFIDS' and others) for the benefit of all patient groups involved. Knowledge is power.
The vested interests of the Insurance companies and their advisers must be totally removed from all aspects of benefit assessments.The poverty and isolation to which many people have been reduced by ME is a scandal and obscenity. Professor Malcolm Hooper 2006
The term myalgic encephalomyelitis (means muscle pain, my-algic, with inflammation of the brain and spinal cord, encephalo-myel-itis, brain spinal cord inflammation) was first coined by Ramsay and Richardson and has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination. Professor Malcolm Hooper 2006
M.E. is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis. It has an UNIQUE Neuro-hormonal profile. .Dr Elizabeth Dowsett
M.E. appears to be in this same family of diseases as paralytic polio and MS. M.E. is less fulminant than MS but more generalized. M.E. is less fulminant but more generalized than poliomyelitis. This relationship of M.E.-like illness to poliomyelitis is not new and is of course the reason that Alexander Gilliam, in his analysis of the Los Angeles County General Hospital M.E. epidemic in 1934, called M.E. atypical poliomyelitis. Dr Byron Hyde 2006
Copyright Jodi Bassett, January 2009. This version updated June 2011. From www.hfme.org
• Myalgic Encephalomyelitis (M.E.) is a disabling neurological disease that is very similar to Multiple Sclerosis (M.S.) and Poliomyelitis. Earlier names for M.E. were ‘atypical Multiple Sclerosis’ and ‘atypical Polio.’
• M.E. is a neurological disease characterised by scientifically measurable post-encephalitic damage to the brain stem. This damage is an essential part of M.E., hence the name M.E. The term M.E. was coined in 1956 and means: my = muscle, algic = pain, encephalo = brain, mye = spinal cord, tis = inflammation. This neurological damage has been confirmed in autopsies of M.E. patients.
• Myalgic Encephalomyelitis has been recognised by the World Health Organisation’s International Classification of Diseases since 1969 as a distinct organic neurological disease. M.E. is classified in the current WHO International Classification of Diseases with the neurological code G.93.3.
• M.E. is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis. More than 64 individual symptoms of M.E. have been scientifically documented.
• M.E. is an acute (sudden) onset, infectious neurological disease caused by a virus (a virus with a 4-7 day incubation period). M.E. occurs in epidemics as well as sporadically and over 60 M.E. outbreaks have been recorded worldwide since 1934. There is ample evidence that M.E. is caused by the same type of virus that causes Polio; an enterovirus.
• M.E. can be more disabling than M.S. or Polio, and many other serious diseases. M.E. is one of the most disabling diseases that exists. More than 30% of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are severely limited with even basic movement and communication.
• Why are M.E. patients so severely and uniquely disabled? For a person to stay alive, the heart must pump a certain base-level amount of blood. Every time a person is active, this increases the amount of blood the heart needs to pump. Every movement made or second spent upright, every word spoken, every thought thought, every word read or noise heard requires that more blood must be pumped by the heart.
However, the hearts of M.E. patients only pump barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input.
This problem of reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly. Seemingly minor 'activities' can cause significantly increased symptom severity and/or disability (often with a 48-72 hour delay in onset), prolonged relapse lasting months, years or longer, permanent bodily damage (e.g. heart damage or organ failure), disease progression or death.
If activity levels exceed cardiac output by even 1%, death occurs. Thus the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output just in order for them to stay alive. M.E. patients who are able to rest appropriately and avoid severe or prolonged overexertion have repeatedly been shown to have the most positive long-term prognosis.
• M.E. is a testable and scientifically measurable disease with several unique features that is not difficult to diagnose (within just a few weeks of onset) using a series of objective tests (e.g. MRI and SPECT brain scans). Abnormalities are also visible on physical exam in M.E.
• M.E. is a long-term/lifelong neurological disease that affects more than one million adults and children worldwide. In some cases M.E. is fatal. (Causes of death in M.E. include heart failure.)
For more information, and to read a fully-referenced version of this text compiled using information from the world's leading M.E. experts, please see: What is M.E.? Extra extended version. Permission is given for this unedited document to be freely redistributed. Please redistribute this text widely.
To download other papers from this site, see the Document Downloads page.
Permission is given for this document to be freely redistributed by e-mail or in print for any not-for-profit purpose provided that the entire text (including this notice and the author’s attribution) is reproduced in full and without alteration. Please redistribute this text widely.