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Copyright © by Jodi Bassett 2004 on www.ahummingbirdsguide.com
This version updated September 2007
‘Imagine if your entire well-being depended on the telling of a story.’ (Munson, P. 2000, p. xxiii)
Imagine having to tell that story not just once but over and over again, all the while experiencing unspeakable pain, symptoms of illness, and cognitive confusion so profound that you struggle to remember how to speak at all. Imagine that story, the story of your life, not being believed time and time again despite there being an enormous amount of irrefutable scientific evidence spanning over 70 years that backs up exactly what you are saying.
This is the position more than a million adults, teenagers and children find themselves in because they are unlucky enough, through no fault of their own, to have the ‘wrong’ disease. A disease with so much misinformation and propaganda attached to it that this often causes almost as much pain and suffering as the illness itself.
I’d like to attempt to tell at least some of their real story, the story based in fact rather than fiction. I’m begging you, just for the few minutes it will take to read this, please let go of what you already ‘know’ about this illness.
First of all, the illness I’m talking about is called Myalgic Encephalomyelitis or M.E. That is the correct name for this illness, and it has been since 1956. In 1988 in the US, the fictional disease category of ‘Chronic Fatigue Syndrome’ (CFS) was created – but despite popular opinion, M.E. and ‘CFS’ are not synonymous terms and M.E. and ‘CFS’ are not the same thing. M.E. has nothing to do with ‘tiredness.’ I’ll explain how these two very different entities are politically linked a bit later on. (Okay, now remember what I said about forgetting the rumours you may have heard – because they ARE rumours, and aren’t based on facts).
I have been unlucky enough to have had M.E. for the past 12 years, since I was just 19. I went from being perfectly healthy and active to being severely disabled from one day to the next. I'm 100% housebound and 99.5% bedbound, yet like so many other M.E. sufferers I have had to fight so hard just to try to get even basic help and understanding from doctors, friends and family members. So little is known by the public about this illness. This is hardly surprising when many articles on this illness do not contain even a single fact!
So what IS Myalgic Encephalomyelitis?
Myalgic encephalomyelitis is an acutely acquired illness initiated by a virus infection which is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions – this is always damaged in M.E. (Hence the name Myalgic Encephalomyelitis.) M.E. also causes a loss of normal internal homeostasis. The individual can no longer function systemically within normal limits.
M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected. It is also known that the vascular and cardiac dysfunctions seen in M.E. are also the cause of many of the symptoms and much of the disability associated with M.E. – and that the well-documented mitochondrial abnormalities present in M.E. significantly contribute to both of these pathologies. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs in M.E. Some individuals also have damage to skeletal and heart muscle. Thus M.E. symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage.
M.E. affects the body systemically. Even minor levels of physical and cognitive activity, sensory input and orthostatic stress beyond a M.E. patient’s individual post-illness limits causes a worsening of the severity of the illness (and of symptoms) which can persist for days, weeks or months or longer. Repeated or severe overexertion can also cause permanent damage (eg. to the heart), disease progression and/or death in M.E.
It is the combination of the chronicity, the dysfunctions, and the instability, the lack of dependability of these functions, that creates the high level of disability in M.E. It is also worth noting that of the CNS dysfunctions, cognitive dysfunction is one of the most disabling characteristics of M.E. All of this is not simply theory, but is based upon an enormous body of mutually supportive clinical information. These are well-documented, scientifically sound explanations for why patients are bedridden, profoundly intellectually impaired, unable to maintain an upright posture and so on (Chabursky et al. 1992 p. 20) (Hyde 2007, [Online]) (Hyde 2006, [Online]) (Hyde 2003, [Online]) (Dowsett 2001a, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Hyde 1992 pp. x-xxi) (Hyde & Jain 1992 pp. 38 - 43) (Hyde et al. 1992, pp. 25-37)
What are the real physical effects of Myalgic Encephalomyelitis?
M.E. is similar in a number of significant ways to multiple sclerosis, Lupus and poliomyelitis (polio). M.E. can be extremely severe and disabling and in some cases the disease is fatal.
M.E. can leave you unable to read even a few lines of text, write, watch TV, or have the radio on. You can be unable to speak, or to understand speech in any way. Your throat, glands and muscles can all hurt beyond the reach of medication as you go in and out of fevers, unable to sit up for more than a few minutes, or even a few seconds. Your heart can beat erratically or very fast, sometimes for hours and it can feel like you are having a heart attack. Standing up for any length of time can make you feel like you are dying or like you are having a heart attack in EVERY organ. You can have real difficulty breathing. The smallest amount of noise, light or vibration can be agony.
The room can spin with constant vertigo and you can become allergic or sensitive to so many drugs, chemicals and foods. You can have seizures or experience paralysis. You can lie awake all night, desperately in need of sleep but unable to get to sleep for many hours, or for more than a few hours at a time. Worst of all, you have to deal with these symptoms all at the same time, just constantly, with no respite.
Symptoms of M.E. include (in no particular order):
Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacusis, tinnitus, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional lability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm.
Neurocognitive dysfunction may include cognitive, motor and perceptual disturbances. Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), difficulty or an inability to read or write or to do basic mathematics, difficulty with simultaneous processing, poor concentration, difficulty with sequencing and problems with memory including; difficulty making new memories, difficulty recalling formed memories and difficulties with visual and verbal recall (eg. facial agnosia). There is often a marked loss in verbal and performance intelligence quotient (IQ). (Bassett, 2007)
More than 64 distinct symptoms have been authentically documented in M.E. But what characterises M.E. every bit as much as the individual symptoms is the way in which people with M.E. respond to physical and cognitive activity, sensory input and orthostatic stress (being upright), and so on. The way the bodies of people with M.E. react to these activities/stimuli post-illness is unique in a number of ways. Along with a specific type of damage to the brain (the central nervous system) this characteristic is one of the defining features of the illness which must be present for a correct diagnosis of M.E. to be made. The main characteristics of the pattern of symptom exacerbations, relapses and disease progression (and so on) in Myalgic Encephalomyelitis include:
A. People with M.E. are unable to maintain their pre-illness activity levels. This is an acute change; M.E. patients can only achieve 50%, or less, of their pre-illness activity levels post-M.E.
B. People with M.E. are limited in how physically active they can be but they are also limited in similar way with; cognitive exertion, sensory input and orthostatic stress.
C. When a person with M.E. is active beyond their individual (physical, cognitive, sensory or orthostatic) limits this causes a worsening of various neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms.
D. The level of physical activity, cognitive exertion, sensory input or orthostatic stress needed to cause a significant or severe worsening of symptoms varies from patient to patient, but is often trivial compared to a patient’s pre-illness tolerances and abilities.
E. The severity of M.E. waxes and wanes throughout the hour/day/week and month.
F. The worsening of the illness caused by overexertion can be acute, but often does not reach its peak until 24 - 48 hours (or more) later.
G. If people with M.E. push past their individual limits too deeply or too often, the effects of overexertion can also accumulate over longer periods of time and lead to disease progression, or death.
H. The activity limits of M.E. are not short term, a gradual (or sudden) increase in activity levels beyond a patient’s individual limits can only cause relapse, disease progression or death in patients with M.E.
I. The symptoms of M.E. do not resolve with rest. The symptoms and disability of M.E. are not just caused by overexertion, there is also a base level of illness which can be quite severe even at rest.
J. Repeated overexertion can harm your chances for future improvement in M.E. M.E. patients who are given advice to rest in the early stages of the illness (and who avoid overexertion thereafter) have repeatedly been shown to have the most positive long-term prognosis.
L. Not every M.E. sufferer has ‘safe’ activity limits within which they will not exacerbate their illness, this is not the case for the very severely affected (Bassett 2007, [Online]).
As you can see not only does M.E. affect what seems like just about everything physically but there are extensive neurological and cognitive and sensory problems (and injuries) as well. This illness can take away EVERYTHING. The payback from doing even the smallest tasks can be extremely severe and can last for weeks, months or even years. Forget just trying to get through one day at a time as some days you have to take each hour, or minute, or even SECOND as it comes – and each second can sometimes last for what feels like hours.
So why is Myalgic Encephalomyelitis not regarded as a serious illness by some people? Why do some groups claim it is merely a problem of ‘fatigue’ or a psychological or behavioural illness?
Why is so little money going into M.E. research? Why is it so difficult to get social security payments when you are so severely ill? Why are so many friends and families of sufferers not only not supportive, but downright dismissive of them or even abusive? Why do so many people with M.E. suffer abuse and neglect at the hands of their doctors, nurses and carers? Why are parents being unfairly blamed for their children’s illness? Why are the more than a thousand studies proving the existence of serious abnormalities in M.E. not enough? Why is so little being done to change all these things?
It all comes down to money, unfortunately. Money and politics, and the creation of the disease category of ‘Chronic Fatigue Syndrome.’ The disease category of CFS was created in 1988 in a 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.
There was an enormous rise in the incidence of Myalgic Encephalomyelitis in the late 1970s and the 1980s and so it was at this time that certain psychiatrists and others involved in the medical insurance industry (on both sides of the Atlantic) began their campaign to reclassify the severely incapacitating and discrete neurological disorder known as Myalgic Encephalomyelitis as a psychological or ‘personality’ disorder; in order to side-step the financial responsibility of so many new claims (Marshall & Williams 2005a, [Online]). As Professor Malcolm Hooper explains:
In the 1980s in the US (where there is no NHS and most of the costs of health care are borne by insurance companies), the incidence of ME escalated rapidly, so a political decision was taken to rename M.E. as "chronic fatigue syndrome", the cardinal feature of which was to be chronic or on going "fatigue", a symptom so universal that any insurance claim based on "tiredness" could be expediently denied. The new case definition bore little relation to M.E.: objections were raised by experienced international clinicians and medical scientists, but all objections were ignored… To the serious disadvantage of patients, these psychiatrists have propagated untruths and falsehoods about the disorder to the medical, legal, insurance and media communities, as well as to government Ministers and to Members of Parliament, resulting in the withdrawal and erosion of both social and financial support [for M.E. patients]. Influenced by these psychiatrists, government bodies around the world have continued to propagate the same falsehoods with the result that patients are left without any hope of understanding or of health service provision or delivery. As a consequence, government funding into the biomedical aspects of the disorder is non-existent. (2003a, [Online]) (2001, [Online])
That’s it, in a nutshell. The creation of CFS – and the claims that the distinct neurological illness M.E. and ‘CFS’ are the same thing – is just an insurance scam, designed to save certain large corporations literally million or even billions of dollars. It has been remarkably successful unfortunately, to the detriment of more than a million patients left without financial support, medical care, or even kindness from their closest friends and family.
To be blunt, many people with M.E. are simply left at home alone, to die….. all because political and financial considerations have been placed above ethics and basic human rights, and REALITY. Unfair doesn’t even begin to describe it… The public has been misled and just plain lied to about the reality of M.E. by various vested interest groups, by mainstream media and by government for the last 20 years… It is a scientific fraud and a human rights travesty on a massive scale.
Setting the record straight - the truth behind the myths of Myalgic Encephalomyelitis
Is Myalgic Encephalomyelitis a new illness? What does the name M.E. mean?
The illness we now know as Myalgic Encephalomyelitis is not a new illness. M.E. is thought to have existed for centuries. (Hyde 1998, [Online]) (Dowsett 1999a, [Online]). There is a history of over sixty recorded outbreaks of the illness going back to 1934 when an epidemic of what seemed at first to be poliomyelitis was reported in Los Angeles. The presenting illness resembled polio and so for some years the illness was considered to be a variant of polio and classified as ‘Atypical poliomyelitis’ or ‘Non-paralytic polio’ (TCJRME 2007, [Online]) (Hyde 1998, [Online]) (Hyde 2006, [Online]). In 1956 the name Myalgic Encephalomyelitis was created. The term Myalgic Encephalomyelitis means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation (Hyde 2006, [Online]). In recognition of the large body of compelling research that was available, M.E. was formally classified as an organic disease of the central nervous system in the World Health Organisation’s International Classification of Diseases in 1969 with the code G.93.3 (Hooper et al. 2001, [Online]).
What triggers the onset of Myalgic Encephalomyelitis?
M.E. expert Dr Byron Hyde explains that:
[The] prodromal phase is associated with a short onset or triggering illness. This onset illness usually takes the form of either, or any combination, of the following, (a) an upper respiratory illness, (b) a gastrointestinal upset, (c) vertigo and (d) a moderate to severe meningitic type headache. The usual incubation period of the triggering illness is 4-7 days. The second and third phases of the illness are usually always different in nature from the onset illness and usually become apparent within 1-4 weeks after the onset of the infectious triggering illness (1998 [Online]).
Despite popular opinion (and the vast amount of ‘CFS’ government and media propaganda) there is no link however between contracting M.E. and being a 'perfectionist' or having a ‘type A’ or over-achiever personality. M.E. also cannot be caused by a period of long-term or intense stress, trauma or abuse in childhood, becoming run-down, working too hard or not eating healthily. M.E. is undoubtedly caused by a virus, a virus with an incubation period of 4-7 days – and there is very good evidence to suggest that the culprit is an enterovirus (Hyde 2006, [Online]) (Hyde 2007, [Online]) (Hooper 2006, [Online]) (Hooper & Marshall 2005a, [Online]) (Hyde 2003a, [Online]) (Dowsett 2001a, [Online]) (Hooper et al. 2001, [Online]) (Dowsett 2000, [Online]) (Ryll 1994, [Online]).
What does a diagnosis of ‘CFS’ actually mean?
There are now more than nine different definitions of ‘CFS.’ All each of these flawed CFS definitions ‘define’ is a heterogeneous (mixed) population of people with various misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but the symptom of fatigue. The fact that a person qualifies for a diagnosis of CFS, based on any of the CFS definitions (a) does not mean that the patient has Myalgic Encephalomyelitis, and (b) does not mean that the patient has any other distinct and specific illness named ‘CFS.’ A diagnosis of CFS – based on any of the CFS definitions – can only ever be a misdiagnosis. All a diagnosis of ‘CFS’ actually means is that the patient has a gradual onset fatigue syndrome which is usually due to a missed major disease. As M.E. expert Dr Byron Hyde M.D. explains, the patient has:
a. Missed cardiac disease, b. Missed malignancy, c. Missed vascular disease, d. Missed brain lesion either of a vascular or space occupying lesion, e. Missed test positive rheumatologic disease, f. Missed test negative rheumatologic disease, g. Missed endocrine disease, h. Missed physiological disease, i. Missed genetic disease, j. Missed chronic infectious disease, k. Missed pharmacological or immunization induced disease, l. Missed social disease, m. Missed drug use disease or habituation, n. Missed dietary dysfunction diseases, o. Missed psychiatric disease (2006, [Online]).
Under the cover of ‘CFS’ certain vested interest groups have assiduously attempted to obliterate recorded medical history of Myalgic Encephalomyelitis; even though the existing evidence has been published in prestigious peer-reviewed journals around the world and spans over 70 years. As Dr Byron Hyde M.D. explains:
Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis. It is not. The CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. (2006, [Online]).
The only way forward for M.E. patients and all of the diverse patient groups commonly misdiagnosed with ‘CFS’ (both of which are denied appropriate support, diagnosis and treatment, and may also be subject to serious medical abuse) is that the bogus disease category of ‘CFS’ must be abandoned. (Hyde 2006a, 2006b, [Online]) (Hooper 2006, [Online]) (Hyde 2003, [Online]) (Hooper 2003a, [Online]) (Dowsett 2001a, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Dowsett n.d., [Online]).
Myalgic Encephalomyelitis is not defined by mere ‘fatigue’
Myalgic Encephalomyelitis is not synonymous with being tired all the time. If a person is very fatigued for an extended period of time this does not mean they are having a ‘bout’ of M.E. To suggest such a thing is no less absurd than to say that prolonged fatigue means a person is having a ‘bout’ of multiple sclerosis, Parkinson’s disease or Lupus. If a person is constantly fatigued this should not be taken to mean that they have M.E. no matter how severe or prolonged their fatigue is. Fatigue is a symptom of many different illnesses as well as a feature of normal everyday life – but it is not a defining symptom of M.E., nor even an essential symptom of M.E. (Hyde 2006, [Online]) (Hooper 2006, [Online]) (Hooper & Marshall 2005a, [Online]) (Hyde 2003, [Online]) (Dowsett 2001, [Online]) (Hooper et al. 2001, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Dowsett 1996, p. 167) (Dowsett et al. 1990, pp. 285-291) (Dowsett n.d., [Online]).
What do the terms CFIDS, ME/CFS, CFS/ME, Myalgic Encephalopathy and ME-CFS mean?
When the terms CFS, CFIDS, ME/CFS, CFS/ME, Myalgic Encephalopathy or ME-CFS are used what is being referred to may be patients with/facts relating to any combination of: 1. Miscellaneous psychological and non-psychological fatigue states (including somatisation disorder) 2. A self limiting post-viral fatigue state or syndrome (eg. following glandular fever.) 3. A mixed bag of unrelated, misdiagnosed illnesses (each of which feature fatigue as well as a number of other common symptoms; poor sleep, headaches, muscle pain etc.) including Lyme disease, multiple sclerosis, Fibromyalgia, athletes over-training syndrome, depression, burnout, systemic fungal infections (candida) and even various cancers 4. Myalgic Encephalomyelitis patients.
The terminology is often used interchangeably, incorrectly and confusingly. However, the DEFINITIONS of M.E. and CFS are very different and distinct, and it is the definitions of each of these terms which is of primary importance. The distinction must be made between terminology and definitions. The only thing that makes any sense is for patients with Myalgic Encephalomyelitis, to be studied ONLY under the name Myalgic Encephalomyelitis – and for this term ONLY to be used to refer to a 100% M.E. patient group The only correct name for this illness – M.E. as per Ramsay/Dowsett and Hyde – is Myalgic Encephalomyelitis. M.E. is not synonymous with CFS, nor is it a subgroup of CFS. (There is no such disease/s as "CFS.’)
What does the term ICD-CFS mean?
The definitions of CFS do not define M.E. but because an outbreak of M.E. in the US was labelled as being ‘CFS’ at the time (and for other reasons to do with political considerations), some researchers have produced valuable research into M.E. under the name ‘CFS.’ The vast majority (an estimated 95% at least) of ‘CFS’ research however, does not involve M.E. patients and is not relevant in any way to M.E. patients. So sometimes the new term ‘ICD-CFS’ is used to refer to those studies and articles which while they use the term ‘CFS’ do relate in some way (in whole or in part) to people with authentic Myalgic Encephalomyelitis.
Is Myalgic Encephalomyelitis difficult to diagnose? What tests can be used to diagnose M.E.?
M.E. is a distinct, recognisable disease entity that is not difficult to diagnose and can in fact be diagnosed relatively early in the course of the disease (within just a few weeks) – providing that the physician has some experience with the illness. Although there is as yet no single test which can be used to diagnose M.E. there are (as with Lupus, MS and many other illnesses) a series of tests which can confirm a M.E. diagnosis.
Virtually every M.E. patient will also have abnormalities visible on physical exam. If all tests are normal then a diagnosis of M.E. cannot be correct (Hyde 2006, [Online]) (Chabursky et al. 1992, p.22). As Dr Byron Hyde M.D. explains:
The one essential characteristic of M.E. is acquired CNS dysfunction. A patient with M.E. is a patient whose primary disease is CNS change, and this is measurable. We have excellent tools for measuring these physiological and neuropsychological changes: SPECT, xenon SPECT, PET, and neuropsychological testing (2003, [Online]).
It is only Myalgic Encephalomyelitis patients who are negatively affected by the bogus creation of ‘CFS’?
Other patient groups misdiagnosed as CFS are also denied appropriate diagnosis and treatment. There are also a variety of negative impacts on doctors and the public (and others) caused by the ‘CFS’ insurance scam. Truly the only groups which gain from the ‘CFS’ confusion are insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government.
Is there a legitimate scientific debate about whether or not M.E. is a ‘real’ medical condition?
Despite popular opinion, there simply is no legitimate scientifically motivated debate about whether or not M.E. is a ‘real’ illness or not or has a biological basis. The psychological or behavioural theories of M.E. are no more scientifically viable than are the theories of a ‘flat earth.’ They are pure fiction.
What is known about Myalgic Encephalomyelitis so far?
There is an abundance of research which shows that M.E. is an organic illness which can have profound effects on many bodily systems. These are well-documented, scientifically sound explanations for why patients are bedridden, profoundly intellectually impaired, unable to maintain an upright posture and so on. More than a thousand good articles now support the basic premises of M.E. Autopsies have also confirmed such reports of bodily damage and infection (Hooper & Williams 2005a, [Online]).
It is known that Myalgic Encephalomyelitis is: an acute onset (biphasic) epidemic or endemic infectious disease process, an autoimmune disease (with similarities to Lupus), an infectious neurological disease, affecting adults and children, a persistent viral infection (most likely due to an enterovirus; the same type of virus which causes poliomyelitis and post-polio syndrome), a central nervous system (CNS) disease (with similarities to MS), a variable (but always, serious) diffuse (acquired) brain injury, a systemic illness (associated with organ pathology; particularly cardiac), a cardiovascular disease, a type of cardiac insufficiency, a mitochondrial disease, a metabolic disorder, a musculo-skeletal disorder, a neuroendocrine disease, a seizure disorder, a sleep disorder, a gastrointestinal disorder, a respiratory disorder, a chronic or lifelong disease associated with a high level of disability, an unstable disease; from one hour/day/week or month to the next and potentially progressive or fatal disease (Hyde 2007, [Online]) (Hooper et al. 2001, [Online]) (Cheney 2007, [video recording]) (Ramsay 1986, [Online])
Strong evidence exists to show that overexertion can have extremely harmful effects on M.E. patients. Patient accounts of leaving exercise programs much more severely ill than when they began them; wheelchair-bound or bed-bound or needing intensive care or cardiac care units, are common. (Recent research has shown that postural stress and physical and mental overexertion exacerbate cardiac insufficiency in this disease.) There have also been reports of sudden deaths in M.E. patients following exercise.
Like so many people with M.E., the reason I am severely affected is because I was given advice to exercise for the first 5 years I was ill. When I was first ill I could still do around 40-50% of my pre-illness activities, but I have only been able to do far less than even 5% of my pre-illness activities for the last 7 years now. That bad advice I was given to exercise…I don’t think it’s an exaggeration to say it has ruined my life,. Please don’t let this happen to your friend or family member with M.E.! It is such a waste, and what is done can never be undone…
Who gets Myalgic Encephalomyelitis?
M.E. has a similar strike rate to multiple sclerosis. Children and teenagers are also susceptible to the illness and children as young as five have been diagnosed with M.E. All ages are affected but most commonly sufferers are under 45 at onset. Women are affected around three times as often as men, a ratio common in autoimmune disorders, although in children the sexes seem to be afflicted equally. M.E. affects all races and socio-economic groups and has been diagnosed all over the world. There are more than a million M.E. sufferers worldwide (Hooper et al. 2001 [Online]) (Hyde 1992, pp. x - xxi).
M.E. can be far more severe and disabling than many other illnesses
One doctor found that: ‘M.E. patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses.’ An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy or haemodialysis, as well as those with HIV, liver transplants, coronary artery disease, and other ailments, and again found that M.E. patients scored the lowest. "In other words", said one M.E. expert in a radio interview, "this disease is actually more debilitating than just about any other medical problem in the world" (Munson 2000, p. 4).
In the 1980s Mark Loveless, an infectious disease specialist and head of the AIDS and M.E. Clinic at Oregon Health Sciences University, found that M.E. patients whom he saw had far lower scores on the Karnofsky performance scale than his HIV patients even in the last week of their life. He testified that a M.E. patient, ‘feels effectively the same every day as an AIDS patient feels two weeks before death’ (Hooper & Marshall 2005a, [Online]).
Some people have ‘only’ moderate M.E. But people with moderate illness are still dong it really tough. Dealing with the varied symptoms of M.E. while trying to also study or work part time (often with little or no support or understanding) leaves people struggling extremely hard just to get by, leaving nothing much left over for anything else in life. Even in moderate cases, M.E. is one of the most frightening, tragic and debilitating illnesses there is.
The prognosis for M.E. varies, but in general M.E. is a chronic or lifelong illness
M.E. can be progressive, degenerative (change of tissue to a lower or less functioning form, as in heart failure), chronic, or relapsing and remitting. Some patients experience spontaneous remissions albeit most often at a greatly reduced level of functioning compared to pre-illness and such patients remain susceptible to relapses for the remainder of their lives – M.E. is a life-long disability where relapse is always possible. Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and sometimes M.E. is fatal. As M.E. expert Dr Elizabeth Dowsett explains:
After a variable interval, a multi-system syndrome may develop, involving permanent damage to skeletal or cardiac muscle and to other "end organs" such as the liver, pancreas, endocrine glands and lymphoid tissues, signifying the further development of a lengthy chronic, mainly neurological condition with evidence of metabolic dysfunction in the brain stem. Yet, stabilisation, albeit at a low level, can still be achieved by appropriate management and support. The death rate of 10% occurs almost entirely from end-organ damage within this group (mainly from cardiac or pancreatic failure). It has to be said that suicide in younger patients and in earlier stages of the disability is related to the current climate of disbelief and rejection of welfare support… It is an additional and potentially avoidable factor (2001, [Online]).
But there is a way to ensure the most positive prognosis for people with M.E., thankfully. We know that M.E. patients who are given advice to rest in the early stages of the illness (and who avoid overexertion thereafter) have repeatedly been shown to have the most positive long-term prognosis. As Dr Melvin Ramsay M.D. explains: ‘ The degree of physical incapacity varies greatly, but the [level of severity] is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis’ (1986 [Online]).
In conclusion
As I mentioned at the beginning, common misconceptions about M.E. mean that it affects so much more than just the health of its victims. It can negatively impact on almost every aspect of life until you are left with absolutely nothing. People often lose their jobs, their houses, their spouses and families, their friends, their financial security as well as their standing in the community and basic respect – all while dealing with severe disability and illness with none (or very little) of the appropriate support given to those with medically comparable illnesses.
People with M.E. are also very often subjected to medical abuse and neglect. Many M.E. sufferers also have no appropriate medical care at all and many with M.E. are severely ill because of this lack of care, or the lack of appropriate medical care (or financial support). As if medical abuse and neglect weren’t enough to deal with, the propaganda surrounding M.E. can also lead to abuse and even ridicule from the friends and family of people with M.E. This is a very common problem facing people with M.E. (including myself, in the past).
But it is the children with M.E. and their families who perhaps pay the highest price for the ignorance about this illness. Because it is harder to pin the blame for the illness on depression or anxiety with children, the parents are often blamed instead. Parents of these ill children have been charged with neglect or accused of actually making their children ill themselves. Some parents have lost custody and their children have been placed in foster care. All of this while the child continues to be seriously ill and not receive any sort of appropriate medical care.
However inconvenient it may be, Myalgic Encephalomyelitis is a devastatingly severe physical illness with more than a million victims who have had to put up with not only being severely ill but with abuse and social disbelief about their condition as well as an almost total lack of appropriate support. This has to stop.
Sub-grouping different types of ’CFS,’ refining the bogus ‘CFS’ definitions further or renaming ‘CFS’ with some variation on the term M.E. would achieve nothing and only create yet more confusion and mistreatment. The problem is not that ‘CFS’ patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. There is no such distinct disease/s as ‘CFS’ – that is the entire issue, and the vast majority of patients misdiagnosed with CFS do not have M.E. and so have no more right to that term than to ‘cancer’ or ‘diabetes.’ The only way forward is that:
1. The bogus disease category of ‘CFS’ must be abandoned completely.
2. The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy.
So what can you do to help?
The CFS insurance scam will be exposed, there is no doubt about that. But the question of WHEN this will happen is entirely up to us, and how willing we are to stand up and refuse to accept this injustice any more. So what you can do to help is to PLEASE help to spread the truth about Myalgic Encephalomyelitis. This appalling abuse and neglect of so many severely ill people on such an industrial scale is truly inhuman and has already gone on for far too long.
People with M.E. desperately need your help.
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