Sufferers in Australia
1:: By Jodi Bassett, February 2004.
Please send comments or queries to: firstname.lastname@example.org
Imagine having to tell that story not just once but over and over again, all the while experiencing unspeakable pain, exhaustion, and mental 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 piece after piece of evidence.
This is the position around a million adults, teenagers and children find themselves in because they are unlucky enough through no fault of their own, not just to be ill but to be ill with a misunderstood illness. One with a stigma attached to it that 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. It's a complicated tale but one that needs telling and needs desperately to become public knowledge. I'm begging you, just for the few minutes it will take to read this, to let go of what you already 'know' about this illness.
First of all, the illness I'm talking about is called Chronic Fatigue Syndrome or Myalgic Encephalomyopathy (CFS/ME for short) or sometimes CFIDS, Chronic fatigue immune dysfunction syndrome. (Okay, now you know the name remember what I said about forgetting the rumours you've heard because they ARE rumours). I have been unlucky enough to have had this illness for the past 8 years. I'm 100% housebound and 98% bedbound and yet I have had to fight so hard just to try to get basic help and understanding from doctors, friends and family members.
So little is known by the public about this illness. Few people are aware that CFS/ME not only affects people individually, but that there have been documented outbreaks of the illness. Most people also have no idea of its brutal severity, (there have been deaths) not to mention its wide array of disabling symptoms besides just 'fatigue'. It's hard to describe exactly how debilitating CFS/ME is, but some have tried:
"Dr Dan Peterson, one of the doctors who delineated a tragic CFIDS cluster outbreak in Incline Village, Nevada (often considered the epicenter of the disease), employed a protocol called the Medical Outcome Study to systematically evaluate the level of suffering in a group of CFIDS patients. He and his colleagues measured people with CFIDS against a control group and against patients with various ailments. When he presented his findings, Peterson revealed the astonishing fact that no other set of patients had measured so poorly. CFIDS 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 hemodialysis, as well as those with HIV, liver transplants, coronary artery disease, and other ailments, and again found that CFIDS patients scored the lowest. "In other words", said Dr Leonard Jason in a radio interview, "this disease, this syndrome, is actually more debilitating than just about any other medical problem in the world." Nevertheless, most accounts of the illness have simply shortened its name to the flip and damaging misnomer "chronic fatigue" as if CFIDS is a mild inconvenience."
(Munson, P. p. 4)
The real physical effects of CFS/ME
Having CFS/ME is in reality like having bits of Multiple Sclerosis, AIDS, Alzheimer's, the flu, Arthritis and Epilepsy all thrown together at once, with some extra stuff thrown in that's all its own.
It 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, and this is every bit as terrifying as you can imagine. 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. Your heart can beat erratically at random moments, sometimes for hours. You can have difficulty breathing or breathing can stop altogether. The room can spin with constant vertigo and you can become allergic or sensitive to almost everything. You can have seizures or experience paralysis. You can lie awake with insomnia all night, completely exhausted but unable to sleep.
Other symptoms include (in no particular order): papules (elevated red bumps) and vesicles (which resemble blisters) in the back of the throat and lining of the cheeks, Neurally Mediated Hypotension, recurrent flu-like illness, low blood pressure, blind spots in vision, vomiting, fainting or blackouts, sleep disturbance, irritability, paresthesias (abnormal sensations in peripheral nerves), word-finding difficulty, blurred vision, dyslexia, nausea, severe muscle and joint pain, memory problems, extreme sensitivity to light, noise and movement, severe exercise intolerance, tinnitus, inability to concentrate, spatial disorientation, difficulty swallowing, alcohol intolerance, thyroid and adrenal dysfunction, cough, constant low temperature, feeling hot or cold, headaches, hypoglycemia, tremor, involuntary movements, severe muscle weakness and nystagmus (involuntary rolling of the eyes).
(Berne p. 316 - 320)
There are also many more symptoms but I'm trying to be brief. As you can see not only does it affect what seems like just about everything physically but there are extensive neurological problems and injuries as well. With most illnesses it's one or the other but with CFS/ME you can be unable to recognize the face of your sibling sitting right in front of you and struggle to breathe all at the same time. Nothing is left except your mind.
Severe CFS/ME can mean being left in a dark quiet room in agonizing pain, unable to think or move, for months, years or decades. I think that says it all. It's hell on earth. Forget just trying to get through one day at a time as some days you have to take each second as it comes and each second can last for what feels like hours.
*an unpredictable and unstable illness
CFS/ME is also very unpredictable - symptoms constantly change from each week, day and hour to the next. I'll finally find a treatment or a way to work around a symptom I've had for months when it will gradually disappear of its own accord only to be replaced by something completely different but equally disabling. It's so frustrating.
The severity of symptoms is also extremely variable. Maybe for an hour or two once a week or so I'll be able to do some typing, or maybe have a friend come for a quiet visit, write some e-mails or maybe paint, but these magical hours (or half hours more likely) are by no means assured and there have been times where months have gone by without one. There are also a large number of problems, cognitive as well as physical, that are constant, so I am never symptom-free or able to do such tasks without extensive modifications and careful planning beforehand. I also often pay the price for such activities by feeling much sicker 24 - 48 hours afterward, for hours or days. Usually days.
I am never sure what sort of problems I'll have to deal with when I wake up each morning - all I know is that they'll be serious, especially if I've done anything other than rest in the days before. Worse than 'usual' days also happen for no reason at all. This waxing and waning pattern is diagnostic of the illness.
Like many others with this illness, I have severe CFS/ME. I am completely housebound and mostly bedbound. I am usually well enough to shuffle to the toilet and bathroom when I need to, I can turn myself in bed, and I can feed, dress and wash myself although these tasks are extremely difficult for me. But that's about it and these basic tasks are usually all I can do in a day. I have to rely on other people to do all the housework, cook and cut up my food for me, wash my clothes, buy things for me and make phone calls on my behalf. Pretty much everything. I am never free of many of the symptoms mentioned previously. Sometimes I am also paralyzed, unable to speak, have small seizures or I have fevers that can last for weeks. I am always in pain. At the moment I'm well enough to also be able to have a friend visit once a week for a few hours and/or to write or paint occasionally for short periods.
But there are also people who have even more severe CFS/ME than I do. One woman I know with CFS/ME has almost died twice from this illness. On the second occasion she stopped being able to breathe by herself, to swallow even her own saliva or to talk at all. She was having grand mal seizures daily despite medication. She had severe muscle twitches and hallucinated due to extreme pain. She was completely paralyzed for months and had to be turned, fed, and bathed by others. Doctors gave up on her and she was sent home to die. Thankfully she was then visited by a specialist who she credits with saving her life. She says, "It took months before I became a bit better again and could move/whisper and swallow a bit." But she is still almost entirely bedbound and needs daily help with all her personal care. Although symptoms this severe aren't common I know a handful of people that suffer with similar problems to these I've just described.
CFS/ME can also kill.
Ricky Buchanan, who runs a CFS/ME website explains: "It can overwhelm the immune system so much that opportunistic infections come in and kill the patient, much like in AIDS". Death can also result from other things such as stopping breathing for example. When she was just 19, Alison Hunter died from a long battle with CFS/ME. In a quote taken from her memorial foundation web site: "In the end, heart damage, massive ulceration to her throat, failure of her gut and bowel and horrendous neurological symptoms, conspired to defeat her."
There are also people who have only moderate symptoms. But people with moderate illness are still dong it really tough. Passing for 'almost normal' is hard in different ways. Dealing with the varied symptoms of CFS/ME while trying to also study or work part time (with little or no support or understanding) leaves people struggling just to get by, leaving nothing much left over for anything else in life. Even in moderate cases, CFS/ME is one of the most frightening, tragic and debilitating illnesses there is.
"When asked on CNN how many of his CFIDS patients had fully recovered in fifteen years, Dr Peterson equivocally and chillingly stated, "None.""
(Munson, P. p. 5)
From what I've read although information on recovery is scarce, the recovery rate is between 0 and 6%. Some people do improve over time but this is by no means guaranteed. The level of recovery experienced also varies greatly and can follow a frustrating cycle of relapse and remission. Often a recovery is more of a remission. Some people continue to get sicker and never experience improvements in their health. Some people die. Studies published in international medical journals have also included people who have had CFS/ME for 20 or 30 years. (Victorian CFS/ME Society)
(*If you're newly diagnosed with CFS/ME however, never lose hope that you will be one of the lucky ones that never has the severe version of the illness and that you will experience some level of recovery. It does happen, just not to everyone unfortunately, but as long as there's a chance, and there is, there should be hope.)
So why is CFS/ME not regarded as a serious illness by some people?
Why is so little money going into CFS/ME 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 CFS/ME suffer abuse and neglect at the hands of their doctors, nurses and carers? Why are parents being blamed for their children's illness? Why are the many studies proving the physical basis of CFS/ME not enough? Why is so little being done to change all these things?
Well, as I said, it's complicated. This is not an exercise in blame but instead about asking people to examine their assumptions about CFS/ME and to look more closely at how exactly they came to have them and what they are based on. Very few people (I would say none) who hold negative or dismissive views on the illness actually spent any time properly studying and/or listening to its victims, or reading any real research about the illness before their minds were made up. Those who have listened know CFS/ME for the tragedy that it is. As Socrates would argue, it's not the number of people that hold an opinion that is important, but rather how that opinion has been reached that should determine the weight it is given when making up our own minds.
(Botton, p. 13)
Setting the record straight - the many myths of CFS/ME
MYTH: Having CFS means you are just very tired all the time - the name says it all
The way the illness has been named after just one symptom of it is like diabetes being named 'chronic thirst syndrome'. It oversimplifies and trivializes a complex illness. Sadly, most people don't know there is an enormous difference between just having chronic fatigue and having CFS/ME as they assume that they are the same thing.
Hillary Johnson, author of Osler's web, (a book that exposed the real story behind CFS/ME and its dismissive public image), commented that the name was selected: "by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about cost to insurance companies and the Social Security Administration than about public health. Their deliberate intention - based on the correspondence they exchanged over a period of months - was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the greatest tragedies in the history of medicine."
Intentional or not, the damage the name has done the credibility of sufferers, and the research setbacks it's caused, are enormous. For example, medical groups that have no knowledge of the illness use people with CFS/ME as well as those with mere fatigue - indiscriminately - in drug trials and studies into CFS/ME. Then they wonder why their results are inconsistent! It would be funny if the consequences weren't so serious. The stupid name given to this illness has much to answer for. As Peggy Munson says in her recent book on CFS/ME, "Semantics should not hold up the treatment of a group of people who are clearly suffering, but unfortunately, - with CFIDS -they have." (p. 15)
CFS is probably the most common name for the illness in most countries, but due to the misunderstandings it causes, other names have emerged. Some American groups use the name CFIDS (chronic fatigue immune dysfunction syndrome), to help differentiate CFS/ME from mere fatigue.
Myalgic Encephalomyelitis (ME) is the name used for this illness in England, Canada and Australia. It means myalgia (muscle pain) plus inflammation of the brain and nerves (encephalomyelitis). While myalgia is common in the syndrome, inflammation of the brain and nerves is rarely present. The brain is certainly affected, but not in this way. The name ME does not describe the technical aspects of the illness correctly, but at least it conveys the severity of the illness.
(Victorian CFS/ME Society)
Sufferers of the illness generally prefer the name ME to CFS for this reason.
You may think that a name shouldn't be that important and you're right, it shouldn't be, but words have such enormous power. I envy people with illnesses like Multiple Sclerosis and Parkinson's as so much is understood just by mentioning such names. Ironically, CFS/ME is physically is very similar to both these illnesses, it just isn't as well understood.
(Macintyre p. 31)
Fatigue is certainly a symptom of CFS/ME but it is merely one of many. Fatigue is also not really the right word. The fatigue felt by people with CFS/ME bears no relation to any sort of fatigue that anyone without personal experience of this illness has ever felt at any time in their lives. It is not a signal to the body to rest as normal fatigue is, but rather it is the result of bodily processes going haywire, organs malfunctioning and a body struggling to function despite being seriously compromised and damaged. It's not just more severe than normal fatigue, it's a completely different problem altogether. Mark Lovelass MD, an infectious disease specialist and head of the AIDS and CFS Clinic at Oregon Health Sciences University, testified at a 1995 congressional briefing, that a CFS patient, "feels effectively the same every day as an AIDS patient feels two months before death."
(Berne p. 25)
MYTH: CFS/ME is psychosomatic or psychological in origin
Few people know that many well-known illnesses were incorrectly attributed to psychological causes in their early years. Just 30 or so years ago Multiple Sclerosis, for example, used to be called 'hysterical paralysis.' Diabetes, asthma, stomach ulcers and epilepsy (just to name a few) were all thought to be psychological illnesses at one point.
(Macintyre p. 30)
It's a familiar pattern. When a physical cause can not be found for an illness straight away it is often labeled as being psychologically caused -even if there is no evidence for that either.
Years later, with modern testing, it is obvious that there are many physical abnormalities and deficiencies in the bodies of CFS/ME patients. But the mental illness label seems to go on far more easily than it comes off, as Dr Berne explains: "Double standards allow medical doctors to diagnose psychiatric illnesses in patients in the absence of a known physiological cause, but do not typically allow the psychiatrist or psychologist who rules out emotional causes to rule in physiologic illness. That is, acceptable practice allows a physician to say "It's all in your head" but how often does a psychiatrist or psychologist say "nothing wrong with your head; the illness is all in your body"?"
(Berne, p. 91)
It's not that CFS/ME researchers, doctors and sufferers don't want to be associated with mental illness, it's that we want treatments and ultimately a cure to be found, and it can't be found in trying to cure a mental illness that doesn't exist.
It was always obvious to those doctors who did not rely purely on test results, however, that CFS/ME was a distinctly different problem to that of depression or anxiety. Dr David Bell MD, an expert in the field, asks:
"If CFIDS is mental illness, why does it occur in epidemics? Mass hysteria is an inadequate answer because the symptoms of mass hysteria are random, whereas the pattern of symptoms in CFIDS is remarkably consistent. . . There is a simple way to prove that CFIDS is not somatisation or malingering. With these latter two conditions there may be numerous variable symptoms, but they are random. In CFIDS the symptoms are not random- they form a specific pattern. The statistical odds of any two patients describing these symptoms in an identical way are astronomical. Yet patient after patient describes the same symptom complex in CFIDS . . . If I were to choose a single diagnostic test for this illness, I would give a patient a standard dose of a cyclic antidepressant and observe the response. Patients with CFIDS are immobilized the next day, describing the effect of a hangover with severe fatigue."
(Bell, p. 163)
People with depression do not typically have this type of negative reaction to standard antidepressants. In fact, depressed patients and those with CFS/ME have little in common:
"Strict clinical differences distinguish CFIDS from depression, such as specific profiles on psychological, immunological, and neurological tests, or the fact that people with depression tend to respond positively to exercise, which often exacerbates CFIDS symptoms and causes decreased blood flow to patients brains. CFIDS patients generally want to do things, but are too sick, whereas people with primary depression tend to lose the desire to participate in activities. CFIDS patients have ongoing flu-like symptoms such as sore throats, severe headaches, chronic pain, nausea, and irritable bowel type symptoms, uncommon to those with primary depression. In addition, CFIDS patients exhibit measurable brain impairment such as slowed information processing, abstract reasoning problems, loss of IQ points, and difficulty using words and numbers, indicating that "the inner workings of the brain are weak."
(Munson, P. p. 157)
Children with CFS/ME are not immune to misdiagnosis either:
"Though school officials and doctors may attribute the child's complaints to psychological causes, they seldom can back up their opinions. School phobia, for example, is a manifestation of separation anxiety. Children with separation anxiety display symptoms when anticipating separation but which resolve when separation does not occur. In CFIDS, symptoms are present not only during school hours, but after school and on weekends as well. Also, symptoms such as fever, lymph node pain, night sweats, and muscle and joint pain are not features of school phobia. Those who are apt to diagnose depression run into the same inconsistencies. . .Children with CFIDS can become depressed, but usually do so because no one believes they are ill."
(Verillo & Gellman p. 327)
Although depression plays no part in causing the illness, it is sometimes, but not always, a symptom of the illness. Secondary depression is common in chronic illnesses and mood changes such as irritability, depression or anxiety are common in other brain disorders such as Parkinson's, Multiple Sclerosis or Stroke. (Bell p.54 - 55) CFS/ME is no exception: "Numerous illnesses are associated with secondary depression. For example, patients with malignancies are depressed for the obvious reason that their life is in danger. Secondary depression in patients with serious malignancies is so reasonable and expected that a patient without it would have his or her sanity questioned. Secondary depression is seen in Multiple Sclerosis, Lupus and virtually all other chronic illnesses.
(Bell p. 55)
Characteristics of major depression, such as feelings of guilt, loss of pleasure in life, etc. are not present in CFS. In addition, children and adolescents represent a higher percentage of patients in CFS than in depression."
(Victorian CFS/ME Society)
The only thing that people with CFS/ME are sometimes depressed about, is having CFS/ME.
MYTH: There is no evidence of physical illness in CFS/ME
It's hard to know how to defend this one. Not due to lack of information, but because there is so much, and much as I might like to, I can't show you all of it! Contrary to popular belief, CFIDS is a distinct, recognizable entity that can be diagnosed relatively early in the course of he disease, providing the physician has some experience with the illness.
(Verillo & Gellman p. 21)
"Many startling abnormalities have been found in CFIDS patients in almost every bodily system- such as extremely low blood volume, enzyme pathway disruptions, cardiac disturbances, and malfunction of the hypothalamus-pituitary-adrenal axis. . . One remarkable study, utilizing specific brain scan techniques, found the effects of CFIDS on the brain to be strikingly similar to AIDS dementia. Earlier research discovered punctate lesions in CFIDS brains resembling those of Multiple Sclerosis patients. Dr Paul Cheney found that in dual chromatography analyses, many CFIDS patients actually had more derangement of the brain, on a biochemical level, than Parkinson's or Alzheimer's patients. Dr Sheila Bastien, who studied a group of educated patients, was stunned to realize that patients who initially appeared very lucid had suffered tremendous drops in IQ points, so severe in some cases that "a few performance IQ's were startlingly close to the legal definition of idiocy.""
(Munson P. p. 1)
Other abnormalities/deficiencies found so far include (but are not limited to); abnormal chemicals found in urine, autonomic nervous system abnormalities, neuro-endocrine abnormalities, vestibular disturbances, muscle membrane defect, abnormal protein synthesis in muscle, abnormalities in oxidative metabolism, depressed numbers and functions of Natural Killer cells, low levels of circulating immune complexes, abnormalities in number and function of lymphocytes, low levels of several autoantibodies, altered levels of immunoglobulins, RnaseL activity is 'upregulated'.
(Macintyre, p. 42 - 77)
Elevated liver enzymes, Hypothyroid, reduced TSH, low levels of growth hormone, mitochondrial impairment (abnormality in the cells' ability to produce energy) Krebs' cycle abnormalities, decreased amino acids, insulin resistance, extremely low circulating blood volume, elevated red blood cell count, reduced cardiac output, hypercoagulability, abnormal red blood cell membranes, low blood pressure, neurally mediated hypotension and reduced blood flow to the brain
(Berne p. 149 - 163)
David Bell, MD takes issue with reports of "normal" physical examinations as well stating that "Virtually all (CFS) patents will have abnormalities on physical exam." (p. 57)
The theory that currently holds sway is that CFIDS is caused by a virus. This point of view is supported by history (CFIDS epidemics have followed polio epidemics), incidence (correlation with a flu-like prodromic illness), symptoms (swollen lymph nodes, low-grade fever, sore throat), and similarities with other viral ailments, notably mononucleosis and post-polio syndrome. A viral cause is also indicated by research.
(Verillo & Gellman p. 19)
But there is so much more funding needed; "It is as though researchers can find only the tracks of the beast, while the quarry itself evades capture".
(Verillo & Gellman p. 20)
MYTH: If you were really ill, you'd look ill
CFS/ME, like many chronic illnesses, is said to be 'invisible'. Michael J. Fox, for example, has Parkinson's, but apart from shaking a bit he looks fine. Appearances can be deceptive.
Chronically ill people also often try very hard to hide as much of their illness as possible (until it becomes severe enough to make hiding it impossible at least) wanting to avoid revealing their weaknesses to others, not wanting to appear to be looking for sympathy or to invite negative comments. I think it's human nature to try to put on a good front for others and not to complain much even if things are really difficult. It also lets you pretend to yourself that your health problems are not really happening and gives you a false sense of control over them.
With CFS/ME, people also don't realize that they probably only ever see us at our very best. I used to have to rest completely for 2 weeks so that I would be well enough to sit up and talk for half an hour at my doctor's appointment. I used to collapse immediately after the appointment and it took weeks before I was anywhere near recovered from it. But all my doctor saw was the half hour where I appeared to be almost normal. (Nowadays I am not well enough to see my doctor in person at all). Resting for long periods before and after doing anything at all is a big part of living with CFS/ME but it's not a part that other people see.
But even when I'm at my best it's obvious that I'm unwell in some way. Sure my cheeks may be rosy, but if you look past that you'll notice that I can't sit upright for more than a few minutes, that if I stand up for a minute or longer my feet often turn purple, that my hair hasn't been brushed for weeks because I can't lift a brush, that I am wearing a singlet top despite the fact that it's winter, that I've put on 30 kilos despite not eating much except vegetable soup, that I forget the point of what I am saying in every second sentence and forget basic words just as often and I can't stand anything more than very dim light or tolerate normal noise levels among other things. Of course these things vary person to person but I think there will always be some outward signs of illness. It is said that we appear 'normal' but I think we only appear normal if you don't look very hard.
I think people see what they want to see.
MYTH: CFS/ME is something that just affects a few middle class people
In the early days of CFS/ME it took repeated doctors visits and persistence to finally be diagnosed with the condition (little was known about it by most doctors) this was a luxury only the rich could afford and so CFS/ME became known as a middle or upper middle class ailment, a profile that had nothing to do with fact but rather on the way the medical system worked and the way the data was collected.
"The image of CFIDS as a white middle-class women's disease is hard to live down. It lingers in the public mind, so that people are still surprised to learn that there are children, African-American, Hispanic, Asian men and women of all ages and classes that have the disease. The profile turns out to be wrong."
(Griffin p. 31)
"It is our opinion that far from ME/CFS simply being a disease of the upper middle class, many of those who fall ill as children, adolescents, and young adults become a significant proportion of the chronic poor."
(Johnson p. 687)
CFS/ME is very common. It's more common then MS, lung cancer or breast cancer, or HIV (in women) with an extremely conservative estimate of 800 000 sufferers in the US (some place it closer to 2 million) (Bell p.231) and around 36 000 in Australia. Children and teenagers are not immune either, children as young as five have been diagnosed with CFS/ME. One hundred thousand kids are estimated to have CFIDS.
(Munson, M. p. 198)
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 auto-immune disorders. CFS/ME affects all races and socio-economic groups indiscriminately and has been diagnosed all over the world.
(Victorian CFS/ME society)
MYTH: There's no such thing as an outbreak of CFS/ME
Most people are surprised to know that CFS/ME actually occurs in both epidemic and endemic (single) form. However outbreaks of the illness are far from rare;
"There is a history of recorded outbreaks going back to 1934, when an epidemic of what seemed at first to be poliomyelitis was reported in Los Angeles. This was the first of no less than 52 recorded outbreaks from various parts of the world, up to the present time."
( Macintyre p. 11)
"Many outbreaks occurred right after polio epidemics pointing to a relationship between the two illnesses. An idea supported by the fact that post-polio syndrome and ME/CFS symptoms are strikingly similar. The CDC has recently placed CFIDS on its "Priority One; New and Emerging" list of infectious diseases, a list that also includes Lyme disease, hepatitis C, and malaria. . . While the historical questions of how, when, and where CFIDS originated may be debatable, the question of its current status is not."
(Verillo & Gellman p. 19)
As I mentioned at the beginning, common misconceptions about CFS/ME mean that it affects so much more than just the health of its victims. It can negatively impact on almost every aspect of life.
It can destroy your identity and sense of self worth for one thing -being told you are lazy or making things up for so long takes an emotional toll. As does dealing with serious illness with little support:
"It is difficult to describe the effect of being told you are not really ill when you are. The disjuncture between private experience and public image is so severe."
(Griffin p. 32)
Patricia Fennell, a psychosocial clinician and researcher has found that many CFIDS patients experience:
"a post traumatic stress disorder (PTSD) -like syndrome because of the social context in which they are sick."
"This trauma" she asserts, "is caused by abusive and/or ignorant doctors, a negative cultural response, and the overwhelming and continuous grief of remaining sick for a long period of time without relief."
(Munson, P. p.9)
From Ricky Buchanan, a CFS/ME sufferer:
"The most common cause of death in patients with CFS is suicide. Unsurprising when you think about it -its pretty hard to stay OK with yourself when most of the world thinks you're just "tired all the time" and in fact you're paralyzed, on narcotic painkillers due to the overwhelming agony, are totally bedridden and suffering epileptic seizures."
The negative attitude to people with CFS/ME can also lead to abuse. For example I am currently forced to live with a family member that chooses to ignore the reality of my illness and who causes around a third of my relapses (loud sound causes me excruciating seizures and severe heart/breathing problems that often persist for days afterward) as well as seeming to enjoy shouting abuse at me, telling me that I am so worthless I should kill myself, or that I should drop the act and stop 'pretending' to be so sick. Or laughing at me as I struggle to remember how to walk. There is no way he would think he could get away with such behaviour if I had Multiple Sclerosis rather than CFS/ME. But then again maybe he would, some people just like to pick on those less able to defend themselves.
As one man with CFS/ME writes:
"In spite of ample evidence to the contrary, some people will simply prefer to believe that CFIDS and other disabilities are nothing more than depression and hysteria. In my own opinion, such people find that it serves their own purposes better to think that way. They are mere opportunists."
(Rotholz p. 228)
I'm not sure that the people around me would let him get away with it so easily if I had Multiple Sclerosis though and that's what really infuriates me. The name of my illness shouldn't mean I don't deserve basic respect from those around me, but often it seems like it does.
Abuse and neglect from doctors, nurses and carers is also very common. This is an exert from the Alison Hunter Memorial website (set up after she died from complications of CFS/ME):
"Nurses walked past her bed, ignoring her in favor of those with readily defined diseases. Six weeks before her death, a new specialist suspected Alison might have the complex immune syndrome Behcet's disease. With a legitimate label, the establishment became accepting of Alison, and even kind. "It was almost too cruel," says her mother, "to see her treated as she should have been all along." But Behcet's was never confirmed and by then Alison was so very ill. In the end, heart damage, massive ulceration to her throat, failure of her gut and bowel and horrendous neurological symptoms, conspired to defeat her. James Isbister, the head of hematology at Royal North Shore Hospital, treated Alison when she was a child and again when her illness returned in her teens. . ."To be honest I felt helpless towards the end," Isbister says. "On many occasions I was extremely embarrassed about the way she was treated by the system. A lot of the terrible things Alison went through were doctors projecting their own fears and inadequacies. How anyone could not think she had a major medical illness was beyond me." Alison, he said, was, "like someone going through a concentration camp" - suffering terrible physical distress compounded by insults and inhumanity."
But it is the children with CFS/ME 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.
(Bell p.76 -79)
There are also other serious problems for the child:
(Verillo & Gellman p. 327)
"The real losers in this blame game are the children. . . The focus [has shifted] away from the arduous and tedious work of making children well again. Let's get on with it."
(Munson, M. p. 194)
As Anne Macentyre writes; "Of course it is much more convenient to label the condition hysterical; then there is no need to research the illness, patients can be ordered to pull their socks up and go back to work, and those that have no experience of the devastating symptoms can rejoice in being far too well-balanced to get 'that sort of complaint.'" (p. 29)
But however inconvenient or scary it may be, CFS/ME is a devastatingly severe physical illness with no cure, and countless sufferers 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 support.
It has to stop.
As one CFS/ME sufferer asks: "stand up for me when I'm not around. You will probably have more credibility than I do. Spread the word about CFS. . . Talk about the crying need for support services similar to those offered by the AIDS networks in our communities. Stop others from blaming the victims. When you hear charges that I am exaggerating my symptoms set the record straight. The symptoms that show, the ones that I talk about, are just the tip of an iceberg."
Written by Jodi Bassett, February 2004
Please send comments or queries to: email@example.com
P.S. I've only really just scratched the surface of all these issues so if you would like further information on CFS/ME and its political history, treatment options or current research into the illness, the 3 books:
Stricken, Osler's Web, and Verillo and Gellman's CFS: A Treatment Guide are excellent and between them cover everything you could ever need to know in much more detail than I could include here. I strongly recommend them for anyone who wants or needs to know more.
The details of each book are listed below.
1. 'Alison Hunter Memorial Foundation' website, http://www.ahmf.org/
2. 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
4. Botton, Alain de 2000, The consolations of Philosophy, Penguin Publishers, London
5. Buchanan, Ricky, 'Fibromyalgia/CFS Foothold', http://tertius.net.au/foothold/
6. Gage, Carolyn - So you know a dyke with CFS... available at http://wwcoco.com/cfids/toc.html
7. Griffin, Susan 2000, From What Her Body Thought: A Journey into the Shadows in Stricken; Voices from the Hidden Epidemic of Chronic Fatigue Syndrome, ed Peggy Munson, The Haworth Press, New York
8. Johnson, Hillary 1996, Osler's Web, Crown Publishers, New York
9. Macintyre, Anne DR 1998, M.E. Chronic Fatigue Syndrome: A Practical Guide, Thorsons Publishers, London
10. Munson, Mary 2000, Taking the Rap: Parents, Blame and Pediatric CFIDS in Stricken; Voices from the Hidden Epidemic of chronic Fatigue Syndrome, ed Peggy Munson, The Haworth Press, New York
11. Munson, Peggy (ed) 2000, Stricken; Voices from the Hidden Epidemic of Chronic Fatigue Syndrome, The Haworth Press, New York
12. Rotholz, James 2000, CFIDS, Suffering and the Divine in Stricken; Voices from the Hidden Epidemic of Chronic Fatigue Syndrome, ed Peggy Munson, The Haworth Press, New York
13. Verillo, Erica F & Gellman, Lauren M 1997, Chronic Fatigue Syndrome - A Treatment Guide, St. Martin's Griffin, New York
14. 'Victorian CFS/ME Society' website, http://www.home.vicnet.net.au/~mecfs/
- Myalgic Encephalomyelitis