Free Web Counter


Welcome to Callisto Curley.com!
This website is the personal website of Christian musician and poet Callisto Curley and will feature Christian essays by Callisto Curley.


Chronic Fatigue Syndome (CFS)/
Myalgic Encephalomyelitis (ME)

INTRODUCTION:

While listing all the possible symptoms in every form of the disorder would be far too lengthy, Chronic Fatigue Syndrome is recognized as a condition:

1. that had a definite beginning, usually while under extreme stress, trauma, or during/soon after an illness or exposure to toxic chemicals/drugs, usually initially manifesting as a flu-like illness

2. in which the primary symptom is a particular type of chronic pathological exhaustion consisting of:
a. an exhaustion that is not like a healthy tiredness after exercise nor like the lack of energy of an obese inactive person, but a condition of feeling desperately ill and drained, overstimulated, and depleted, with frayed nerves
b. an inability to endure normal physical and mental exertion, stress, and stimulation
c. an exaggerated physical response to exertion, stress, stimulation
d. low endurance and stimulation tolerance, and high fatigability and nervous system irritability
e. a constant, chronic baseline of abnormal fatigue apart from any significant exertion, stress, or stimulation, in the absence of any known chemical or pathogen or disorder that could cause it
f. excessively long recovery from normal exertion, stress, and stimulation, or an inability to recover

3. accompanied by other symptoms of autonomic instability, nervous system hypersensitivity or dysfunction

4. that is moderately to severely disabling and lifelong, either chronically debilitating or fluctuating with periods of moderate functioning alternating with severe relapses

BE AWARE THAT YOU MAY ENCOUNTER MILDER DESCRIPTIONS WHICH ARE NOT TRUE CHRONIC FATIGUE SYNDROME/MYALGIC ENCEPHALOPATHY, BUT IS OFTEN USED BY THE MEDIA AND THE PUBLIC TO DEFINE IT, OFTEN BY NEUROTIC PEOPLE CLAIMING TO HAVE THE LATEST "POPULAR ILLNESS" YET ARE NOT ACTUALLY PHYSICALLY ILL AND DISABLED BY IT.  Such claims are also made by those in Stage 1 of the illness, the milder beginning stage of the illness which often does not lead to the permanently disabling dysfunction, but instead eventually remits.  Such people "recover" and then the media and the medical profession claim that Chronic Fatigue Syndrome is not so bad and sufferers do indeed recover, something that the CFS/ME community of sufferers knows first-hand is a lie.


THE NATURE AND ORIGIN OF CHRONIC FATIGUE SYNDROME:

Though the theory that Chronic Fatigue Syndrome is caused by a viral infection is controversial and in general, still disbelieved by the majority in the medical community, the condition could possibly be contagious through close contact, especially during the initial manifestation, which may resemble influenza or a respiratory infection. It is believed by many that an unknown virus (speculated by some to be EBV, HHV, or an HIV type virus) may be involved, causing functional damage to the brain, but the mechanism of the dysfunction and its contagion is unknown.  It is possible that the virus involved may lie dormant in the body or simply does not manifest until/unless the nervous system is sufficiently weakened for it to manifest.  After the virus acts on the nervous system, damage remains in the form of functional abnormalities.  These abnormalities of the central nervous system form a syndrome of CNS dysfunction in the same category as Polio and Multiple Sclerosis, which accounts for its original name - Myalgic (referring to peripheral pain), Encephalomyelitis (referring to inflammation and subsequent dysfunction of the brain and spinal cord).  Myalgic Encephalopathy is a variant, encephalopathy referring to degenerative brain disease.  Chronic Fatigue Syndrome is the most well-known name for the illness in the USA and is the label the Centers for Disease Control and Prevention (CDC) uses.  Though the term merely describes a symptom (inadequately) and sounds trivializing, vague, and even misleading - who couldn’t claim to be "always tired"?, it is considered the preferred term because the medical community has not been able to "prove" the nature of the CNS dysfunction to "officially" categorize it.  Because it is believed that a virus that attacks the immune system initially causes the syndrome, it has also been called Post Viral Fatigue Syndrome (PVFS) and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), including it in the same category as AIDS, though the immune dysfunction cannot be "proven" and the virus cannot be "detected", so these labels are also "unofficial".  (It has, however, been proven to be a degenerative CNS dysfunction, and it is a syndrome of chronic pathological exhaustion, so Iill refer to it as Chronic Fatigue Syndrome/Myalgic Encephalopathy, which I feel is the most accurate term, albeit cumbersome.

It is impossible to estimate the number of people who suffer from true Chronic Fatigue Syndrome/Myalgic Encephalopathy, but the numbers exceed those afflicted with AIDS or MS.  In similarity to AIDS, sufferers of CFS/ME rarely die of the disease itself (though it is possible to die from overexhaustion), but most eventually die of complications.  Common complications of CFS/ME include: pneumonia, serious infections, cancers, heart problems, rupturing of internal organs, strokes, and brain failure.  There is little chance of recovery and no known cure or treatment, contrary to what the media might say.  People who are predisposed to developing Chronic Fatigue Syndrome/Myalgic Encephalopathy tend to be very sensitive, intelligent, creative, energetic, nervous types.  It is most often developed in adolescence or early adulthood, and is more common in women and in Caucasians in general.  It is almost exclusively found in English countries (America, Australia, Britain, Canada, New Zealand).  It has been found to occur in epidemics as far back as 1955 in Britain, when variants of the term ME were first used to describe it.  It was noted by researchers that during the epidemics the vast majority of the sufferers fell ill in late summer to autumn, with only a few scattered cases at other times of the year, and only certain groups of people were affected, usually professionals, students, and the "white-collar" workers, after they had overexerted themselves or been under severe stress or previously ill.  Outbreaks have continued to spread in all the previously mentioned countries since the 1955 British epidemic.  A form of the syndrome has been documented among veterans of the Gulf War (Operation Desert Storm) and named Gulf War Syndrome.  It has been speculated to be from exposure to chemical or germ (biological) warfare.  Before it received the label of Chronic Fatigue Syndrome from the medical community in the USA in 1988, and Myalgic Encephalomyelitis in Britain, this condition was usually included in one of two categories of central nervous system disorders causing weakness - neurasthenia and encephalitis.  In 1983 there was a severe epidemic in New Zealand, which was brought over to North America in 1984.  It was sometimes called the "yuppie flu" in the 1980's because of the prevalence of the illness among white, young, wealthy, educated, businessmen and women and college students.  " The CDC four-city surveillance study of CFS identified a population of patients that was 98% Caucasian and 85% female, with an average age at onset of 30 years.  More than 80% had advanced education and one-third were from upper income families." - The Centers for Disease Control and Prevention (which subsequently decided to do blatantly biased studies which yielded different, more "preferable " results, after complaints from politically correct groups...and of course the later studies did not match what is really occurring among the CFS/ME community).  The reason for this is simple (though the medical community wants to deny reality): People who fit this profile tend to have a hypersensitive and hyper-reactive nervous system and a small, delicate, These people are already extra-sensitive to stimulation and become more debilitated by stress and more easily exhausted than other people, and therefore more vulnerable to falling prey to this disorder.  So it could be said that people who are generally nervous (an emotional sensitivity), very intelligent (a mental sensitivity), and have poor endurance and toleration of physical stimuli (a physical sensitivity) are the most likely to develop this brain dysfunction, especially while under severe stress.  It is possible that those who do not fit this profile are sometimes carriers - they get sick with the virus (often in a flu-like illness) but then completely recover, but meanwhile pass it on to others who fit the profile and become permanently disabled from it.  Soldiers who participated in Operation Desert Storm and subsequently became ill and disabled from a particular epidemic of Chronic Fatigue Syndrome/Myalgic Encephalopathy, termed Gulf War Syndrome, are a notable exception to this rule as they do not fit the typical profile of people vulnerable to developing CFS/ME.  This incidence of the syndrome developing among a hardy and healthy, mostly male, and largely non-Caucasian population only creates more mystery surrounding this peculiar disorder.

Over time it appears that more and more sporadic outbreaks are occurring, and more and more people are becoming susceptible to developing to the debilitating lifelong condition.  I suggest that maybe the reason this condition (and other mysterious sensitivities and disorders)are becoming more prevalent, is that in this age, human genes are becoming weaker and weaker as a part of the devolution of human beings and the overall deterioration of the material world that began with the Fall of Man.  Human genes in this age are much weaker than the genes of our ancient ancestors, and in addition our exposure to unnatural chemicals (including poisonous pharmaceuticals and possibly biological weapons) is increasing, and thus we are seeing an increasing number of genetic disorders and hypersensitivities and those vulnerable to them or afflicted by them.


THE UNTOLD HISTORY OF CHRONIC FATIGUE SYNDROME

The first documented epidemic appeared in Akureyri in 1947-49.  This is a city on the northern tip of Iceland.  Then an epidemic broke out in certain London area hospitals in 1955-58 and only the staff of those hospitals fell ill (several hundred people), but none of the patients. It had been noted that the staff had been experiencing work exhaustion and had recently received immunizations, and some had been weakened by previous illness.  During this time period, epidemics also broke out in Australia. In 1983 an epidemic broke out in New Zealand, and was brought over to America, causing the US epidemic of 1984-88.

All of these epidemics occurred during the same time of the year.

Some veterans of Desert Storm (1991) developed a condition resembling CFS/ME, which has been termed Gulf War Syndrome (GWS), the existence of which the US government and military, most notably the Department of Defense and the Centers for Disease Control and Prevention, continues to deny. The medical community has blamed the illness on everything from exposure to pesticides and other chemicals to a tropical fever spread by sand flies, but it is obvious that it is the same illness as CFS/ME and must have the same origin.  It is also interesting to note that the daughter of the Shah of Iran died from CFS/ME.

The following obituaries are from The National CFIDS Foundation, Inc., 103 Aletha Rd., Needham, MA 02492-3931 USA.  © 2000 National CFIDS Foundation, Inc.  Used with permission.

Eric W. Booth, M.D. 48 year-old male. Died June 18, 1995. Had CFIDS/ME for 16 years. Cause of death: cardiac dysrhythmia, cryptogenic myocardial fibrosis. Occupation: Radiologist. Despite illness, campaigned for research and better treatments. Wrote in 1991, "I have been very seriously ill for the last five years... Despite my feeling this way, I am unable to convey this to my medical colleagues...I have come to believe that physicians suffer from "compassion fatigue." (Source: BMJ, Vol. 311, 28 Oct 1995 and Death Certificate.)

Mary Louise Cardillo: Female in early 40s. Died July 1995. Cause of death: autopsy revealed nothing. Died in hospital. When her physician, Anthony Komaroff, M.D., requested samples and sent them to another laboratory, high levels of HHV6 were found. A warm and brave person who so wanted to enjoy life. (Source: letter and test results from surviving parents, friends.)

Glenn Marcus: male in early 20s, 1994. Cause: Unknown. Autopsy showed stomach seemingly exploded with bits found throughout body. Died in his sleep while attending college part-time in California. A Massachusetts resident, he had CFIDS/ME since a young teen. Remembered as a warm, cheerful youth with many unfulfilled dreams. Survived by one older brother and parents. A memorial fund that distributed library books in his name was established. (Source: parents, support group leader.)

Susan Simon: Female, approx. 50. Died 1993. Long term CFIDS/ME patient. Cause of death: hit by a truck while crossing the street in her wheelchair in NYC when planning to see a lawyer about suing the NIH's Stephen Straus. (Source: Osler's Web by Hillary Johnson.)

Marie Vale: Date of death unknown. Died at age 47 from leukemia, now believed to be a complication of ME/CFIDS. Marie was the director of internal affairs for NASA with a high security clearance. She went to the NIH (National Institutes of Health) in 1982 for a diagnosis but was given none. In 1986, she got a copy of her records that indicated she had "Chronic Epstein-Barr Virus," now known as CFS. A few days before her death, she told a friend that this was being covered up from "very high up." (Source: close friend who now suffers from ME/CFIDS.)


SYMPTOMS OF CHRONIC FATIGUE SYNDROME

As stated before, CFS can encompass many varied symptoms, but the ones I personally (and many others) have had in the severe form are the following (I have tried to keep this brief and succinct and categorized):


LIVING WITH CHRONIC FATIGUE SYNDROME

Living with Chronic Fatigue Syndrome is hellish, requiring an ongoing difficult struggle to calculate and maintain a delicate balance in diet, physical and mental exertion, rest and sleep, and everyday care.  Most sufferers are reduced to a shell of their former selves, losing their work/education, talents/abilities, mental and physical functioning, and social lives, forced into total incapacitation, required hospital/nursing home or home care, chronic extreme pain and distress and senility/dementia, and eventual suicide.  The prognosis is almost always very grim which may result in severe depression.  Because CFS is not (usually) a terminal illness and because after a few years of decline there is no hope of recovery, the torture and torment is permanent and the condition will never end, health and former abilities never to be restored.  Paradoxically, the struggle to maintain stability every day is in itself unbearably intellectually, emotionally, and physically exhausting.  All of this leads many to seek relief from the agony and struggle and despair by means of a self-inflicted death.  This problem is further compounded by the belittling and disbelieving attitude society and even medicine has taken towards CFS.  Regrettably, Chronic Fatigue Syndrome has been given a bad name by an ignorant population that has not encountered true CFS.  The name has been used as a catch-all term to label vague undiagnosable complaints or general tiredness, and even worse, has been used to describe psychosomatic or hypochondriac complaints or interpreted as meaning such.  As a result, the medical community that deals with CFS patients feels the need to keep changing the name in an attempt to make the public (and medical community) aware that it is a serious illness, just as serious as obvious, recognized illnesses such as AIDS and MS.  The name Chronic Fatigue Syndrome has been alternated with the names Myalgic Encephalomyelitis, Myalgic Encephalopathy, Chronic Fatigue and Immune Dysfunction Syndrome, Post Viral Fatigue Syndrome, and a host of other names, each suited to various forms or aspects of the disorder, but marked by the same debilitating exhaustion as the primary complaint. Myalgic Encephalomyelitis or Myalgic Encephalopathy usually refers to the infection itself in the acute stage and is primarily used outside the USA only, as the US medical community still disacknowledges the illness. Chronic Fatigue Syndrome or Chronic Fatigue and Immune Dysfunction Syndrome (used in the USA) and Post Viral Fatigue State/Syndrome (more commonly used outside the USA) refers to the resulting neurological dysfunction and progressive deterioration.  The cause of this is the skepticism occurring in society about newly discovered or poorly understood disorders, the variance in symptoms among sufferers, the fact that there is little or no observable data to prove a person has CFS (and the scientific method relies only on what is objectively visible), and the need for the medical community to categorize and label suffering in order to take it seriously.  True Chronic Fatigue Syndrome is evident, however, according to clinical analysis of the symptoms and the history of the condition.  Sadly, there is an atrocious lack of physicians who are familiar with CFS or recognize the severity of it, and most sufferers end up going from doctor to doctor and specialist to specialist, only to be dismissed as a hypochondriac or told there is nothing wrong with them according to all examinations and tests and medical labels.  Even caring physicians or ones who are able to detect abnormalities and/or believe their condition turn them away out of lack of knowledge and information, usually saying something like “I'm sorry, but your condition is unknown to medical science.”  Sadly, it makes little difference as there is no known treatment for nervous system dysfunctions, though lack of medical backing creates a stigma and skepticism about the severity of the patient’s illness and suffering.  Family and friends often don’t understand or just can't cope with the complex rigid care needed by sufferers of CFS nor the mental impairment and emotional instability they suffer, and therefore they become overwhelmed and consider the sufferer to be a terrible burden and may even abandon the person.  Relationships are strained as despondency grows with the hopeless outlook of the situation, the loss of a meaningful or at least functional life together, and especially as the loved ones become less and less themselves.  Feelings of resentment may even arise from perplexity over how someone can be so severely ill and need such intense care in the absence of any understandable or diagnosable abnormal findings on physical exams or blood tests and without a terminal diagnosis or understandable “label”.  It tends to become convenient for others to instead label the person as a demanding hypochondriac or to at least think the person is exaggerating about the suffering, as it is impossible to understand or even imagine it without experiencing it personally.

One of the most truly terrible dangers in not maintaining the delicate balance of everyday care is the possible spiral into physically dysfunctional chaos, in which the person’s physical functions and everyday life and schedule become completely out of control.  If balance is not regained or the chaos continues to snowball, especially in a severely bad period, there is the possibility of ending up in a completely unbearable and impossible paradox.  This is primarily a result of out of control agitation of the central nervous system and irritation and inflammation of the central nerves, and conflicting symptoms, e.g. an inability to go without food concurrent with an inability to eat, an inability to go without sleep concurrent with an inability to sleep, an inability to rest concurrent with an inability to exert energy, etc.  The most frightening part for the sufferer of CFS is the dependency on others who can’t understand the tortures, the torment, and the dangers of not having needs met urgently and carefully to maintain stability.  The victim of this condition is left feeling helpless and powerless, living in terror, worrying about the dependability and trustworthiness of caretakers and their ability to understand, alienated and even ostracized, and without any hope for the future.  The caretakers themselves often have little or no support.


TREATING CHRONIC FATIGUE SYNDROME:

A common misconception is that since the patient has fatigue, he should be given stimulants to relieve it.  Stimulants do not relieve exhaustion, they worsen it by depleting resources and stressing the nervous system more.  People with Chronic Fatigue Syndrome do not have a lack of energy and nervous stimulation.  On the contrary, they are overstimulated rather than understimulated, and the nervous system cannot get enough rest to replenish their strength.  A simplistic but helpful comparison would be to the condition of a normal person after taking large amounts of stimulants and losing a lot of sleep and then afterwards experiencing burn-out and frayed nerves and feeling drained.  Add to this the inability to sleep or rest to "catch up".  Another comparison would be to a person running until he is so exhausted that his legs fail and he loses his breath, and yet he is forced to keep running beyond his strength.

CONTRARY TO COMMON BELIEF, ANTI-DEPRESSANTS AND OTHER PSYCHIATRIC DRUGS DO NOT HELP CHRONIC FATIGUE SYNDROME.  SADLY, THEY ARE PRESCRIBED AS A CLAIMED CURE-ALL (OR TO INDUCE SUBMISSION, COMPLACENCY, AND ACCEPTANCE) FOR ANY INCURABLE ILLNESS OR DISTRESS IN LIFE.  This stems from an atheistic humanist viewpoint that this is the only life, the only reality, so the job of psychiatry is to force people to accept it and desire it and put their hope and faith in it, no matter how absurd it is to trust in a miserable and temporary flawed life run by fallible humans who are not going to "evolve" into perfect beings and do away with death and suffering.  Depression, anxiety, and agitation from frustration are normal reactions to such a difficult and miserable condition.  Such psychological states should not be considered a mental aberration unless it is irrational and exaggerated.  In that case it is still not a mental illness but is due to the mental deterioration caused by a physical disease.  In either case the patient will not benefit from treatments for mental illness as they will not make the problem go away.

The only real treatment (to maintain stability and not become worse) is to avoid all stimuli in life and to refrain from any mental or physical exertion.  In addition, everyday care must remain stable, with a consistent schedule and a constant adequate food intake (without sugars, every few hours), as much sleep as possible (strong sleeping pills may help), avoiding all stress.  THIS MUST BE FOLLOWED PERMANENTLY, and it is, of course, impossible to do.  And it will not halt the physical and mental deterioration long-term.


MY THEORY:

I believe ME is somehow related to Polio for the following reasons:

There are many similarities between the symptomatology of the Polio and ME infections. The resulting permanent CNS damage of ME, termed Chronic Fatigue Syndrome in the USA and Post Viral Fatigue State/Syndrome in other English countries, is similar to the damage caused by Poliomyelitis, particularly to the degenerative condition called Postpoliomyelitis Syndrome. Also the link between immunizations for Polio and the development of ME has been firmly established by medical researchers.
Polio primarily infected and disabled those who fit the exact same profile as CFS/ME sufferers. Others suffered a minor form of the illness and fully recovered or were naturally resistant (political correctness was not in vogue back then, which is why that fact was acknowledged and not covered up). Infants and very young children were the exception. Epidemics only occurred in Caucasian, primarily English countries.

But... Poliomyelitis primarily attacks the spinal cord, causing peripheral damage. ME primarily attacks the brain, causing autonomic damage.
Polio is self-limiting and physical therapy can often help improve disability caused by the damage (the exception being the development of Postpoliomyelitis Syndrome). CFS/ME is not self-limiting, and by the very nature and location of the damage, is often progressive and degenerative, and is exacerbated by even minimal effort.


THEN WHAT HOPE IS THERE?

There is no hope in this life, for everyone will suffer and die.  And there is no hope in this world, for new medicines will just bring new problems and cannot stave off anyone's death forever.  The only real hope is in knowing what will happen to you after you die, which is permanent, unlike health or illness or anything in this world.  Do you know what will happen to you after you die?  Do you have eternal life with the God who created you?  Believing in God or belonging to a religion cannot provide eternal security and assurance that you will have life after your body ceases to function.  There must be a God who created everything, and He must be both loving and just if He is God.  There must be something beyond this life in this body and this world.  Where will your conscious self be when your heart stops beating?  Gone forever into nothingness?  Then it will not matter that you ever lived.  Surely this isn't all there is, surely the God who created everything intended for people to live forever with Him.  But how can anyone be good enough?  How do you know if you're saved?


UPDATE:

It seems the CDC has finally realized that CFS is a problem based in the hypothalamus, as I stated many years ago. Other researchers have also shown that it is a condition of nerve inflammation in the brain.
Unfortunately, my personal battle with CFS has resumed. Though my condition was in remission for seven years, in recent weeks, it has flared up somewhat. I am currently doing experiments to see if possible treatments I have devised will help this condition. I am experimenting with:
Vitamin B Complex - vitamins beneficial to the brain and nervous system
Vitamin C - a vitamin that is beneficial to the nervous system and is an anti-inflammatory agent
Scullcap - An herb that helps heal nerve damage in the CNS, promotes sleep, calms stress, and is also an anti-inflammatory agent
Transfer Factor - protein molecules produced by t-cells, that give key immune information to the body's immune system

COMMON ACRONYMS USED IN REFERENCE TO CHRONIC FATIGUE SYNDROME

AIDS - Acquired Immunodeficiency Syndrome
CDC - U.S. Centers for Disease Control and Prevention
CFS - Chronic Fatigue Syndrome
CFIDS - Chronic Fatigue and Immune Dysfunction Syndrome
CNS - Central Nervous System
DOD - U.S. Department of Defense
EBV - Epstein-Barr Virus
FM - Fibromyalgia, an illness thought to be related to CFS
GWS - Gulf War Syndrome
HHV - Human Herpes Virus
HIV - Human Immunodeficiency Virus
IBS - Irritable Bowel Syndrome
LD - Lyme Disease, a bacterial infection often confused with CFS
ME - Myalgic Encephalomyelitis or Myalgic Encephalopathy
MS - Multiple Sclerosis
NIH - U.S. National Institutes of Health
PVFS - Post Viral Fatigue Syndrome/State
PWC - Person With CFS
RA - Rheumatoid Arthritis
URI - Upper Respiratory Infection
VA - U.S. Veterans Administration