Debilitation and Devastation
"What is CFIDS/CFS /ME and what do these letters stand for?" "What is this disease that has take so much of my life away?" "Where did this illness come from?" "When will it go away and let me be my old self?" If you have had any direct or indirect contact with this immune dysfunction disease that has plagued people world-wide, you have heard these inquiries at least once from either you or someone you care about who is a sufferer. You want to know more about who this invisible enemy is that has removed so much from you or your loved one's life.
The initials represent a designation for a virtually "unknown" disease that afflicts over a million people around the world. This syndrome is recognized by many different names such as Chronic Epstein-Barr Virus (CEBV), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Chronic Fatigue Syndrome (CFS), or Myalgic Encephalomyelitis (ME). Until recently, there had been no specific designator to indicate that many people around the globe were tolerating and suffering from the same adversity. The coordination and combination of any medical research or treatments in fighting this disease were futile because there was confusion over if this illness was indeed the identical one that was being reported in other areas of the world. One country would refer to this syndrome as one name and another would call it something else. The actual name for the syndromes that each area was accosting were actually creating a lot of confusion. Each area was approaching the disease from a divergent direction when various physicians, who were involved in research or actual treatment for ailing patients, began to notice similarities in manifestations of their specific sicknesses with other noted illnesses being studied in other parts of the globe. They started to talk to other doctors in other countries and conferred on the reality that this disorder was indeed the same one that was being addressed and confronted in many different countries under various names.
It became evident early
into researching this affliction that the combined efforts of all medical
professionals around the world would be necessary to determine what this
"new" immune deficiency disease is and how it has and will affect the
world's populous. This imperative demand for joint efforts to combating this
syndrome was one of the main motivating factors for some agency to come up with
a name that would expressly label the ailment. In the late 1980's, the Center
for Disease Control in the
There are still many disputes around the world about the particular connotations that this title contains for those who suffer with this disease. There is an insinuation that the name for the syndrome demonstrates that the illness only makes a person feel fatigued and exhausted. The name doesn't illustrate and acknowledge all of the other major symptoms that are associated with this sickness. Some specific individuals and organizations are opposing this proposed name of the illness and are taking action to motivate an effort to have another deliberation with the CDC on considering alternative terms for this sickness. Researchers, government agencies, physicians, and private organizations who fund projects found it an absolute necessity to have one special name for this disease that was affecting individuals from all corners of the earth. For anyone in the CFS community, it may not be as important as to what this syndrome is titled as compared to finding the cause, correct treatment, and cure for this disease.
The research that has been done so far on this affliction has shown that this is not the first time that this disease has been active on this planet. There have been miscellaneous outbreaks of a similar ailment at various sites all over the world in the past centuries. All of these sporadic epidemics were briefly noted and documented by physicians in their times. Most of the clustered epidemics were labeled as another type of illness or malady. These old-time doctors didn't have the technology that physicians have today, so there was no dissemination of information between one who may have some current documentation of the disease to another scientist who had some important research data available. Each specialist coped with diagnosing the syndrome based on his level of expertise and familiarity with other diseases of his time. Depending on what their doctors classified them as at the moment, most initial sufferers of this syndrome were in hospitals, at home, or in psychiatric facilities thinking they were crazy, lazy, or depressed.
It is remarkable that today's researchers scrutinizing this disease have been able to correlate the past documentation since the sporadic information was concealed under the premise of other diseases. The corroboration discussed the same type of disease infecting people, but was never specific enough to show that there was any particular cause, treatment, or cure. It isn't very encouraging to researchers to see that this isn't the first time that the medical community has had to cope with this illness. Without having more documentation or validation to the specifics of the outbreaks of past sicknesses, they have no choice but to search out all possible foundations of the disease. This categorical direction means that they have had to start from what little they could gather from past documentation and postulate on which way to go next in attempting to specify any particulars about the disease. Medical specialists and researchers in various fields of study have entered the chronic fatigue immune dysfunction syndrome arena and are coordinating efforts to work together to discover more information about this illusive syndrome, where it came from, and what it is. Thanks to today's medical technologies and advancements, the undertaking of getting to the root of this disease will be less frustrating and aggravating than in the past. Both researchers and specialists alike are working towards the common goal to find out as much as they can about CFIDS. They have already managed to create some presuppositions and conjectures about the illness and how it affects the human body.
Physicians and researchers have spent many long tiring hours studying the various aspects of chronic fatigue syndrome and have concluded a few important speculations. There is some kind of viral factor involved in the animation of this illness. Various specialists and researchers are combining efforts to categorize which special group type of virus is involved in stimulating the overactivation or underactivation of the immune system. There is an unmistakable immune incapacity that results in a body having severe allergic responses and manifestations. These bodily sensations are very similar to having an allergic reaction to some kind of foreign stimuli that has entered the system or as if an individual is having a bad case of the flu. Verified research suggests that there is probably more than one type of virus at work. Vagueness exists about which specific viruses they are and they still remain a mystery. Some researchers think that these viruses are in the cytomegalovirus or retrovirus family. Others tend to disagree. There is ongoing exploration and investigation into which viruses are the culprits who cause the various symptoms.
Another part of this complicated puzzle is genetic disposition. It is supposed that a person has to have some type of genetic marker or specific gene in his or her system that indicates if he or she is predisposed to contracting the viruses that cause the immune system to malfunction. This assumption infers that not every human being is going to catch the CFS-related viruses because he or she may not have the necessary genetic component for stimulation of the viruses. This concept validates the assumption that not every member of a household will get sick with this syndrome when another person in the same house has the disease. Physicians are also trying to demarcate which families or persons within a family unit may be more susceptible to coming down with chronic fatigue immune dysfunction syndrome and why family members don't appear to infect others who live in the same household or casual contacts with persons who don't live in their home. There are records of specific outbreaks in communities and families which suggests that this theory does have some substance. Research is forging some headway in attempting to be able to distinguish which genes are the ones in question.
The next consideration that doctors and researchers alike have concluded that influences the odds of contracting this sickness is past health history. If there have been many health related issues to contend with, specifically any immune system diseases, the individual is at a higher risk for getting this viral onslaught. A past history of allergies, mononucleosis, or severe chicken pox have been some indicators in a health history that could show a definite connection to the onset of CFIDS. Again, this is another area that is being scrutinized and studied to identify if there is a pattern of past health problems that could indicate if one person is more susceptible than someone else for getting this illness.
Other components supposed by the medical community are gender, race, age, and personality type. From all of the research and collected data to date, chronic fatigue syndrome seems to affect more women than men. The majority of sufferers classify as Caucasian women who are from the ages of twenty-something to mid-forties. They tend to be high achievers and are caregivers/caretakers who live in a stressful environment that demands a great deal from them. Their day to day intensity to survive is much more concentrated and extreme. These beings exist in a highly pressured and compacted life style where there is little room for personal fulfillment because all energies are focused on caring for others ahead of themselves. These strong ladies somehow subsist within almost impossible odds in their environments. However, this cross-sectional representation doesn't depict the reality that this disease affects any person. CFS doesn't discriminate on any basis. No one of any sex, age, or race is safe from the ravages of chronic fatigue immune dysfunction syndrome. No one knows why and there is no current available data to prove why this circumstance happens but children who tolerate this disease tend to improve and recover quicker than adults. Documented cases in babies and children under five years old are scarce and rarely seem to occur. A conclusion that can be drawn in both instances indicates that the immune system of a younger person is stronger, healthier, and more resilient to fighting the disease than an adult.
The environment can also contribute to determining why a person may have contracted chronic fatigue syndrome. Elemental influences that he or she lived within and around such as toxins, chemicals, and odors could have overwhelmed her system and caused the body to sensitize to these various influences. In turn, her vulnerable body was weakened and became susceptible to the onset of the syndrome. There are many chemicals that are released into the air a human breathes and the water he drinks on a daily basis. Pesticides and insecticides are sprayed on fruits and vegetables as they grow. Any animal meats will contain chemicals which range from the food that the animals ate themselves for sustenance to hormones injected into them to make them fleshier so they produce more meat when slaughtered. If a sufferer eats this type of food item, these types of chemicals and hormones invade his body also. Household cleaning products and personal hygiene items come into contact with the skin and seep into a body through the pores. It is obvious that an individual cannot be abreast of all the caustic items that are introduced into her daily environment yet imagine how many environmental poisons and toxins a person comes into contact with over her existence. The thought of the amount of possible contamination that a person subjects herself to on a daily basis is unnerving. It makes logical sense that this poisoning may have contributed to she being more susceptible to this sickness.
Researchers and physicians alike agree that stress plays a major role in how, when, and why a person contracts CFIDS. The weakened immune system was in a very fragile state when a sufferer came into contact with the viruses. Some physicians even speculate that the viruses may have somehow already been latent in the system before the individual became ill. At this vulnerable time, there was some kind of high stress or intolerable, instigating circumstance that caused the viruses to activate or motivate themselves in the body. The agitator triggered an excessively sensitive system and as a result, the person became ill. Most sufferers can pinpoint exactly when this event happened and then there are others who can recall being very sick for many years with no specific onset of symptoms. All agree that once this aggravator invaded their beings, their lives haven't been the same since.
It is very common to hear from toleraters of this disease that all of the manifestations of their disease surfaced immediately after a prolonged bout with the flu or having a flu-like sickness. In researching and documenting this illness, physicians have discovered that there are other "triggers" that have been reported by patients such as chemical reactions to allergens, bacterial infections, intense emotional stress, surgery, physical injuries, and physical stress. One or more of these mentioned instigators can somehow start a severe dysfunctional reaction within the body that encourages the onset of chronic fatigue syndrome.
CFS is an immune dysfunction disease that sneaks up on a person with no warning or notice. The individual doesn't have time to prepare for all of the havoc that it is going to reek in his life. If the person is lucky and have a short bout with this illness, he may only consider the infestation to be a petty inconvenience in his life for a few months. However, it is more common for the chronic fatigue immune dysfunction tolerater to suffer for months or years on end with severe consuming completely debilitating fatigue. There is an intense amount of physical discomfort that accompanies the exhaustion in the body. The pain and/or symptoms that he tolerates are a result of the body's reactions to combating the foreign entities invading the immune system. The severity of symptoms can increase or decrease at any time without any indicating signs that they will become more or less tolerable.
The most predominant symptom in tolerating CFIDS is devastating, exhausting fatigue. This manifestation along with the entire dysfunction of the immune system itself is the determined basis of suffering with the disease. The degree of how fatigued an individual can be can go from one extreme to another. The person could attend a low stress related event and become extremely tired and weary or find herself in bed indefinitely from sheer exhaustion as a type of pay-back for the short amount of time that was spent at the event.
Since this illness has such a wide variance of individualized symptoms for sufferers, the world's medical research community determined that a set of guidelines had to be established that would define and specify the criteria for determining if a person has chronic fatigue syndrome. The main points in qualifying under the initial instituted CFS appraisements are that the individual has to have had relentless exhaustion for at least six months, a fifty per-cent decrease in his or her activity level since the onset of the disease, and have to have eliminated any other illnesses that could be causing like manifestations in the body. It is the unyielding extent of the exhaustion which causes a distinct reduction of daily activities that limits a person who suffers with this syndrome.
Another portion of the qualifications that have to be addressed to see if an individual has chronic fatigue immune dysfunction syndrome is for the person to be suffering from this entire grouping of major identifying symptoms:
disabling fatigue and exhaustion
muscle deficiency or weakness in entire body
pain or aching in muscles
your exhaustion worsens with any type of physical exertion
frontal and back pressure headaches especially at base of skull
mental and nerve system ailments with a sensation that your brain has swelled and aches inside your head
sleep disorders-such as not feeling rested after sleeping for a long time or insomnia
the intense, distressing commencement of a number of symptoms all at once
aching and pain in swollen lymph nodes in neck, under arms, in groin area, and behind the jaw on either side
consistent sore throat
The type of fatigue that a sufferer tolerates with in having CFIDS is a different type of exhaustion than may have ever been encountered before in her life. Most people think of fatigue as being identical to just being tired. However, this type of debilitation exhausts a person so, he or she isn't capable of even minimally functioning. It is almost as if every ounce of energy in the body is being drained out of every pore in the skin. There is a sensation or feeling like someone has attached hoses to the bottoms of the feet and is sucking all of his or her life force out of the body. Some people who have this disease compare this intense kind of weakness to how it feels being terminally ill and their life force is slowly dying. Chronic fatigue syndrome is unique unto itself because the depths of this kind of exhaustion can only be measured in terms of its sufferers.
There is no definitive way to describe what it feels like to have this type of fatigue to someone who has not experienced the sensation. The individual can't seem to be anything but sedentary. It is a phenomenal effort just to get the body to move and getting out of bed every day seems like one of the most time consuming and painful tasks in the world. In attempting to move around, it appears that the body seems to weigh ten times more than it used to before the person became sick. The sufferer gets worn out so much quicker than before with any efforts he or she makes to do anything. The fatigue will worsen with any activity of any kind-especially any strenuous movements. If a sufferer pushes himself to try and exercise the way he used to pre-CFS, the weariness will get worse. A wave of nausea and a flu-like sensation usually accompany the extreme draining of exhaustion. His body seems like it is sick all over simultaneously. The tiredness will definitely increase with too much exercise and the body may almost feel as if it is shutting itself down. When he feels this way, a tolerater will find out that there is no choice except to lie down and rest or he will faint. However, if the person does faint, he will then have no choice but to lie down. This weariness seems to be the sole connector to the fluctuation of each and every other symptom. If a sufferer is totally exhausted and overwhelmed, many symptoms are probably going to worsen to the point of being bedridden. If the person is having a "good" day and feeling a little bit more rested, the manifestations are lessened and there seems to be one or two symptoms that are more dominant than the rest. Other symptoms appear to be lessened because the individual is more capable of handling the discomfort since he or she got some rest. At the onset of the syndrome, a tolerater may be lucky enough to have two to four hours a day of feeling partially rested and slightly energetic. As time progresses, he or she will gain more and more "up" time although any headway will be at a snail's pace. This "waxing and waning" of symptoms is extremely common throughout the entire duration of this syndrome. These regressions and abatements can also stem from other sources such as being involved in a stressful situation, chemical and hormonal changes in the body as a result of being ill, and exposure to some type of allergen.
There are times where it may appear that there is no reason for a reflux into total and complete exhaustion. Having this syndrome means that there are times where no explanations are available and the sufferer just have to tolerate the agony. One aspect that she will gain through direct experience is that every relapse or remission will be briefer in duration than the one before it. The individual will never go back to being as exhausted and debilitated as she was at the onset of the sickness. So for every time that there is a "low" or "waning" period of time, she can count on the actuality that it will be less of a bout than the previous one. These declines will get further and fewer between and the duration time will be less and less.
Weather conditions can also instigate more exhaustion than a person may be used to coping with now he is ill. Extreme heat or cold can really aggravate the weakness in the body. Sufferers who live in warmer and colder regions of the world have a harder time coping with this illness than someone who may reside in a temperate climate. Some sufferers have found that their symptoms get better living in warmer, but not hot weather. A tolerater may detect that he feels much worse and his symptoms appear more aggravated during the hot summer months and/or in the middle of winter. Barometric pressure seems to be another aggravator for chronic fatigue immune dysfunction sufferers. All a person may want to do during these times is to stay in bed, rest, and pull the covers up over his head because the weather has agitated his aches and pains to the point of discomfort and intolerability. The only solace during these weather conditions is that they will eventually subside and/or change.
The length of time that a person will suffer with CFIDS does vary. This type of viral infestation will go away on its own when it is good and ready. It is extremely independent and stubborn. A general comparison to this set of circumstances is having the flu. If an individual contracts a flu virus, she can only get medical treatment to address the symptomatic aches and pains that accompany the flu. There are no instant cures or treatments for the flu virus itself. The virus will subside, remiss, or exit the body when it is ready to. It doesn't care if she is uncomfortable, not sleeping, lethargic, vomiting, and suffering with a splitting headache. No matter how much the person wants it to leave her system, the sufferer doesn't have the control of this situation-the virus does.
This comparison is very similar to the situation that is occurring in the body with contracting the chronic fatigue syndrome viruses. The immune system is alternating between over and under working. Even though it is functioning at a minimal level, the CFS viruses are in turn spreading throughout the blood stream and becoming more widespread within the immune system. This infestation is causing the immune system to malfunction even more. Each healthy cell that has had the viruses invade it will now be replicated into a new one which contains the viruses in its center. The result is that there are more bad virally infected cells in the body. Since there are so many dysfunctional cells moving around in the immune system, there aren't enough of the "good" type of cells left to keep fighting off the chronic fatigue immune dysfunction syndrome virus-related cells. The immune system becomes suppressed and the body exhibits symptomatic aches and pains because it is feeling and sensing all of the warring that is going on inside of it. The longer the viruses have to invade the body, the more they can reek havoc on the various bodily systems. Since a sufferer is ill, his or her body has a slower metabolism and can't reject and tolerate all of the stresses that the viruses cause. All of the cells in the body will sooner or later be afflicted. The person's systems will work overtime just to keep the body minimally functioning.
There are suppositions from the world medical community that with so much duress being forced on an individual's body, there is a stronger probability that he could suffer from some type of future medical dysfunctions if he or she tolerates this disease. The person could have a stronger risk of contracting cancer because the natural killer cell activity in the body is defective or a predominance to have a heart attack because of an impaired heart muscle. There are many diseases like renal failure and arthritis that have been mentioned in association with this syndrome. The attention that CFS sufferers need to have from all over the world in addressing this illness won't happen until some specific type of severity is discovered. It is sad to think that over a million people can suffer with this disorder and this is not enough reason for the world-wide medical community to take this disease more seriously. Research and grant money to this point in time have been minimal compared to funding for other diseases of comparable seriousness. Most of the money that has been donated or given to research this syndrome has centered from sufferers, their families and friends, chronic fatigue syndrome support groups, and special non-profit organizations devoted to helping find a cause and cure for this disease. The federal governments of some countries are now coming forward to acknowledge this illness and offering some funding to help aid research about what causes this disease. Many more efforts will have to be made from around the world before there is enough attention focused on the entire breadth of what this illness is and how many people it has already affected.
CFIDS has like manifestations to many other diseases and that is what makes diagnosing this syndrome so difficult. The symptoms that a tolerater may think or feel are akin to fibromyalgia, encephalitis, depression, rheumatoid arthritis, and AIDS. There are many dominant symptoms that seem to connect this syndrome to AIDS more than any other disease. AIDS and CFIDS have many similar characteristics. Both diseases have some kind of viral basis to them. They have a specific type of virus or viruses that instigate the symptoms. AIDS was noted to have one special kind of virus that attacked the immune system. Chronic fatigue immune dysfunction syndrome research so far has indicated that there is a possibility of one or two viral families that are its source. The major concern in both diseases is that the viral population in the world is mutating and creating new strains of "old" viruses every day. There are going to be a lot more "new" virally based illnesses in the future that could transform and mutate into other species. Each generation of viruses could become more potent and more lethal. Essentially, scientific research must stay informed about the mutant viral families that are coming into being. The medical research community has an obligation to the world populous in apprising us of any viruses that could possibly become world-wide epidemics.
A person's immune system is under siege in tolerating either syndrome. Both illnesses have viruses that attack the immune system of the sufferer. The impaired killer T cells can't reproduce themselves so they can fight off the invading viral agent. The result in both cases is a body that can't defend itself correctly. Because the immune system is damaged and can't help the rest of the body in warding off the viruses, it weakens and has to concentrate all energies on keeping the body's basic systems working as smoothly as possible. Since the organ systems are weak and not capable of functioning to their proper level, agonizing with either disease over a length of time can induce other types of sicknesses to reveal themselves. Abnormal cell growth can be a result of any long term suffering. This set of circumstances sanctions the opportunity of having a stronger possibility to have cancer, pneumonia, blood disorders, etc.
But before a tolerater convinces herself that she could possibly have AIDS, this individual should be aware of the vast oppositions between the two illnesses. The overall fatigue that she feels is much worse with CFS than with AIDS. It may sound strange since AIDS toleraters become so sick but it is true. A CFIDS sufferer is going to be weaker because her body still has the capability to fight off the viral invaders in the immune system. This battle going on in the body is what is actually making the person feel fatigued. An AIDS tolerater's immune system is close to a complete shut down all of the time. Her system can't keep up the fight in warding off the virus. The immune system has no more power and just gives in to the viral infestation. The virus eventually assaults all of that person's organ systems. CFIDS rectifies itself over time where as AIDS doesn't. In most cases, if AIDS patients are left untreated, the infection proves to be lethal. The AIDS virus is not present in any normal blood samples of CFS sufferers. These are two distinct, highly individualistic viral invasions. An individual does not have AIDS because she has chronic fatigue immune and dysfunction syndrome. Chronic fatigue syndrome isn't lethal and having the viral infection doesn't kill a person. As time passes, there is a gradual improvement or in some cases immediate recovery from CFS. AIDS sufferers have limited life spans even if there is treatment available. The therapies and health management that they have extends their quality of life but these regimens don't eliminate the viral infection itself because the AIDS infestation is permanent.
There is a correlation has been made about chronic fatigue immune dysfunction syndrome and death. Some people have passed over as a result of suicide connected to tolerating this syndrome. These individuals couldn't find a way to cope with the constant suffering. They found the pain was insufferable and too much had been taken away from their lives in contracting CFIDS. These individuals felt the only alternative they had to not being able to survive with the disease is not to live at all. Some suicide attempts are made as a result of reaching out and not getting the right kind of support and empathy that the sufferer requires while being ill. Very few people know anything about the disease and how it feels to contend with this type of struggle on a daily basis. Most healthy people are so wrapped up in their own lives they tend to forget a chronically ill person suffering in silence nearby.
Contagion is an issue within this chronic fatigue syndrome puzzle that still can't be clarified. No one, be it researcher, physician, specialist, or sufferer knows if CFIDS can be directly passed from one person to another through casual contact. There is a consensus among the medical community that the probability of blood to blood contact is not feasible. A sufferer does have the capability to help himself by finding some temporary fixes to address the individual aches and pains while suffering with this illness. There is no current medicine or therapy that will totally eliminate the symptoms or help a sick person regain his or her pre-CFIDS life style.
The tolerater has no dominion over when CFIDS will retreat or leave the body or when the immune system will repair itself enough to be capable of overcoming this syndrome. After the initial onset of this syndrome, the general average for total recovery among sufferers is good. However, the bad news is that there is still no reported cause or cure to date. A person may recover within a few months, a few years, or in some cases never. The average sufferer usually has a duration time of two to six years. If an individual is suffering longer than six years with this disease, the odds of a complete and total remission and/or recovery are minimal. The important factor is that a person will recover when he or she is meant to and there will be a life beyond the suffering. The only concession that the sufferer will have to make while he is recovering is that he or she can't do as much as he may like. It may take years before the body is capable of handling the kind of stresses that everyday living brings with it.