Chronic fatigue deficiency syndrome, commonly known as CFIDS, affects an estimated 2.5 million Americans and has recently been labeled 'the disease of the nineties'. However, it was once dismissed as 'a bizarre form of hypochondria' among stressed out young professionals, and mainly because of this reason the disease didn't receive national attention until 1984, and wasn't given a clinical name until 1988. Although the symptoms to vary from patient to patient, a general description of the disease consists of harsh 'flu like' symptoms that do not go away. Exhaustion is a large part of it, and many think of it equaling a complete loss of energy. For reasons such as these, CFIDS is often hard to diagnose, and at the beginning, it was thought to be a 'made up' disease found in one's head.
Like many diseases, the cause of CFIDS is unclear and has not yet been 'pinpointed'. In the mid-eighties, the Epstein-Barr Virus was thought to be the sole cause of CFIDS, but later researchers decided that it was symptom, rather than a cause. Since then, specialists are having a hard time coming up with the central cause of CFIDS. This makes researchers skeptical that there may be just a few causes, rather than many. However, there are many theories about how the debilitating disease develops. One leading hypothesis is that CFIDS is caused by retroviruses, 'self-contained strands of RNA that can translate themselves permanently into the chromosomes of certain cells'. This would be much like how HIV is the retrovirus of AIDS: the cause before the actual [disease]. SOme, like Dr. Levy, a leading virologist at the University of California, San Francisco, think that the leading illnesses occur when there is an 'interruption of the normal control process' in the human system'. Other doctors think that the disease is caused by but one virus, while still others disagree that the cause is several new viruses, or a new virus working with some less recent ones. But most think that the disease is not a new one, rather, it has been out there, undetected, for years. There is even reason to believe that well known people such as Florence Nightingale and Charles Darwin might have suffered from it.
Just as there are an array of causes of CFIDS, the same holds true for the list od symptoms that goes along with the CFIDS disease. Like the causes, there is long list of symptoms that patients have reported as well. Doctors say that the beginning symptoms of CFIDS are a sore throat, tender lymph nodes, low grade fever, and incredible exhaustion. At first, the patient generally believes that this is nothing more than a virulent flu, but after a few weeks, there have been no signs of recovery. Sleep disorders, headaches, joint swelling, and difficulty in driving soon add to the symptom list. It has also been found that patients have sensitive digestive tracts and abnormal blood flow to the brain. A new sensitivity to drugs, foods, and fumes is common as well.
SInce there are no blood tests pr other laboratory methods to diagnose CFIDS, the doctor must rely on the way a patient feels and the symptoms they describe. Unfortunately, CFIDS is very much a 'symptoms' disease, and because of a[n array] of symptoms this disease carried, patients are often misdiagnosed. Depression and [infectious] mononucleosis are the main diseases that can be confused with CFIDS, and the two that patients most commonly misdiagnosed as having. Autoimmune diseases such as multiple sclerosis and lupus have also been linked to CFIDS because of the common weakened immune system. CFIDS sufferers are commonly misdiagnosed with having these two diseases as well. This weakened immune system is one reason that many patients are vulnerable to germs and colds.
Doctors approach the disease in a variety of different ways, and must do this because of the variety of symptoms they are dealing with in CFIDS. In Japan, for example, physicians have found the of LEM and lentinan, extracts from the Shiitake mushroom, to be helpful when treating CFIDS patients. Here, in the United States, doctors have found that treatment really varies from patient to patient because no two patients have [exactly the] same symptoms. One method can work for one patient, but not [for] another. However, most doctors agree that rest is the biggest factor when on the road to recovery. But the amount of sleep that those with CFIDS need can be difficult to receive, as it can range anywhere from 12 [to] 20 hours a day. Vitamins, as well as nutritious foods, have also proven to be helpful. Vitamin B shots and magnesium injections have assisted with the general symptom which plague CFIDS sufferers. Furthermore, coenzyme Q-10 has [been] found to improve muscle weakness and joint pain found by most patients. In one patient's case, amino acids and multiminerals prescribed by a chiropractor worked wonders. Herbs and diet are also thought to be helpful in treating the disease as well as light exercise and chiropractic care. Physical therapy has also been found to have a positive effect on sufferers and brought some degree of benefit to about 80% of it's patients. Acupuncture and homeopathic remedies are also gaining recognition in the fight to help CFIDS patients regain their lives. It has also been noticed that when patient understand their case and symptoms, and realize that it's not all in their head, as once told, their recovery seems to speed up.
Complications do arise in the cases of CFIDS. One is the fact that although drugs such as ampligen and adenosine monophosphate (AMP) are believed to help CFIDS patients, many are still in experimental use. Therefor, insurance policies will not pay for them. For most CFIDS sufferers, the idea of trying to pay for costly medications, such as ampligen, is inconceivable, and simply does not fit within their budget. This often frustrating for patients, especially when many doctors believe that these medications, AMP in particular, might really be of use. AMP is a naturally occurring body product, and is believed to be depleted in CFIDS patients; thus, doctors believe that is could help as well. And because 50% of patients show evidence of depression, low doses of anti-depressants is a technique used to treat CFIDS. Sinequan, elavil and prozac are the most common being used. Unfortunately though, doctors are generally hesitant to recommend the use of narcotics because of the worry that these drugs have the potential to cause addiction. A second complication previously mentioned is the danger and hassle of being misdiagnosed. It is not at all uncommon for a CFIDS sufferer to be treated for a disease that, in [fact], they [won't] have for a number of years.
Through my research, I have come to the conclusion that not enough people know about this vicious disease, or, worse yet, not take it seriously. More than a decade after first being labeled, doctors are still not even sure about the simplest parts of the disease; the cause, the symptoms, etc. It is important that people of this country become knowledgeable and educate themselves about this debilitating disease that affects so many. Rather than brushing a patients symptoms aside, doctors need to say, 'Here is what's wrong. How can I try [to] help?' it shouldn't have to take a famous sports figure or movie star to acquire CFIDS to make us really start working to learn about this disease.
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