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LOTS OF INFORMATION ABOUT CHRONIC FATIGUE SYNDROME (CFS)/ MYALGIC ENCEPHALOMYELTIS (M.E)
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WHAT IS CFS/ME?
Don't be fooled by the name. Chronic Fatigue Syndrome (CFS, also known as M.E. or Myalgic Encephalomyelitis) is a serious and debilitating illness that can last for years, and sometimes for life. CFS is a recognised syndrome, the cardinal feature of which is profound exhaustion, accompanied by a range of other symptoms. In some cases the illness causes persistent disability, while in others it follows a relapsing and remitting course. People with CFS are not just 'tired for a long time'; CFS is not just 'chronic fatigue'. Many people complain of fatigue (up to 30percent of the population at any one time!), but of all people reporting to doctors with the complaint of fatigue, fewer than 10percent will have CFS. One in five men, and one in three women will say they feel tired most of the time. If you work long hours, have family problems, and are suffering from stress, it is quite common to feel tired. However, only a few people really have the Chronic Fatigue Syndrome. In CFS, the exhaustion or fatigue is usually accompanied by other symptoms which can be extremely distressing and there is no doubt, if you have CFS you will no doubt know it, it will affect every aspect of your life. Researchers from around the world tell us that an illness with symptoms very similar to CFS has been reported since the mid-1700's. Reports continued through the 19th century, and into the 20th century. CFS is not a new illness. However, some researchers believe that the incidence of CFS has increased significantly since 1980. 'Chronic Fatigue Syndrome' is the name adopted for the illness in 1988 by the medical research community. They prefer this name since it doesn't imply anything about the cause of the syndrome, while highlighting the principal symptom. 'Post-Viral Fatigue Syndrome' (or, more commonly in Australia, 'Post-Viral Syndrome') implies a viral cause or trigger, which is not always the case. 'Myalgic Encephalomyelitis' (ME) means myalgia (muscle pain) plus inflammation of the brain and nerves (encephalomyelitis).
Chronic Fatigue Syndrome as a name for the illness is intensely disliked by people with CFS, since it trivialises the illness. It is equivalent to calling diabetes 'chronic thirst syndrome', or Parkinson's disease 'chronic shaking syndrome'. Although the name emphasises the main symptom, it does not convey the potential severity of the illness or the distress that other prominent associated symptoms can cause. In the United Kingdom and Canada, patient self-help groups retain the name Myalgic Encephalomyelitis (M.E), while in the United States, 'Chronic Fatigue and Immune Dysfunction Syndrome' (CFIDS) is common.
THE DEFINITION OF CFS/ME IS:-
One of the first definitions of ME/CFS originated from the work of Dr. Melvin Ramsay. According to Ramsay's definition, the three principal clinical elements of ME/CFS are:
1) A Unique Form of Muscle Fatiguability: where muscle power can take days to recover; and muscle tenderness together with twitchings or spasms can regularly occur.
2) Circulatory Impairment: encompassing cold extremities, heightened sensitivity to climatic change and excessive sweating.
3) Cerebral Dysfunction: encompassing deterioration in memory and concentration; as well as other cognitive difficulties, sleep disturbances and emotional changes.
WHAT IS THE CAUSE OF CFS/ME?
The cause of CFS is unknown, We don't know, there is not one simple cause. for more than a century, doctors have reported seeing illnesses similar to it. In the l860s, Dr. George Beard named the syndrome neurasthenia because he thought it was a nervous disorder with weakness and fatigue. Since then, health experts have suggested other explanations for this baffling illness. In the mid-1980s, the illness became labeled "chronic EBV" when laboratory clues led scientists to wonder whether the Epstein-Barr virus (EBV) might be causing this group of symptoms. New evidence soon cast doubt on the theory that EBV could be the only thing causing CFS. High levels of EBV antibodies (disease-fighting proteins) have now been found in some healthy people as well as in some people with CFS. Likewise, some people who don’t have EBV antibodies, and who thus have never been infected with the virus, can show CFS symptoms. Now there are several research groups around the world, with different opinions. Some believe that the symptoms may be caused by a continuing immune response, due either to a persisting infection or to the failure of the immune system to 'turn off' after an initial infection. (Glandular fever is a common trigger) Other researchers are focusing on disturbances in brain chemistry which may contribute to the symptoms, and some are examining alterations in cellular metabolism which could also be of significance. In 75percent of cases, CFS begins with a viral infection, or what is apparently a viral infection. It begins suddenly, with typical 'viral-like' symptoms. Occasionally CFS begins with a bacterial or parasitic infection, or with a vaccination, or exposure to a toxic chemical - ie., some sort of challenge to the immune system. Frequently associated with this immune system challenge are other factors, such as strenuous physical activity or psychological stress. In up to 25percent of cases, the onset of CFS is gradual, with no recognisable precipitating event. researchers are examining whether people with CFS have a genetic pre-disposition to developing the illness; and whether certain viruses which can evade the immune system are present in people with CFS. Cytokines are chemical messengers of the immune system. They play an important role in the communication between different immune system cells, and in the destruction of some organisms which invade the body. Some cytokines, such as interferon and interleukin, are used to treat diseases such as cancer and hepatitis B. When these cytokines are administered to patients, they develop symptoms very similar to CFS. It has been postulated that continual production of cytokines by the immune system is the cause of many of the symptoms of CFS; this hypothesis is now being tested by research groups around the world. Some studies indicating altered cytokine production in people with CFS have already been published. In breif there are a few possible cause or causes for CFS While a single cause for CFS may yet be identified, another possibility is that CFS represents a common endpoint of disease resulting from multiple precipitating causes. As such, it should not be assumed that any of the possible causes listed below has been formally excluded, or that these largely unrelated possible causes are mutually exclusive. Conditions that have been proposed to trigger the development of CFS include virus infection or other transient traumatic conditions, stress, and toxins. (Infectious Agents, Immunology, Hypothalamic-Pituitary Adrenal (HPA) Axis, Neurally Mediated Hypotension, Nutritional Deficiency) As you can see alot of theories but yet again we are left unsure of the exact cause. Hopefully the future will tell us.
WHAT ARE THE SYMPTOMS OF CFS/ME?
The main symptom of CFS is a new, severe fatigue that lasts for over six months and does not improve after rest. It is disabling all or most of the time, it is so disabling, as to make it impossible to continue normal physical and mental activities. Even normal physical activity exacerbates the feeling of tiredness.
People who have CFS may also have other symptoms such as:
*Profound exhaustion exacerbated by minor exercise - everyone has this symptom
*Fatigue that lasts more than 24 hours after exercise or exertion at a level that the person was previously able to manage without fatigue
*Muscle & joint pain
*Headaches sometimes Migraines
*Tender lymph nodes in the neck or armpits
*Unrefreshing sleep (waking up feeling tired or unrested) or trouble getting to sleep
*Forgetfulness, memory loss, confusion, or difficulty concentrating
*A recurrent sore throat, feeling of enlarged glands in the neck which come and go
*An intense, flu-like feeling
Other symptoms may include:
*Sensitivity to light or sound
*Orthostatic hypotension, which causes light-headedness or dizziness as a result of a drop in blood pressure when standing or sitting up from a reclining position
*Feeling hot or feverish or chills even though temperature may be normal
*Nausea and loss of appetite
HOW IS CFS/ME DIAGNOSED?
Doctors find it difficult to diagnose CFS because it has the same symptoms as many other diseases. When talking with and examining you, your doctor must first rule out diseases that look similar, such as multiple sclerosis and systemic lupus erythematosus in which symptoms can take years to develop. In follow-up visits, you and your doctor need to be alert to any new cues or symptoms that might show that the problem is something other than CFS.
There is no laboratory test which can be used to diagnose CFS, however the diagnostic criteria is as follows:-
Diagnostic Major Criteria (both criteria required)
Persistent or relapsing Fatigue for 6 months
Does not resolve with bed rest
Significant reduction in average daily activity
Other chronic conditions excluded
Diagnostic Minor Criteria (4 present for 6 months)
Sore throat
Painful cervical or axillary lymph nodes
Forgetfulness or memory Impairment
Myalgias or muscle discomfort
Migratory, non-inflammatory arthralgia
No joint swelling or redness
New, Generalized Headaches
Sleep disturbance (not refreshing)
Generalized Fatigue after Exercise over 24 hours
Footnote: Modification of Criteria
Earlier CDC 1988 guidelines required 6 minor criteria
Included those listed above
Other criteria present in prior guidelines
Initial symptom onset acute or subacute
Mild fever or chills
Generalized muscle weakness
Neuropsychiatric Symptoms
Photophobia
Transient visual scotomata
Excessive irritability
Confusion
Difficult thinking
Inability to concentrate
Major Depression
Earlier CDC 1988 guidelines required sign documentation
Prior guidelines (not required by CDC)
Two or more signs must be documented
Physician must document each sign twice
Signs must be present for longer than 1 month
Criteria
Low grade fever
Non-exudative Pharyngitis
Palpable or tender lymph nodes (size <2 cm)
Anterior or posterior cervical Lymphadenopathy
Axillary Lymphadenopathy
HOW DOES CFS/ME RELATE TO OTHER ILLNESSES?
There are several conditions whose symptoms and patterns are so similar that many believe there must be a common mechanism involved. Some research has suggested that dysfunction of the hypothalamic-pituitary-adrenal (HPA) axis may be implicated in several or all of these conditions. This axis controls stress response and many other bodily functions. If HPA dysfunction is truly involved in many of these conditions, it would be little surprise since the neuroendocrine mechanisms of the HPA axis are both complex and delicate, and thus minor variations in such a dysfunction might well produce the variants we are seeing in similar illnesses such as:-
fibromyalgia, multiple chemical sensitivities, Gulf War syndrome, neurally mediated hypotension, Lyme disease, candida, etc. And before the diagnosis of CFS can be arrived at, other conditions which can have similar symptoms to CFS must be excluded. These include cancer, HIV disease, autoimmune diseases, neuromuscular diseases, endocrine diseases, and a range of psychiatric illnesses, to name some. The early stages of multiple sclerosis and systemic lupus erythematosus can resemble CFS, and must be carefully excluded.
MORE SPECIFICALLY HOW DOES CFS/ME RELATE TO FMS?
Many people believe these may be the same illness, as discussed above. However, CFS researcher Dr. Paul Cheney notes that CFS patients have a strong intolerance for exercise, while for fibromyalgia patients, exercise is recommended as being therapeutic.
HOW IS CFS/ME TREATED?
No effective treatment for CFS has been developed, and it is important to be aware that the cause of CFS remains a mystery and that there is no simple cure.
However there are management strategies these include:-
rest, with gentle graded exercise where appropriate, lifestyle modification, cognitive behavioural therapy (CBT), Complementary treatments, and treatment of some symptoms. (Medications can be used to treat sleeping difficulties and headaches, but these are not recommended for long term use). As for the treatment strategies available patients will respond differently and in some instances there is a good response. Although there are times when some people with the illness are simply too sick to get out of bed, it is best to try to plan and not over do it and maintain involvement in activities within the limits imposed by the illness.
The best thing to do is to try and live with this condition as best as possible such as:-
- Know that it's not you. It takes a lot to adjust to your new, lessened capabilities, and the adjustment is made more difficult by the expectations of you and those around you who have been long accustomed to dealing with your "normal, healthy self".
- Patients often find an equilibrium point at which they can function. As in combating any chronic illness, a positive hopeful attitude is essential.
- Be prepared for a possible lack of acceptance from some from whom you might expect support. This may be a shock, but when you cannot regularly "go bowling" with the gang, or you increasingly depend on being accommodated at home or on the job, and when you have a condition that your doctor may not certify or that other people have already heard of as "that yuppie disease", then your emotional world will become quite different.
- Find new sources of support. It will be important to create a new family-and-friends support structure. This can be done through CFS support groups, electronic networking, pen pals, and other means.
- You will need to take the time to create a new self image for yourself, to know that your new physical limitations do not limit you as a person, as a soul, no matter what other people are thinking. And take some advice from those who have traveled this difficult road before you
WHAT IS THE PROGNOSIS OF CFS/ME?
The illness varies greatly in its duration. A few recover after a year or two. More often, those who recover are more likely to do so from 3 to 6 years after onset. Others may recover after a decade or more. Yet for some, the illness seems to simply persist.
Little about how CFS works in our bodies would suggest that it could be fatal. The slowing of metabolism and the weakening of muscle function, possibly including heart function, might raise some possibilities. But as a general matter, by no means should CFS be considered to be a terminal illness.
On another front, CFS in the more severe cases can be so disabling, and the public and medical understanding of the disease can be so minimal, that many people have seen their lives taken away through loss of job, loss of support from family and friends, and loss of ability to take care of oneself. In the face of these vast irrational and deeply painful changes, there are many CFS patients who have taken their own lives. But you can not die from cfs/me.
There is a great deal of research going on, regarding the possible cause of CFS, many of its symptom mechanisms, possible biological markers, treatments, and epidemiology. Only the future will tell us all the unexplained answers.
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FIBROMYALGIA, HYPERMOBILITY SYNDROME & CHRONIC FATIGUE SYNDROME / M.E
