WHAT IS CFS/ME?
CFS/ME is a recognized 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 diagnosed 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, less 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.
WHATS WITH THE NAMES?
Chronic Fatigue Syndrome as a name for the illness is intensely disliked by people with CFS, since it trivializes the illness. It is equivalent to calling diabetes 'chronic thirst syndrome', or Parkinson's disease 'chronic shaking syndrome'. Although the name emphasizes 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/Encephalopathy (M.E); while in the United States, 'Chronic Fatigue and Immune Dysfunction Syndrome' (CFIDS) is common. Accoring to which you have formally been diagnosed with does just depend on which doctor you see and their own preference.
CFS stands for Chronic Fatigue Syndrome and is also known as
ME (Myalgic Encephalopathy) (My-al-jik En-kefa-lop-athy)
The term Myalgic Encephalopathy indicates the pain in the muscles, neurological problems and general suffering that accompany this illness:
Myalgic: Greek origin meaning muscle
Encephalo: Greek origin meaning brain
Pathy: meaning suffering or sickness
Sometimes ME is still referred to by an older version of the name: Myalgic Encephalomyelitis. However, this is technically incorrect because the term 'myelitis' means inflammation of the brain and there is no inflammation found in the brain of ME patients.
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 twitching 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.
WHO GETS IT?
It is estimated that between 0.2% and 0.4% of the population have ME/CFS and it is estimated to affect about 2 out of every 1,000 people in the UK. ME/CFS exists worldwide and can affect any man, woman, or child and can occur at any age, but most commonly affects women in their 20's -40's.
WHAT CAUSES CFS/ME?
Nobody knows for sure what exactly causes this, and each individual together with their dr tries to pinpoint & speculate what the possible cause may be. Common factors include, viral infections (e.g. glandularfever & hepatitis), other illnesses & syndromes, abnormalities in muscle structure & function, genetic factors, vaccinations, major stressful events & trauma.However in some cases there is no obvious event that causes it and the person reports a gradual decline in health over a period of months or even years
WHAT ARE THE SYMPTOMS OF CFS/ME?
Extreme fatigue: Fatigue levels will fluctuate over the day and will vary significantly from patient to patient (feelings of utter exhaustion, often to the point of collapse). The fatigue is totally different from the normal tiredness that is experienced by healthy people when they feel worn out. Patients often need to sit or lie down very quickly wherever they are. Pallor of the skin is evident when fatigue levels are at their lowest, together with cold hands and feet. Fatigue is the main symptom of ME and must always be present for a diagnosis to be made, but it is not always the worse symptom.
Sleep disturbance: may be present - eg. unable to fall sleep until the small hours of the morning, unable to wake until midday, complete sleep reversal (ie. nocturnal), unrefreshing sleep.
Pain: Anywhere in the body but particularly persistent headaches and intense pain the muscles, especially legs. Difficult to alleviate with standard painkillers. Sometimes involuntary muscle movement or skin crawling sensations.
Neuroendocrine: Balance problems, dizziness, feeling 'spaced out' or 'floaty'. Temperature disturbance (feeling hot when it's cold, cold when it's hot,). Light and noise can be painful. Nausea, difficulty eating, loss of appetite, weight loss or gain (more likely in children than adults - CMO report Annex 6 page 7).
Cognitive: Poor short-term memory, difficult with word finding and thinking, mental confusion, loss of concentration, general 'brain fog'.
Sensitivity: Alcohol intolerance, occasional acquired sensitivities to food, drugs, chemicals
There is no predictable pattern to CFS/ME and symptoms can fluctuate greatly over short periods of time. Patients usually fall into categories of 'mild', 'moderate' or 'severe', depending on how badly they are affected by their symptoms.
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 clues 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 sub acute
Mild fever or chills
Generalized muscle weakness
Neuropsychiatry 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.
Fatigue is a central feature of many clinical syndromes, including CFS, fibromyalgia, irritable bowel syndrome, major depression, anxiety and somatoform disorders.These syndromes also share other, non-specific symptoms, including musculoskeletal pain, sleep disturbance, neurocognitive impairment and mood changes. Fibromyalgia, in particular, is a closely related syndrome, differing mainly in its relative emphasis on musculoskeletal pain rather than fatigue.
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 isn’t a simple cure. However there are management strategies these include:-
Rest, with gentle graded exercise where appropriate, lifestyle modification, cognitive behavioral 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 to pace and to 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 out" 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.
WHAT IS THE PROGNOSIS OF CFS/ME?
This is extremely variable. In some cases the illness causes persistent disability, while in others it follows a relapsing and remitting course. Some people will improve to some degree after the initial acute stage - although this often takes a considerable period of time and a return to complete normal health is unusual. Once the illness stabilises the majority follow a periods of relative remissions and relapses. Common causes of relapse include further infections, operations, and undue physical or mental stress. A small but significant minority - possibly around 25% - remain severely affected.
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.
The video below aims to help the friends and family of ME/CFS sufferers understand the illness and what their loved ones are going through.
(Created by Sleepydust...to view a larger clearer version of the video go to
http://www.sleepydust.net/me-cfs-chronic-fatigue-syndrome-video.html
)
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