CHRONIC FATIGUE SYNDROME
			Updated: 5/30/05
	We MUST get "FATIGUE" out of the name because it belittles our serious illness and makes us sound like hypochondriacs.  There are just too many types of "fatigue".  In a recent "The CIFDS Chronicle: They had an article on Perception vs. Reality, they had some perceptions of people with CFS (PWS): 1) It's an attention-getting disorder.  2)  A CFS diagnosis gives people the right to quit their job and collect disability.  3) CFS gets you out of things.  I think of lazy people when I think of CFS. In strict medical terms there is no such thing as CFS because it is defined by symptoms rather than a “cause” and there is no designated series of tests to prove you do or do not have the disease.  There are enough theories to fill a library.  These theories range from a new viral disease to a new name for things like depression, hysteria, or malingering.   The illness has been around for a long time with medical references back to at least the 1930’s and even earlier.   You were usually diagnosed as having Epstein-Barr virus, mononucleosis, or whatever.  In the 1980’s, it became Chronic Epstein Barr or Chronic Mononucleosis (mono).  In 1988, a group of researchers settled on the name Chronic Fatigue Syndrome.  In the UK and Europe, the illness has been around for a long time under the name of Myalgic Encephalomyelitis (ME).  Some illnesses are so similar they often get grouped with CFS: Fibromyalgia, Multiple Chemical Sensitivities, Lyme Disease, Gulf War Syndrome, Post-Polio Syndrome, Celiac Disease (gluten intolerance), and even B-12 deficiency. The “Fatigue” gets us in trouble or, as Rodney Dangerfield would say, “no respect”.  Everyone gets tired from time to time or even long periods of time. We work too hard or try to take on too much. We don’t get enough sleep. We don’t eat right. Pressures of our work, family, or life in general may be getting to us, or we might even become depressed/frustrated for awhile from all the pressure. We catch a cold, flu, or other illnesses, and we don’t get over it quickly or have to continue to work and/or take care of our family. That leads to extreme fatigue. Sometimes these conditions run into weeks or months. Does this mean you have Chronic Fatigue Syndrome (CFS) or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)? Probably not, but you should check with your doctor. In the old days (1990 plus or minus), you had a long list of symptoms which you must have had for 6 months or longer broken down into 2 classes that you HAD to have so many symptoms in class 1 and so many in class 2 before you could be diagnosed with CFS. According to the United States CDC center in Atlanta, a patient must satisfy two criteria: "1:Have severe chronic fatigue of six months duration with no other known medical conditions by clinical diagnosis and 2: Concurrently have four or more of the following symptoms: substantial impairment in Short-term memory or concentration, sore throat, tender lymph nodes, muscle pain, multi-joint pain without swelling or redness,   headaches of a new type, pattern or severity, unrefreshing sleep, and post-exertional malaise lasting more than 24 hours.” In 1994, Canada recognized CFS with much hesitation and sort of followed the CDC.  The interesting thing was the study they did of “Frequency Symptom”.  According to the study, 50.9% had Fibromyalgia and 35.4% had additional health problems/illnesses that developed as a direct consequence of being ill with CFS.  The following symptoms were listed: fatigue, problems with attention/concentration, problems remembering things, sleep disturbance, muscle weakness, muscle and joint pain, problems saying/finding proper words, lightheadedness/dizziness, depression, headaches, feeling disoriented/confused, low grade fever/feeling hot, anxiety, disequilibrium/lack of balance, recurrent flu-like illnesses, mood swings, diarrhea or constipation, problems understanding, numb/tingling sensations, night/day sweats, intolerance to lights, intolerance to noise/sounds, cold hands/feet, excessive irritability, and changes in vision.  People with CFS said the cause was flu (39.9%), stress (17.8%), mono (16.2%), or an operation (4.6%), and the “do not knows” were 16.2%.  The study also showed it covered a wide range of people. The Journal article mentioned above gives you other ideas though or voice by friends, associates, family, and even doctors.  1)  CFS is basically depression.  2) People with CFS are just hypochondriacs.   3) CFS is another word for breakdown.  4) Because nothing can be found physically, it must be a mental thing.  5) I believe it is basically physiological, then leads to psychological problems.  6) I associate CFS with depression and dysfunction.  7) It's and attention-getting illness or disorder.  8) CFS is choice, not an accident.  9) Problems with CFS stem from being over-weight, unhealthy, and having a bad marriage.   10) It is caused by stress and our rush, rush lifestyles.  11) Someone with CFS seeks sympathy with a "woe is me" attitude.  12) CFS began because somebody thought they were tired and made up a disease for it. "THE LANCET" (the UK Medical Journal) in January 2002 reported a 16-member working party were reviewing management and practice for professionals, patients and care givers to make recommendations.  Six of the members of the group refused to support the final report.  However, some common ground was agreed to.  1) The illness is relatively common clinical condition, which can cause profound, often prolonged, illness and disability, and can have a very substantial impact on the individual and family.  2) It can affect both sexes, and a wide range of ages, including children.  3) The report made it plain that it no longer acceptable for clinicians to state that they do not believe in CFS/ME.  4) The report also noted a significant minority of severely affected patients often receive the least support.  5) It concluded that patients need positive early diagnosis and appropriate management and advice.  6) It recommended that rehabilitative treatments such as cognitive behavioural therapy and graded exercise therapy is need despite some patients objections.  (We believe that exercise is needed and the problem is people who go outside their ability.)  7) None of the rehabilitation approaches is intended to be curative, and no approach is beneficial for everyone.  8) Some recommendations will continue to be controversial: psychiatrists implying it is all in the mind, or failure to respond is the patients own fault.  They also noted that to many patients are being treated with disrespect or disbelief. To us, Chronic Fatigue Syndrome (CFS) is a debilitating disorder that keeps us from doing the things we “want to do” as well as the things we “have to do”. It is often characterized by profound fatigue and exhaustion from only light physical exertion resulting in a level of activity substantially lower than our normal capacity.  WE KNOW IT IS A WHOLE DIFFERENT KIND OF TIRED.  WE ARE PHYSICALLY ILL. CFS/CFIDS is a clinically defined condition/syndrome, meaning there are no known tests to confirm CFS. There are no tests specifically designated for CFS because it is currently being defined by symptoms due to there being no agreed upon cause(s) and the illness being defined by symptoms This means that all known illnesses which might cause the symptoms of CFS must be checked for and eliminated first before the diagnosis of CFS can be made.  Then, the symptoms must have lasted 6 months or longer. In addition to disabling fatigue, symptoms usually include some or all of the following: (1) low grade fever, (2) flu symptoms, (3) self-reported impairments of short-term memory, (4) problems thinking and concentrating, (5) sleep disturbances, (6) muscle/skeletal/body pain, and (7) inability to diet and exercise properly. The bottom line is that there is no known cause or causes for CFS/CFIDS and no known treatments.  All we can do is to try to find the best treatments we can for our conditions to make us feel better. Do you have CFS? Are you tired of hearing there is no cure and there is nothing they can do for you? So are we! That is why we have set up this website. As will be explained in other places in this website, we have a theory that CFS/CFIDS is really a chronic immune dysfunction which can be caused by many things. Thus, symptoms and treatments may vary not only because of individual body differences, but also based upon the possible initial triggers of the illness. This is why we need everyone, including medical personnel, to join us in describing our illnesses and treatments in as much detail as possible.  We believe that by providing the detail you will help us to compile information on causes and treatments that  will enable us all to have new hope and help in improving the QUALITY OF LIFE for everyone with CFS. Actually, what we want to do is to start our own little revolution.  We need to start helping ourselves and each other.  The medical profession cannot do it alone and shouldn’t be expected to do so.  These are our bodies and each of use as individuals have unique, exceptional symptoms and reactions to treatments.  We believe that by pooling our own experiences that we can improve our QUALITY OF LIFE until a cure or cures are found. CFS is a very expensive illness with time and money, visits to doctors, continually changing and experimenting with medications and other treatments, loss of time from work or even disability, loss of ability and energy to do the thing we need to do, and the little things we want to do to improve our QUALITY OF LIFE.  Wasting our money trying to find something to make us feel better is a serious fact.  We hope we can give you better ideas as to what might work or not. The medical community as a whole keeps expanding the definition of CFS to include almost anything and continues to tell us that there is no cure. Okay, there is no cure, but there are things which we can do to make us feel better and to improve our quality of life:  TREAT THE SYMPTOMS OF OUR ILLNESS.  Specific treatments may work for one person and not another, depending upon the individual and the “type” of CFS/CFIDS one has along with the varying stages we go through. First, we want and need everyone who suffers from CFS to join us in our research. We want each of you to send us your history, including how and when you first suffered from CFS, what your key symptoms are, what you and your doctors have done to treat your illness, and most important of all, what treatments have and have not worked over time.  Secondly, we want medical personnel who have friends and/or patients with CFS or have CFS themselves to tell us what treatments they have used which have and have not worked. PLEASE GO TO “QUESTIONNAIRE” or “CONTACT US” AND COMPLETE THE INFORMATION.   Treatment of CFS requires a good working relationship and trust between doctor and patient. Any treatment or use of the information which we may list should be completely discussed with patient and doctor(s) before anyone attempts to change any of their own current treatments. We’re sure that many of your doctors will appreciate your own research and suggestions as much as our doctor does. Since treatment of CFS is so difficult, we do suggest you work on one thing at a time and fully evaluate that before going further. Keeping a personal journal assists you in really knowing what works and what doesn’t work. We will do the best that we can by categorizing the replies and information you give us into a meaningful synopsis that can be used to help all of us.. We will also, as regularly as possible, update our list of treatments that may work to help us to feel better and to improve our quality and enjoyment of life. (Please note the “FLASH BULLETINS” section for information that is not yet incorporated in the other various sections.)  We will also provide a bulletin board (as soon as possible) for those who have or are treating CFS/CFIDS to post questions or make personal statements. In other words, we are going to try to gather information to help all of us and our health care providers) to better research and treat our condition. WE HOPE THAT THIS WILL AT LONG LAST LEAD TO A DEFINITION OF THE CAUSE (S), A DIAGNOSIS OF THE DISEASE, AND A PROTOCOL OF TREATMENTS FOR CHRONIC IMMUNE DYSFUNCTION SYNDROME, NOW KNOWN AS CFS/CFIDS.
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