This is a very serious question everyone with “CFS” must ask themselves. As mentioned earlier, CFS is defined by its symptoms. AT THIS TIME, THERE IS KNOWN CAUSE OR CAUSES FOR CFS; NO REAL TESTS TO PROVE YOU HAVE CFS; AND DESPITE WHAT YOU READ, THERE IS NO KNOWN CURE FOR CFS! (Yes, I know we are repetitive, but very few people will read the entire website. We want people to understand key points of this illness,)
Unfortunately, none of us really knows the answer to the question of this section. Right now, our concern is too many illnesses/symptoms seem to be continually added to CFS, such as the Gulf War Syndrome. (However, this may be closer to CFS than we originally thought, because it appears the Gulf War Syndrome was caused by numerous shots against Gas Warfare or other illnesses in the area which our bodies aren’t used to and have no antibodies built up to protect us.) Another example is an article in the November/December 1999 “The CFIDS Chronicle”: There was a group of doctors suggesting that several more categories of symptoms or illnesses should be added to CFS because they all include “chronic fatigue”.
Another concern is that many more doctors are accepting CFS, even though many will still you it’s all in your head. When patients keep coming back to the doctor with severe long-term fatigue for which they can find no ready cause, he or she may tell the patients that they have CFS and there is no cure. The patients are happy because they now know that “they really are sick with an illness called CFS”. They should ask their doctor what might make them feel better and get more done. If they are lucky, the doctor will bring out the B-12 shots which do often help and treat the symptoms. The doctor who diagnosed CFS is now happy because he or she has another satisfied patient.
All any of this does is to broaden the base of CFS patients and give researchers grants to study certain conditions or illnesses. There are new headlines in the medical journals as well as our newspapers. Most of this keeps confusing the people with CFS. Please remember that we are not doctors, we are just people who suffer from this illness. We feel there is merit in some of this research because many seriously long- term fatigued patients will activate latent illness such as mono, Epstein-Barr, CMV, HHV6, etc. Many of these illnesses have treatment protocols to make the patient feel better. However, there is other research going on concerning things like hypotension (low blood pressure) as a cause for CFS. This means a lot of very limited research funds are being spent in a broad umbrella of possible causes, symptoms, or affects of CFS and that the real cause(s) and treatment(s) may be many years down the road. (However, there may be some meaningful news about CFS before the year is out that will be discussed later.)
Unfortunately, in the meantime, we (the people with Chronic Fatigue Syndrome or PWCs) must live with numerous symptoms associated with this illness, such as severe and limiting fatigue, pain, abnormal sleep patterns, frustration, brain fog, lack of meaningful exercise, and other illnesses which we get far too often because our immune systems are a mess anyway.
THIS IS A VERY EXPENSIVE AND DANGEROUS ILLNESS! Not only in terms of the money we spend on medication, alternative care, supplements and vitamins, and other things which we hope will make us feel a little better at least, but it is costly in personal terms such as the guilt we often feel from not being able to do “our share” of what we want or need to do, including the affect it has on our families. Some current research indicates that this illness or disease can cause damage to the brain, lungs, liver, etc. Some of us really do become depressed (which is ironic because so many have said we are ill because we are depressed), If we have children, we really feel guilty because we aren’t always able to be there for them or just play with them. Children do grow up, and we turn around and suddenly find out how much we have missed. Many of us have lost our jobs because of this illness. This is not merely expensive, it is often devastating.
AS WE CONTINUALLY SAY THROUGHOUT THIS WEBSITE, OUR OBJECTIVE IS TO GATHER INFORMATION FROM WHICH WE MIGHT BE ABLE TO HELP US ALL FEEL BETTER AND IMPROVE OUR QUALITY OF LIFE! YOUR INPUT IS EXTREMELY NECESSARY IF WE ARE GOING TO HELP OURSELVES. This is one way which may help you cut the expense of CFS. We want to collect a large enough selection of people with CFS with their stories, trials, treatments, successes and failures that this site will be able to offer meaningful suggestions on CFS management, care, and treatments. Sometimes, the improvements will be in baby steps and others will make a greater difference in your QUALITY OF LIKE.
There is a footnote which needs to be inserted here even though it will be better covered in other areas. 1) Our immune systems dysfunction. That means we must take every reasonable step to avoid other illnesses. 2) Our bodies become used to medicine, supplements, and other treatments all the time which makes it frustrating and difficult to deal with our illness. 3) CFS seems to concentrate on our past history and problems. For instance, if you normally have allergies, CFS will make your reaction worse. My wife has had strange problems with her left side for many years, even before she came down with CFS. On bad days, her left side will start to hurt badly, she will get shooting pains, and she will often lose “control” of her left side where she might drop a glass held in her left hand or sort of drag her left foot as she walks. 4) Once you have had this illness for awhile, you will sort of stabilize at some sub-par level. From here, you will have your good days and bad days. Expect them and change your schedule accordingly.
To determine if you have CFS, you need to go back to the basic definition based upon symptoms, because CFS is not a known illness for which you can be tested. Please go to the “CHRONIC FATIGUE SYNDROME” section for the CDC definition of CFS. The key part of the definition is that you cannot have CFS if you have any other medical condition which can be diagnosed.
Therefore, CFS is not Alcohol or substance abuse Allergies including food & chemical Anorexia nervosa Bipolar disorder Bullmia nervosa Cancer Clinical depression Dementia Heart failure HIV/AIDS Hypotension Hypothyroidism Lupus Lyme disease Multiple Sclerosis Narcolepzy Schizophrenia Severe obesity Side effects of medication Sleep apnea Stress Unresolved Hepatitis B or C Yeast infection
The key here is that the list above is “known illnesses”, and by definition cannot be CFS. Yes, people who suffer from these diseases may show many of the same symptoms of Chronic Fatigue Syndrome. However, there are treatments and/or protocols that will help people with these diseases. Some of these illnesses do not have cures, but, at least, the treatments will help those people. Some of the items above, such as stress can be triggers which will make our illness worse. (Triggers are discussed elsewhere in the website.) By saying that these illnesses cause CFS, only makes it worse for us because there have already been research grants to tie these into CFS. HIV/AIDS research might be worth keeping an eye on because there is an immune dysfunction involved with the illness. MS may also be an illness to check on the latest research since some of the more promising areas of CFS research (please refer to “FLASH BULLETINS” and “CAUSES”) are in RLase and STATI proteins, which are similar to MS and CFS.
If you have been told you have one of the illnesses above or another known illness, please get the proper treatment for the illness. There are other illnesses that can have long term fatigue, pain, sleep problems, etc., which might lead you and your doctor to miss a known illness. If you think that there is a chance you have one of these illnesses or others, we strongly recommend you do some research. In our “WEBSITE” section, we list several good “overall health” websites that you could use for your own personal research.
We would like to discuss a couple of the items above. Clinical depression has many of the symptoms and problems we have. These symptoms are the main reason doctors still believe there is no such thing as CFS. Some of the medications prescribed for us are used for people with depression. Anyone, who has had CFS over a long period of time can, and often will, have bouts of depression. Let’s face it. We have many limitations on our normal life style which are enough for anyone to become depressed. Usually you can tell if you are going through a bout of depression, and you should tell your doctor about it because there are medications that can help you through one of these bouts. Most of the time, we are frustrated by our limitations and life styles. FRUSTRATION IS NOT CLINICAL DEPRESSION.
Lyme disease is an illness which is spread by ticks. Mesquites are blamed for spreading malaria, West Nile disease, and others. The symptoms are very similar to the ones we have, which is why our illness was once call Chronic Lyme Disease. There are tests for Lyme Disease and protocols for the treatments. We have given our doctor a great deal of information on CFS and try to keep him up-to-date on the latest types of treatments and research, We have put his name on The CFIDS Association’s doctor list where he gets their bulletins regularly. He recently mentioned to us that he got a new patient who has Lyme disease and was treated for it by his previous doctor for five years; unfortunately, his original test for Lyme was negative.
Yeast infection has been listed as one of the causes of CFS. There were many articles about yeast infection and CFS, including treatments. Dr. William G. Crook, M.D., even wrote a book called “Chronic Fatigue Syndrome and the Yeast Connection”. This is an example of how easy it is to get caught up in a possible cause of CFS along with research money going off in the wrong direction. It is pretty well understood that yeast infection has nothing to do with the cause of CFS.
The Gulf War Syndrome, which is not listed above, is an example of another illness thrown into the CFS category. There were a large number of soldiers who came back from the Gulf War who became ill and got the government’s attention for research. The latest we have read on this is that a cause was the injections the troops received before going over there to help protect them against chemical weapons and other diseases prominent in the area. They showed brain cell damage which could be determined with MRIs. In our opinion, there could be some similarities in that their immune systems got messed up which goes along with our own ideas of the cause or causes of CFS.
The point of this section is quite simple. If you can determine a cause of your illness, it is no longer CFS by current definition. There are also treatments for many of the “causes” which can help your illness.
The section "A Heart to Heart Tale" is one worth telling, and luckily I'm still alive to tell it and could have been used here or later. We decided to put into its own section. It helps us to define CFS/CFIDS a little better, and we hope it will help you.