CAUSES
			Updated: 5/30/05
	If we knew the causes of CFS/CFIDS and so forth, we wouldn't’t feel like we do and would not be searching the web world for ideas, solutions, treatments, etc The real problem is no one  knows what causes CFS/CFIDS, but everyone uses symptoms to define this “Dreaded Disease”.  Unfortunately, too many sites are not updated or are trying to sell you a "magic cure".  To give an example, I recently entered "cause of CFS" into "Google" and came up with 71,300 hits.  If you have some time on your hands, you should take a look. In the section called “Do you really have CFS?", we give a long list of what does not cause CFS. The reason for this long list is that they are either symptoms and/or known illnesses in their own right or triggers for CFS.  Read almost anything you want to on CFS, and you will find a different cause for CFS at any point of the web or in any newspaper article, book, etc. For example, to see some very good pieces on causes of CFS/CFIDS go to www.immunesupport.com , www.cfids.org.and www.ncf-net.org. The “illness” has been around for many years. There are references dating back to the 1930’s.  In Europe they call it Myalgic Encephalomyelitis (ME), and they may be doing better research than the U.S   Much of the world has been studying and treating it for many years. They basically do the same thing we do: treat the symptoms. When it first became popular in the U.S., it was nicknamed the ‘Yuppie Flu”. Most doctors would tell you that you were just stressed from overwork or depressed because those conditions cause many of the symptoms of CFS. You can still find doctors who do not believe in CFS. The next selection was Epstein-Barr virus. That is one of those illnesses we all likely had as a child and probably didn’t even realize we had it. However, when it becomes active in an adult, it makes you feel extremely sick and have a case of the worst “flu” you ever had.  (We repeat often because very few if any read the entire site.) Then all kinds of things got caught up into the cause of CFS. Another earlier blamed cause was mononucleosis, “the kissing disease” or mono.  Since then, we have had some form of retrovirus, a herpes virus, Lyme disease, chronic viral infections, chemical or food sensitivity, multiple nutrient deficiencies, an immune response to another infection, and on and on. When you have been researching this for over 15 years, you see all types of causes which confuse us and the medical profession. Go to CDC.org to find the CDC’s full report.  In a brief summary or highlights, The U.S. Center for Disease Control (CDC) says that CFS’ similarity to chronic mononucleosis led people to believe it was a viral infection caused primarily by Epstein-Barr virus.  Now they say that CFS cannot be caused exclusively by EBV or any other singular infectious disease agent.  A CDC surveillance study found no association between CFS and a wide variety of human pathogens, including EBV, human retroviruses, HHV6, enteroviruses (viruses related to the intestines), rubella, yeast infection, nor more recent studies which include Bornaviruses and Mycoplasma. Finally, to protect themselves: “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.” They state that it has been proposed that CFS is caused by an immunologic dysfunction, such as inappropriate production of cytosines or altered capacity of “certain” immune functions.  However, on their current website they conclude: “One thing is certain at this junction: there are no immune disorders in CFS patients on the scale traditionally associated with the disease". They discuss the observation by some that anti-self antibodies and immune complexes are hallmarks of autoimmune disease in many CFS patients, but that there has been no tissue damage which is associated with autoimmune diseases.  This all means that T-cell (a cell which mobilizes the immune system) activation markers cannot be involved because they aren’t found in all CFS patients.  “One intriguing hypothesis is that various triggering events, such as stress or viral infection, may lead to the chronic expression of cytokines and then to CFS.”  However, no real pattern has ever been identified with CFS.  Also, more patients with CFS have a history of allergies than are healthy controls. Continuing review of their work covers all kinds of paths, including that physical and emotional stress can trigger CFS symptoms, which activates the hypothalamic-pituitary-adrenal axis and leads to an increased release of cortisol and other hormones.  However, cortisol (an adrenal stimulant) and corticotrophin-releasing hormone levels in blood tests are within the “normal range”. They do get a little excited by a major university’s studies with hypotension results that it produce some of the symptoms of CFS.  Lastly, we must rule out nutritional deficiency. This is our government saying in “doctor-talk” that there is no (simple) cause for CFS, and they don’t know any more. While going through our files on CFS and the various causes mentioned, we really liked a website called “Free Internet Resources” that lists over 80 possible causes of CFS.  Obviously, we won’t waste space listing them all, but here are some of the more interesting ones: CARBON MONOXIDE, CIRRHOSIS OF THE LIVER, ENZYME DEFICIENCIES, HEART VIRUS, INFLAMMATION, LOW BLOOD VOLUME, MERCURY, METABOLIC IMMUNESEPRESSION, MOLD, OBESITY, PESTICIDES, PHYSICAL TRAUMA, SLEEP APNEA, SUBSTANCE ABUSE, AND TUMORS.  Another website lists these 80 causes as late as October 2003. We think the next two enlightening discussions of CAUSE are closer to the mark.  (See our “A HEART TO HEART TALE” section as well.)”  They are somewhat detailed and maybe a little overwhelming, but  are important to broaden our knowledge of CFS and what is happening to find the cause(s) of CFS.  We have tried to summarize them without losing the meaning or accuracy. A Scottish mate who has his own website on ME (see the “WEBSITE” section for the Satori-5 link) has sent me a preview of a write-up that has written.  The author says that his disease is called RNase Enzyme Deficiency Disease (REDD).  It is thought that this disease shares responsibility for other illness, for example, Multiple Sclerosis, Myalgic Encephalomyelitis, ALS, inflammatory Rheumatoid Arthritis, Gulf War Syndrome, and Fibromyalgia.  There is a definitive test for this disease which can prove its existence. RNase is an enzyme produced by the human body when it is attacked by viruses or bacteria.  The RNase denatures messenger RNA which kills invading viruses or bacteria on contact and thus destroys the invader’s RNA .  The RNase is faster acting than T-cells. The mechanism that produces RNase is damaged by any number of causes, including toxins.  Once our RNase is damaged, the body begins producing a shortened, but a highly active, form of RNase which no longer recognizes bacterial/viral invaders, but begins to attack every cell in our body.  One of the first things damaged is the glutathione system, which is one of the body’s major anti-oxidant systems, leaving the body open to serious damage by free radical cascades.  (A good reason to take anti-oxidants.)  The most damaged areas are those in the body that produce energy and free radicals, namely, mitochrondria, or the small organelles in cells that produce all of our energy.  Another system which is quickly damaged is the body’s Th 1 immune system that protects us against EBV, CMV, and HHV6, He goes on to say that the first phase lasts about 5 years when the body is so damaged that we can no longer produce RNase.  The second phase lasts about 10 years where things are pretty quiet in terms of the illness itself, but leaves our body severely compromised with limited energy. The third phase begins when the cumulative damage to various tissue systems  basically leaves the body open to numerous infections such as colds, flu,, etc.  Our bodies begin to produce interferon which, of course, is defective, so, therefore, there is more damage, and on and on. A researcher from Harvard who tells our author that they have found a retrovirus.  This could be good news because they might be able to find a HIV-like protease inhibitor cocktail that could attack the “actual cause” of the illness. (Source: www.worldofkenvilbeer.com/) There is a second possible cause that needs to be discussed:  According to “THE NATIONAL FORUM”, the publication of The National CFIDS Foundation, researchers/investigators and their physicians have established CFS to be a serious and perhaps fatal illness.   They have discovered “STAT1” protein that is crucial for proper immune function and regulation.  Without this protein, cells are unresponsive to interferons, leaving the cells defenseless against viral and bacterial infections.  Human STAT1 deficiency is lethal. The “breakthrough” started with finding the RNase L protein in CFS patients.  They found that STAT1 is important  in mediating the action of both type I and II interferons.  (STAT stands for Signal Transducers and Activators of Transcription.)  They found that STAT1 and RNase L proteins may be the missing link in explaining the unresponsiveness to interferons.  STAT1 protein has two forms, alpha and beta.  STAT1-alpha is involved in the  response of cells to  type I (alpha and beta) and type II (gamma) interferons.  STAT1-alpha deficiency is associated with fatal infections by both viruses and bacteria. There has been a test for MS for a long time involving RNase L protein, along with alterations in STAT1–alpha.  They believe from previous research that a similar type of test can confirm CFS.  They also believe that CFS is a serious and possibly deadly disease.  The medical professionals have always said that CFS is not fatal.   For instance, if a person with CFS dies of a heart attack, the “cause” of death is the heart attack.  This research shows an immune deficiency.  They believe that this new  discovery will lead to a cause and hopefully a successful  cure within a year or two. They have also found that much of this information existed in 1991 and 1992, but was held up because the researching physician filed for patents instead of releasing his information.  A much better detailed discussion can be found at www.ncf-net.org. Currently, Chronic Fatigue Syndrome has become a great dumping-ground. The reason we have so many causes for CFS is that doctors must deal with an illness.  As stated above, too many doctors have said: “The great stress you’re going through now has caused CFS for which there is no cure, of course.” You, the patient, are happy because you now have an illness with a name, and the doctor is happy because he has diagnosed your illness which happens to have “no cure”; so, you won’t be bothering him all the time for shots, solutions, or something.  You and the doctor will just treat the symptoms as best you can. Another area that concerns us is that with more and more people in the medical profession accepting that there is such a thing as CFS; there can also be more abuse of such a vague, symptom-based illness.  Too many types or illnesses are being thrown into the CFS pot. Of course, we say there is no cure for CFS. Wrong!  If any of your friends or relatives believe you in the first place, they have the “cure” for you. Even people you work with and perfect strangers have a “cure” for you. When we first put up our website on a free webhost, I pulled it up one day to find a lot of ads for the “cure for CFS/Chronic Fatigue Syndrome”. Why did we bother to put up the free site to begin with, since there are so many “positive cures”?   Well, we aren’t cured and we want to know why and what we can do about it. That is, we need to help each other. Many physicians and researchers are working on CFS, but we can augment their efforts by helping ourselves and providing them with our personal viewpoints and telling them exactly how we react to CFS. The first thing we want to do is to see if we can start defining categories within the broad range of CFS and people within these categories who have treatments that can and/or don’t work for them. In other words, we feel there are too many “causes” today. Please keep in mind that there are a great many members of the medical profession who are working very hard to try to find a cause, and in the meanwhile they are trying to handle our various and ever-changing symptoms without making us worse in other areas. If we call this illness Chronic Immune Dysfunction, we might get going in the right direction. The possible causes of CFS we “like” or have the most faith in at the moment are (1) an immune dysfunction and/or (2) a latent human herpes virus. However, the affects of long-term physical and emotional stress on our bodies should be taken into consideration as they mess up our immune systems like nothing else. The advantage of our having 2 people in the family with CFS is that we understand how the other one feels, even though the symptoms are a little different. Our illnesses began with a positive test for strep throats that were treated off and on over a period of time with various antibiotics. Nothing else in our lives changed in the 8 or 9 months from our initial strep throats until the time we became quite ill with the “flu”. Our marriage wasn’t suffering. There were no new children, no deaths, changes of jobs, moves, changes of diets, etc. We both had successful careers at jobs we liked and worked hard at. The only thing we did was take a 10-day vacation in England a month or so before we got the “flu”. We can say that our jobs were demanding and to continue to work when somewhat ill with a strep throat can be considered stressful. Thus, taking into consideration a strep throat that was over-treated with antibiotics, we consider the possibility of an immune dysfunction a very strong candidate as the cause of our CFS.  (Please see the "A HEART TO HEART TALE" section.) Several CFS research doctors have stressed that autoimmune diseases are the cause of CFS. The theory is that CFS is most likely triggered by an infectious or flu-like disease having exertional fatigue, malaise, myalgia, sleep disruption, cognitive dysfunction, and automatic abnormalities.  People with CFS are likely to have symptoms flare or relapse with minimal activity. This makes finding the cause(s) and treatments even more difficult. We would like it to be something as simple as some of these doctors are talking about because we could find a faster cure. What is the cause of CFS? Obviously, we don’t know either.  We hope with your battle with CFS (See "QUESTIONNAIRE"} and with all the information we gain (let us know of anything new) and share that we will be able to treat our symptoms better with less expense. Here are some of the causes from some of the questionnaires when we asked what they felt caused their CFS: Epstein Barr; chronically ill as a child, thought she may have mono but was never tested for it, positive EBV titers, bronchitis and pneumonia; started with swollen lymph nodes but could never determine the cause; mono, repeated repository infections; stress; also has fibromylagia; physical/mental/emotional stress; an extremely bad case of the flu which would not go away; strep throat; possible viral infection, possible toxic chemical exposure; severe 'female problems and anemic; a cold not going away leading to bronchitis; etc.  We have not tried to list any duplicates of "possible causes" and tried to list just a sampling. WARNING:   Because of my experience and other observations we have made during our research, it is reasonable to conclude that CFS may be a contributing factor to heart disease and/or heart attack. We feel that the lack of exercise/activity, unbalanced diet, and “chronic illness” might have contributed to my heart attack since there was no history of heart trouble in my family. All tests, EKG’s, etc., prior to 1992 showed no sign of heart problems. If you do have CFS, please have your doctor do regular checkups of your heart and cholesterol. NOTE:  While the cause or causes of CFS are not yet determined, studies have shown that multiple nutrient deficiencies, food intolerance, or extreme physical or mental stress may trigger CFS.  It may also be activated by the immune system, various abnormalities of the hypothalamic-pituitary axis, or by the reactivation of certain infectious agents in the body.  Some people with CFS (PWCs} have low levels of PBMC beta-endorphin and other neurotransmitters.  Thyroid deficiency may also be a contributing factor in CFS.  In other words, take care of yourself physically and mentally to the best of your ability until the CAUSE can be found.
		HOME					A HEART TO HEART TALE