 |
|
|
|
|
|
|
|
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
 |
|||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
Chronic Fatigue Research France, Inc. |
|||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
|||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
|
|
|
|
 |
||||
|
CFS AWARENESS DAY SPEECH
I left the neurologist's office pleased with my new antidepressant prescription and depression diagnosis. Ah, something treatable. I went directly to a Christmas party with a smile on my face. My secret pal gave me a present in little pieces and a scavenger hunt map to find the pieces. I ran all over the building for the first three pieces. By the fourth piece I could not run, my throat was hurting, my vision was blurred, and I could not walk straight. So much for a nice simple diagnosis of clinical depression. This experience in the fall of 1995 was my initial misdiagnosis. Ten days ago I was buying a souvenir T shirt at Lake Tahoe, California. The wind was whipping up waves on the lake, and snow covered the peaks of the beautiful mountains towering overhead. The green leaves were not yet out on the trees. I was raving to the clerks about how lovely Tahoe is and how I had never been there before. The woman asked me what brought me there, and I Both clerks looked blank. The woman shook her head. No, she had never heard of chronic fatigue syndrome. "Did you feel real tired?" she asked. I asked, "How long have you lived here?" I was stunned that two people who lived on the same lake during the outbreak in 1985 in which 600 people eventually became ill knew virtually nothing about this illness. I had just sat in a meeting in Reno attended by over one hundred people with Chronic Fatigue Syndrome, many of them Dr. Peterson's patients from Incline Village. Yet just the other side of the mountain I met two people basically oblivious to this still invisible disease. I came from a small town in South Carolina and had just moved to the large city of Las Vegas, Nevada. In Las Vegas the Fibromylagia support group had a meeting to which Dr. Jacob Teitelbaum was invited. About two hundred people attended, most were Fibromylagia patients. Teitelbaum gave many guidelines for treating the disease. In Lancaster, South Carolina we had such a meeting with a Rheumatologist as a guest speaker. In a community of about 10,000 we had about 150 people attend this lecture, most of whom had Fibromylagia. This Rheumatologist's only suggestions for treatment involved pain management and antidepressants. What is wrong with this picture? I would like to make three observations: 1. The extent of the diseases of Chronic Fatigue Syndrome, Fibromylagia and Multiple Chemical Sensitivities are being overlooked by doctors and the public. 2. The diagnostic measures of these overlapping diseases are not being used. 3. Possible infectious or toxic causes of these diseases are not being researched.
I. EPIDEMIOLOGY ME/CFS has just been moved to the Office of Research on Women's Health (ORWH). We would be better off if the NIH would return us to the National Institute of Allergy and Infectious Diseases where we were.
II. DIAGNOSIS You will note that the CDC criteria for diagnosis are what is called "self-reporting" symptoms. In other words the patient describes how he feels. According to the CDC there are no defining lab tests. Note also that NO criteria for diagnosing FMS are given at the CDC web site. In case you think that enlarged lymph nodes are determined by a doctor think again. Doctors will tend to tell the patient something like, "Oh, your lymph nodes don't seem that large" or "Your temperature of 99 degrees is normal for some people." I found it amusing that there actually could be a worse name than Chronic Fatigue Syndrome. If you don't seem to be quite sick enough you can get labeled as having "idiopathic chronic fatigue." Since no one has a clue at the CDC as to what might cause chronic fatigue syndrome it seems to me that "idiopathic" would be an appropriate name for all cases. Also, note that the last time the CDC bothered to look at Chronic Fatigue Syndrome diagnostic criteria it was September of 2000, almost two years Doctors familiar with the disease will tell you that they can spot a CFS/FMS patient. One such doctor said, "This illness is like Beethoven's Fifth Symphony. If I meet a patent all I need to hear is the first four notes, Da, Da, Da, Daaaaahhhh!!!!, and I know the rest of the song." Interestingly when money gets involved, as when a patient is trying to get Social Security Disability that will cost the government money suddenly we notice that objective lab tests appear in the record. This poster is copied from the government website for disability for Chronic Fatigue Syndrome. Here it is readily apparent that there are valid objective tests that will diagnose Chronic Fatigue Syndrome: 1. An elevated antibody titer to Epstein-Barr virus (EBV) capsid antigen equal to or greater than 1:5120, or early antigen equal to or greater than 1:640; 2. An abnormal magnetic resonance imaging (MRI) brain scan; 3. Neurally mediated hypotension as shown by tilt table testing or another clinically accepted form of testing; or, 4. Any other laboratory findings that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record; for example, an abnormal exercise stress test or abnormal sleep studies, appropriately evaluated and consistent with the other evidence in the case record.
III. INFECTIOUS OR TOXIC CAUSES With the onset of a mystery disease in the 1980's one would expect that an intensive search for a cause or causes would have occurred. In reality no such search has been done. Chronic Fatigue Syndrome showed up in the same decade as AIDS. Imagine where AIDS patients would be today in 2002 if no one looked for the HIV virus? I just watched the documentary "I Remember Me" by Kim Snyder. In it Daniel Peterson, one of the two doctors at Incline Village is interviewed. He comments that the CDC came up, spent a couple of days, went skiing and went home saying they found nothing. He then pulled out a drawer with blood samples of those original patients saying that maybe someday someone would look at them. I heard David Bell speak at a medical conference in Canada two years ago. He told of taking painful lymph biopsies of the many children in Lyndonville, NY and sending them to the CDC. He spoke with great agony when he said that the CDC NEVER LOOKED at those biopsies. I had occasion to sit at a session of the CDC. I asked where those biopsies were and was told, "Oh, I guess they are around here somewhere in a refrigerator. This was fourteen years later. Yet the government continues to insist, "An infectious cause for CFS has not been identified, and antimicrobial agents are not commonly prescribed for CFS, unless of course the patient has been diagnosed with a concurrent infection." If one were looking for a few needles in a haystack and scratched around the edges a bit, then declared there were no needles since none had been found would we conclude there were no needles? I have been told by better minds than mine that arguing for an infectious cause or causes are trying to prove a negative. But who has determined there IS a negative? Indeed there is a fair amount of evidence that we may have multiple infectious and contagious causes. Dr. Eric Ryll of UC Irvine describes a severe major epidemic of an undefined disease in a Sacramento hospital in 1975. Punta Gorda, FL, Incline Village, CA, and Lyndonville, NY, and Western Otago, New Zealand were all sites of outbreaks of what appears to be Chronic Fatigue Syndrome. Hepatitis C and the various tick borne pathogens cause symptoms that look exactly like CFS. Many people are infected with Hepatitis C and have not been tested. There is no accurate test for the Lyme pathogens, and the CDC has noted that only 60% of those infected get the "characteristic" bull's eye rash. Biologist Paul Ewald points out that we are developing chronic infections. For instance there is growing research that Chlamydia pneumoniae may be implicated in atherosclerosis and Alzheimer disease. Mycoplasmas tested for by PCR have been found in 40% to 60% of Chronic Fatigue Syndrome and Fibromylagia and Fibromylagia patients who have been tested. Many of these patients respond to long-term antibiotics which that can attack intracellular bacteria. I myself tested positive using a PCR test done at Immunosciences in Beverly Hills, CA. Fortunately I had only been sick nine months when I had this test done. I responded well to Zithromax and have remained on Zithromax at low doses for five years with relatively stable health. I am just one example of the likelihood that we have various infections that are difficult to detect. Doctors need to test patients for such things as Systemic Mycoplasma Infections, Chlamydia pneumoniae, tick borne pathogens, Hepatitis C, and others. There are small studies showing that valcyclovir and Ampligen are effective in some patients with CFS. Ongoing studies suggest that Ampligen may be effective for AIDS patients. What does this mean? The RnaseL studies would suggest that there is indeed viral or intracellular bacterial damage to the DNA. Tom Glass, Ph.D. has written that he has noted viral symptoms in cats owned by CFS patients and that he has noticed melanomas in dogs with a "striking progression of the tumor in the absence of an inflammatory response." This brings up the frightening possibility that whatever we may be infected with has crossed species. It also supports the observation made by Paul Ewald that we now have chronic infections that the human immune system is ill equipped to handle. The government just spent money to develop a blood test for Anthrax infection. We need accurate tests for many types of pathogens that we know exist, but we cannot yet identify. To summarize, we need three steps: 1. Develop accurate FDA approved tests 2. Get all patients tested for all possible pathogens 3. Develop treatments for the various infections found
CONCLUSION Dr. Moren wrote in his introduction to the NIH cfs conference in February This is not surprising. Twenty years plus almost no funding equals almost zero. If one hundred years had elapsed with little or no research the result would still be almost zero. We who are advocates for CFS, we who have suffered for years with this horrible disease are tired. We are tired of playing Charlie Brown to the government's Lucy with the football. Are we serious about this very real disease or are we going to sweep it into the somatic disorder wastebasket? Think about where you live. There are ten sets of human footprints on the moon. All of them are American. This is the time, this is the place, this is the nation that can find the cause and cure for Chronic Fatigue Syndrome. We can spend the money and employ the researchers who will solve this disease or we can pretend that this disease does not exist, that it is just some new aberrant form of depression. The choice is ours. The burden of guilt will be ours if we fail. ---------------------------------------
|
||||
|
Copyright©2005 Our FM/CFIDS World, Organization. All rights reserved. The ongoing business of Chronic Fatigue Research France, Inc. is possible by the public in monetary donations and website sponsorship. Our bills are very few, therefore most of our donations will be sent to aide in the awareness, and research for Fibromyalgia and CFIDS cause, treatment and cure. |
||||