My name is Gail Dahlen. I am the Co-Founder, President and Group Coordinator of Medical Professionals/Persons with CFIDS. I have personally been in communication with over 1,000 medical professionals from M.D.'s to Unit Secretaries. A written survey of our group from 1993 to today has shown that 85% dislike or hate the name of Chronic Fatigue Syndrome.
Mongolian Idiot Syndrome (Downs Syndrome), Hysterical Paralysis Syndrome (Multiple Sclerosis), and Gay Related Immune Dysfunction (AIDS), all needed a name change before they were accepted by society - respected -- and research funded!
The Name GameChronic Fatigue Syndrome. Like most of you, I cringe every time I have to tell someone what kind of disease I have...as I know I will have to go into explaining that this devastating disease involves a huge list of more serious symptoms than fatigue, as the name implies.
If you think the name of this disease is ok, then you haven't experienced the shocking and vast discrimination that the majority of us have had to endure because of the name. If you think we need to wait for a very specific cause to properly name this disease, at the rate our health institutions are studying the physical abnormalities of CFS, all of us here will probably be pushing up daisies before our federal scientists find an absolute, specific, physical cause. Today there are many abnormal, multiple organ and system research data available to suggest possible testing for CFS patients. Even with numerous tests that, now, can show physical abnormalities in patients, the name CFS continues to hamper a lot of money going into research studies for this terrible disease, thus delaying it's cause, markers, treatments and it's cure.
There is one internet site today that has over 1,200 studies listed in a bibliographic database. The AACFS site has " over 2,100 recent as well as historic references." It suggests to me that our federal scientists "studying" this disease has a case of "Chronic Lethargic Syndrome" with all the psychological implications they have branded patients with. Many of their "abnormal psychological studies" do not follow rigid, scientific methods, nor their very own diagnostic criteria. Our real CFS researchers many times not only use the CFS case definitions of this country, the United States, but of other countries as well. Yet, their studies continue to be "mysteriously" banned from "highly respected" medical journals. Case in point, Dr. Thomas Glass' studies on our pets. This was a transmission study. He had to abandon these very important studies because he had no research monies. Our federal health officials would not grant him any money. This is what scientists DO in labs to research diseases like ours. They STUDY animals. How many of you have seen studies like this with our disease? How many of you have seen federal grants for such important and routine studies? Dr. Glass, also, was "mysteriously" banned from "respected" research journals, even though, these journals praised him for the high quality of scientific methods he had used. He went to a prominent, inter/national support group and waited three years to get his important findings published in their journal, and they turned him away, too. I had to track Dr. Glass down, and our small newsletter finally published his important research. Patients who had donated the bodies of their beloved pets, with all the other things they had lost, had been waiting for years to see his research.
We may be sick......but, we're not stupid. The word is out. If you see the name of a research study on Chronic Fatigue Syndrome wanting to be published, unless they are on "the list", forget it. The name has even affected our innocent, beloved pets. Our disease has had numerous outbreaks in schools, hospitals, work places, communities with pain-staking documentation, including, careful, in-depth laboratory testing with abnormal results. DeFreitas, Bell, Cheney, Nicolson, Jason, Hyde, Martin, Goldstein, Glass, Klimas ...these are just a few dedicated, REAL CFS researchers who know how the name effects us, that this is a horrible physical disease, and with little or no help from our federal health institutions, continue their quest to help us. They STUDY our disease, some with the most advanced techniques and technology, sometimes under very difficult situations.
The name effects monies to special CFS Clinics. A San Francisco clinic recently, had to close down, because of lack of funds. Those patients are out on their own, now, sick, looking for help. This is abominable.
Re-naming this disease is a number one priority in my book. It always has been. I believe the most appropriate thing to do is to supply, add on, if you will, an appropriate, non-discriminatory eponym to our disease, until we can properly name it with a physiologic cause or marker. Such as with "Lou Gehrig's Disease." A name we can all live with in the CF(ID)S communities. The official name, CFS, has gone on for 10 years. It hasn't done us any good. It has influenced researchers from not researching, community charities from not helping us, delayed disability benefits (many times for years) to the point of PWC's losing everything they had worked for for decades, and insurance companies are cancelling and/or re-writing their policies to terminate CFS patients after a few years. So much for the "great" benefits we were promised. This is not the American way! The name has caused all of this! I know it! You know it! They know it!
Stephen Straus, M.D. and Janet Dale, R.N. wrote a 20 page article for the NIH in 1992, The Chronic Fatigue Syndrome: Considerations Relevant to Children and Adolescents. (Held up article...) In their first sentence, they say "Increasing lay and professional attention has been placed over the past decade [my emphasis] upon an illness that is now commonly referred to as ...CFS. The salient feature...is...debilitating or easy fatigueability."
First of all, this paper suggests that children have this disease. We know they do! Yet I did not see their research, survellience studies or statistics. Did you? How do they come to the conclusion it is "a predominantly ...adult disorder," when in 1992, there were no published survellience studies done on kids with CFIDS.
Secondly, what is this statement saying "that it is commonly referred to as...CFS"? Commonly referred to, to me, would be something like ME (Myalgic Encephalomyelitis) or even CFIDS. The official name IS CFS, isn't it?
On pages 72-73 of this public document, there is "A Partial List of Differential Diagnoses for Protracted Fatigue." In this document, the NIH has actually included a list of disorders that include "protracted fatigue," such as: Allergy, Autoimmune-related rheumatologic disorders, Cardiovascular, Gastointestinal disorders, Hematologic, Infectious diseases, Metabolic and endocrine, Acute intermittent porphyria, Neurologic, Pharmacologic agents and other drugs, Toxin exposure, Psychiatric and behavioral, and Lifestyle choices. Under these heading are some 73 diseases!!!.
Now, tell me, could any CFS symptoms and/or abnormal tests come under these headings? Of course they can! Because of the name, our physicians have to rule out seventy-three diseases which also happen to have "protracted fatigue" as a symptom among many, just to get to CFS! This is still going on today! Remember, this is only a partial list!!! None of these 73 diseases have the word "FATIGUE" in their official name, even though they do have "protracted fatigue" in their symptomatology, as do tens of hundreds of other diseases. And, many, many of these listed diseases do not have a cause, marker or cure.
Remember, Sir William Osler taught his students of medicine to listen most of all to their patients. I have heard it said that a fifth-grader can pick out CFS patients just by listening to them for about 15 minutes.
CFIDS replaced the name of CFS. Others will, too. It will only require our repeated use and education to the public and medical community. This, we have experience in. It will take persistence ... this, we have experience in, too.
Let's put an end to the misconception and misunderstanding of this terrible disease. M/PWC's suggest the eponym of "Gilliam-Ramsay's Disease."
To those physicians on this CFSC Committee, remember the Hippocratic Oath and the words "First, do no harm." Give this disease the respect it deserves. Give this disease a respectful name that will not harm patients any longer. Remember your oath!
Public Testimony: CFSCC April 29,1998Note: Dr. David Satcher, U.S. Surgeon General was present.
Copyright © 1998 Gail Dahlen, R.N., M/PWC, Inc. May be reprinted with copyright notice and full credit. Permission needed for edited material.
Medical Professionals/Persons With CFIDS
GAIL DAHLEN, R.N. Indianapolis, IN - President
MEGHAN SHANNON, M.S. , Cardiff, CA - Vice President
LORI CLOVIS, M.A., Hinsdale, NY - Secretary
ANITA BURGESS, R.N., Fairmont, MN - Treasurer
FRANKIE BILLINGSLEA, M.D., Washington, D.C - Medical Advisor.
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