The purpose of this session was to air patient views on how to go about changing the name of our disease from Chronic Fatigue Syndrome to something less prejudicial. Presenters were chosen by lottery, and presentations made by alphabetical order. In some cases, presenters were too ill to come to the meetings and someone read their remarks for them.
My name is Nancy Angsten and I reside in Madison, Wisconsin. I have been a Chronic Fatigue
Syndrome survivor since 1 came down with an acute, severe viral infection when I was 26 years
old. I am now 48 years old, and Chronic Fatigue Syndrome has ruined a great part of my life.
I was considered totally disabled by Social Security 3 years before I received the diagnosis, from two different and well-respected physicians, of Chronic Fatigue Syndrome. When I first heard the
term Chronic Fatigue Syndrome, I dismissed it immediately because I knew that it was not what
I had been suffering from. I was not tired, and I have never complained of fatigue. But I was
weak, so weak I had difficulty sitting up for more than a couple of minutes. I had difficulty lifting
my arms up to comb my hair. I was hospitalized a total of six weeks in a 2 and 1/2 month period
of time. It was at this time I lost my job and my career.
1 had recurrent fevers, night sweats, infections, total inability to concentrate even on a TV show, and inability to read something as simple as a short story. I could not balance a checkbook, pay bills on schedule, or spell. even though I had a master's degree from the University of Wisconsin-Madison
Later, I started falling down without any warning. I had headaches severe enough to cause
vomiting if I moved. My neck, legs, ankles and back had painful spasms.
Still later I received additional diagnoses of autonomic nervous system instability and cardiac
neuropathy. My MRI, repeated four times, showed tiny brain lesions. Still, 1 never felt tired. My
primary care physician, an infectious disease specialist, describes my Chronic Fatigue Syndrome
as progressive. Progressive fatigue?
I have never complained of "fatigue." I truly wish I felt that good. Yet I have a primary diagnosis of Chronic Fatigue Syndrome.
Recently, sports reporter Tim Keown, in a San Francisco Chronicle newspaper article entitled
"Ripkert Deserved to Rest on Laurels," stated: "1n the last 15-20 years, we've also seen a huge boom in
scientifically proven, officially sanctioned excuses to take off work. Damn, we're tired. We've got
chronic-fatigue syndrome and attention-deficit disorder and mental-health days. We've got
repetitive-stress injuries and paternity leaves and post-traumatic stress. If you want a day
off, just choose out of the catalog." "If you want a day off, just choose out of the catalog." That's what Chronic Fatigue Syndrome meant to this reporter. A day off!!
And again, in a very recent CNN broadcast of "Your Health," reporter Rhonda Rowland introduced CNN medical correspondent Dan Rutz's latest JAMA article review of Chronic Fatigue Syndrome and hydrocortisone treatment as follows: "Imagine having that drowsy, first-thing-in-the-morning feeling all day. That's the feeling every day for people with chronic fatigue syndrome. Now there is a new treatment, but it comes with a warning."
"That drowsy, first-thing-in-the-morning feeling"?? This describes a debilitating, disabling, chronic health condition? These comments used to characterize this disease are not
uncommon. They are representative of the mocking, ignorant statements made by many of our
acquaintances, medical professionals, and even our family members. This is unconscionable. It must end.
How can we remedy this nominal scourge?
Recently, in an ABC NEWS live chat on the internet, HHS Secretary Donna Shalala, in response to questions regarding a name change for CFS stated that scientists, not politicians, choose the name of a disease." If this is so then we surely have been wasting time writing our congressmen and senators, Dr.. Satcher, and Secretary Shalala. But I do not believe the problem of changing the name is an unattainable goal: I believe it is enmeshed in an attitude problem, however.
There is an old term, probably a Chinese proverb, that I used in my career as a clinical social worker:
"The way in is the way out." If scientists labeled this disease "Chronic Fatigue Syndrome," then
they certainly can un-label it as well.
Ample information is available in a second survey on "Changing the name" conducted by Roger
Burns this year. The data from this survey can be viewed on the internet at
http://www.cais.net/cfs-news/results-2.html. Any name change should be accompanied by a press release and explanation of rationale for this decision.
It is a great disservice to the victims of this habitually minimized disease to keep this name. It is
a sham and a shame. It is time for those who claim to represent us to listen to our plea for a name
change to end the demeaning, dehumanizing' ridicule and disbelief that the name Chronic Fatigue
My name is Gail Dahlen and I'm with Medical Professionals with CFIDS and American BRAME. As a 20-year veteran in the medical field before I became ill, I can personally tell you that physicians like diseases named after them.
Mongolian Idiot Syndrome, now Down Syndrome; Hysterical Paralysis, now Multiple Sclerosis; and
Gay Related Immune Dysfunction, now AIDS, all needed a name change BEFORE they were
accepted by society... respected... and research funded.
I ask you to please, please consider the use of a doctor's name or names. Dr. Phil Lee, here at the
AACFS, spoke of using a physician's name such as Shelokov or Henderson. I have also suggested
using the names of doctors who have studied this disease - and documented it fully, both on opposite
continents: Dr. Gilliam with the 1934 L.A. outbreak and Dr. Ramsay with the U.K. outbreak of
M.E. Thus. Gilliam-Ramsay's Disease... something like this.
I caution you to PLEASE watch out for the abbreviations of possible new names such as "M.E." In
the U.K., it is ok - but here in the US it has already received bad press, relating it to ME- Yuppie
Disease or Syndrome." Please be careful on this issue as we will be "stuck" with this name for a
long, long time.
An eponym added to CFS until a cause is found is my suggestion, using a doctor's name from the
past who is connected favorably to CFS/ME, preferably one who knows and has studied this
An eponym would also "take care" of the problem of having to address so many symptoms in
CFS/CFIDS/ME. It would also be used to umbrella FMS and MCS.
I ask you, again, to remember the eponym and if another name is given to remember the initials of
the name as it will affect us!!!.
My name is Janet Dauble. I am the director of "Share, Care and Prayer," a nonprofit organization helping thousands of people with CFS and FM. Thank you for this opportunity to request that the name of Chronic Fatigue Syndrome be changed to Randolph's Syndrome. This eponym would honor the work of Dr. Theron Grant Randolph who listened to, and trusted his patients. He took elaborate patient histories
even though he had been taught in medical school to "take down only that information which he believed was important." He found that the ingestion of foods and exposure to environmental chemicals caused chronic fatigue, weakness, myalgia/musculoskeletal pain, sleep disorders, cognitive problems, etc. He also found this syndrome more often in women, and that each patient was different. By fasting, and challenging patients with pure foods and chemically contaminated foods, he was able to turn these symptoms on and off.
Dr. Randolph died at the age of 89 in 1995 after seeing some 20,000 patients over a 60-year medical career. His extensive bibliography of published works dates back to the 40's, 50's and 60's. So CFII)S and Fibromyalgia are in the literature! Here are the titles of a few articles:
"Fatigue and Weakness" -- 1947 [Clin Med, 54:223-224, July, 1947]
"Coincidence of Allergic Disease, Unexplained Fatigue and Lymphodenopathy; Possible Diagnostic Confusion with Jnfectious Mononucleosis" -- 1945 [Amer J Med Sci, 209:306-314, Mar, 1945]
"Allergic Symptoms After Viral Infections" -- 1964 [JAMA, 174: July 13, 1964]
"Musculoskeletal Allergy in Children" -- 1959 [Intemit Arch Allergy and Applied Immunology, 14:84, 1959]
"Ecologically Oriented Myalgia and Related Musculoskeletal Painful Syndromes" --
1976 [Clinical Ecology 1976, p.213]
"Restless Legs - Brain-fag Syndrome" -- 1974 [Clin Research, 22:644A, 1974. See attached.] [Ed note: attached articles not included on the website]
Yes, you heard that right. Brain-fag. Here is what Dr. Randolph said about cognitive function problems and fatigue in his book An Alternative Approach to Allergies, published in 1980:
"Brain-fag is marked by confused thinking, moodiness, unexplained sadness, and apathy. Frequently, the individual with this phase of the problem cannot concentrate and may find it difficult to express himself. The term itself was first used in this context by an astute patient... who had come across this word in his
extensive reading.... [On] looking it up in dictionaries, I found that it has been in the English language for a century. I have continued to use it because it is one of the few descriptive terms that has not been 'redefined' in psychiatric dictionaries....We all know, of course, what fatigue is. Normal people experience
it when they have exerted a great deal of energy. Others, however, experience fatigue on an allergic basis. In other words, their tiredness is not related to any particular exertion on their part, is unrelieved by rest or sleep, and is frequently worse in the morning."
Physicians and researchers serving PWC's recognize that a significant number of them have a history of IgE mediated allergy. However, they do not investigate beyond what is already known by the patient. Dr. Randolph found that the key to better health for PWC's and FM is to locate and avoid delayed and chronic, thus hidden, food and chemical allergens.
Dr. Randolph recognized that due to the principles of symptom-suppressed adaption, masking to the environment, addiction/withdrawal, and delayed reactions, it is almost impossible for most patients to connect their symptoms with exposures to foods and chemicals. He also recognized that patients were "loathe," as he put it, to give up many common foods and change their lifestyles until they were sure
their chronic symptoms and/or flare-ups were indeed reactions to their environment. And he noted that many patients were just too "brain-fagged" to be able to make the changes which would set them free from their debilitating and painful symptoms.¹
With 75,000 chemicals in common use today, and many of them known to be sensitizers, such as formaldehyde and organophosphate pesticides, is there any question that great numbers of people would become sensitive to foods, and to the chemicals in our air, food, water, and buildings, as well as on the land? And injury from exposure to toxic chemicals at work, home or play could explain why there are
clusters of sick people amongst friends, family, co-workers, strangers and veterans.
Dr. Randolph's theories are demonstrable, provable through simple tests, and subject to the scientific benchmark of causality (nothing can exist or happen without a cause).
Please read the materials I am presenting you with, research this matter, and seriously consider Randolph's Syndrome as the eponym for Chronic Fatigue Syndrome. Thank you.
¹Excerpt from "Ecologic Orientation in Medicine: Comprehensive Environmental Control in Diagnosis and Therapy", Theron G. Randolph, M.D., Chicago, Illinois Annals of Allergy 23:7-22, January 1965:
"As far as suggestion is concerned, chronically reacting patients are more apt to be negative to
suggestion than acceptable to some new interpretation of their illnesses which might infringe upon their freedom. Even though a person may be intensely interested in learning the inciting causes of his symptoms, he is usually loath to accept an avoidance program as detailed as that associated with the elimination of corn, wheat, milk, egg or chemically contaminated foods, or as expensive as that entailed in the re-engineering of his home. Indeed, full acceptance of these cause-and-effect interpretations generally comes only after repeated demonstrations in which circumstances permit of no alternative interpretations.
"Although the abstraction that chronic illness commonly results from daily exposures to which one is susceptible and maladapted may sound reasonable to the thinking person, the brain-fagged, confused, or depressed patient is apt to react negatively to such a suggestion. In fact, resistance to personal participation, even for a short period, is the major stumbling block to a wider dissemination of these views. Many patients are apt to be too tired to be attentive; too dull to grasp the continuity of what is said; too confused to read instructions comprehendingly, too embarrassed to ask questions and, most importantly, too stuck in their daily routines and too lacking in initiative to make any major changes. Such difficulties of instruction and acceptance of a program of action are compounded with advancement of the process. Too preoccupied with their own one-track recurring "thoughts" to comprehend, accept,
decide or comply, it is far easier to drift along than to make upsetting changes, even though such "upsets" might demonstrate inciting causes of their illness.
"Another obstacle to the acceptance and application of the ecologic principles involved in this work lies with the medical profession. The chief reason that physicians have been slow to develop an ecologically oriented program -- in contrast to other biologists -- is that the methods required to demonstrate cause-and-effect relationships in individual patients are not in the tradition of medicine. Physicians have long looked upon human illness as something to be treated, in contrast to medical scientists who regard disease as something to be observed. To observe the course of the untreated patient as his intake and surroundings are deliberately changed is essential if one is to have a sufficiently controlled experimental setting to demonstrate the inciting causes of illness -- especially chronic illness. Not only must physicians train
themselves to be better observers, but they must also encourage their patients to observe and record their symptom responses under different circumstances, rather than to discount and to minimize their symptoms. Indeed, ecologically oriented medicine is not to be carried out on, to, or even for the patient; it must be done with the patient.
"Medical acceptance and application is further handicapped by the fact that these views have not been widely disseminated, in as much as training courses in these aspects of ecologically oriented medicine are not yet available."
Can we all agree that any new name for CFS should:
NOT FOCUS on FATIGUE because CFS is more than fatigue and fatigue is not unique to CFS.
NOT IMPLY OR EXCLUDE ANY PARTICULAR CAUSE except PSYCH because the cause is still unknown.
FOCUS on UNIQUE and UNAMBIGUOUS FEATURE(S) that distinguish CFS from other disorders, even if they don't describe all features.
REFLECT BOTH the SEVERITY and VARIABILITY of the disorder
(I note that no one disagreed with these four points)
So what feature(s) of CFS ...
is common to all CFS cases
but also unique to CFS
unambiguously evident to both doctors and patients
reflects CFS severity
reflects CFS variability?
consider the many "stressors" that may provoke CFS symptoms at levels previously tolerated:
odors / chemicals
touch / pain
food / alcohol
drugs / medication
heat or cold
This phenomenon was first named Generalized Hyperesthesia (GH) by Sir William Osler in 1892 in his Principles and Practice of Medicine.
Is G.H. common to all cases ? Patients -- Hands up if you don't have GH! (no hands went up). Doctors -- Hands up if you don't see GH in all CFS cases (Dr. Komaroff responded, "only rarely.")
Is G.H. unique to CFS?
Osler recognized G.H. as a hallmark of only one disorder: Neurasthenia,
about which he said "The entire organism reacts with unnecessary readiness to slight stimuli." As defined then (and now by W.H.O.), Neurasthenia is indistinguishable from CFS, but since the term "neurotic" has arisen, and most believe "neurasthenia" is a psychiatric disorder, that name is no longer an option.
Doctors -- Any other GH disorders? (only somatoform disorders, FMS and MCS were suggested)
Does G.H. Reflect Severity?
Yes, as Osler first recognized, it "is the expression of a morbid, unhealthy reaction to stimuli acting on the nervous centers which preside over the functions of organic life" (Note: not a psychiatric disorder!)
Does G.H. Reflect Variability?
Yes, any combination of stressors may provoke symptoms: hypersensitivity to mental and physical stress are the hallmarks of CFS but any and all other "sensory sensitivities" also may occur.
But G.H. is only a phenomenon, and not a disorder. So I propose Muses Syndrome, for
Although the meaning of "Muses Syndrome" must be explained, imagine how you as a patient or doctor would explain it:
Muses Syndrome stands for Multi-Sensory Sensitivity:
It means being
multiple sensory stressors, especially
any physical or mental effort; but also to
any combination of lights, sounds, odors, foods, medications, pain, and heat or cold.
I wish to thank conference coordinator Bonnie Gorman, Kim Kenny and especially Anthony Komaroff for facilitating this session on name change. My understanding is that this text will be given to the Coordinating Committee members, so I am also addressing them.
In the heartland of Wisconsin, we legally incorporated in 1987 as the CEBV Syndrome Association, that is, the Chronic Epstein Barr Virus Syndrome Association. In 1988 when this collection of symptoms was named chronic fatigue syndrome, we changed our association name, went back to organizing a state network and didn't give it much thought because we could see that high titers to EBV did not correlate with the number of symptoms or severity, nor the degree of disability.
Ten years later we see that the name chronic fatigue syndrome again does not define the illness. More over and most importantly, the label harms -- harms -- patients.
Do no harm. The Wisconsin CFS Association believes that all medical people have an ethical responsibility to seek name change . This includes clinicians, researchers, government medical staff and administration, and medical societies and organizations.
There is no question that we endure ridicule. There is no question that doctors in the trenches endure ridicule from colleagues for extending a hand to our patient population.
Educating the public and the medical community about "Chronic Fatigue Syndrome " is counterproductive. The fact is, in the context of our culture it has been shown that people in general are tired, stressed., pressured by high performance expectations and rewarded for doing ten things at one time. As a result, there is a backlash and hostility toward our patient population that will not subside until the word "Fatigue" is removed from the name. How long do we have to continue to
crawl uphill? Do no harm.
I was asked to come up with a process and a solution. This is not a reasonable request. Why?
It is based on the assumption that the process of renaming this illness is mysterious and complex. I just don't think it's that hard if the right people make it a priority. Our patient organization had no trouble changing our name to conform with a name-change request from the CDC in 1988; we do not understand why it would be any more difficult to change the name today to a more accurate name if the CDC again took the lead in changing the name that it used.
Asking a patient or advocacy group to define a process for changing the name gives the impression that we have
concrete and real input about the name and we don't. Diseases and syndromes are named by
scientists for scientists with scientists when a cure or diagnostic marker is found.
So I am not going to propose a process. It is not my job to do this.
With regard to a solution, I must first speak as Executive Director of the Wisconsin Association. Our Board has visited this issue many times over the years. First we considered the name "M.E.," then we looked at the possibility of using an eponym. Researchers tell me that "M.E." does not define our patient population. As for an eponym -- who would we name the disease for? In the last three days, during this conference, I have concluded that pursuing an eponym is a good idea if scientists will take a stand, but I don't think this is going to happen. All I see are long-winded discussions. Nothing gets done.
Again, it is not my job to propose a solution to a problem created ten years ago when the collection of symptoms was misnamed chronic fatigue syndrome.
I am both a patient, and an officer in a patient support organization. My job is to organize, inform, advocate, listen, write, staple papers and answer telephones. My job, in short, is to do whatever I have to do to provide support for people who are suffering.
As I represent those people today, my job is to tell you that advocating for name change is your responsibility. Whatever it is you have to do to help those who are suffering from the ridicule and the hostility as a result of a name chosen for us, IT IS YOUR JOB TO DO IT. This is about human dignity -- no magic bullets or miracle can cure the loss of dignity.
Medical people have a responsibility to take a stand on changing the name now. FIRST DO NO HARM.
Words have associations & the names of things have affect how we see them. We all know this.
This is why there are no football teams called the Kitty Cats or the Really Nice Guys. Instead we
have the Lions and the Raiders.
What are the problems with the current name? [Don't want to beat a dead horse or any other dead
animal, but, very briefly...]
 trivializes, causes prejudice. Sets us up for dismissal & often abuse in the press, in popular
culture, among physicians & researchers.
I don't use it. I say a have a poorly understood disease that involves an autonomic nervous
system disorder which, among other things, causes me to have multiple daily bouts with
extreme incapacitating low energy. People's response to this is completely different than when I
say I have CFS.
 hurts scientific progress, and not just by making it hard for would-be researchers to get
funding or to get published in widely read journals, and not just by subjecting them to ridicule
from their peers, but also in other ways which I will discuss soon.
 hurts our ability to get money from the government, whether in the form of research dollars
or in the form of disability dollars to which we are legally entitled by virtue of genuine
disability, the silly-sounding name notwithstanding.
What are the good qualities of the current name?
 It's the current name, and people/doctors/researchers know it.
The costs of the current name outweigh the benefits. Therefore, let it be changed.
I don't know what the knew name should be, but I have some thoughts about what qualities a new
name should have, as follows:
Should be plural. (The genus name.) The definition of "Chronic Fatigue Syndrome" (i.e.,
where we set the bounds of the diagnostic category) includes both a positive element and a
The positive element: CFS is the diagnosis if these X symptoms plus at least 4 of these 8
symptoms are present. The negative element: the patient doesn't have these X specific
diseases, each of which can cause some or all of these symptoms. What we're almost
certainly left with is a set of people with the same "diagnosis" but different disease (that
share one or more common symptoms). Different symptoms. Different signs...
sudden "flu-like" vs gradual onset
intense muscle and joint pain vs whole-body flu-like ache vs no pain.
primary cognitive problems vs cognitive problems only secondary to low energy states.
dysautonomia vs none.
sleep problems vs none.
various immune abnormalities vs none.
constant chronic low energy vs regular circadian cycle vs erratic waves contingent on behavior.
respond well to exercise vs harmed by exercise.
uncontrolled allergic disease (a la Dr. Valenti of Georgetown) vs none.
fibromyalgia vs none.
MCS vs none.
IBS vs none.
depression vs none.
Those that meet the current case definition and those that fall just short but are seriously ill.
This heterogeneity, brought up again and again during this conference (by Drs. Buchwald and Gantz
and others), if not dealt with, impedes scientific progress, as follows:
 It impedes communication between researchers, because they are looking at different
 You can't say anything categorical about conflated categories, except with regard to what
they have in common. With respect to CFS, that is as follows: All of these people have really
low low energy, along with other symptoms, and we don't know why.
What I propose is not just a new name, but a whole new taxonomy of the disease formerly known
as CFS, and with it a whole new approach to study.
There should be names for each of the various species. And scientific studies should be
designed with the syndromes in mind.
No great costs to this approach, save making putting experimental groups together more
complicated. Pathophysiologies found in one category can be readily searched for in
others. Similarly, treatments that are proven to work in one category can be readily tested
on others. If two or more categories prove to be different faces of the same thing, those
categories can be readily collapsed together. Until then, we should not proceed upon the
utterly unsubstantiated supposition that these disparate syndromes are one disease, else
we will never get anywhere. We are likely setting ourselves up for a fruitless search for a
nonexistent common cause.
should not include the word fatigue. Should sound like a disease and not a condition caused by
being chronically overworked.
should be popularly incomprehensible, preferably a close derivation from ominous sounding
Everyone thinks right away when they hear the name Chronic Fatigue Syndrome that
they know exactly what that means. The words make perfect sense and they describe
something everyone thinks they have experienced and everyone has a folk remedy for.
In contrast, consider one of the many names I have heard proposed for this disease:
"myalgic encephalopathy". As a scientifically accurate descriptor, it is only marginally
better than Chronic Fatigue Syndrome, and it still borders on the absurd. Translated, it
means roughly "muscle pain head disease." But tell a friend, or your uncle, or your
cabbie, or the doctor that your HMO forces you to go to, or the administrative law judge
hearing the appeal of your denial of SS disability that you have "myalgic
encephalopathy," "ME" and their likely to say "My God, that's horrible. Is it
I would like to open by saying thank you for allowing me an opportunity to express my opinions on the matter at hand.
The government's need is that there be a specific label for this illness so that it can approve the funding to research the sickness and then the medical community can definitively verify that there is such a disease. It appears that if the chosen name isn't "governmentally acceptable," then the funds aren't dispersed and research can't be done. For the many physicians who require proof before they will accept the disease
exists, this creates major problems. They have patients who state that chronic fatigue syndrome is what they have, yet their doctors won't acknowledge them. In turn, these people need to apply for government benefits to survive since they are totally incapacitated and if the government itself doesn't take what these individuals have seriously, their applications for benefits are denied. The conclusion is that if the government and the medical community are both ignoring the sufferers' needs because of technicalities such as an agreeable name that is politically friendly, awaiting the different departments to approve funding for research, or waiting for detailed research results which could take valuable years, then the only people who truly suffer throughout the whole ordeal are the ones who require the most help.
My personal struggles with this sickness show me that the stigma of having this illness permeates into every aspect of my life. When asked what is wrong with me, I will be totally honest and state that I have chronic fatigue immune dysfunction syndrome or chronic fatigue syndrome. The majority of the time I get similar responses to the inquiry. I deal with and confront many medical professionals who aren't even
aware that this disease exists. Some doctors have heard of it but their knowledge on the subject stops there because they have no interest in finding out more about it. Many nurses and doctors chuckle it off and say the whole disease thing is all in my head. There are even nurses and technicians in the hospital who reply sarcastically telling me that they must have it because they are so tired and that I should move over and let them lie down in my hospital bed too. So, I never seemed to find anyone that could honestly tell me how my health would be affected, how to cope with people who would alienate me because of the disease, and how to live with this illness over time.
Out of necessity and after years of experiencing frustration, intolerance, and no answers, I wrote my own book on what I had discovered worked and didn't work, along the way hoping that it could help others trudging the same path not to have to suffer through similar unnecessary uncomfortable experiences. One of the most important obligations that any sufferer has is to educate anyone that he or she may come into contact with about chronic fatigue syndrome -- especially his or her own primary care physician. It is
an unending task because until this disease is globally accepted as something serious and threatening, ignorance will exist. However, the sufferer's responsibility of self-educating plus educating others is necessary until the medical community listens with open ears and an open mind to its patients.
From the onset of hearing the name of what I had come down with, I found the label of chronic fatigue immune dysfunction syndrome frightening. The immune dysfunction syndrome part of the identification makes an automatic mental connection to AIDS. The chronic fatigue part of the name addresses only the most dominant symptom of the sickness even though there are many other manifestations involved
in the disease. Yet, this label seems to be the only classification that the global medical community can agree upon to date. There is a general consensus that the name should be changed. I agree and would
like to offer my opinions on how to do this.
Let us look at the facts that have been proven about the sickness. It is multi-symptomatic. The disease affects the entire physical, mental, emotional, and spiritual being of the sufferer. Debilitating fatigue is the most common and dominant manifestation. How can all of this data be comprised to be the basis of a new name?
There are a few approaches that I can see in renaming the illness. One is to consider a more objective name versus a specific name that connects the sickness with another disease. How about using the last name of the first documented case of the illness and add "syndrome" onto it? Since the word syndrome implies a myriad of symptoms, that one word seems to adhere itself to being a definitive part of the
name of the illness.
Another would be for the medical community to do as it has done in the past and name the sickness based on the scientist, researcher, physician, or specialist who either originally discovered the virus or viruses in the first outbreak of the disease. There is also the possibility of using the name of the city or town it was
originally discovered in as the name of the illness.
A third suggestion would be to take a more detailed medical standpoint and revert back to the word origins that delineate or designate the sickness. Utilizing in combination medical terminology plus Latin or Greek type of word origins could result in a blend of words or phrases that could best describe this disease. Another approach would be to think as condensed as possible and find one word that can concisely describe the general atmosphere of the illness based on the various aspects of it -- sort of a "catch all" type of word.
Personally, I prefer the name complex debilitation disease or chronic debilitation complex disease. I feel both of these names state the conglomerate nature of the illness and focus on the most dominant feature that most sufferers have -- debilitation.
I hope that my suggestions will offer some kind of positive input into your process of creating a new name for this sickness that will constitute an air of respectability and believability throughout the world. As a result of selective ignorance, financial constraints, and not being properly educated about the disease, the medical community and the government must assume a major responsibility in addressing the issues of discrimination, prejudice, and alienation for people who cope with this illness. Sufferers worldwide need
your help in providing the best possible platform for them to receive the medical help that they so desperately desire and your initial conceptualization of a proper name will be the thrust for them to get that aid. I wish you well in your endeavors.
Good afternoon, Ladies and Gentlemen. I thank you for allowing RESCIND, Inc. to address you today about concerns that are near and dear to all of us. A good speech is like a miniskirt on a pretty woman --long enough to cover the subject, but short enough to be interesting...
RESCIND stands for "Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases. The word "Rescind" means to repeal, roll back, or abolish. The four main conditions
we are interested in are ME/CFS [Myalgic Encephalomyelitis, Chronic Fatigue Syndrome], MCSS [Multiple Chemical Sensitivities Syndrome], FMS [Fibromyalgia Syndrome], and GWS [Gulf War Syndrome]. We desperately need to repeal the many existing negative stereotypes about these brutal diseases.
In the interest of time we are going to present bullet points and we ask that permission be granted to revise and extend our testimony as new information becomes available. There are many advocates for people with CFIDS/ME here today, so we will not repeat their claims. We are compiling a list of "Clichés, Quotes, and Anecdotes" for a book about people who fight on in the face of terrible odds. It is said that a picture is worth a thousand words. We believe that a good quote is worth a thousand words. With that said, here are a few quotations that might be of interest:
The first quote: "In an insane world, a sane man is crazy."
On April 15, 1989, at the first National public meeting about ME/CFS after the unfortunate 1988 Case Definition published in the Annals of Internal Medicine, I said, "If you do nothing else today, change the goddamn name of this disease. It demeans the people who suffer so badly, it sheds no light on a cause or treatment, it does not differentiate this condition from any other chronic condition,
and makes no mention of the tremendous pain, and the completely disabling neurological symptoms that we all experience." The patients in the audience erupted in applause, and many of the Doctors looked mystified. The Doctors thought, "What is the big deal? It is just a name." Big mistake! Nine long
years, and countless painful deaths later, a name change finally has been put on the table. And because you could not agree on a new moniker, you tabled it. This is very counterproductive. It is way past the time for a change. As the NIKE ad says, "Just Do It!"
The German philosopher, Arthur Schopenhauer, once stated, "All truth goes through three steps:
First, it is ridiculed.
Second, it is violently opposed.
Third, it is accepted as self-evident."
We believe that these conditions are cases of "different insult, same result." More than a century ago, Louis Pasteur said, "The antigen is nothing, the terrain is everything." We agree.
Unfortunately, in the field of Neurology, not much has changed in the past 115 years.
I start out every day for the last ten years feeling like I have just endured a "Rodney King"-style beating. Every nerve and muscle in my body feels like I have been beaten to within an inch of my life with a rubber hose Each and every day. I need at least ten strong pain pills to get through each day. Sometimes even duragesic patches can not stop the burning pain in my spine. And yet, ignorant and arrogant doctors have labeled my condition, CFS. The misnomer Chronic Fatigue Syndrome is the single biggest obstacle for raising awareness and the ensuing funds needed to correct this problem, according to Hillary Johnson. Listen to this excerpt from a recent letter from the United States Office of Personal Management. (read paragraph) Incredible!
In Hilary Johnson's landmark epic, Osler's Web, after more than 500 interviews with Doctors, researchers, and patients, she eloquently states the obvious: this is an organic brain disease! It affects multiple organ systems. It is as Secretary of Veterans Affairs Jesse Brown says, "As serious as a shotgun blast to the chest or head. It is that serious."
If you ask serious clinicians who treat people with AIDS and ME/CFS, they will tell you three things:
Except for the last month of life, most patients with CFS are more ill and more disabled than patients with AIDS.
There are more people suffering from CFIDS/ME than AIDS, possibly many more.
CFIDS/ME is now costing the U.S. economy more than the AIDS.
Ask them for yourself. And yet AIDS gets 1,000 times the funding we do. This is obscene!
Yet we are ridiculed by Jay Leno, David Letterman, Regis Philbin, Rush Limbaugh, Elaine Showalter, Shaquille O'Neil and Taco Bell, "Willie Wonka" Reeves and many other even lesser lights because
of this stupid name, and we then we must suffer a completely impotent silence from the people whose salaries we pay to protect us.
Some of our other concerns are as follows:
Since April 15, 1989, almost eight years ago to the day, we have claimed that this illness is much more common than our government or the Medical Establishment has admitted. (show chart). Even an
article in the January 1995 issue of Forbes Magazine, which is read by almost every CEO in America, states, "You might be one of the 19,000 Americans who is estimated to suffer from CFS. Or
you may be one of the 5 million who merely think they have it."
We feel that this level of ignorance in 1998 is totally unacceptable. Even the CDC had access to information at the time of the printing of this article that showed that the prevalence of ME/CFS-like illness was at least 30 to 50 times more prevalent then the information they were publishing. This
is at best, grossly negligent and incompetent, and at worst fraudulent and possibly criminal. If the CDC came out and said that they had underestimated the prevalence of AIDS by a factor of 56, there would be pandemonium and probable riots in the streets. And most definitely a housecleaning for the grossly
incompetent people who miscalculated so badly.
Now, since the spring of 1997 we have three different studies that seem to back up what we have been saying all along. Dr. Dedra Buchwald in Seattle, Dr. Leonard Jason in Chicago, and the CDC's own active (but still unpublished) surveillance study in San Francisco:
Dr. Buchwald: 98 to 267 per 100,000. 264,000 to 720,000 in the U.S.
Dr. Jason: 680 per 100,000 [health care workers]. 390,000 in the U.S.
Dr. Reeves and the CDC: 76 to 233 per 100,000. 205,200 to 629,100 in the U.S.
For comparison, approximately 330,000 Americans have died of AIDS in the 16 years of the AIDS Epidemic in America.
At an annual salary of just $36,666, this is an annual loss to the economy of $6.1 billion (265,266 people) to $21.6 Billion (726,666) from Stage 3 CFIDS patients alone. There is no allowance for the partial loss viral, physical, or chemical insult awway from complete and crushing disability. We feel that the money allocated for the upcoming Wichita study would be much better spent analyzing the data already collected by various ME/CFS practitioners from all over the world.
We said back in 1989 that there appeared to be at least three degrees of severity associated with this condition:
40 hour work week, then crash. No cooking, no cleaning, no extra curricular activities. Our estimate: 5,000,000+ in the U.S.
26-36 hour work week. Needs help with all other daily maintenance activities. Our estimate: 500,000 in the U.S.
Full blown CFIDS. Completely disabled. Unable to work, often need help with all activities. Our estimate: 250,000 in the U.S.
We know of no publication by any medical authority or governmental agency in any country that lists the very real and easily verifiable degrees of severity.
Another big concern: The CDC has finally admitted that even hough some people return to work, many, if not most, people who are ill long enough (6 months) to fulfill the current criteria never get better again. This is the exact opposite of what the CDC and the Medical Establishment has been saying for years.
This is becoming a tremendous strain on the Social Security Disability system. Most people with AIDS or Cancer die or recover before getting to a state where they are disabled long enough (one year) to qualify for disability! What is the current status of the Social Security CFIDS tracking system?
We believe that prolonged unexplained fatigue can be an unwitting springboard to full blown CFIDS. Now the CDC publishes a report where the list of Americans with prolonged fatigue > one month is 25%. Extrapolated to the entire population of the U.S., that adds up to 65 million people!
This is the approximate number of people who will experience heart disease or cancer. This sure sounds like an epidemic to us.
Regarding the definition, we call the new one "Gumbo" cause you threw in everything but the kitchen sink. The American Heritage Dictionary says that to define something is "to make it clear and distinct." Can you please explain to us what is so clear and distinct about this piece of work? How would
anyone make a judgment about disability from reading this? The CDC has repeatedly stated that this is a research definition. However, with the lack of a clinical definition, the CDC definition is used throughout much of the world as the standard for diagnosis and disability determination.
Dr. Mark Demitrack, a psychiatrist and so-called CFIDS expert, has proposed that we call this illness a "clinical condition" similar to hypertension. We believe that it can be both.
Also, The NIH and the CDC needs to make public the draft documents of future "Facts" Brochures before mailing hundreds of thousands of brochures containing inaccurate information and out-and-out lies. You should solicit information from clinicians and the ever-increasing number of Medical Professionals with
ME/CFS! And I repeat, if you really want to find the truth, you should include as much input as possible. And allow time for responses, before printing more than 100,000 copies of a brochure that you claim only affects 10,000 Americans! Then you print another 100,000 copies of the same inaccurate information.
One problem we have with the definition is the statement that symptoms begin "at or after the onset of fatigue." We feel that the facts are exactly the opposite. These symptoms aggregate over time in susceptible individuals and then are triggered by something, often a virus, usually during a stressful
period in the person's life. The complete and crushing exhaustion is usually the last symptom to come along.
Dr. Melvin Ramsay, one of the CFIDS/ME pioneers, stated more than a quarter century ago, "The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; Put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis [for recovery]."
No one is looking at these patients until after they have been incapacitated for at least six months. You are all sorting through the wreckage after the car has gone over the cliff. We need a system that can check the tires, the steering and the brakes before the car heads down that steep rocky road. At a
minimum, we need to be able to have a preliminary diagnosis before these people are incapacitated for more than two months. [See chart.]
We suggest the introduction of a written instrument that can look for early warning signs (both physical and mental) and a reproducible, quantifiable, verifiable, physical test such as a table tilt. And last, a viral load test such as Dr. Robert Suhadolnik suggests can be found in the anti-viral defense pathways.
We also suggest the sharing of data and patients with the Army and the Veterans Administration to look for common denominators. Like Fibromyalgia Syndrome and Multiple Chemical Sensitivities, Gulf War Syndrome has many overlapping symptoms with CFIDS/ME and is most probably a similar if not identical condition. The Department of Defense has claimed that they have spent more than $120 million on more than 90 studies for treating more than 110,000 sick veterans of the 700,000 men and women who served in the Gulf. And the conservative Journal of the AMA had four peer reviewed articles in their January 15, 1997, that said in the first paragraph, "up to 80,000 veterans of the Gulf War have returned with symptoms that closely resemble Chronic Fatigue Syndrome, but defy diagnosis."
And finally, we suggest the introduction of a national database. People could fill out questionnaires that have been put together by a private/public partnership. They could list their Social Security number and their mother's maiden name and a six digit secret code that only they themselves knew. This would protect identity and encourage honesty in answering the questions. They could mail them to an impartial third party for tabulation. They could also fill them out on personal computers on line or in doctors' waiting rooms. Doctors could list symptomatic treatments that had positive results. We could set up a web site on the Internet that support group leaders could download for their members.
We believe that the time for just talk is over. The time for action must now begin.
In closing, we say, "Listen to the patients." They will show you the way. Change the damn name! Anyone who is waiting for one etiologic agent to cause all this misery just proves they do not fully grasp the nature of this beast. This is a very complex illness involving multiple systems of the body. "Different insult, same result." There are many possible triggers. This illness is not rare, but quite common and getting more so. The longer we wait, the worse the damage will be. With high-tech tools and old fashioned hard work, we can become the first generation in History to begin to unravel this mystery. But we must work together: The Military, Doctors, Researchers, government officials, patients and those who care
for us. In reality, we have no other choice. Thank you for the most precious gift of all, your time.
Hello. My name is John Herd. Although many of you know me as John Friedlich. I've changed my name to John Herd. I decided to drop the F word. Figured if our illness can change its name so can I.
Please excuse me for reading my testimony, but I'm too mind mucked to do it from memory. And "mind mucked" isn't the name I'm recommending we change the name to.
CFS research has come a long way since the illness was given its current name. The name of an illness has a profound impact upon those who suffer from it, upon how the uninformed perceive it, and upon medical research and treatment. The choice of a new name must take into consideration not only what we've learned from medical research, but also the perceptions it conveys, and how the public will react to the changing of the name.
I do not wish to address these issues specifically, but rather the process and some reasons for my recommendations.
The subject of a choosing a new name induces very strong sentiments. Doctors, patients (PWCs) and government officials have been embroiled in differences of opinions about CFS, probably as long as the illness has existed. Many divergent views may well come to a head during the process of choosing a new name for the illness.
For this very reason I strongly propose that a mediated summit format be used in which all parties, government officials, physicians, the major patient advocacy organizations, and PWCs are represented on equal grounds.
I must emphasize the phrase, "equal grounds." Clearly the representatives of the government health agencies and physicians need to participate in the name change process. So too must PWCs be involved with a balanced voice.
During the 1992 AACFS conference a participant voiced the sentiment that many of us feel we are no more than lab rats. PWCs are far more than that. We come from a broad range of professions. Many PWCs have a better grasp of the medical physiology of CFS than many physicians have. PWCs certainly
have a strong understanding of medical issues and investment in the political issues involved in this process. The patient community has been largely barred from involvement in government activities, other than as lab rats. They have also, for all intensive purposes, been barred from the involvement in AACFS activities. This has to change. The illness and its name impacts every aspect of PWC's lives. They should and must be allowed to take an active role in all matters pertaining to CFS.
Several key aspects of a summit forum at that would greatly contribute to the outcome would be:
To have a nomination of delegates process similar to that used for picking members of the CFS Coordinating Committee;
To have all participating delegates, including the government officials/agencies, agree to adopt a new name by the end of the summit;
To utilize impartial mediators to keep discussion on target and moving ahead.
If too large a body of people come together to participate in picking a new name it will become unwieldy. For this reason, I believe a limited number of people should be actively involved as delegates.
The matter of changing the name has dragged on for years. This has happened despite the fact that many if not most researchers and clinicians involved with CFS feel the name is inappropriate and has needed to be changed. I propose imposing a time limit to within a scheduled summit to address and resolve the name issue.
Quietly changing the name behind bureaucratic doors and/or burying an announcement in a medical journal that few read will not be enough. In fact, it will have little if any impact on many of the matters that have made the changing a necessity.
Dissemination of information about a change can not be left mostly in the hands of the PWCs and their organizations. The illness, those who suffer from it, and their organizations, have long had a credibility problem with the media and the general public. Because of this the Department of Health and Human Services, its various branches, and the AACFS must take an active role, not just in informing the public and medical community of the new name, but also the medical reasoning behind the action. I believe making commitments to taking such actions and their initial planning should also be part of a mediated summit approach.
Good evening. My name is Drew Martin. I was diagnosed with a gradual onset of Chronic Fatigue Syndrome in 1996 while studying at the University of Kansas. I would like to start of by apologizing for not being present. Of course, my illness excluded me from travel. Please keep in mind that I am neither a clinical nor researcher.
I would like to start off by telling a brief story of my first encounter with the CFS name stigma.
I can remember when it was first suggested that I may have this illness. I laughed because I thought the doctor was telling a joke. He was always cheerful and eased his patients with humor. Needless to say, I was offended by his suggestion of the CFS diagnosis and never returned to see him. Only a short time before that, my friends and I had been joking about my symptoms being those associated with Chronic Fatigue Syndrome. I have to admit I was having just as much fun as the others at the expense of the illness's true nature, which I would soon experience.
I think we all realize the immediate need for a name change whether we admit it or not. I believe a recent survey showed that over 90% of patients desire a name change. I also believe that a majority of clinicians and researchers agree that the name is inadequate and should be changed. The science is present. It would also seem that a majority of illnesses that plague us today were named before their exact causes was
discovered All subjects considered, I do not see how a change of name would hinder progress in areas pertaining to research, education and treatment. In fact I believe it is necessary for us to progress in these aforementioned areas.
As I see it, we have two paths to follow:
We change the name to another more accurate scientific name;
We adopt an eponym.
In this presentation I will focus on a scientific name. However, I feel an eponym would be just as valuable. Unfortunately I do not see all agreement on an eponym nor do I see its selection being more than pulling the name out of a hat.
In selecting a name, my first obstacle arose when trying to define the illness as a disease or a syndrome. Using the Dorland's Medical Dictionary it would appear that both the definition for disease and syndrome could be applied.*
I propose the name myasthenic immune and encephalopathic dysfunction. The rational is as
The term Myasthenic is defined as pertaining to or characterized by muscle weakness adequately defines the symptoms experienced by the patients muscles. I prefer myasthenic over myalgic, for not all patients characterize their symptoms as muscle pain (the meaning of "myalgic").
The term immune is valuable in illustrating the undoubted immune dysregulation that occurs in the patients during active disease states. Whether the immune abnormalities are chronic t-cell activation natural killer cell deficiency or overwhelming cytokine and antiviral enzyme production., the research is supportive of the immune dysfunction. The words immuno or immunoregulatory can be used in its place.
The term encephalopahic, as defined by pathology of the brain, is also an accurate description of the active disease state experienced by these patients. Autonomic, cognitive dysfunction, blood flow, EEG, and HPA axis dysfunction are examples of findings that support the term encephalopathic. Encephalopathy -- but not encephalomyelitis -- is also an acceptable term. I would question the diagnosis of this illness if none of these abnormalities were found.
The following are a few variations of the name that I feel are acceptable:
Myasthenic Immune and Encephalopathic Dysfunction Disease
Myasthenic Immune and Encephalopathic Dysfunction Syndrome
Myasthenic Immunoregulatory and Encephalopathy Syndrome
Myasthenic Immunoregulatory and Encephalopathic Dysfunction Syndrome
Myasthenic Immunoregulatory and Encephalopathy Disease
Myasthenic Immunoregulatory Encephalopathy
As you can see, there are multiple variations of my proposal. Most of which are acceptable. For those who do not agree with my proposal, I would like to encourage them to take an active role in developing and accepting a new, less frustrating name that will help erase any misconceptions about the seriousness of this devastating illness.
Thank you for your time and consideration
*Definitions from Dorland's Medical Dictionary, Edition 28:
Any deviation from or interruption of the normal structure or function of any part, organ, or system (or any combination thereof) of the body that is manifested by a characteristic set of symptoms and signs and whose etiology, pathology and prognosis may be known or unknown.
A set of symptoms which occur together; the sum of signs of any morbid state; a symptom complex.
Speech on Name Change at the 1998 AACFS
By Bobby Mulligan
Director of the Georgia Chronic Fatigue Syndrome Association
Hi my name is Bobby Mulligan from Atlanta. I was diagnosed with Chronic Fatigue Syndrome in 1987 and Fibromyalgia in 1998.
Chronic Fatigue Syndrome.
The Oxford Dictionary defines these words as follows:
Chronic - long duration, a disease showing little change or slow progression, something that persists or reoccurs and is non-resolving over a period of time.
Fatigue - a term used to describe a common host response to multiple stimuli or different host stimuli.
Syndrome - a name given to an illness that can only be described by its symptoms.
If we wish to retain the word "syndrome", we must exclude RNase-L anomalies. Then the name needs to be changed to Chronic Fatigue Disorders! Because this allows multiple known conditions to be included under chronic fatigue disorders.
In saying this I must go on to say the following:
I was diagnosed with chronic fatigue syndrome by an Atlanta infectious disease specialist in 1987 with elevated EBV titer reading of 160 and an extremely elevated CMV titer of 380. It took almost 2 years for me to get my first diagnosis. I remember the early days - "Just give it a name!"
Our disease has gone through a transition of name changes over the past 64 years:
1934 - Los Angeles outbreak - Neurasthenia
1954 - Punta Gorda outbreak - Neurasthenia
1985 - Incline Village - Yuppie Flu
1985 - Raggedy Ann Syndrome
1988 - Chronic Fatigue Syndrome (Gary Holmes, John Kaplan, Carlos Lopez)
1994 - Chronic Fatigue Syndrome (International case definition)
1995 - Chronic Fatigue Immune Deficiency Syndrome
1998 - Chronic Fatigue Syndrome
I am exhausted by the name changes alone! I will be the first to say that the name of our disease, Chronic Fatigue Syndrome, does not do justice to the PWCs and their families.
CFS has been abused by early attempts at the National Institute of Health and continued attempts at the Centers for Disease Control, to minimize the reality of our malady.
But! I think to change the name of Chronic Fatigue Syndrome now, would be a great disservice to all PWCs.
Much money, time and education has been put into the reality of the disease. Some people say, what's in a name? Others say everything is in a name!
In my opinion over the last 15 years we have made very little progress in identifying our disease until this conference with the most recent findings of the RNase-L anomaly.
I have spoken with Speaker of the House Newt Gingrich and to my personal friend and Congressman the Honorable Bob Barr. They have agreed to give full support in fighting CFS and to increase and direct funding to finding a cure for chronic fatigue syndrome.
We now have the support of some major Congressional leadership with the name Chronic Fatigue Syndrome.
What is more important is to finally come up with a clinical definition of our disease.
Until we have a medical marker to identify CFS, then our name should remain the same.
We do not need to waste precious energy in fighting for a name change, as much as we to focus on a public campaign to describe or explain our disease. I think Tom Hennessy and others have great intentions but for an individual who has battled the disease for the past 12 years, I am much
more concerned with progress and honesty at CDC and NIH in dealing with the reality of our disease.
Changing the name at this time is medically and politically wrong.
Re educating the medical community to new name, changing the Social Security system identification of CFS and other legal ramifications are long term for those of us with CFS.
Please, I implore the leadership AACFS and CFSCC to leave the name alone but rather to create a broad public education process.
Thank you for the opportunity to speak on behalf of PWCs everywhere. Don't worry about the name for now by concentrate on a cause and a cure for our real disease Chronic Fatigue Syndrome.(CFS)
Continuing to ask researchers who have already published papers with the term "CFS" in it is whether they want to change the name is counterproductive and unnecessary: the people of the United States of America, by way of their elected representatives in Congress, have communicated to the DHHS and the CFSCC that they would like the name changed. The obvious reasons include the failure of the CDC to convince the public that CFS is not merely "feeling tired all the time, complaining a lot about it, and latching on to the latest fad by saying that's what you have," (which is the vernacular translation of the words "chronic fatigue syndrome.") Given that 98 percent of patients at the time the name was chosen were female, there is more than a hint of gender bias in the particular choice of a name, and it is not coincidental that patients find it demeaning. However, that is not the reason I wish to give you for changing the name. We have come to a point where the name itself is hampering the research process, not because of an absence of funding or any other reason having to do with public perception, but because it inappropriately describes the disease and is increasingly leading to research results that are incompatible with each other because the primary assumptions by the authors are so diverse.
Here then are my suggestions:
1. Myalgic Encephaloyelitis (M.E.) -- It is curious why it seems to have occurred to no one in the
United States in the mid-1980s to have given the Incline Village and Lyndonville outbreaks the diagnosis they would have received in Sussex, England: Myalgic Encephalomyelitis (M.E.). One presumes that the red herring of CEBV got in the way. Nevertheless, from the standpoint of a historian, there is a clear argument for retaining a name that has a consistent usage of nearly half a century, along with a body of research predating the Incline Village "discovery."
If the argument that "we don't want to change the name until we know enough to give the disorder it's final name" is convincing, then don't change the name. Rather, discard a name that
will be viewed in the annals of history as a brief detour into, quite frankly, a dead end.
True, the name M.E. itself is not precisely correct. That does not matter, because everyone understands we are going to change it over time. The advantage is that:
It gives greater continuity to the disease to recognize that it has been observed by physicians and researchers contiguously for nearly half a century;
The description of M.E. is closer to the symptoms most patients would use to describe their own condition - particularly the emphasis on neurological disruption such as blurred vision, photosensitivity, sensitivity to loud noises, cognitive dysfunction, etc.
We do not often get two chances to observe the sociology of science as it relates to the name of a disease, but with CFS we have now been given two different observations. First, in the United States, where the disease name is a common source of ridicule on TV. Second, in the UK, where the definition of the disease they call CFS is so much broader than the U.S. CDC definition that it calls into questions any conclusions made about research from one side of the ocean brought over to the other. One wonders why the CDC has been so quick to accept the work of Sharpe and Wessely that would indicate CBT has such a positive effect on people with CFS - but conveniently ignores the implications of using the Sharpe-Wessely estimate of prevelence within the population -20 to 40 times higher than the highest CDC estimates! [Sharpe estimates that 5% of the population, or one in 20 people, has CFS.] In the process,
the original M.E. patients have been lost in the shuffle. I cannot regard this as a positive development for the international integrity of research related to this disease.
Therefore, my suggestion is simple: go back to the name M.E. for the time being, reconciling the CDC definition of CFS with the U.K. definition of M.E.
2. CFS/M.E. -- My second suggestion is a compromise, or an interim transition solution. Simply do as many of us already do - add M.E. to the term CFS in the United States; leave the term M.E. in the U.K., and let other nations make their own choices.
3. Idiopathic Neuro-Immune Condition -- A third suggestion would be to head in a new direction
altogether: create an umbrella category of neuro-immune conditions, that would cover not only CFS/M.E. and Fibromyalgia, not only Post-Polio Syndrome, Gulf War Syndrome, and Multiple Chemical Sensitivities, but also Multiple Sclerosis, Lupus, Connective Tissue Disorders, and possibly Rheumatoid Arthritis. Tom Hennessy, Al Donnay and others have long fought for the inclusion of CFS/M.E., Fibromyalgia, PPS, GWS, and MCS under the same general category -- I feel equally strongly that M.S., Connective Tissue Disorders, and Lupus need also to be included. There are many crossover symptoms, the demography is almost identical in terms of gender distribution, and there are reasons to suspect similarities in etiology.
Until we find a new name for CFS/M.E. - or, until we have found names for the several disorders today called CFS/M.E. - those symptoms could fall under the category of an ideopathic neuro-immune conditi6n.
4. Naming the disease after a person. There are several advantages to this solution. It clearly
separates the name from any etiology, so one need not worry about future discoveries. It offers a clean bridge between the old and the new. And, not to be discounted as insignificant, it also humanizes the disease. Jay Leno will make no more jokes about it on the Tonight Show.
I have only two suggestions for an eponym. The first would be to call it Ramsay's Syndrome,
in honor of the researcher who first identified the disease in the modern era in a way that has been
in continuous use since. This is considered an important test in the sociology of science as to the
validity of a name - "M.E." has stood the test of time, and probably would still be the only name used for the disease in the U K and Canada (and possibly Australia) today had the U.S. not intervened in the social process of disease naming. Employees of the Federal Government, most notably Dr. Stephen Straus of the NIH, actually lobbied for the name change to the one the U.S. uses.
With the name change in the U.K. came a completely different perception of the disease, and the
patients. M.E. was not fully accepted, but M.E. patients had fought for and won much higher
visibility and understanding in the U.K. than their counterparts anywhere else on the globe. The
introduction of "Chronic Fatigue Syndrome" suddenly left them as vulnerable to the sick jokes of
the thoughtless as those of us in the U.S. If the public mistreatment of invalids is not of concern to
this committee, perhaps the impact on the purity of the research programme of CFS researchers
should be. Despite what is often said on the northwestern side of the Atlantic Ocean, the northeastern side does not define Chronic Fatigue Syndrome in a way that can make research compatible between the two nations - the complete opposite of Dr Straus' original purpose (and a problem he commented about at the original conference in Britain that recommended the name change from M.E. to CFS).
The "Oxford Definition" is so broad that the 80 or 90 percent of "CFS" patients so diagnosed would not meet the CDC criteria for a CFS-like disorder, let alone CFS itself. Thus far the research community has managed to finesse this problem, hoping (I imagine) it will correct itself over time. I cannot see how it will.
If M.E. is so unacceptable to American researchers and practitioners, then perhaps it would be
appropriate to use Dr. Ramsay's name instead -- call it Ramsay's Syndrome (or disorder, or disease).
Alternately, we could simply choose to name the disease for the suffering it causes, by naming
it after one young patient whose life was lost to that suffering ten years ago. Let us name it after
young Skye Dailor, and call it Skye's Disease.
In conclusion, I have offered a number of viable processes by which the disease name can be changed. Notice that I did not include the creation of a committee, or taking of a poll, or anything else of that nature. It is not necessary. The CFSCC itself has the power to change the name the government uses -- and, as the government "creates" money by fiat with a power that no one else can (fiat money is valid if and only if the issuing government accepts it at par for taxes - standard rule in historical economics) - so too the government's use of the new name will in itself change the landscape, and others will make the adjustment. To revert to the original name M.E., all it would take is to disavow the unfortunately replacement, CFS. And the term CFS/M.E. can be used as a bridge for a period of, say, two years.
The suggestion of the umbrella name Ideopathic Neuro-Immune Condition would require the cooperation of others from the other diseaeses. In that case, the CFSCC and the AACFS might
request that the Colleges of Internists, Neurologists and Immunologists create a joint committee
to consider the possibility of just such a category. The very process would, I think, be enlightening
and intellectually useful.
Finally, if the choice is made to go with an eponym, I strongly urge the CFSCC to start using
the new name and include the old one in parenthesis for a while. My choices for a new name is
either one that recognizes the contributions of the British in this area, Ramsay's Disease or
Ramsay's Syndrome. Conversely, we could simply name the disease after the suffering it has
caused, in the name of one who was lost to that suffering, young Skye Dailor. My final recommendation would be to call it Skye's Disease, from this point on. At once a noble and compassionate gesture, calling it Skye's Disease would be a decision the CDC and others represented in the CFSCC would never have to disavow.
Thank you for this opportunity, and I wish you the best of luck in moving forward to accomplish this goal first assigned to you by the Honorable Members of the U.S. Congress.
Mary Schweitzer, Ph.D.
Assoc. Professor, Dept. of History
(on medical leave with CFS/M.E. since January 1995)
Thank you for the opportunity to speak to the name change issue.
What I'm going to say isn't original or unique, but it needs saying again. The use of the word "fatigue" is simply not sufficient to describe the complexity of CFS. It's unconscionable that we, the sufferers, are also the victims of ill-informed health-care providers, as well as insurance and disability providers.
Many prominent researchers have spoken over and over about the overlapping nature of CFS [Chronic Fatigue Syndrome], FMS [Fibromyalgia Syndrome], MCSS [Multiple Chemical Sensitivities Syndrome] and GWS [Gulf War Syndrome]. As Tom Hennessy of RESCIND said many years ago, "different insult, same result" -- or perhaps it's "same insult, different result." It really doesn't matter how you say it -- it still makes sense. It's my strong belief that these syndromes with so much commonality should be brought together under an umbrella name. In that way, more effort can be put into finding the cause of, not just the treatment for, these syndromes.
Many researchers are focusing on specific "triggers" for these syndromes, but that research doesn't speak to the underlying cause. It's my belief that there's not one single trigger, but perhaps many. But all of our problems begin in the immune system and the brain. EEG and SPECT scans have shown that there are brain abnormalities. The brain controls every aspect of our body -- our immune and central nervous systems, our sleep dysfunction and pain. Until research focuses on these brain abnormalities, we may find
many "triggers" but not an answer.
If my estimates are correct, approximately 500,000 people suffer from CFS. 3-5% of the population is suspected to suffer from FMS, which accounts for another 7,500,000; GWS another 250,000; and I don't have an estimate for those with MCSS. Combined, this accounts for over 8 million people with one of these syndromes. That doesn't even include other similar conditions, for which there are no answers.
There is power in numbers. An umbrella name would go a long way towards educating our government
and the medical community, as well as unifying the research effort. By looking at these conditions from the perspective of predisposition, individual genetic make-up, "insults" to the system, resulting in unique manifestation, by whatever "label," depending on the type of doctor we see, the combined research, removing the meaningless "labels" we live with now, would benefit all.
Many people, particularly in the U.K. and Australia, call CFS M.E., or myalgic encephalomyolitis. I'm told by my psychopharmacologist that this is seen as just another "wastebasket" diagnosis in the medical community. I feel we need an umbrella name that speaks more directly to the constellation of symptoms we have. Someone suggested Chronic Immune Dysfunction Syndrome, another Chronic Multisystem
Illness. Muhammad Yunus has called it Dysregulation Spectrum Syndrome. Another person
proposed Chronic Walking Dead Syndrome.
But the body's system are controlled by the brain. We need a name that will be understood by the disbelievers, both within and without the medical community, which conveys the fact that the brain is the culprit. I urge you to find an umbrella name which will convey the severity of these syndromes. If that can't be done, then I believe no name change should be made at this point, since it would only lead to
further confusion and ignorance.
Greetings to all attendees of the Change the Name Forum. My name is John Trussler from Turlock, California. Prior to becoming disabled in 1986, I was president and CEO of a medical center for 11 years. I am also co-founder of a CFS support group and am a member of the CFIDS Association of America's Board of Directors. Today, however, I am addressing you representing only myself.
Changing the name of our disease is a sensitive and potentially explosive issue. Along with virtually everyone else, I agree that the name Chronic Fatigue Syndrome is terrible--one that is unfair to all of us who suffer from this insidious disease. But, in my opinion, now is not the time to change
Most importantly, we don't know the etiology of our disease. Treatment patterns are continuously changing as new medical findings become available. Research on the 2-5A enzyme pathway, low blood volume studies, neurally mediated hypotension -- all give promising advances to understanding our disease -- but, so far, fall short of telling us what is the root cause. Any potential major breakthrough in research seems to fall painfully short.
An eponym would not be an effective way to alleviate our concerns. We may find out later that the eponym picked is not relevant. M.E. is used in some countries, but that name is also controversial to many who use it. Yes, we all want to change the name, but to what? To Ramsey Syndrome --Peterson-Cheney Syndrome -- no thanks -- even though one of them is my outstanding personal physican. We have gained much recognition over the past 13 years -- in the media, the public, the government and the medical community. Rarely do I still hear our disease referred to as the yuppie flu, kissing disease,
Epstein-Barr virus, etc. On a recent Oprah Winfrey show regarding the subject of hard to diagnose illnesses (including CFS), the host physician stated that "CFS now is its own entity." That, in itself, is a significant acknowledgment
The medical community should take the lead for a name change. There is no better source than the AACFS, and we, as PWC's should keep reminding them of their responsibility to do so. But we need to know the etiology before changing the name. What should the name change accomplish? It needs to stand the test of time in being an identifier of what we suffer from. It is important to change the name only once. If PWC's change the name prematurely, it will cause much confusion and run the risk of losing hard earned support and creditability with the medical community. Patients would lose much of the awareness and respect we've gained over the years.
I recently received a newsletter from the University of Washington Twin Registry. I am a twin and a participant in their worldwide research involving over 200 sets of twins. Their report, although preliminary, states, in part, (quote) "that the intensive study has shown some really remarkable results --basically, there have been no differences noted between the sick and the healthy twin on any of the study examinations except for T cell activation, the significance of which we are unsure of right now.
Furthermore, our findings are the first to strongly suggest a genetic vulnerability to CFS." Their report means to me that the more researchers study our disease, the more they realize there's still much more
We've come a long, long way and we shouldn't lose focus on what we've already accomplished, and on our common goal -- to find the cause, and eventually a cure. The name will then become one that we can all agree on. Those who are gathering the troops to initiate a name change are erecting a new barrier between patients and between patients and their doctors. Let's stop wasting much energy and stop causing division within our PWC community by trying to force a premature change in the name. Let's join forces and fight for much more research funding, so that we can eventually change the name to something that can be supported by medical science. Medical science must give us the missing link -- hopefully before too much longer.
Thank you for the opportunity to address this forum.