CFS Name Change Proposal

She has no memory of those grim days, back in 1997. She can dimly recall a period earlier in the year when she had been sent to the Lister Hospital psychiatric department because the doctors had no idea what was wrong with her and thought it must be in her mind.

The Medical Professionals with CFIDS_ME are appealing to the Name Change Committee and the CFSCC to seriously consider our suggestions in this matter of a "new" name for Chronic Fatigue [Immune Dysfunction] Syndrome. We are patients as well as advocates for patients too sick to speak for themselves. We believe our own experiences and contacts with countless other sufferers (many medical professionals), and contacts with numerous researchers, as well, give us insight and reasonable expertise on this matter.

We, as patients, have all suffered long enough from the use of the "present" name of CFS. Every day that patients have to live with this current name, they are subject to extensive criticism, disbelief and minimization of the many cruel symptoms this disease presents. We all have similar stories of painful exchanges with doctors, nurses, family or friends. Every day that there is a delay in changing this discriminatory name, thousands of patients suffer needlessly.

We believe that if this illness is evaluated and intervened EARLY in the onset process, that the patient stands a better outcome. Due to current guidelines of a 6 month waiting period before a diagnosis can be assigned, we feel many patients are being overlooked, and many possible diagnostic tests (i.e. viral titers, immune studies, spinal fluid studies, SPECT scans, etc.) are not as sensitive later, possibly due to daily changes, in the disease process. At acute onset, many patients describe overwhelming _ and many possibly laboratory_measurable _ symptoms. These symptoms are not unlike those of encephalitis as defined in Taber's Cyclopedic Medical Dictionary, (18th Edition, 1997, F.A. Davis Company, 631_632): "ETIOLOGY: Encephalitis may be due to a specific disease entity, or it may occur as a sequela of influenza 85 herpesvirus infection... vaccinia, or other diseases.

SYMPTOMS: Symptoms include headache, muscle stiffness, malaise, sore throat, and upper respiratory tract problems. Neurological effects are nuchal rigidity and opisthotonos; changes in level of consciousness; increasing restlessness, projectile vomiting, convulsions, pupil irregularities, motor dysfunction, involuntary movements, and vital sign changes; and ptosis, diplopia, strabismus, tremor, exaggerated deep tendon reflexes, absent superficial reflexes, and extremity paresis or paralysis. Fever, nausea and vomiting, behavioral changes, and abnormal sleep patterns may also be present". We suggest a THROUGH review of documented symptoms of this disease, especially at onset in the vast literature that is available on Myalgic Encephalomyelitis, including those by Drs. Melvin Ramsay, John Richardson (especially with our seizure activity), and Elizabeth Dowsett. We also suggest re_reading Dr. Byron Hyde's The Clinical and Scientific Basis of M.E./C.F.S., especially Chapters 5_8, because these symptoms of encephalitis exist still.

We also understand that the current "argument" of "not finding any inflammation of the brain" has been the major one used against this name. We "remind" those on the committee that research at the onset of this disease is almost nil _ or at least that that has been allowed to be submitted in the medical journals in United States_ and ask, "where is all the 'non_proof' everyone is always telling us?" When were the patients studied? How many were studied? How many researchers presented studies of this question and who are they? In what specialties of study are they? What year(s) did the studies occur? And more importantly, who did the studies? If our government health officials did the studies, are there any private research studies to back them up?

We think these are valid, important questions because we know in the mid-Eighties we were told that AIDS only affected a certain group of male persons, and that all the "body fluids" of our (female/"straight" male) patients were "benign", then, "oops," the information being told to us as medical professionals, and believed, was dead wrong.

Also, we are fully aware that many, many patients have high titers of Cytomegalovirus, Epstein-Barr virus, HHV-6-85 (the list is long), and that THESE viruses are ALREADY known to cross the blood_brain barrier and cause encephalitic symptoms in their own right. EBV has also been found in joints/fluid of those with (painful) arthritis, and CMV can cause problems with eyesight. We would like to see the studies of the disease we have and how it affects the central nervous system in relationship to these known viruses that do cause CNS symptoms. If these known "CNS" viruses can affect others in other diseases, how is it that they cannot affect us, too, and cause the "itis" inside us?

We feel it is unnecessary to 'reinvent the wheel', and produce another name, as we know from years of working in the medical field, that the different specialties in medicine, and the growing sub-specialties within these areas will result in all of these specialties "declaring" their own "cause" of this disease. In other words, if you put 50 doctors in a room and have them define the concept of "fatigue," they will all declare a different answer according to their area of specialty.

We appreciate the hard, dedicated work all researchers are doing for us as patients and fellow medical professionals. We would like to see the research funds increased for these dedicated souls and also for other specialists to become a part of this team we wait so impatiently to hear from. The present name is hindering research as much as it is the patients, and to think otherwise would only broaden the expanse of confusion and discrimination that both experience.

Myalgic Encephalomyelitis has been in use for many, many years, and is documented in vast research journals all over the world. It has had its own World Health Organization diagnostic code (G93.3), and Dr. Melvin Ramsay, et al, allows for study of this disease, and a viable definition that has been used and proven throughout its history.

As patients and advocates for patients, we are still trying to understand how "one" NIH Ph.D. could have so much influence above and beyond this government committee, the U.S. Congress, patient physicians/researchers and millions of patients in regards to the name of this disease. From 1988 to the recent past, we ask, "how could this 'one' person be so influential in regards to the name of this disease?" How can this 'one' person travel to so many countries, and with a "blink of an eye," CHANGE Myalgic Encephalomyelitis to Chronic Fatigue Syndrome?

If Chronic Fatigue Syndrome can be a replacement for Myalgic EncephaloMyelitis, then the opposite must be true.

Hence, the value of this one action has reinforced a simple algebraic equation, if A=3DB, then B=3DA! So, the name, Chronic Fatigue Syndrome =3D= the name of Myalgic Encephalomyelitis. Because this holds true (via proof), then there is already a past definition and W.H.O. code. Not only does this hold true, but support groups and many physicians are familiar with both names, either used singly or interchangeably and it is often seen that "Myalgic Encephalomyelitis" is "a.k.a." Chronic Fatigue Syndrome as seen in research literature and support group literature across the world. The name has already been chosen: A=3DB, B=3DA and A "aka" B, B "aka" A

Last, but most importantly, we propose a new acronym for this disease, Myalgic Encephalomyelitis, using the letters M.E.M.

Just as the acronyms for Fibromyalgia Syndrome (F.M.S.), Acquired Immunodefiency Syndrome (A.I.D.S.), and Cytomegalovirus (C.M.V.), among others, use the letters in their names, we suggest using "M.E.M." for the name of Myalgic Encephalomyelitis. This would prevent any discrimination of the acronym "M.E." to be "joined up" with the CFS version of 'yuppie flu' and "ME disease."

By using "M.E.M." we could accomplish several very important goals, one especially, as a poorly needed guideline for physicians when evaluating patients with this suspected illness: "ReMEMber To Check The MEMory." This is important because a CARDINAL sign of this disease, especially at ONSET, is a long list of cognitive/CNS dysfunctions involving memory that is often forgotten or overlooked.

As veterans of medical and academic settings WE KNOW the importance of this suggestion to "reinstate the name of Myalgic Encephalomyelitis" and to also help with educating others, especially our Medical Professionals by using this acronym of "M.E.M." "ReMEMber" these advantages: It is easy to reMEMber. It is non_discriminatory to patients. We can bring the use of Myalgic Encephalomyelitis BACK by using a term known by others especially outside the U.S.A., while giving the U.S. a "new" name The first two letters (M.E.) are already used and familiar to many physicians (i.e., neurologists). It serves as a guideline for "inexperienced" physicians, especially to medical students (who use acronyms to learn) It is available NOW, as an acronym as it is not in use by any other (known) disease. It had/has its own diagnostic code (WHO G93.3.) It is well defined in historical aspects, with documented staging and is easily accessed for forward_looking research. And the name is still used TODAY.

Respectfully submitted, Gail Dahlen, RN, President Mary Silvey, RN, Vice President Lori Clovis, MA, Secretary Anita Burgess, RN, Treasurer of Medical Professionals with CFIDS_ME