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Medical Professionals/Persons with CFIDS

Letter to the Honorable Donna Shalala
requesting a change in the name "Chonic Fatigue Syndrome"


Medical Professionals/Persons with CFIDS
Lori L. Clovis, Secretary
25 February 1997
Honorable Donna Shalala
Secretary, Health and Human Services
200 Independence Avenue SW
Washington, D.C. 20270

Dear Secretary Shalala,

As a person who has suffered from Chronic Fatigue (Immune Dysfunction) Syndrome for nearly ten years and as a Board Member of the Medical Professionals/ Persons with CFIDS Support Group, I am writing to emphatically urge you to commit to changing the name of this horrible disorder.

For the past 8 years, I have been active in several local and national CFIDS support groups and I have seen the tremendous damage this name has caused. People with CFIDS are humiliated and discriminated against primarily because of the name chosen by the Centers for Disease Control "panel" in 1988. Physicians, insurance companies, medical researchers, the media, family and friends, and the general public absolutely DO NOT take this disease seriously as a direct result of this name.

I cannot count the times that people have responded to hearing the name of my disability negatively, usually saying something like, "Oh, I'm tired too. I must have CFS." As I am sure you are aware, there is SO MUCH MORE to this disease than simple fatigue. The term fatigue is not at all descriptive of what this disease feels like -- it is closer to total physical exhaustion. It is definitely NOT the normal "fatigue" one feels after a long but productive day. I ought to know; I put in many, many long but productive days prior to getting ill in November 1987 as a full-time employee for MDS (now Corning MetPath) Medical Laboratories and as a part-time English teacher and HEOP tutor for St. Bonaventure University. As a worker who averaged 65-75 hours per week, I fondly remember the "fatigue" I experienced when I finally fell into bed each night at 1 AM only to get up again at 6 AM! I desperately pray that one day I will be able to experience THAT kind of fatigue again when the riddle of CFIDS has been answered and effective treatments are available!

There are a number of alternative names which could be used in place of Chronic Fatigue Syndrome that would give this devastating disease legitimacy and respectability. One option is Myalgic Encephalopathy - a term which suggests both the involvement of the nervous system and the muscle pain which is a hallmark of this disease. Another possibility is Ramsay's Disease, a name which honors the late Dr. Melvin Ramsay, a British doctor and scientist who has done a great deal to investigate the cause(s) of CFIDS and define the disease as a real medical entity.

I do not believe that persons with CFIDS will receive the respect, care, and compassionate treatment they deserve until this name is changed to a term which adequately suggests the severity of this disease and the significant life-changes it engenders. Please support changing the name of this devastating disease; it is the least we, as sufferers, deserve.

Thank you for your consideration in this matter.

Sincerely,

Lori L. Clovis, M.A.
Editor, MPWC News


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