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Winter 2004 

Readers' Forum
Correspondence with the Chronicle editor

In the Fall 2003 issue, the Chronicle asked readers to respond to this Hot Topic question: "Besides a cure, what do you hope the new year will bring the CFIDS community?"

It is my ardent wish that the CFIDS community will learn all about the St. Amand guaifenesin/salicylate-free program for the treatment of FM and CFIDS. As a CFIDS patient who has been horribly ill since 1991 and who has tried most everything within reason to no avail, I found significant relief of my symptoms with this program. I have been on it now for over two years and have seen the wonder of what this protocol is doing for me and others.

Annette Perry, California

(Editor’s note: For more information about this treatment, see www.guaidoc.com)

Before a cure, we need to get rid of the humiliating, degrading "F" word. This "F" word does not describe our severe disease. Until we change it, little serious research will take place and most of the research that is done will be about "fatiguing illnesses." Most people think we are lazy or crazy or both upon hearing the name of our illness. What does fatigue mean, anyway? I can’t even relate to that term, yet I have been deathly ill with a "diagnosis" of chronic fatigue syndrome for over 13 years.

Anita Burgess, Florida

We need to come together
In the late 1980s a CFIDS newsletter published a cartoon of an elephant being examined by five blindfolded doctors, each concentrating on a different part of its anatomy. This reflected the turmoil CFIDS was in. No one could draw a clear-cut consensus for ailment or treatment — or even define it with a specific name.

I believe that the cartoon would be just as relevant today. CFIDS doctors, researchers, advocates and PWCs have not come together as a working team. While individual efforts have produced much knowledge and should be appreciated, the problem is that they are individual efforts. We have grants and research dollars scattered in all areas and none bears dynamic effect in the prevailing race.

The CFIDS battle has become a power play. We have two or three national advocacy groups contending for first place. Researcher is competing with researcher for fame and recognition rather than pooling his or her findings together with others’. Support groups relay information from doctors and national advocacy groups, taking a stand for one or another. Very few newly diagnosed PWCs have continued where long-time advocates have left off.

Until we join hands across the country and allow what we do know to amalgamate into a steadfast purpose, the problem will always remain an enigma — at the elephant’s expense.

Estelle Rouleau, California