Readers’ Forum

Lobby Day worth the cost
I have just returned from my second journey to Washington, D.C., to participate in an event that is near and dear to my heart-the annual CFIDS Lobby Day. I was very fortunate to have found the strength to attend this extremely important activity and was lucky to have a very close and dear friend accompany me as my "healthy" advocate, as I can no longer travel alone. Our Lobby Day this year took place on May 12, which is the day dedicated to our cause and is called CFIDS Awareness Day. This year, as a total group, we were 67 strong! Well, as strong as any of us could be.
 
The Massachusetts/New Hampshire legislation consisted of Mark Elliott of Hyannis, Mass., Loretta Ricker of Keene, N.H., my friend Joyce MacDonald of Rockland, Mass., and myself. As a group, we descended on Capitol Hill the morning of the 12th, well trained, thanks to Kim Kenney of The CFIDS Association of America and Tom Sheridan and his group. Our full day of scheduled appointments included three in Senate offices and three in House offices. Needless to say, we were apprehensive and a little overwhelmed at the outset. However, after the warm reception we received from Sen. Judd Gregg's staff  (N.H.), we were pumped up and ready for more. We also met with Sen. John Kerry and Congressmen Michael Capuano and William Delahunt of Massachusetts and with Sen. Bob Smith and Congressman Charles Bass of New Hampshire.
 
During each meeting, our adrenaline would kick in and our message, although sometimes difficult to get out straight, was heard and well received. To our delight and surprise, five of the six offices were familiar with CFIDS. They were supportive of our requests and were outraged at the findings in the Inspector General's report on the CDC's misuse of CFIDS research funds (see page 20). They all agreed to support our request for restoration of the misspent funds and corrective action for those who were responsible.
 
The Lobby Day experience was exhilarating yet tiring. The four of us in our delegation gave each other the encouragement and strength needed to make it through yet one more meeting. I spent four days recovering physically before the brain fog began to lift. However, even though I knew I would have to pay a price, I believe the good we accomplished by being there and the contacts we made will pay off in the end. Therefore, I plan to recruit a healthy advocate again next year and head back to Washington for the third time.
Diane Turner, Marlboro, Mass.

'Envelope' a tough fit
I really appreciated JoWynn John's article in the March/April 1999 Chronicle. Her story is so similar to mine. Are you hearing that a lot? Of course, there are differences. I'm trying to learn what my envelope is. That's hard-and harder still to stay within it. It's so easy to overdo and then suffer for it. (My family thinks I am a very slow learner in that area.) After seven years as a PWC*, I, too, am moving past the "what can I take to lessen this illness" and moving toward just trying to live the best I can with it. So many things had negative effects; some helped but were harmful to my system. I'm tired of spending tons of money, which we really can't spare, chasing after an elusive pot of gold. Thanks for that very informative article.
Felicia Bell, Roanoke, Ind.

Thanks for 'Message of Hope'
Thank you for publishing "A Message of Hope" by Donald Prichard in the May/June 1999 Chronicle. While the majority of the article is quite inspiring (and much I can relate to), I feel compelled to comment briefly on the paragraph in which electroconvulsive therapy (ECT) is mentioned. Mr. Prichard may be one of the lucky ones who was helped by ECT; however, this is not always the case and thus should not be generalized (which he certainly didn't intend to do). I have had eight shock treatments since 1993 at one of the best hospitals in the country (as a last resort because of my body's resistance to antidepressants-I have tried about 15 thus far) which have not only been unsuccessful but positively harmful. You may wish to refer to the work of Peter Breggin, MD, an outspoken (and not very popular) opponent to ECT.
Ingeborg Kuhn, Ukiah, Calif.

Don't discount Candida albicans
I'm writing to comment on your review of Dr. Charles Shepherd's book, Living with M.E. (May/June, 1999). (Note: M.E., or myalgic encephalomyelitis, is the name used in England for CFIDS.)
 
Your review cited Dr. Shepherd's argument that "claims of candida overgrowth as a factor in M.E. are not backed up by sound science" and that "efforts to control this alleged yeast overgrowth are a blind alley."
 
I disagree strongly with Dr. Shepherd's point of view. I base this disagreement on my own experience in practice and the hundreds of letters I've received from chronically ill people, including those with CFS/CFIDS, fibromyalgia and related disorders.
 
Here's one woman's story: Paula, a 39-year-old Nashville businesswoman, worked 10 hours a day, ran 15 miles a week and enjoyed an active personal and professional life. In her late 20s, after taking tetracycline for 18 months, Paula developed concentration problems, anxiety and fatigue. Her symptoms were disabling and she had to give up her job and stay in bed most of every day for a year.
 
She told me her story and asked for help. I gave her the name of an empathetic physician who put her on nystatin, a sugar-free special diet and nutritional supplements. Within a short time, Paula began to improve. In a few months she regained her health and was back at work.
 
Paula appeared with me on WSMV-TV in Nashville a couple of years ago. She called me in May and said, "I'm doing great. I feel wonderful! I'm working full time and more and enjoying life."
 
People with CFIDS/M.E. have weakened immune systems. When the immune system is weak, the usually benign microorganism, Candida albicans, multiplies on the inner warm membranes of the body-especially the digestive tract. As a result, a whole cascade of problems develop, including a leaky gut, which promotes the absorption of food allergens, endotoxins and enterotoxins.
 
PWCs who have taken repeated or prolonged courses of antibiotic drugs are especially apt to develop yeast overgrowth. Most individuals who fit in this category can be helped significantly, even dramatically, by a simple, safe treatment program which features a sugar-free diet and oral antifungal medication, including nystatin, Diflucan or one of the other azole drugs.
William G. Crook, MD, Jackson, Tenn.
Editor's note: Dr. Crook is the author of The Yeast Connection and the Woman, first published in 1995 and revised in 1998. He is currently updating the book to include a chapter on chronic fatigue syndrome and fibromyalgia.

Support for Neurontin
My experience with the drug Neurontin has been quite different from that of Darden Burns, whose letter appeared in the May/June 1999 issue. My almost daily headaches have nearly vanished, energy has increased significantly, my weight and my libido have normalized, and the pallor that my face has had for more than 12 years has been replaced with a healthy color. All these benefits occurred with no development of tolerance (the need to take more medication to achieve the same result).
 
Clearly, Neurontin is a potent drug. It has anticonvulsant properties, so there is the possibility that seizures can occur if it is discontinued abruptly. If there is a need to decrease the dosage, it should be done very, very slowly and in very small amounts.
 
I hope PWCs will not be needlessly afraid of this medication and will speak with their physicians about trying it.
Brock Oyler, Saluda, Colo.
 
A note of sympathy and thanks
I would like to convey to Jim LeRoy's family my deep sorrow at learning of his suffering and death and extend to them my sympathy. The article he wrote for the Chronicle on multiple chemical sensitivities (MCS) has turned my life around and has been a never-ending source of help.
Diane Timbers, Tucson, Ariz.

Remembering an activist and friend
Jim LeRoy was much more to me than an activist and individual counselor to people with MCS and CFIDS. He was my beloved husband, friend and one true love. His death this spring was a great loss to me and to his parents, sisters, many nieces and nephews, and to my brothers and sisters. We miss him sorely. Even 10% of Jim-all he felt that was left of himself after many years of sickness-was more to us than 100% of many other people. At 47, he died too young, with so much more to give than he realized. His family and I wish to thank the Chronicle for noting his passing and all those friends who have shared their sympathy.
Sarah LaBelle, Oak Park, Ill.

Forget Cher as spokesperson 
It would do more harm than good to have a reluctant spokesperson, and Cher is obviously not interested. We don't need someone who has discounted and hidden her illness and now tries to pretend it hardly happened or that a cure is available. She's more interested in promoting her music and movies than in bringing this issue to public attention. And to have people see her jumping around on stage and in music videos only adds to the general perception that somehow CFS can be overcome if we just get up off the couch.
 
Sooner or later the right person, with the right attitude and the right exposure, will come along. As prevalent as this illness is, it will inevitably hit a public figure. I'm willing to wait for a worthy celebrity advocate.
Patricia Stegman, New Freedom, Pa.

Correction 
In a July/August 1998 article about responses to Dear Abby, Thomas E. Smith, PhD, was incorrectly identified as a psychologist. His degree is in health care administration and business management.