Parkhurst bombarded with "cures"
I am sorry that Jo Imlay (Sept./Oct. 1998, Readers' Forum) found the article about me in the May/June 1998 Chronicle pessimistic. I will only say that I am not pessimistic, and I am delighted that she feels that she is recovering from her illness through the use of alternative medicine and therapies.

It is the subject of alternative medicine that prompts this letter. When the article that was reprinted in the Chronicle appeared in my local newspaper, I received a deluge of telephone and mail solicitations for alternative medicine products, treatments and clinics, and multiple testimonials and anecdotes of miraculous cures. Many of these were from well intentioned, if poorly informed, people who sincerely wanted to help. Most had a substantial price, and the majority involved multi-level marketing. I still receive solicitations 11 months later.

An old adage states, "An illness for which there are many treatments has no cure." The corollary is, "When there is no cure, there will be a multitude of treatments." At this time there is no cure for CFIDS. This fact can create desperation, which makes us vulnerable to the allure of unproven treatments. Unfortunately there is no agency or clearinghouse to protect us or give us objective information, and we must thread through the maze alone. We do it by seeking the best possible medical advice and care and looking with healthy skepticism on all treatments, alternative or allopathic. 

The terms "cure," "recovery" and "healing" are often used in connection with CFIDS. There will, some day, be a cure for this dreadful illness which will enable us all to recover our lost physical health. It will come from intensive research done with good science, and it is our ultimate goal. Healing is a process that comes from within and does not require us to spend inordinate sums of money or indulge in false hope.
Jackson Parkhurst, Cary, N.C.

Focus on "got done" list
I am responding to "the secret life of a person with CFIDS" in the Sept./Oct. 1998 issue. I got pretty discouraged with my new activity level-downright depressed, in fact-and my self-esteem had virtually disappeared, until I realized how much importance I'd been giving to what I couldn't do, and how little acknowledgement I gave myself for what I did accomplish. I was beating myself up with my "to do" list! So I started making "got done" lists. Each day, I wrote "Today's Accomplishments" and the date across the top of a blank piece of paper. When I finished something, I wrote it down. I didn't blow by anything. Some days, brushing my teeth was a real victory. When I wrote down an accomplishment, I also praised myself. It wasn't long before my old familiar "can do" feeling was back, my self-esteem was greatly improved, and I began to accomplish so much more than I could have imagined possible. Give it a try.
Ruth Putney, Tucson, Ariz.

Thanks for writers' honesty
I just finished reading my fifth CFIDS Chronicle and had my fifth good crying spell. I'm crying today for Anonymous, Mary Ann Tricsko Sotero, Tara Allan, Susan Dion and contributors to "One to One." For myself, I cry too often, mostly in secret. I love these writers' willingness to expose what this "dis-ease" is like and to help others cope, as well.

I could write a book about what has happened to me and what life is really like with CFIDS. Maybe someday. Meanwhile, I thank you for the wonderful Chronicle. It's a great help, and after my cry, I feel encouraged to fight, when able, to get well.
Shirley Edwards, Bridgeton, N.C.

Share news, even sad news
Ever since I read Marc Iverson's moving tribute to Caryn Freese (Sept./Oct. 1998), I've wanted to write and express my sorrow and to thank you so very much for publishing when one of "our family" dies. I had the privilege of meeting Caryn a few times and attended support group meetings with her in Charlotte, so the news hit hard to think this gifted young woman was gone. I pulled out the "Living with CFIDS" issue (Spring 1992), reread her letter and the letter from her father, and felt I knew something about her.

To those that don't have this illness, it may seem bleak to share news of death, but I want to know, just as people without CFIDS like to know, how friends are doing and certainly when they die. Printing about those that have committed suicide doesn't make me want to do the same, but it encourages me to try all the more to carry on the fight, even though I'm becoming increasingly limited. It's the least we can do to acknowledge their deaths and what they meant to us.
Name withheld on request

Obituary sparks debate
I agree wholeheartedly with Dr. Lapp's comment that "inclusion of such obituaries is just bleak" (Nov./Dec. 1998, Readers' Forum). I'm certain that as one of the top CFIDS specialists in the world, Dr. Lapp understands that living with this illness is also bleak-at best. When we acknowledge members of our own community who have died, no matter the circumstance, we simultaneously acknowledge the strength and endurance of those of us who live with this hideous disease, and that is supportive. At any rate, the Chronicle is not the "support group publication" Dr. Lapp seems to think it is. Thankfully it is, above all else, informative, and that is what makes it such a valuable resource to so many of us.

I fear that your readers may assume from Dr. Lapp's comments that Dr. Lannert was a patient of his; she was not. Sadly, his information on this particular PWC is incorrect. Dr. Lannert was not suicidally depressed prior to taking Ampligen. She was, as he states, extremely debilitated, and for that reason was given the opportunity to be treated with Ampligen.

Perhaps it would help to reread the Chronicle article on crisis intervention written by Dr. Lannert (Summer, 1995). Better yet, maybe the Chronicle could reprint this piece as a fitting tribute to a PWC who dedicated much of her meager energy to preventing and treating depression and suicide in the PWC community.

Finally, if, as Dr. Lapp states, Ampligen is "the only major hope at this time for sufferers of CFIDS," then that is surely the most depressing news of all for the many PWCs who either cannot afford this drug or have not responded positively to Ampligen.
Danya Zucker, New York, N.Y.

We help one another to survive
In the Nov./Dec. 1998 Readers' Forum, I wrote that we must talk about suicide as an urgent issue for PWCs. Since then, I have been writing my thoughts, and I hope others have, too. Now in winter, our most dangerous season, there is one thought I must share.

Even though I don't know you, I don't want to lose you. I don't want you to lose me, either. Your mere presence in the world, the simple fact of your breathing, encourages me. Every hour you live puts courage into the world that is felt by me. Each day you wait out illness gives me patience and determination. Your life is valued and valuable, even if you do not believe me.

Your life has a ripple effect on other lives. Everyone's life does. I did not deal with the first years of CFIDS gracefully. Even so, one day a woman who calls me about once a year telephoned to say that she had just been diagnosed with cancer and had undergone emergency surgery. "I thought of your courage as they wheeled me in," she said. "If you could stay alive, so could I." Even if we are in deep distress, we are giving others the best gifts: courage, determination and patience.

The simple fact of your life matters more than any work anyone could ever pay you to do. Please stay alive and trust that you are helping other people, including me, to survive.
Judy Kruger, Collingswood, N.J.

CBT researchers need to state beliefs
I was very interested to read the recent coverage of cognitive behavioral therapy (CBT) in the Nov./Dec. 1998 Chronicle. I have been skeptical and even offended at this therapy in the past, but after reading the articles I wondered why and have come up with what I feel is the main problem in the widespread acceptance of CBT by CFIDS patients: poor communication from the CBT promoters themselves.

The coverage made me believe, for the first time, that there could be some positive benefits to CBT when applied appropriately. I think learning to live within an envelope and trying to be as active as possible within that envelope can certainly be empowering to a CFIDS patient. This aspect of CBT has not previously been highlighted; CBT has usually been presented as a way to correct laziness.

I think the reason CBT has had such a poor reception in the CFIDS community is due to contradictory explanations. On one hand, psychiatrists such as Simon Wessely appear to approach CBT as a treatment for a primary psychiatric condition. In other venues, such as the one in the Chronicle article, we hear how CBT is an effective treatment for any organic illness, including CFIDS. So which is it? I would be willing to try a CBT treatment regimen as outlined in the article, but in order for CBT to be taken seriously by the whole CFIDS community, the CBT promoters need to come clean. It is either a treatment for a primary psychiatric condition or it is a treatment for an organic illness that has co-existing psychological factors.

Some researchers might say this distinction does not matter in the final results, but I disagree. If it is believed that there is nothing wrong with the patient other than lazy learned behavior, then I doubt the "individually tailored" therapy will be of much benefit. Relapses due to over-exertion are no fun and may do more harm than good.

The answer is for CBT promoters to get off the fence and state whether they believe CFIDS is primarily psychiatric, and to outline how CBT can help, given their opinion for or against a psychiatric causation. Every therapist is entitled to his opinion, but I feel CFIDS patients would be in a better position to judge the potential efficacy of CBT if the promoters of CBT would be more up-front. This sort of candor would go a long way in sorting out the misconceptions concerning this possible treatment.
Simon Franklin, Pittsburgh, Pa.

Don't overstress physical cause
I've had this disease since I was a senior in high school 10 years ago. One of my main symptoms has been mental exhaustion and confusion, which has translated into a constant state of dissociation and depression. I've started taking St. John's Wort, and that's helping a lot. I feel happier, can think more clearly and feel more "grounded."

In my case, my physical illness has caused mental illness. And you know what? I don't feel embarrassed to admit it. There is still too much denigration and fear of mental illness, whether it's confusion and depression caused by CFIDS or a more clear-cut, classic example. Shouldn't we, as sufferers of this physically/mentally draining illness, be some of the first to erase that line of shame?

Many CFIDS sufferes are using alternative medical ideas, many of which focus on naturally healing the body's symptoms by using the head. I think it's important to encourage holistic healing for this all-encompassing disease. Please be careful to avoid stressing that this is a physical and not mental illness. It's both. The sooner we stop categorizing and fearing, the sooner we'll get closer to the truth of how the human being heals.
Liz Radford, Chicago, Ill.

Don't delay on name change
I am disturbed that you are recommending delaying changing the name until September 1999. On page 29 of the Nov./Dec. 1998 Chronicle, describing the last meeting of the Chronic Fatigue Syndrome Coordinating Committee (CFSCC), you write: "CFIDS Association Executive Director Kim Kenney suggested...that it is unfair for the U.S. to create a new name for this disease without input from people around the world, since the new name will likely have worldwide impact. She recommended that the international CFS/M.E. conference slated for Sept. 1999 in Belgium would be an excellent opportunity to develop a broad consensus about what the new name should be."

I am strongly opposed to waiting until September 1999 to change the name. We already have an international consensus. In the international ICD-10, CFS is indexed to "Other disorders of the brain/postviral fatigue syndrome or benign myalgic encephalomyelitis." However, the U.S. has not adopted the ICD-10.

I am beginning to question your commitment to fight for CFIDS patients' rights. I sincerely hope you will reconsider your recommendation to delay changing the name.
Tawna Wilsey, Broomfield, Colo.
Editor's note: It is our hope that building an international consensus will speed up the name change process, not delay it. If we do not involve the international community now, efforts to change the name are more likely to fail, as the name CFS is gaining favor internationally.

Focus on phases for new name
I appreciate The CFIDS Association of America's recent success in exposing the misspending of the precious few CFIDS research dollars. I also want to encourage a stronger stand on the name change issue. It has been too long with no change. I am ready to live with another name for the next 10 years, as Dr. Komaroff cautioned, as long as the words chronic, fatigue and syndrome are not in that name. There was no caution when the original baptism occurred in the early 1980s, so a little risk-taking is OK now.

What concerns me now is that I thought there was discussion among medical folks of phases of the disease and possible regrouping based on symptoms and phases that might suggest better names altogether. Is this still being discussed? So much overlap is found among CFIDS, fibromyalgia and Gulf War syndrome that the original criteria for the separate groups may not be correct. There may be five or six diseases out there.

It's time for an update of that long-ago study that identified the most basic regrouping: some who get really better over time, some who get pretty close, and some who get worse or never get better. Surely more data are collected now on these very basic questions.
Sarah LaBelle, Oak Park, Ill.

It's "doctor abuse," not domestic abuse
I gasped as I read the "Domestic abuse a concern" comments in the Nov./Dec. 1998 Chronicle (page 27).

I will no longer see a doctor without a family member going with me, but it has nothing to do with domestic violence. I find that having my husband along helps in that he can remember things I forget to tell the doctor and the specifics that the doctor might tell me. I find that it also validates what I tell the doctor; so often doctors have questioned my motives and sanity when I discuss my illness with them. But, the main reason that my husband accompanies me, is to spare me from "doctor abuse." I have been berated, accused, fondled, propositioned and threatened. I've been called neurotic, psychotic, lazy, a bawl-baby, selfish, self-centered and self-absorbed, and told I have an unusual (implied: sexual) attraction for doctors. Ha!

I find that good doctors are rarely aware that this situation exists. I don't want to dismiss domestic abuse, but I hope that these good doctors will realize that not every doctor approaches patients with the same concern and respect as they do, and some patients no longer feel safe in the company of a doctor.
Via South, Pittsburgh, Pa.