Parkhurst bombarded with "cures"
I am sorry that Jo Imlay (Sept./Oct.
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.
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.
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
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.
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.
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.
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,
Judy Kruger, Collingswood, N.J.
CBT researchers need to state beliefs
I was very interested to read the recent
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,
Don't delay on name change
I am disturbed that you are recommending delaying
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
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
Focus on phases for new name
I appreciate The CFIDS Association of America's
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.
LaBelle, Oak Park, Ill.
It's "doctor abuse," not domestic abuse
I gasped as I read the "Domestic abuse
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,
More concern about abuse label
Reading the highlights from Cambridge, Mass.,
in the Nov./Dec.
1998 issue brought tears to my eyes. Finally the government and medical people are listening. It is so
frustrating to see the symptoms destroying my family and not know what to do about it.
I have an objection to the comments about domestic abuse. I go into the doctor's office with my husband,
a PWC, because he doesn't share all his problems. He is so disgusted and feels it won't do any good. He
ignores or makes light of how much our lifestyle has changed.
Lin Castaldo, Garwood, N.J.
Dauble, executive director of Share, Care and Prayer, proposed Randolph's Syndrome (rather than environmental
illness) as a new name for CFS at the Boston AACFS conference. Dr. Theron G. Randolph of Chicago, who
died in 1995 after a 60-year medical career, was known for listening to his patients and taking elaborate
patient histories. In his extensive publications, he argued that hidden allergies to foods and chemicals
were the cause of the complex of symptoms we call CFIDS today.