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LYNDONVILLE NEWS
January 1999
Volume 1
Issue 1
David S. Bell, MD FAAP
Jean Pollard, AS
Mary Robinson, MS Ed.
(email: CFS-DSBELL@juno.com)
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Welcome to the first issue of our new newsletter, Lyndonville News. In this
newsletter we hope to reach out to the many families dealing with CFS in the
world today. Dr. David S. Bell has been working with patients with CFS
since 1985 when a cluster appeared in the small town of Lyndonville, NY,
where he had a small family practice. He has devoted his life to finding
the cause and the cure to this insidious illness, as well as making life
more bearable for those who live with it. I am Mary Robinson, and I look
forward to joining Dr. Bell and Jean Pollard in this newest endeavor.
Every other month this newsletter will include columns by each of the above
authors. It will also include a Questions & Answers section for subscribers
to write in with questions that they would like one of the writers to
address. We are also excited to offer a section where we can throw out a
question to you, the subscribers, about your experiences with this illness
and we will report our findings in future issues.
AN INTRODUCTION
by David Bell
First of all, let me say that this whole newsletter idea was Mary's fault.
And Jean didn't help. Who says that only people with CFS don't have a life?
For many people with CFS, day after day passes without change. It is like a
death in the family. The diagnosis is made, arrangements are made, people
are kind and then, one at a time, they silently leave, always with good
intentions of returning, but they seldom do. A gulf opens between a person
with CFS and friends, a gulf of confusion, doubt, separate interests, and
the bridges needed to cross that gulf become more and more difficult to
maintain.
CFS is an invisible illness. It cannot be seen by physicians, friends and
sometimes even family. Sometimes even the person who experiences it cannot
see it, particularly if it takes on a mild form. But lives are changed by
it, and the changes cause great sadness. Your uncle sees you at Thanksgiving
dinner and comments about how well you look. What can you say? After a while
it is best to say nothing - after all, your uncle meant no harm with the
comment even though you may have heard an implication that there really was
nothing wrong.
And the years go by. Your doctor still cannot find any blood tests that show
anything that could be so wrong that prevents you from getting out of bed
for more than three hours a day. There used to be articles in the newspapers
about breakthroughs in the research on CFS, but now they are silent. For a
while the momentum was gaining with the increased research, activist patient
populations.... But things are very quiet now. For the first time I see a
new type of despair in the faces on my patients. We used to be so sure that
the cause and the reality of this illness would be obvious to the world so
soon. Now there is doubt.
Lyndonville is a tiny town in upstate New York. It is very beautiful, except
in the winter. The wind and the snow off the lake keep us indoors and cabin
fever sets in. I like to write, and always wanted to be a novelist.
Unfortunately, I am hopeless as a novelist. I do not understand plot
structure - that was what my writing teacher told me and he was quite
correct. I can write only about that which I know. I do not want to write
about myself because that is personal, I want to write about my patients.
Their life stories are far better than any fiction could be. But that is to
invade their privacy.
So there is a compromise. By writing about CFS I get to practice my writing
and write about my patients without invading their privacy. It also allows
me to try and communicate some of the things we have learned about CFS - the
little details, the treatments, the new advances in the medical literature,
the mistakes and dead ends, the areas of hope. It is my hope that this
newsletter may just become fun and useful for the readers as well.
And it was Mary's idea. She thought about all the work and thought that has
gone into CFS should provide enough material to keep people interested. And
to communicate experiences of how some persons with CFS have dealt with
certain problems. She talked with Jean and they decided to do it. After a
few minutes of thought I realized that I wanted to do it as well.
The format is informal. We are family up here in the countryside. We say
what we think should be said. That is the problem with the medical
literature. You can only write what has been proven, and to prove something
is very difficult and expensive. Some of what will be in the newsletter will
be proven - I will summarize articles in the medical literature. But much
will be opinion - I will say what I have learned and come to understand,
even if I cannot prove it. And time will tell if it is correct or not.
The medical establishment will not be pleased with these opinions, I will be
considered a "loose cannon". But should there not be some forum for opinions
and experience? But a word of caution, readers should not take a copy of
these ideas to their doctor, for it would do no good. If someone brought me
a newsletter about unpublished concepts on Rheumatoid arthritis, I would
probably think he was a nut.
I will not write about things I do not understand or have not thought about.
For example, certain types of homeopathic treatment may actually work for
CFS patients, but I have not studied them, and have no experience in the
area. So I will say nothing about them, and I apologize for my lack of
knowledge in this area. But hey, you have to study the areas that you feel
are the most important areas to study. The fact that I may have studied the
wrong things is a problem I often worry about. So my apologies to those
interested in areas I am not interested in, I mean no offense.
And if this is a complete waste of time, blame Mary and Jean. And don't
waste your money by subscribing. I plan to have fun writing what I write.
And just maybe it will help stimulate interest, and ideas.
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THE LYNDONVILLE JOURNAL
David S. Bell, MD
Definition of an Illness
Is there anything that could be considered typical chronic fatigue syndrome
(CFS)? This illness with its myriad of symptoms and variety of outcomes
seems to come in all sizes and shapes. If fatigue is the worst symptom we
call it CFS, but if muscle pain is the worst symptom we call it
fibromyalgia. Is there really a difference? The difficulty in answering this
question relates to the fundamental principles that underlie the illness,
not just the superficial symptoms.
And it is an important question. The diagnosis is difficult enough when the
symptoms are "typical", what about when they are somewhat unusual? Much is
said of the crushing fatigue, constant headaches, and difficulty thinking in
CFS. But some patients may not have these symptoms dominate their illness
and thus become confused as to diagnosis. Some even state that they do not
have "fatigue" as the most severe symptom. How could they have chronic
fatigue syndrome when fatigue is minor? Going further, what exactly are the
defining characteristics of this strange illness?
Fatigue is certainly among the most important characteristics of CFS, but
how do you define fatigue? The term "fatigue" is meaningless when it comes
to illness because it is a normal state. It is defined as recovery from
exertion, and that is exactly what does not happen in CFS. Whatever is the
symptom of fatigue in CFS is not a normal state. It is a very ambiguous
term. If someone says they have fatigue I do not know what they mean. The
fatigue of anemia is tiredness while climbing the stairs. The fatigue of
diabetes is tiredness that goes unrecognized until the sugar is corrected.
The fatigue of stress is a frazzled tiredness. The fatigue of CFS is unique
and very hard to define. The closest term I can come up with is "asthenia."
And, paradoxically, despite the confusion as to the term fatigue, it is not
the most severe symptom in most patients with CFS. This is particularly true
in children. But while it may not be the most severe symptom, it usually
dominates the pattern of other symptoms.
In 1987, our office did a questionnaire study on 100 patients diagnosed with
CFS, asking them to list the three most worrisome symptoms they experienced
in the order of decreasing severity. Only 49% of patients listed fatigue as
the most severe. Other candidates were headache (13%), cognitive
difficulties (7%), muscle pain (7%), sore throat (6%), lymph node pain (5%),
abdominal pain (5%), joint pain (3%) and other symptoms (5%). Nearly all
patients listed fatigue among the top three symptoms. All patients had
activity limitation because of fatigue. Of those persons who do not list
fatigue in the list of symptoms it is usually because they forgot about it -
not even people with CFS always understand the fatigue.
So how can CFS be defined? Assuming the presence of a characteristic
physical exam, and no other illness obvious from blood testing, my list of
defining characteristics would be the following:
1) Characteristic symptom pattern (fatigue, headache, joint pain, muscle
pain, abdominal pain, cognitive difficulties, sensitivities, sore throat,
lymph node pain, etc.)
2) Activity limitation
3) Orthostatic intolerance
4) Chronicity
5) Symptom fluctuation and the presence of relapses and remissions
The pattern of symptoms is well known to those familiar with CFS, and I will
not go into them here. For me, the most important diagnostic feature of this
illness is the activity limitation. The patient with CFS is not able to do a
normal amount of activity in a day because of "fatigue", whatever that is.
It could be described as weakness, or sleepiness, or rubbery muscles or
brain fog, or tiredness, but it limits the degree of overall activities. The
other symptoms may be present but are not limiting the activity. For
example, it is not the joint pain which prevents the CFS patient from
activity, it is the fatigue.
And what is normal activity? In another study our office did with the help
of friends in the CFIDS community, we asked healthy persons what they did in
a normal day. All persons who considered themselves entirely well had at
least 12 hours a day of upright activity. In other words they were "up and
around" for half of the day, either work or some other activity. Patients
with CFS have a limitation of this activity. Mild cases can only be "up and
around" for 10 hours a day. This is a limitation because they used to be up
and around from 7AM till 10PM, or 15 hours a day. Severe cases are "up and
around" for 1 hour a day and that only with rest periods.
The next most important factor is orthostatic intolerance. This aspect of
CFS was unknown to me until meeting with Dr. David Streeten, but now I see
it as an essential for the diagnosis. Essentially orthostatic intolerance
means that all symptoms are worse on being in the upright position. Walking,
standing and even sitting are all upright activities. When lying down, most
persons with CFS feel better, despite being bored out of their minds.
The chronicity of the symptoms is an equally important feature. Of the many
patients I have seen, only a handful can say that they have a single day in
the past year where they felt entirely well. Many persons say they have
"good days", but they define a good day not by being well but by being
improved over the average days. More severe patients may not even have
single hours during the past year where they felt entirely well. The day to
day persistence of the "sick" feeling is essential to the diagnosis.
And lastly I would emphasize the symptom severity fluctuation along with the
variation of the worst symptom. The activity fluctuation may go from two
hours a day in one month to four or five hours in another. But during this
time different symptoms take the lead in being the most troublesome. Severe
headaches for three weeks, followed by muscle pain for the next three. A
month later the sore throat is there every day, and another month later the
irritable bowel is acting up. Overall, all the symptoms seem to hang around,
but they take turns leading the pack. It is the overall pattern of these
symptoms that is important in making the diagnosis, not the most prominent
symptom on a given day.
This is the reason the list of symptoms in CFS is different from one
researcher to another. If you ask about the symptoms on January 1st, they
may seem different than if you ask on July 1st. The pattern is the same,
always dominated by the "sick" feeling that is so impossible to describe.
Taken together this combination of characteristics defines the illness we
are calling CFS. The symptom pattern alone is insufficient for diagnosis,
but combined with a typical physician examination and blood tests, and the
pattern of illness persistence over time, the diagnosis becomes clear.
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FROM JEAN'S DESK
Jean Pollard
I am one of three individuals who will be helping to put this newsletter
together. I am going to give you a little background for those of you who do
not know me. When the idea of this newsletter was introduced, I was asked to
write an article for the initial printing. I was unable to come up with
something to write about, so I went into my basement where I have stored
long-forgotten information about Chronic Fatigue Syndrome and started to
sort through it. I was flooded with both good feelings and bad. I realized
that I have been at this for a very long time.... since 1985. That's a long
time, especially when I thought this dreaded disease would be cured in about
2-3 weeks time.... two months tops. Weeks turned into months, which have
turned into years----13 1/2 years.
Anyway, I looked through the piles connecting my life to Chronic Fatigue
Syndrome. I started out as Dr. Bell's secretary in 1980, became the office
manager a few years later, and editor of Dr. Bell's first book on CFS,
called, "A Disease of A Thousand Names". In 1985, my life would never be the
same. The relationship rose to a higher level by becoming an assistant
researcher for this wonderful man. My commitment to a cure or treatment for
this illness only grows stronger every year. In 1985, my four children
became ill with CFS and this would hurl our lives into the "lime light" of
national and international attention, TV and radio interviews, magazine and
newspaper articles, and the constant reminder of an ugly illness that needs
to be eradicated. Even though my daughters are doing quite well at the
present time, they still have ups and downs directly related to CFS. And
even though my children are not suffering like they used to, my attention is
still for the many, many people (children and adults) who are not as lucky.
My foremost efforts related to Chronic Fatigue Syndrome these days exist as
I answer the phone in our office every day and talk with patients or family
members of ill patients who need someone to talk to. What I find most
people need is HOPE and knowing that someone really cares about their
situation. You must hold on to the thread of hope that this illness will be
cured, that treatments will be found, and that a prevention will exist for
the future. I am confident that this will happen because I have been
watching the dedication and commitment by physicians such as Dr. Bell, and
the CFS community that has never failed. I have seen the growth of physician
awareness and involvement, patient awareness, support groups, fundraisers,
treatment protocols, research projects, available monies, government
intervention, and international involvement. I have been personally involved
in each of these. This WILL happen!
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THE PARENT'S CORNER
Mary Robinson
As a parent of 2 children with CFS I have learned many things about coping
and living with this illness when it invades your family. My husband and I
are learning to balance the daily tasks of parenting our children with CFS,
and our daughter who is not stricken with the illness. I have learned to
work with the schools to secure the best academic program available, be it
slight modifications with the teacher, to a formal 504 plan or special
education services under the "Other Health Impaired" category of IDEA.
(These are services offered in the USA.) Along with assisting Dr. Bell in
several studies on children with CFS, I have served as a family CFS support
group leader and have counseled families on the phone about their children's
family and educational needs. I find support in my own parenting from
sharing with, and learning from, other parents in this difficult situation.
I hope that in the months ahead you will find ideas in The Parent's Corner
that make the task of parenting your children with CFS a little easier.
In trying to decide how to approach this column I felt a basic statement of
our philosophy might be in order. When my son first began showing signs of
CFS I didn't know what to do. Along with the many medical questions and
school issues that came to mind there was also the question of how to handle
his activity. Should we limit what he was allowed to do when he felt well?
Should we enforce a set activity limitation to try to ward off the bad
spells that usually followed overexertion? We didn't know what to do, so we
turned to Dr. Bell for his opinions. He encouraged us to treat our son as
normally as possible. If he didn't feel well, then treat the symptoms and
offer emotional support. But on the days that he felt he could tolerate
more vigorous activities, he suggested that we encourage him to do so. We
have learned that by forcing limitations on our children, we only got
resentment in return. When we have encouraged them to monitor their own
activity levels, and to take breaks when "they" feel the need, we have found
much more success. Over the years our children have learned when to limit
what they are doing, so as not to have to deal with the "paybacks" later on.
But there are also days, that they do overextend themselves and often the
payback is a very unpleasant spell. Whatever the decision, we encourage
them to make it on their own, with our support. They are the ones that have
to learn to listen to their bodies, and experience is the best teacher. My
children have learned to take more frequent rest breaks during sports, to
turn down invitations to outings they know they could not tolerate, and to
also partake in other things that are worth the price they may have to pay
later on.
When I have discussed this approach to activity with my son and daughter
they have both said that they do not want us imposing limitations on them.
When we have done this it made them feel worse than they already did. My
daughter once told me that while she is feeling good it is like she doesn't
have CFS. She is able to just be a normal kid for a while, and she needs
that time, even if it is only a few hours. My son agreed that it is hard
enough to have to give up the time to illness when the symptoms flair up,
but he would not want to limit his activity too much and miss out on those
rare opportunities when he is feeling well, to just be a kid.
Do not misunderstand me on this issue. We do not take a totally backseat
approach. If we feel that one of our children is setting themselves up for
a setback, we gently remind them what may happen if they engage in the
planned activity. We suggest ways that they can keep their plans without
overdoing it. However, in the end, we all know that this is their decision
to make, and we support them in whatever they decide.
As a parent this has been one of the hardest things to do. To just stand
back and watch my children race around and be so active knowing how they are
going to feel as a result. However, this attitude has helped them to dispel
the invalid mindset that some people with this illness can develop. It
offers them a perspective on their life that has more hope and less
disruption.
Another issue that is very difficult to undertake is the issue of school.
Some children have been able to stay in school for full days with a few
modifications, while others have required home tutoring, or chosen to
homeschool, as leaving the house is not possible due to the severity of
their symptoms. The various options that parents have chosen will be
discussed in more detail in future issues of this newsletter.
Dr. Bell encourages attendance at school whenever possible in an attempt to
minimize the disruption of the normal social development of the growing
child and adolescent. For this reason, we have always encouraged our
children to attend whatever amount of school they could tolerate without
setbacks. It may be a 40-minute Science class at the Intermediate level, or
a 30-minute snack break and teacher read aloud at the elementary level. But
at least it gets my children into school to be with their peers. I asked my
son, who is now in the 9th grade and in remission from most symptoms, how he
felt about the choices we made for him in relation to school. He remembers
the times he made it to school. He said that while he knows he was
homebound for months at a time, his memories are of the days that he did
manage to get to school to be with his friends. By touching base, when he
was able, a little bit every day he was able to minimize the social
disruption of feeling like a total outsider. When he began to tolerate near
normal activity after years of very limited social activity, he went through
the developmental levels very rapidly. As a 14 year old he made friends
with boys several years younger than he and rapidly grew out of these
friendships until he was most comfortable with others his own age. It was
fascinating for my husband and I to watch, as he fast forwarded through 4
years of socializing- the giggles, to the sports, to the time just visiting
with friends, in 4 short months. He picked up where he had left off when
CFS struck, and ended with where he would have been had CFS not invaded his
childhood.
I hope that you find the information shared in this column and newsletter
helpful in your role as parent to your child with CFS. May you find hope
for your child's future and information to make each day a little easier to
wake up to. You are not alone in your struggles. Many have faced and
continue to face the same challenges and have learned how to cope. I
encourage you to share your parenting experiences and things that you would
like to see addressed in this forum.
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Q & A FORUM:
Every month we will answer at least one question posed to us by our
subscribers. Please feel free to ask us what is on your mind, about Dr.
Bell's opinion, about an issue with children or parenting, education or
about CFS in general. Please limit your question to a couple of sentences.
We will not be able to answer every question, but will do our best to answer
all that we can.
Please send your questions to us at CFS-DSBELL@juno.com
Question of the month:
***I have a 13-year-old boy with limited activity and a great deal of back
pain. Have you found that exercise or physical therapy can help this
condition?********
Answer: This is a very individual situation. For some people
exercising can be of great benefit, while for others, it can cause them to
melt into relapses. Our recommendation is to encourage as much activity as
can be tolerated. If your son enjoys basketball, maybe you can encourage
him to throw a few balls with you. He may be able to throw 2-3 baskets, or
play for 5-10 minutes. If he can tolerate a small amount of play without a
setback, encourage him to try a bit more. Any activity is encouraged, if
your child enjoys it and if it gets him up and moving around. Walking,
sports where breaks can be taken frequently, shopping, swimming are all
examples of activities that have been tolerated by "some" children with CFS.
There are people who have found some benefits from gentle physical therapy
or massage. A massage technique known as myofacial release has been
beneficial to some with fibromyalgia pain. The person giving the treatment
must be trained in the technique. Some have been fortunate enough to find a
Physical Therapist who has this training and were able to have the
treatments covered by their insurance. Others have found simple range of
motion exercises helpful to keeping the joints limber.
The most important consideration is finding a person who understands CFS/FM.
They need to be willing to listen to your child on what is good and what is
hurting them. They need to understand that the problems that your child is
having are not due to deconditioning but to the nature of the illness. If
you are fortunate to find someone knowledgeable about CFS/FM and willing to
listen and work with you, this may be another route to getting a little
exercise.
As we stated at the beginning, the tolerance of these treatments varies from
individual to individual. But we have found success in encouraging activity
within the bounds of reason.
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OUR QUESTION FOR YOU:
We are interested in hearing about women with CFS who have become pregnant
and given birth. Was there anything unusual about your pregnancy or birth?
How was your health during the pregnancy and postpartum?
Please send your answers to us at CFS-DSBELL@juno.com
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PREPUBLICATION ANNOUNCEMENT: A Parent's Guide To CFIDS: How to Be an
Advocate for Your Child with Chronic Fatigue Immune Dysfunction Syndrome by
David S. Bell, Mary Z. Robinson, Jean Pollard, Tom Robinson, Bonnie Floyd.
This book is slated for release to the public in March 1999. For
information on purchasing this book please contact the publisher: The
Haworth Press, Inc. at 1-800-429-6784, or by email at:
getinfo@haworthpressinc.com, or their website at www.haworthpressinc.com.
***********************************************************************
NEXT ISSUE:
The Lyndonville Journal: Multiple Sclerosis and Chronic Fatigue Syndrome
From Jean's Desk: What We Do
The Parent's Corner: Keeping Your Child And Yourself From Becoming Isolated-
Encouraging Social Contacts
Q & A Forum
Our Question for You:
***********************************************************************
Disclaimer: The views in this newsletter are the feelings and opinions of
the individual authors and do not necessarily reflect all of the current
theories that are being explored and published relating to CFS. If you have
specific questions and concerns you should consult your personal physician
for the answers.
***********************************************************************
COPYRIGHT NOTICE: The entire contents of this newsletter are copyrighted to
Bell, Pollard & Robinson, 1999. For permission to reprint this newsletter
in
whole or part please direct your request to the above authors at
CFS-DSBELL@juno.com
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SUBSCRIPTION INFORMATION: This newsletter will consist of 6 issues a year.
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In order to continue your subscription beyond the trial issue send a check
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Lyndonville News
Lyndonville Family Health Center
77 South Main Street
Lyndonville, New York, 14098
Be sure to include your name, address, and email address where we can email
you your subscription.
Copyright Bell Pollard Robinson 1999
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