David S. Bell, MD FAAP
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.
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 awhile 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
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.
THE LYNDONVILLE JOURNAL
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
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.)
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 were 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.
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!
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
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 home school, 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
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.
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.
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
The Lyndonville Journal: Multiple Sclerosis and Chronic Fatigue Syndrome
The Parent's Corner: Keeping Your Child And Yourself From Becoming Isolated-Encouraging Social Contacts
Q & A Forum
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Copyright Bell Pollard Robinson 1999