From Jean's Desk:

Sympathetic Doctors Do Not Affect Long Term Illness Outcome

By Jean Pollard

Published in Lyndonville News, May 2001

We are very proud in our office regarding the paper written by Dr. Bell, Dr. Karen Jordan, and our own, Mary Robinson that was recently published in the Journal of Pediatrics. This paper took a while to prepare for publication. It has to do with a 13-year-old follow study of the original group of children that contracted Chronic Fatigue Syndrome in the Lyndonville area. I have a personal interest in this paper for two reasons. The first is that my four daughters were in the original outbreak in Lyndonville and this paper reflects their onset symptoms and their outcome. Of course, they are not identified by name, but they are four of the patients reported upon. The second interest comes from the fact that I spent many hours personally helping to prepare the paper. A tremendous amount of work, research and statistical analysis goes into writing one of these publications.

One area of the study that we found validating was the issue of sympathetic vs. non-sympathetic doctors. It has been said in a paper written by Barsky, AJ and Borus, JF, published in the Annals of Internal Medicine (whom I non-lovingly refer to as Bevis and Butthead) that compassionate or sympathetic doctors wind up encouraging children with CFS to develop even more symptoms of the illness. They feel these doctors may unwittingly encourage them to express more exaggerated symptoms. Who are these people, anyway?? I have never heard of them. Are they CFS researchers? Are they pediatricians? Have they ever even seen a CFS patient? Anyone with an ounce of intelligence that works on a day-to-day basis with patients ill with the symptoms of CFS could NEVER say that being a sympathetic doctor is harmful to these ill children.

Using my own family as an example I can say this is definitely not the case. Dr. David Bell was a very good clinician and diagnostician in the beginning of the girls' illnesses. It began in 1985 (November) and he put them through every test imaginable. They had stool cultures, blood cultures, lymph biopsies (thanks to the CDC, also thanks for nothing), experimental medications, IV antibiotics; you name it, and they did it. When nothing revealed a cause for this illness, he never, ever suggested that they were faking or malingering. He also believed them, because he trusted them and trusted our family to be honest about the degree and severity of their pain and suffering. I won’t say he never wanted to throw up his hands and rip his hair out. That he did on several occasions, but he never stopped believing in them. He always took them seriously and listened to them...at great length sometimes. And he listened to me. He helped us through this difficult period by being compassionate and sympathetic to what our family was going through.

I have said this on many occasions in public, in private and in my columns...because of his belief and caring, my children were able to cope with their illness. They coped with their symptoms, which were so severe on some days they could not even get out of bed, and they coped with their occasional despair at their continual relapses and remissions. Coping. Coping. Coping. You hear it over and over. But you never really understand the mechanism until you have had to do it. You rearrange your life, your children’s lives, your home life, your social schedule, your school schedule, your belief in the “system.” That “system” is the government, the medical community, the school community and the social community. The government has done very little, but we cope with it. The medical community has done very little, but we cope with it. The school community has done very little, but we cope with it. And even the social community, probably does not truly believe in CFS, unless of course, someone in their family has it. But...we cope with it.

Coping is a very funny thing. It is so individualized. What works for one family, does not necessarily work for another. The dynamics are too complicated. As in CFS, not one system works for all. As Dr. Bell's office manger I cannot even begin to explain to you the heartbreaking phone calls I get every single day. They come from families that are desperate for help in solving some of the family situations that surround CFS. And the most heartbreaking of all is when the person on the other end of the phone is crying, truly crying, with exasperation because their doctor does not believe them. Yes, it is difficult when the school is on your back and badgering you because your child has not attended class....but to have your own doctor look at you as if you need to be committed because you believe your child is sick. It is like a knife going right through your heart. And these doctors are out there, many of them, who do not believe in CFS and will not diagnose it. They are truly the unsympathetic doctors who believe that by diagnosing CFS it will become a self-fulfilling prophecy by where the child will act sick because the physician expects it.

It is so hard to listen to these parents when they call. I know what they are going through to a degree, because I too have been there. The doctors, the school and their own families do not believe them, do not believe their child. They love their child and no one understands that they are really sick. They feel their heart is breaking. Because isn’t that where your love is for your child? In your heart? You have had wonderful and great expectations for your “baby,” your child, your adolescent. Then suddenly, usually without warning, this precious life is lying on the couch, not getting out of bed, barely capable of functioning on their own. This child who played baseball, soccer, enjoyed rollerblading, skiing, dance lessons, ripping and tearing through the house, going to school, maintaining a fairly good average is suddenly bedridden. They go to the doctor (the unconcerned ones, of course) who say, “Oh, they just don’t want to go to school.” Needless to say, as you look back on their medical history, you usually see a pattern of frequent infections, fevers, flu-like or mono-like illness prior to the onset of this terrible, overwhelming fatigue. And the doctor stands there and says, “Oh well, must be in their head...or yours.”

For those of you who do not have a doctor like that, please get down on your knees and thank God that you are one of the lucky ones. Because, believe it or not, those doctors exist. Every day, I hear about them. I am wondering what part of the Hippocratic Oath they either mumbled or left out. “I will do no harm.” Is that the phrase forgotten?

Well, back to my children. They are part of the success story, thank God. Unfortunately, I never, believe the last chapter has been written in our book of life with CFS. Even though they are managing on a day to day basis, I am always concerned about relapses. I am scared. Because even though they are doing wonderfully compared to the thousands of children who are not, I worry. Hey, I am a mother and grandmother, and I have that right. We have entered into the next generation. The last of the four will be married by this summer. I have two grandchildren and another on the way. Our oldest daughter had a milder case of CFS with a ruptured appendix at the onset, asthma, and neurally mediated hypotension. Her family is good but has some allergies. Our youngest daughter who truly suffered the most with symptoms of severe abdominal pain (hospitalized 10 times with ? appendix), headaches, fatigue of course, is doing great and has one child. This baby 1 1/2 years old is the healthiest kid on earth and is never really sick. Our two middle daughters, twins, are doing fairly well. They have occasional days of not feeling well with CFS symptoms, but it has not interfered with their lifestyle at all. In fact, they have the busiest social schedule of any sisters ever known to mankind. I can’t keep up. I write these notes because I am asked every day, “How are your children doing?” My response is, “They are coping well but have some symptoms occasionally which they are able to handle and they have made a wonderful life for themselves.” What more could a mother ask for?

Does having a compassionate, sympathetic doctor help? You bet it does! Can a doctor make the difference between a child who constantly has self-doubt and questions his own mental stability, to a child who believes in himself that he is truly sick? You bet, and even though the answers are not there for instant recovery, the child knows that someone cares and believes in him and his illness. Someone is there to listen and to trust that the answers the child gives are true. This empathy can make all the difference in the world. I have seen it for myself over the past 15 years in our practice. A family will travel 800 miles to see Dr. Bell, have their evaluation, and the face of that child changes! It changes from the time they walk into our office to the time they leave, because someone believed them. They have been validated. They are not crazy or school phobic. They are truly sick with some bizarre illness that may or may not go right away, but they are willing to stick it out until the answers are found. Treatments are tried. They may fail but they are tried. Hope is given to a young person who was about to give up and we were there to care and give support. It is sort of like a diagnosis of cancer in that we cannot always change the outcome, although we try, but we certainly can give emotional support, medical support and take on the school issues and the doctors who are not listening. Again, DOCTORS, you better start listening. Ignore Bevis and Butthead. A sympathetic doctor may make the difference between a child who believes in himself and the child who just gives up.

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