The Parent's Corner

The Seattle AACFS Conference - My Perspective

by Mary Robinson, MS Ed

Published in Lyndonville News, January 2001

The last week in January 2001 I had the distinct pleasure of traveling to Seattle, Washington for the 5th American Association for Chronic Fatigue Syndrome (AACFS) Conference. It was my second International AACFS Conference and it was enjoyable as well as informative. I am the healthy parent in our group, who can be a voice for the kids and the families in our studies. I have come in contact with dozens and dozens of families through my association with Dr. Bell and many have become good friends. We talk about parenting issues, school issues, and how to decide how to move ahead in getting good medical care. I love my job! The pay is in the thanks I get from the parents who realize they are not alone. It is in the invitation to be a part of another study, or to offer my feedback on a new idea for our CFS research. It is in having my opinion valued by those in the CFS practice, and my time needed and appreciated. I love everyone in the Lyndonville Office. They help keep me sane when everything in my life is insane. My role is to take the support that they so freely give to me and pass it on to as many parents as I can. I do this by emailing dozens of parents who contact me and by editing and writing for the Lyndonville News and sharing my experiences and those of others in this column A Parent's Corner.

As Jean told you in her column, we all sort of have our "tasks" at the conference. My role in the CFS clinic in Lyndonville is one many would love to have. I get to give back to Dr. Bell for all he gives to me and to my family. And as a volunteer I am able to put my family first and do most of the work out of my home. Dr. Bell has asked me to be a part of some pretty exciting studies. My favorite was our long-term follow up study that he presented at the conference in Seattle. I actually did much of the legwork on the study and found it fascinating to be a part of developing and implementing such an important project. It was a challenge to track down the young people who had moved to the 4 corners of the earth. The phone consults and collection of the data was informative in many ways. But the most exciting and rewarding tasks were interpreting the data and writing the paper with Dr. Bell, which is soon to appear in Pediatrics. I found the entire process rewarding. And being in Seattle to hear Dr. Bell present our data and our findings was a real high. And equally as exciting was to hear Dr. Katherine Rowe present her data of 2 similar follow up studies. Her data held up practically the same outcome that we had found in our study.

In our FOLLOW UP STUDY done 13 years after illness onset, 35 of the original 46 patients agreed to be a part of our study. Of those 35 patients, 37.1% considered themselves resolved of illness while 42.9% felt they were well, though still exhibiting some symptoms. That means that 80% of those studied felt satisfied with their lives and while experiencing mild to moderate problems did not let it interfere with moving on. They have rewarding lives with good jobs and many are married and have children.

A 7-YEAR FOLLOWUP STUDY was Dr. Rowe's first study she presented. It was a followup of 58 of the original 89 young people in her gammaglobulin trial. Her results found that 75% of the participants were working or studying full time or caring for children full time. I found it interesting that her rate of recovery was so similar to ours, which noted no special course of treatments.

THE SECOND FOLLOWUP STUDY that Dr. Rowe presented was of 200 young people with CFS (1-10 years after onset). Her results were very similar to ours, but with a much larger sample. She found that 30% of those questioned felt they were well with another 60% able to function in fulltime (or more than 1/2 time) study or work. Her conclusion stated: "The average duration of illness was 3-4 years and early diagnosis and implementation of management strategies, particularly assistance with flexible arrangements for school, eased many of the burdens of chronic illness."

So if hope is what I was seeking, hope is what I found. To be a part of a study that can give hope to families is in itself a reward. To hear others with similar findings is exhilarating! Hope that for our children, CFS is not always a Forever Diagnosis. Kids do recover, kids do adapt, kids do move on.

At the conference my main interest for attending was twofold. As a parent of a child with CFS, I was of course interested in any thing that may help my daughter. But equally as intriguing was any research that I may be able to share with you, the parents who read this column. I was interested in areas we, as parents, could share with the schools to help explain the cognitive problems with the illness, and in treatments that you have written asking me about. The sessions can quickly put me on sensory overload with all the information being presented and much of it in very technical terms. So I tried to key in on some panels I really wanted to attend to, so I could try to be as "sharp" as I could for those talks.

"THE BRAIN AND CFS" was the first series of panels that truly was of interest to me during the Research Conference on Sat. and was a part of 5 presentations. The first study presented by Roderick Mahurin, PHD was entitled "Brain Correlates of Cognitive Effort in Chronic Fatigue Syndrome and Healthy Control Subjects." The bottom line of this study was to see how much brain activity could be measured, or seen in CFS patients vs. healthy controls when doing tasks that require a great deal of mental effort. The researchers related brain activation with task performance and perceived effort. 60% of CFS patients report concentration and memory problems and neuropsychological tests are used to evaluate these problems. They also noted that mental fatigue is very hard to pin down and the more effort it takes to do something, the more fatigue will be felt. The researchers studied patients and controls using a paced auditory serial addition test (PASAT). Then they did scans of the brain during rest and during the tests. What they found was that while the two groups did similar as far as performance on the testing, the CFS group put forth much greater effort as evidenced by the SPECT scans. The CFS patients' brains were lit up everywhere showing increased blood flow throughout the brain, as they attempted to pull in help from wherever they could in the brain to answer the questions. The feeling of the researcher was that the patient reported experience of having to work much harder than normal to do a mental task was reinforced by the increase in brain activation during such mental efforts.

As a parent I have often tried to explain that even though my child is doing "OK" in school, the effort they are putting forth is 10 times that of the other students. This presentation not only affirmed this feeling I had, but gives me a tool to try to explain this to the personnel at school. It has been my personal experience with my school district that the folks responsible for helping us out are genuinely interested in what is going on. They are thirsty for explanations of this illness to try to help them to understand what is going on, so that they can better set up a suitable educational environment for my child.

Short-term memory is a known problem in CFS. I have heard it explained that there is a storage problem in the brain where the person stores the information and then can not find the pathway needed to retrieve it. It is advised that children learn information with a variety of their senses at play. Reading a passage in a book while a tutor or a tape reads it to them makes 2 memory pathways to the retrieval of this information. It is taken in by listening (auditorially) and by seeing it (visually). If the child follows the text with their finger it is also stored in a 3rd way from the tactile experience of touching it with the finger. The more ways a person can use to take in and store the information, the better chance they can retrieve it when needed. In the presentation I saw, it appeared that this is exactly what was happening in the brain scans of those CFS patients. They were searching in many areas to find at least one pathway to answer the problem posed.

PAIN IN FIBROMYALGIA was another study that I found interesting which measured the amount of pain felt by fibromyalgia patients as compared to controls on touch and thermal levels. The results showed that the FM patients did indeed feel more pain than the controls to less pressure. They also were equally more sensitive to pain felt from touch and thermal conditions. It was concluded that when FM patients report that they feel more pain than controls in these situations, they really do as evidenced by this study.

In my opinion there was more of a thrust at this conference to deal with the organic nature of CFS and understanding the many idiosyncrasies of the illness and little if any talks on psychiatric issues. It was a comfort to see the emphasis center on various findings of abnormalities and also on treatments and methods of coping and less on the worn out debate of the illness' legitimacy as a real illness.

ALTERNATIVE THERAPIES (OR COMPLIMENTARY MEDICINE) seemed to be covered in several sessions over the three-day conference. I came away with a new respect for many of these methods and coupled with my daughter's personal experiences I am a bigger proponent of seeking help in a wider range of avenues. One speaker stated that one of their goals were twofold. To train the therapists to understand CFS as an illness and to better grasp the effects it has on the patient and also to try to educate the physicians who see these patients to make them realize how important and useful rehabilitation and therapy can be to their patients.

COGNITIVE BEHAVIOR THERAPY, OR CBT was another area they discussed. In the past it was my understanding that the goal of CBT was to cure patients by changing their way of thinking and to add needed structure to their life. I thought it was a mind over matter kind of approach where patients were encouraged to not listen to their bodies, but to use mental power to retrain their bodies to do more than they thought they could do. At the conference I learned that very specific CBT can be aimed at increasing activity. They address areas such as relaxation, stress management, sleep hygiene, cognitive issues, and behavior changes. The idea as I understood it was to learn to "listen" to your body, and get to know yourself better, and then pace and push yourself so that you could do all that you could manage within a certain activity window. 25% of those in the study showed sustained improvement in physical functioning over a 12-month followup period.

Other areas discussed were the art of SELF-HYPNOSIS, which has been found to be very effective for pain and stress management. PHYSICAL THERAPY can help problems with deconditioning and muscle pain. A good Physical Therapist who is well versed in CFS/FM can use techniques such as electrical stimulation, heat/cold therapies, and myofascial massage (as well as other forms of massage). Gentle stretching and strengthening exercises as well as many other techniques can be used to ease a patient's pain and ward off problems caused by deconditioning. Also mentioned were ACCUPRESSURE, ACUPUNCTURE, BIOFEEDBACK, AND NATUROPATHIC/ HOMEOPATHIC TREATMENTS. The message seemed to be to not be afraid of this complimentary medicine. To find someone who was willing to work with you and your illness to help bring comfort and make the patient's life more comfortable and in so doing more rewarding.

One point that was made in terms of exercise was a good one. One speaker said that with a healthy patient it is acceptable to have them push to do more. If they can do 10 minutes of exercise, then go for 15 next time. A speaker noted that in CFS this may lead to a setback. CFS/FM patients should be rewarded for sticking to the set amount of activity and not for doing more. They suggested 2 minutes of mild stretching be rewarded, not 2 planned minutes and then 4 more. It stressed increasing activity in small increments over time.

This was all fascinating to me as Megan is currently undergoing several of these alternative treatments with marked improvement. We found a wonderful PT practice that has several therapists with a variety of skills that benefit her. The myofascial massage is relaxing and helpful to ease the knotted up pains in her muscles. The gentle water therapy, done in the therapy pool, is helping her. The gentle stretching and strengthening are helping her to be more active. The electrical stimulation has helped more recently though initially it was met with mixed feelings, and another form of massage, which moves the negative energy out, was calming. (Note- home electrical stimulation machines are available for those that benefit and are covered by many insurance plans). One presenter said that with persistence some CFS patients have been successful having these alternative treatments covered.

Megan and I traveled 3 hours last week to learn the art of self-hypnosis from a pediatrician who is finding tremendous success with this art form and Megan immediately found she could reduce her pain levels by practicing this technique. The past week the success of the technique has had mixed success. We will see how it works over the long haul and report to you in future issues.

So for me, Seattle opened my mind a bit. Opened me up to consider new alternatives, new ideas, and new treatments. It introduced me to several parents who had unique ways to manage their children's educational needs, which will be reported in future issues. It reminded me that for all the doctors who are out there working against us, there were a lot in Seattle who were on our side, fighting and exploring ways to better understand the illness, the treatment options and the patients. For all of them I am eternally grateful.

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