Editor’s Note: On October 23-24, 2000, the Chronic Fatigue Syndrome State of the Science Conference (CFS-SOS) was held in Rosslyn, Virginia. Donna Dean of the National Institutes of Health, organized the conference. What follows is a personal account of the conference by Meghan-Morgan Shannon, CFS sufferer.
The CFS State of the Science Conference (October 23-24, 2000, Rosslyn, Virginia) was a huge step forward for the scientists and researchers because there were many “non-CFS/ME” doctors there. I get the feeling we as patients are going to have to wait for the perks from this. If this meeting had taken place 10-15 years ago, we would be in a better position.
All of the non-ME/CFS doctors were working under the constraint that this was an SOS meeting on ME/CFS. In that sense it was frustrating as certain things, such as “fatigue is the UNIQUE hallmark of ME/CFS”, were repeated. I wanted to stand up and say, ‘no, this is not unique to us’.
It was clear to those who put the conference on and the known ME/CFS doctors that there is a large body of information already out there which can be applied to the ME/CFS patient population. I believe Dr. Dean (Donna Dean, Ph.D, of the National Institutes of Health) made this statement in the SOS and in CFSCC several times. Some other doctors said… that this SOS meeting has opened the eyes of all researchers and clinicians in this respect, meaning that research on the brain and endocrine systems, and all others systems that were presented, could be used to help in the understanding and treatment of ME/CFIDS/CFS.
What I saw in the meeting was the coming together of different disciplines to help demystify this disease. I was impressed with many presentations, Dr. Bell was great in his opening speech: “The medical community is responsible for the confusion of this disease and the patients are the heroes”. Dr. Bell also stepped in on the discussion of abuse as being the cause of this disease. He found this not to be true.
Dr. Roseanne Armitage, University of Texas, Dallas, spoke about the problems concerning the use of psychotropic drugs and the interruption of sleep. She named trycyclics as major offenders that cause sleep disturbance and then go on to cause problems in the brain and immune system such as waking up more often, movement in sleep, etc. She spoke about other psychotropic drugs and said that all need to be looked at carefully because all interfere with the deep sleep and the length of time you go into the sleep that is needed for the support of the immune system and neurological system.
Dr. Freeman from Beth Israel spoke on Orthostatic Intolerance and NMH. He was great and actually supports Dr. Peter Rowe’s research with Pediatric population.
The section on Fatigue, Functional Status and Disability, with Dr. Buchwald and Krupp, Tryon and Passik, was the most boring and frustrating section in the conference. To have this section on Fatigue in the afternoon after so much science had been presented, seemed to be useless in my opinion. I also noticed that most of the researchers and clinicians left the conference. Maybe those who left early saw it as useless and decided to skip out on it. As I said the other researchers and presenter’s took the seriousness of this disease to heart and showed that there is much more to this disease then fatigue. They were also much more professional in their presentations.
Editor’s Note: This article is adapted from the report of Meghan-Morgan Shannon and is used with permission