I've been putting off writing this because I am going to have to think rather than my usual stream of consciousness ramble. I am going from week old notes when I was brain fogged. You can actually see my handwriting deteriorate as the meeting went on. I am going to try to summarize accurately however I am not guaranteeing anything. This post is what I heard not necessarily what he meant. Please keep that in mind. I'm hoping that the video will get posted soon. There was a guy with a camera there but there isn't anything up on Mass CFIDS yet. So without further ado (anything in italics is my own commentary):
The talk was hinged around the study of the Lyndonville outbreak of the mid 80's. These are the people that dragged Dr. Bell into the thick of CFS and his trying to help them has made him the expert he is today. Dr. Bell has followed this cohort for 25 years now and this lecture discusses recovery from CFS.
How do you define normal? Is a person recovered when they have made adaptations so that they can participate in normal activities such as sleeping the day after a big event? Or is a person recovered when they have complete resolution of their symptoms and there is longer any signs of illness?
When he questioned his Lyndonville patients some would say they were fine but in reality they were making adaptations so that they could function. Using evaluation instruments it turned out they were often functioning at roughly 80% of normal.
After 13 years of the initial outbreak between 1983 and 1987, Dr. Bell found that 20% of the original cohort was still seriously ill, 40% were okay with modifications (adaptive behaviour) and 40% were fully recovered. (This is much better than what is usually quoted in the literature of a 25 % recovery rate.)
While Dr. Bell has spent most of his career telling patients that they aren't crazy or delusional, they are delusional about one thing. They have been told by so many people that they are "fine" or "you're a hypochondriac" so often that they start to believe it even if they are very ill. His patients are often in a state of denial about their own illness which he referred to as "health identity confusion". This occurs for the following reasons:
- They look normal
- Public perception is that CFS doesn't exist
- Many doctors don't believe it exists
- Lab tests come back normal
- Evaluation by specialists yield no diagnosis
Twenty five years after the initial outbreak occurred a series of evaluation instruments were used to determine the health of the Lyndonville cohort.
Instrument Control CFS Recovered CFS
SF 36 76-96 10-20
Activity Hrs 15.25 5.0 13.0
#of hours spent upright doing things (not TV)
Bell Ability Scale 100 30 85
McGill Pain 0.0 20.0 7.5
Pittsburgh Sleep 0.5 12.0 6.0
Fisk Fatigue 2.5 106 26
The control group was selected with great care with absolutely no history of any type of sleep disorder illness such as mono. I believe he mentioned that these patients have been/are being used by others such as WPI and NIH for CFS studies. I didn't write it into my notes and my memory is a bit patchy regarding the details of this. Apparently I also missed the numbers for the VAS instrument.
He believes in the oxidative stress model of illness. Basically CFS patients have high oxidative stress. We lack the enzymes to deal with oxidative stress. Oxidative stress causes aging. CFS oxidative stress and aging oxidative stress are additive. So if we haven't recovered from CFS within 2-5 years then as we age we will deteriorate.
The last slide describes his current working model. He believe beyond a doubt that there is a viral onset. Whether it is XMRV or something else is yet to be determined. It basically follows one of four paths:
- Viral onset; infection with no oxidative stress; cancer
- Viral onset; infection with elevated cytokines and oxidative stress; ROS injury to mitochondria
- Viral onset; infection with elevated cytokines and oxidative stress; cytokine symptoms and injury to NK cells
- Viral onset; infection with elevated cytokines and oxidative stress; oxidative stress isoprostanes decreased cerebral blood flow, decreased cerebral blood volume
The Q&A following the lecture was an additional hour and half of material some of it political and some of it audience members plugging their own cure for CFS. I will write about the medical parts of the Q&A in my next post.