Made a start on the lecture. From the beginning to 8:21. Need to stop for a while now. Might do some more after lunch if I'm up for it. Will post to let you know I am doing that so we don't get duplication.
Lecture by Dr David Bell
The Barborka Family presents a lecture by Dr. David S. Bell on the XMRV retrovirus, Chronic Fatigue Syndrome, Fibromyalgia, ME (Myalgic Encephalomyelitis) and Aggressive Prostate Cancer. The lecture was held in Tustin, CA on Jan.. 15th 2010.
Well thank you very much, it’s a great pleasure to be here. We always try to find some place to go in January and February from upstate New York . This is a wonderful place.
Let’s see if we can get our slides clicking here. OK, so I have to turn this on. Ah there we are.
OK, it’s always a bit of a mystery. I’d like to keep this informal and then after about 50 minutes we’ll open it up for questions and answers and any question is OK. There’s no question that’s silly or anything like that and I enjoy a huge variety of questions. But what I’m going to go through is mainly the new developments related to this virus XMRV. Before I start I need to know is there anybody here who really doesn’t have any experience with Chronic Fatigue Syndrome and needs some education about the basics. So everybody’s a veteran – is that right?
It’s really interesting because many of the patients with Chronic Fatigue Syndrome go into their doctor and say “Well I’ve brought you this latest paper on the cytokines that’s been published in this journal“ and their family doctor has no idea what a cytokine is. So many people with Chronic Fatigue Syndrome are quite sophisticated in what they already understand in terms of what this illness is.
So I’m going to touch very briefly on some of the basics because we’ll be coming back to it.
The current diagnostic criteria for Chronic Fatigue Syndrome is really quite simple. Even though on the internet people argue about it daily now for the past 25 years it’s really very simple. The simplicity is that this illness restricts your activity. They used to say that you have only 50% of your normal activity. Some people now would say how would you measure 50% of activity – it almost doesn’t matter. In terms of what normal activity is, this illness restricts it.
In addition there are 8 very common symptoms and you have to have 4 to meet the CDC criteria and those symptoms are listed right up here.
And then the third part is you have to have no obvious explanation for the fatigue and the other symptoms. So that it’s really quite simple. Someone comes into the office and their chart is this thick and you have no clue of what’s going on they probably have Chronic Fatigue Syndrome. Those were the first criteria I put out 25 year ago and I think that they are still quite accurate.
A lot of people with Chronic Fatigue Syndrome get enormous numbers of tests and this costs a huge amount of money and those tests in general are perfectly normal. This is misinterpreted by family physicians and specialists to mean that there’s no disease present and that’s a misinterpretation and we’ll be coming back to that over and over again. Just because your standard laboratory tests are normal does not mean that there’s no disease present.
Now the fatigue of Chronic Fatigue Syndrome, it’s also called ME or Myalgic Encephalomyelitis, and the fatigue of fibromyalgia as well is not a true fatigue. The fatigue as defined is a state of recovery. If you go out and run a marathon you will have fatigue and that is the process of recovery from that exertion. And that’s exactly what does not happen in this illness. So fatigue is really the wrong word – it was misnamed right from the start.
In fact…… the fatigue is described as an exhaustion or weakness but the true meaning of it is orthostatic intolerance. What that means is that people are not tolerating the ability to stand upright. So when they are standing upright they are not able to maintain that position. Interestingly enough, most people with this illness when they are walking around say they feel much better than if they are standing still. And one of the tests that we very commonly used in our office is we’d have a person next to the examining table for 5, 10, 15 minutes or half an hour and we called this orthostatic testing and has been described by Dr David Streeten in great detail. And healthy people can stand for an hour. He did his normal values based on 90 healthy people and he had them stand up for an hour without moving. After an hour many of the healthy people were somewhat tired and had achiness in their legs and that’s normal. Patients with Chronic Fatigue Syndrome very rarely make it past 20 minutes and the severity of the illness is almost predictable by how soon it will be before the symptoms become overwhelming and that person become presyncopal. They have orthostatic intolerance and they have to lie down. Their pulse sometimes goes up very high, their blood pressure goes through some changes but this is in general called orthostatic intolerance. And it’s different from the fatigue that is present in 50% of the population.
It’s not simple tiredness. And it’s not anhedonia. Anhedonia is a psychiatric term which means that you have no motivation to go out and do things. Persons with Chronic Fatigue Syndrome would love to go out and do things but they just physically feel that they can’t do it. So in depression because you are depressed you really don’t want to go and go shopping at the mall, but if you are pushed to do that frequently you feel somewhat better. In Chronic Fatigue Syndrome if you try to go shopping in the mall you actually don’t feel better, you feel worse.
And it’s not a sleepiness – it’s different from illnesses characterised my sleepiness although a lot of patients will have hypersomnalence, they can sleep for 20 hours a day. In general the milder the illness, the more a person gets good or heavy sleep.