Dr. Mazlen
Our guest today is Elaine DeFreitas who is a pioneer of the virology area as well as a specialist in retroviruses, but more importantly Dr. Elaine DeFreitas, much to her credit was one of the first people to tackle Chronic Fatigue Syndrome as a serious disease and that's why I'm honored to have her as a guest today. She's spent a lot of her time and effort and also significant resources in terms of grant money and technicians looking into a viral etiology for Chronic Fatigue Syndrome and we owe her a debt of gratitude for that because she helped to give the disease creditability at a time when it was really lacking creditability. Now, without any further delay, I want to welcome to our show our eminent guest, the renowned virologist Elaine DeFreitas from Florida. Elaine welcome to our Chronic Fatigue Syndrome show.

Dr. DeFreitas
Thank you very much, Dr. Mazlen, it's a pleasure for me to be here.

Dr. Mazlen
I think since it's really basically your show today to talk about things, you might want to give us a little background because you got into studying the viral etiology or looking for a viral etiology for this disease very early. Maybe you want to just mention what led you into it or what prompted you to do that.

Dr. DeFreitas
Certainly. I actually was very ill-informed or non-informed about the illness when I was approached by Dr. Paul Cheney and Dr. Dan Peterson and as many of your listeners probably know these are two clinicians that described, we think, one of the first endemic outbreaks in Incline Village which is in Lake Tahoo, Nevada and they were very puzzled by what they were seeing, namely people of all ages coming in--I should qualify that--people from about mid-adolescense to their 40's and 50's, people coming in with the symptoms you just described to your listeners and coming in with alarming frequency as the year progressed. This was 1983, 84 and Dr. Cheney was interested in the notion that this disease might be actually infectious and, of course, that thought came to him because of the increased incidents of seeing people in this relatively confined, small town area of Incline Village. Believe it or not, 13 and 14 years later, people are still debating whether this illness is infectious or not.

Dr. Mazlen
Is that what got you interested in studying it?

Dr. DeFreitas
Yes, because I had been studying viral immunology, if you will, the body's immune response to viruses, and was very busy doing a number of other projects at the Wistar Institute in Philadelphia when I got a call from Dr. Cheney describing Chronic Fatigue Syndrome but he was using the term that he knew I would be familiar with, the old term which is Chronic Infectious Mononucleosis. Now we know that acute mononucleosis is caused by a herpes virus called Epstein Barr virus and a lot of teenagers get it. It's been referred to casually as the kissing disease. A few kids will get it in high school and then maybe a whole class or two in the high school. A number of adolescents will become sick. It's a very self-limiting disease and within three or four weeks, the adolescents went back to school and were fine. This however, although having the same symptoms early on, this disease did not seem to go away. Dr. Cheney was seeing patients 8 or 9 or 10 months later, a year later, that were still suffering from the same problems so when he described a chronic mononucleosis, the virus that came to my mind, of course, was Epstein Barr virus, EBV and to show you how really uninformed I was at the time about this problem, then Dr. Cheney was really educating me on the fact that outbreaks or, if you will, clusters, have been reported from a number of cities in the last 10 years--this is 1984 that he was talking to me now--describing an illness such as this where some people get well after 6 or 8 months or maybe a year, other people do not seem to get well and it can go on for years.

Dr. Mazlen
Or decades, as I've seen it.

Dr. DeFreitas
It was an eye-opener for me and, of course, it peaked my interest and I did my own reading about it but the viruses we were currently looking at were the only two at the time known retroviruses. In 1984, as your readers probably remember, was right around the time when HIV, which is the third human retrovirus ever discovered, HIV was just beginning to be accepted by the scientific community and it was discovered by Dr. Robert Gallo here in the States, and by Dr. Luke Montegne in Paris. I was looking at HTLV I which is a relatively benign retrovirus compared to HIV which was discovered by Dr. Gallo in 1980 and this virus did not produce the kind of symptoms or didn't have the end result that HIV usually has. This virus gave a number of people who were exposed to the virus, and again, this exposure had to be a very intimate exposure, exchange of bodily fluids, just like HIV...

Dr. Mazlen
So, you went after the HTLV I.

Dr. DeFreitas
Right, because I was interested in it at the time because it seemed to produce a disease very similar to Multiple Sclerosis where people were paralyzed mostly from the waste down, but it was a paralytic disease and Dr. Cheney was convinced, based on, I guess, his readings on the immunologic abnormalities in some of his patients that he was documenting to see whether HTLV I was might cause this illness.

Rose, caller from NY
Describes symptoms in her 13-year old granddaughter that suffers from dizziness, heartburn, and fatigue. Wants to know what she should do.

Dr. Mazlen
Tells her that she needs a comprehensive workup and examination. She needs adequate testing with different profiles that look at different viruses such as Epstein Barr, CMV, and others including HHV6 which is relapsing and also Coxsackie.

Dr. DeFreitas
I thought that call was very interesting because, and I think you gave the caller excellent advice, part of the difficulty, and you probably face this everyday, is that there is no specific diagnostic test for this disease and that's why, as you mentioned, all other diseases have to be ruled out before a physician can seriously consider the patient to have Chronic Fatigue. Now, I understand that Dr. Robert Suhadolnik from Temple University in Philadelphia is in the process of testing for the FDA a test he has developed, a laboratory test that can be done on blood from patients that may be, in fact, specific, for Chronic Fatigue Syndrome, but at the moment, of course, that study has just begun and we probably won't know the results of that study for a couple of years, but if it does pan out, this I think would be a great boon to physicians and patients alike.

Dr. Mazlen
Especially, since it's based on a genetic mutation problem and at least one, and maybe more mutations exist, so it would give patients the credability to be worked up with dignity. Tell me about your new findings. You mentioned to me, previously, in private about some work with the mitochondria that you didn't publish. I'd like to hear about it.

Dr. DeFreitas
I think that the last series of studies that we did before my laboratory left the Wistar Institute was that we were able to grow an agent, and let me just call it an agent at the moment, we tracked that agent using polymerase chain reaction, PCR which I think a lot of people listening to the O.J. Simpson trial heard enough about this particular DNA test to know what it's about, and using PCR we were able to track this agent in the lab and could find that it was growing in certain cells, human cells that grew in the lab and I was able to give samples of these cells to an electron microscopist, Dr. Mall who was at the Wistar Institute who excitely called me down to look through the microscope and what was amazing to him and myself was the fact, in the cells that seem to have the agent we were following, that within those cells the mitochondria of those cells were defective. It was as if they were almost fragmenting and, the mitochondria for those that don't know, are the energy factories. Every cell in the body has mitochondria and these are the little energy factories of the cell so it doesn't take a leap in the imagination to realize that if an agent is disrupting maybe even destroying completely both the structure and the function of the mitochondria, that gives us energy, that this agent could logically be thought to perhaps directly produce some of the symptoms that patients complain about and that are very real, including the cognitive impairment. I received many letters and calls from patients that say as terrible as the fatigue is, the fatigue is almost a mild word for what people are experiencing, some people can't even get out of bed to go to the rest room, that's more serious, you know, then "I'm tired all the time, " that besides the fatigue the loss of short term memory is really profound in many people. I've had people telling me that they've forgotten their phone numbers that they've had for years.

Dr. Mazlen
It almost sounds like Alzheimer's when you put it that way.

Dr. DeFreitas
It's very frightening and I think the number of patients who have gone to neurologists with some of these neurologic signs have been told that there's a possibility that they have Alzheimer's or they may have Parkinson's or some type of disease that affects memory and affects problem solving and attention, the ability to concentrate on one task.

Dr. Mazlen
Which is why a lot of them are unemployable. I want to mention on study, there was a study published showing that B-12 which I've used on these patients in higher doses is as able to stimulate adenocyclase, an enzyme in the brain that promotes the production of ATP, which is exactly the problem you are relating to about the mitochondria. It's an obscure reference, so if anybody wants it they can get in touch with me at my office.

Dr. DeFreitas
Yes, and I've also heard that the B-12 is especially effective if it is given subcutaneously or intramuscularly rather than taking it orally in a vitamin tablet that has B-12 in it. The reasons for that are not yet clear, but yes, I agree with you, I've heard patients getting some relief, lessening of some of the symtpoms with B-12 shots.

Dr. Mazlen
Elaine, we can sum up now for a few minutes if you would, where are you going from here? What are some of the things you are looking at or will look at or want to look at?

Dr. DeFreitas
Unfortunately, my laboratory won't be doing anymore work on this project and a cruel fate of my being in a motor vehicle accident and the resulting disability I have from that, I was unable to maintain my laboratory but I can tell you that other people, other very brave and hardworking people are still working on this problem and I really feel that in the next year there will be a number of very definitive studies coming out indicating not only what may cause this disease but an effective treatment for it as well and what I had mentioned before, a diagnostic test. And this, I think, once and for all, these findings, coming out of the number of excellent medical schools in the country, will put an end to the debate that involves whether this disease is merely another type of depression, which it is definitely different from and will show it to be an infectious disease and a disease which is treatable and I think the patients will be happy to hear that.

Dr. Mazlen
They're certainly happy to hear it coming from you with your overview of this field knowing your past experience and your renowned ability to have insight into what's going on because you were one of the first to start tracking as a microhunter the cause of this disease, and we give you credit for that certainly.

Dr. DeFreitas
Thank you. I wish I could have been in it to the point when it was solved.

Dr. Mazlen
Well, we're going to stay with what's going on. We'll be talking to you again, I'm sure. I also will be able to give the audience an address where they can write to you because I will speak to you after the show and get that from you, where you would like correspondence to be addressed and I would like to mention Dr. Suhadolnik's work that you mentioned and that is to say that it involves genetic mutations and an important antiviral pathway which is disabled. It keeps itself from destroying cells that are infected with invading viruses so the viruses continue to replicate. We also need to talk, about at a future show, some of the other areas that are being looked into, the different organisms, mycoplasma etc. and keep track of that. But I want to invite Elaine DeFreitas back later on, perhaps in the new year, to talk about maybe some of these other labs, what they're doing or what you might know about it.

Transcribed by

Carolyn Viviani
carolynv@inx.net