Tom
Good morning, Dr. Mazlen. Happy Father's Day and thank you for inviting me on here.

Dr. Mazlen
And the same, Tom, to you. We're delighted to have you as our guest. Our listening audience will be very interested and is waiting to hear some of the many things which you in your vast experience with Chronic Fatigue Syndrome, both as a person who has had Chronic Fatigue Syndrome and continues to suffer from it and as an advocate, a notable advocate, not only for Chronic Fatigue Syndrome, but an advocate who has also become involved very much with the veterans and their families who are suffering from Gulf War Syndrome. Let's start off just talking a little bit about your Chronic Fatigue Syndrome experience. How it started and where you have been led with that?

Tom
I was a classic workaholic in my mid-thirties, working 12 hours a day, six or seven days a week. You know, maybe take a week or two off each year, but nose to the grindstone and I came down with a flu-like illness living in Texas near the Gulf and kept getting muscle aches and dizzy spells and went to the doctor and they said maybe it was Hodgkin Disease, maybe early Multiple Sclerosis. They weren't sure. But one night I ate some raw oysters with some customers and I went home and I felt a little queasy and the next day I couldn't move. My throat was swollen shut, my tongue as big as my fit, I could hardly breath, I needed help to get to the bathroom, I had to drink through a straw for about six weeks and they finally put down a viral illness of unknown origin. And basically I've never recovered. I did go back to work for a little while and then, unfortunately, about a year later, not putting two and two together, I ate some oysters again and I've been totally bedridden in excruciating pain for the last 10-1/2 years.

Dr. Mazlen
That's certainly quite a story and it may actually come as a surprise for some people, and for some health care professionals that these types of problems and this disease in particular can be so severe. But you did something positive with your experience. You went ahead to found an organization called RESCIND in 1991. Talk to us about that. What made you found it and, of course, you founded it on May 12th which is of some significance and I'd like you to explain that too.

Tom
Rescind, the word, according to Webster's Dictionary means to repeal, to roll back or abolish. Our acronym RESCIND stands for Repeal the Existing Stereotypes about people with Chronic Immunological and Neurological Diseases. And it's our opinion that some of these illnesses are so severe, even life threatening. We have a memorial of this now of over 70 people that I know of personally that have succumbed to these conditions, but the public perception is that it's whiney, white women in their 30's and 40's who can't handle stress. In my personal experience--I'm not a woman--and I was a classic workaholic, so why would I lose my home, three cars, a beautiful life style to lie in bed for 10-1/2 years unless something dramatically happened and during that time I remembered a childhood when I lived in Japan. My father was an executive with J. Paul Getty for the Getty Oil Company that you might see the ads for in New York. I saw a TV show about some soldiers and it was of the American soldiers of Viet Nam in '68 and they showed them standing near a little village and they said this is the town of Milai, we're protecting the innocent, we're the heroes. America has come to save the day. And at 9 o'clock, I saw on the Swedish Independent television, a camera panned to the left and there were the same soldiers, but when it went to the left there was funeral pyre of about 400 women and children and the soldiers were lighting the corpses on fire and I finally realized that maybe the government could lie to us. So, I just had that in back of my mind, a little 15-year-old teenager and it never clicked, but then 20 years later when I got sick I started calling the government saying how can you be so sick and no one not know anything about this. And I found out there were other groups, chronic fatigue groups, Viet Nam veterans groups that were all complaining but no one was listening. And one night, the guest on the Larry King Live show on CNN was not able to get there. They had some lighting storms so they called out for another guest. I was close by, I showed up and Larry said, "Well what's it like Tom?" And I said, "Like a Rodney King beating." He said, "Is it that bad?" I said, "Oh, it's vicious. I can barely swallow, I'm on morphine to stay alive." And he said, "That sounds really rough." By the time I got home the phone was ringing off the hook from people from Canada, South Africa, that show is seen in like 120 countries and out of that frustration in this worldwide call for some help we founded this organization.

Dr. Mazlen
Congratulations on founding it. Why, on May 12th?

Tom
Well, May 12th we picked because that's the birthday of Florence Nightingale. She is the inspiration for the founding of the International Red Cross. She was a woman, she founded the first ever School of Nursing. She was very big on sanitation when most doctors of the time pooh-poohed the idea that sanitation had anything to do with health. She was an advocate for people with who were sick. She was from the upper middle class family. She tried to get heath care benefits in retirement and pension for soldiers of the Crimean War and she was struck with a viral-like illness thought now to be chronic brucellosis at age 35. She was bedridden for the next 50 years of her life, but she still fought for truth and justice. So, I thought the fact that she had a viral illness, she was a woman, everybody in the world recognizes the International Red Cross as a symbol of first-in-last-out, and the other fact, my father being a lobbyist in Washington, I know that most laws are written up during the spring sessions in Congress. And since most of us can't handle heat or cold I thought that's a perfect setting.

Dr. Mazlen
That's amusing, it's important, but it's ironic in the way you express it. We have a caller we'll take before the break. Mary in New York City. You have a question, Mary.

Mary
Yes, I was wondering if you could ask Tom why it is that we don't hear more about the chronic pain that's associated with the illness. I've been sick for 7-1/2 years. I got sick when I was 25 and I guess like Tom had two degrees from fancy institutions, worked at least one full time job all the time, active social life. But for me for the last 7 years it hasn't the fatigue that's the biggest problem. It's been the terrible terrible pain. I mean the only reason I want to be anonymous on this show is because of the stigma attached with people like me who have to use Demarol just to be able to get up and take care of myself for maybe an hour and a half a day. Why is it that we don't hear about that? When I tell people what I have they say "Oh, yeah, I'm tired a lot too."

Dr. Mazlen
Tom, it's your question.

Tom
Well, I think this lady Mary hit the nail on the head, Dr. Mazlen. The first speech I ever gave on this subject was April 15th, 1989 about 9 years ago almost to the month and what Isaid to these doctors is "Pain is everything, the fatigue is nothing in this illness. I wouldn't care if I was bedridden fatigued the rest of my life, but to fight every month for morphine or Demarol to knock out the nerve pain, and it doesn't even slow it down. It's so vicious. I've felt all along, we call the F word fatigue as a black person would call the N word or a Jewish person would call the K word. It is so vile and it is so vicious and we feel that the government is behind this. They don't want to admit, after their debacle with AIDS. Unfortunately with AIDS there's been about 338,000 deaths in 17 years, but we spend about 15 billion dollars looking for the cause. With CFIDS there's probably half a million people at minimum who are homebound and 5 to 6 million there are one physical, chemical or biological insult away from complete and crushing disability. But the pain is the number one killer on our list of over 70 people that have knowingly died. I'd say that two thirds took their life because a doctor was afraid of losing his license by giving pain medication to these patients. And in my experience, only about 2 out of 1000 patients become addicted if they're pain patients.

Dr. Mazlen
Tom, I'm going to ask you at this point to give your website for RESCIND so that Mary and others that are interested in talking to you more about this can get to you.

Tom
Well you did mention the other day that you're heard in about 5 states on a 50,000 watt radio station so I would like to give my website because we just don't have the manpower to handle the phones coming in. But it is http://www.geocities.com/CapitolHill/4277/

Dr. Mazlen
I want Tom at this point in time to comment on your involvement at this point with the Gulf War Syndrome.

Tom
Well, I do appreciate your asking about that. It's been my opinion since that show on Larry King back in '91, it was May 4th 1991, the Gulf War had just ended and there were some pictures on Newsweek magazine of a fighter pilot who had been shot down and then he was tortured and beat up and they put his mug, I think it was Ltd. Jeffrey Zaun up on there and he looked like a chipmunk that had been mugged. His face was all swollen. He was beaten up and I held up that picture next to my face and I said, "Larry you can see my face. I look OK but this is what I feel like. The pain is unbelievable." And I said, "We will spend a half a billion dollars per day to blow Sudan Hussein back to the stone age but we won't spend one million per year to find out what went wrong with these soldiers when they came back. And a lot of the calls I got were from Gulf War veterans and it wasn't until 1995 that I heard of a world renowned cancer researcher by the name of Garth Nicolson who you might have had on your show at one time.

Dr. Mazlen
Yes, we had him as a guest.

Tom
Well he has written over 420 peer-reviewed articles in his lifetime. Many doctors can't get one peer-reviewed article. He's been an expert in cancer for more than 40 years. Well, his stepdaughter came back from the Gulf with these horrible symptoms and she's been working in the secret NBC unit, Nuclear Biological Chemical Weapons, in deep insertion in Iraq. At the time Dr. Nicolson was head of M.B. Anderson Cancer in the tumor-biology sector--according to U.S. News and World Reports, the number one medical center in the country involving cancer. So, he started putting all her symptoms in the computer and looking up at his medical documents and it came back that she had Chronic Fatigue Syndrome. And he said, "How could my soldier daughter have this illness of all these whiney white women?" And he found out it's misperceptions by incompetent people at the CDC, the NIH and even our own AMA. That they are so hung up on broken bones, replacing vessels, they don't talk about prevention of illness and we who were given non-approved FDA vaccines, they were given bad food in the Gulf, they were constantly threatened of chemical and biological weapons and the Reagan administration sold the precursors to these weapons to Iraq. So, Dr. Nicolson put a list together of 31 symptoms and of the first top 30 symptoms Gulf War veterans mimic people with Chronic Fatigue Syndrome to within 5 percentage points.

Dr. Mazlen
I think this information on the Gulf War is extremely important because as Dr. Nicolson indicated, he and others believe that the Gulf War Syndrome problem is in some measure or at least in some way contagious to family members and also could therefore spread to outside of families into the general population.

Tom
My personal opinion on that, I believe it's a double-edged sword. The CDC is very careful to say that there's no one virus involved in CFIDS. It's my opinion that any virus can trigger this condition in a predisposed individual. Generally high stress individuals. One comment, I've read over 80,000 pages and I bet your listeners will all shake their heads when they hear this one comment, it's by Dr. Melvin Ramsay a researcher 50 years ago in England. And he said, "The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length the patient persists in physical effort after his onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis." And it is our belief that the CDC and NIH don't even look at these patients until 6 months after they've been homebound and what this doctor said, unless you find this early and catch, you're doomed.

Dr. Mazlen
There's certainly a lot of logic in what you say because by definition you don't have it unless you've had chronic sustained fatigue reducing physical activity for 50% or more for 6 months and during those 6 months a lot of things can happen as you pointed out.

Tom
Absolutely, I'm a business man, I'm not a doctor. And in our world, the business world, results matter. All the effort in the world doesn't matter if you don't get results and I noticed on your commercial you talk about clinical prevention. The things that have helped me are things like super blue green algae and Evening Primrose oil and of all the medicines in the world the only thing that has helped has been morphine and Demarol to slow the pain down.

Dr. Mazlen
Those are not things you really want to be on for a long period of time.

Tom
I've been on them everyday for 10 years and I try to be clear, concise and cogent in my speech. Which is the exact opposite of a person who would take these to get a high or something like that. I absolutely wouldn't take an aspirin if I didn't have to.

Dr. Mazlen
And a lot of people feel the way you do. But they've not been offered a lot of alternatives and one of the problems is a lot of the practitioners in the health care profession don't pay any real attention to people either with Chronic Fatigue Syndrome, Gulf War Syndrome or Multiple Chemical Sensitivities. In fact, they're often prone, unfortunately and regrettably to dismiss these people as being psychiatric cases or depression cases.

Where does Multiple Chemical Sensitivity fit into all this and how is it related, similar?

Tom
Well, I believe that they are related, overlapping conditions. If you seen our logo and people who go to our website will see it. It's a black diamond with 4 white circles overlapped inside. I believe that most people with these illnesses, the sicker they get the more they become susceptible to different smells. I used to be in the hotel business, restaurant and night club. I could be around cigarette smoke all the time and now even one lit cigarette can make me nauseous for half and hour. Diesel fumes in traffic can make me dizzy. I used to think that these things couldn't exist until it happened to me. You know, it's the old doubting Thomas, but I found that a lot of these Gulf War veterans were infused with different chemicals in there and I believe it has built up, almost like the last straw of breaking the camel's back.

Dr. Mazlen
I'm sure in cases that actually does happen. I want to tell our listening audience that we certainly will plan to ask Tom to join us again. There's just too much to talk about in this short time, and perhaps even in a roundtable type of discussion with others.

Tom, what closing comments do you have for us?

Tom
Well, the first is thank you for even considering to take on such a difficult topic. It's unfortunate, and I don't mean to offend the doctors out there but a lot doctors go into this people to help people and to make money and so far very few doctors have found a way to make money on chronically ill people and many doctors have been impotent in their ability to try to help these patients. But the one thing I will tell all the sick and people in pain out there is this final comment from the German philosopher Edmund Shoppenhower over 100 years ago. He said "All truth goes through three stages. First it is ridiculed, second it is vehemently denied and third it is accepted as being self-evident. We've been made fun of for too long. They're now trying to deny us long-term disability like Unum and these major disability companies, but that's because we're becoming a problem and when we break through and get the truth out it will become self-evident that these chronic immunological and neurological diseases face a threat to the United States and worldwide.

Dr. Mazlen
Tom, nobody could have said it any better than that. We thank you, we hope that you're feeling well in the future. We will invite you back, we'll have you back. One of our next shows will be with Tom Glass the author of papers regarding Chronic Fatigue Syndrome and animals and how they may be contagious from the owner to the pet or from the pet to the owner. Look for this, we're going to have two shows with Tom Glass. They will be heard here and also on WODI in northern Virginia which is 1230 AM.

Transcribed by

Carolyn Viviani
carolynv@inx.net

Permission is given to repost, copy and distribute this transcript as long as my name is not removed from it.