A Conversation of Hope - AutismOne interview: CFS, autism, xmrv...

[Guest guest]

A Conversation of Hope, with Host Teri Arranga

Autism One Radio, 46:00 minutes http://www.voiceamerica.com/voiceamerica/vshow.aspx?sid=977

Transcript by Flo, ME public forum link http://www.mecfsforums.com/index.php/topic,1062.15/topicseen.html

About this episode:

Quote

Hillary is an esteemed journalist and author of the book, Osler's Web. Hillary has written about environmental and medical topics for the last 15 years of her 30-year reporting career. She has explored the introduction of anti-retroviral " cocktails " in AIDS; public health threats posed by the ever-mutating influenza virus; viral causes of multiple sclerosis; the XMRV virus; and, most notably, biomedical research gone awry in the case of " chronic fatigue syndrome " a.k.a., myalgic encephalomyelitis. This is sure to be a fascinating conversation.

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Teri: Hello, and welcome to the Voice America Health and Wellness Channel and this program, Autism One, A conversation of Hope for Tuesday, October 10 [2010].

I’m Teri Arranga, with with my guest, Hillary . Hillary is an esteemed journalist and author of the book Osler’s Web. Hillary has written about environmental and medical topics for the last 15 years of her 30-year reporting career. She has explored the introduction of antiretroviral cocktails in AIDS, public health threats posed by the ever-mutating influenza virus, viral causes of Multiple Sclerosis, the XMRV virus and, most notably, biomedical research gone awry in the case of Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis.

I quote from Hillary’s book, Osler’s Web. A surgeon who descended into Chronic Fatigue Syndrome:

“You catch a cold, and thereafter the quality of your life is indelibly altered. You can’t think clearly. Sometimes it’s all you can do to read the newspaper. Jet lag without end. You inch along the fog-shrouded precipice of patient care where you once walked with confidence. Myalgias wander about your body with no apparent pattern. Symptoms come and go. What is true today may be partially true tomorrow or totally false next week. You know that sounds flaky, but dammit, it’s happening to you. You’re exhausted, yet you sleep only two or three hours a night. You were a jogger who ran three miles regularly. Now a walk around the block depletes your stamina. Strenuous exercise precipitates relapses that last weeks.”

Welcome, Hillary.

Hillary: Thank you, Teri. It’s good to be here.

Teri: Hillary, let’s start with a couple of definitions. What’s the difference between a disease and a syndrome?

Hillary: Interesting question. In theory, or actually in reality, doctors differentiate between those two phrases or terms by saying a disease is something for which the cause is actually known. In other words, a cold is a disease because you can identify the rhinovirus that caused this. A syndrome is officially defomed as a collection of subjective symptoms claimed by the patient. So syndrome, you can say they don’t get quite the same respect as diseases. However, I would just add, in reality there are many diseases for which the cause is not known but they are considered to be diseases, and that would include, for instance, MS. Nobody knows the cause of MS, and yet nobody disputes it is a disease.

Teri: And without going into this in depth, what is currently meant by the term Chronic Fatigue Syndrome, and is that a departure from its original definition in the mid 1980s.

Hillary: Well, I will try not to go too much in depth. That’s a complex question. Chronic Fatigue Syndrome is a name that was applied to a collection of signs and symptoms that began occurring in people in the early 1980s. The name was given to the disease by the Centers for Disease Control. They came up with that name essentially with a group of scientists and doctors--there were maybe 10. Many of them had very little experience in treating or even seeing patients who suffered from this collection of signs and symptoms and they seized upon the word “fatigue” because patients were extremely debilitated. And so they… this is essentially a name that was given by the Centers for Disease Control in 1988... but doctors who treat patients wih this problem and patients themselves have never been satisfied with this name. They feel it’s completely inadequate to describe the actual reality of the disease--not to mention the fact that it’s not a medical nomenclature.

And in fact there’s very strong evidence that this disease existed possibly as far back as the 1930s when cluster outbreaks of it began breaking out. One of the first recorded cluster outbreaks of it occurred in Los Angles at the county hospital during a polio epidemic. Most of the doctors and the nurses [at that hospital] came down with this malady. At that time they called it atypical poliomyelitis, and eventually British scientists gave the name Myalgic Encephalomyelitis, which can be shortened and is shortened to simply ME, and that is the name that is currently in use in the UK and Australia and New Zealand other countries. But unfortunately the name the CDC applied to this disease in 1988 has basically reigned supreme for the last quarter century. And in terms of… I suppose you really wanted me tell you what the disease is.

Teri: No. That’s alright. I think you’re doing fine. I’d like to segue to, though--you’ve told us about the 1930s, and I’d like to go back to the mid-1980s, the beginning of when this was really coming to the fore, how, when and where this was developing, being noticed, the cluster outbreaks…

Hillary: Okay, well, in the early 1980s there were a couple of papers published in the medical literature by doctors who had seen cases in their practice of children and adults who had a, what they called at the time a chronic mononucleosis-like syndrome. It wasn’t mononucleosis but it had the same kind of symptoms that mononucleosis has, where the patient has, is suffering from extreme exhaustion and may be bedridden, etc. These papers appeared in the medical literature, both of them, in 1983, and I think a third in 1984. In 1984 there was an outbreak of this mononucleosis-like illness in Lake Tahoe, Nevada--actually not in the lake, in a little town called Incline Village next to the lake. But the… and that outbreak got a lot of publicity at the time.

By 1985, ’86, the CDC was… kind of reluctantly… went out to Incline Village and did a very inadequate investigation. I think that’s widely accepted. I think it’s fair to say that. It’s not just my opinion. Many doctors and research have rued the fact that the CDC did such a poor evaluation of the Incline Village epidemic, because there could have been some good science done there and they kind of blew that opportunity.

But the point I’d like to make is that though there were some instances of well publicized cluster outbreaks around t he middle 19-80s, in actual fact this disease was spreading quite rapidly, really all over the country and probably all over the world. And there were many, many people who were coming down with this in Los Angeles, San Francisco, New York, Chicago, San Diego--just name a city, name a place--there were very large numbers of people falling ill with this disease and, I might add, interestingly, this epidemic grew really in tandem with the AIDS epidemic.

Teri: Okay, let’s transition over to that then. What were the similarities or disparities with AIDS? And We know that back in the early 1980s AIDS was considered a mysterious illness. Did the backdrop of AIDS hamper or help looking into this new illness that was striking down adolescents, men and women from many countries?

Hillary: Oh, these are marvelous questions. In terms of… Let me take the similarities and similarities part of your question first. There were many similarities. Unfortunately, the similarities were not really well defined for quite a while because there was so much focus at the time on HIV. Similarities and disparities. I would say there are greatly more similarities than disparities.

In 1990 there was a paper published by a respected HIV inmunologist who essentially said that CFS--Chronic Fatigue Syndrome--could be certainly fairly called a syndrome of immune dysfunction, and the scientist laid out many, many areas of immune dysfunction that were not unlike the immune dysfuctions seen in HIV. The other… More similarities… there’s a well known AIDS dementia where as the disease goes on the patient will sometimes become disoriented and will have encephalopathic symptoms and these show up on MRI scans as multiple brain lesions, small, very small, but scattered throughout the brain. And identical findings were made in CFS. In fact, one of the hallmarks of the disease is neurological dysfunction, cognitive impairment and small brain lesions.

And in 1992 a major paper was published on CFS by a Harvard doctor and researcher who showed that these brain lesions were in over 80% of patients. He talked about immune dysfunction and finally opportunistic infections, which are also well known in AIDS.

Teri: Hillary, can we pick up on this when we come back from break? This is fascinating, and we will pick up with this line of thought. [11:20 - Commercials begin. 13:47 - Commercials end.]

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Teri: We’re back with esteemed journalist, Hillary , who is the author of Osler’s Web. This book is about 700 pages long and I must say, this must have been a labor of love. It is so chock full of research and firsthand accounts. So, well done. Hillary, before the break you were telling us about brain lesions?

Hillary: Yes, I was starting to say that the brains of AIDS patients who are fairly progressed in their disease--of course we don’t see that necessarily as much these days because there has been good therapy for AIDS--but in the ‘80s the brains of patients with AIDS and CFS were almost indistinguishable in the sense that people found these small brain lesions, in the brain, and also accompanying cognitive dysfunction and loss of IQ points that could be measurable.

And the third aspect of similarity between HIV/AIDS and Chronic Fatigue Syndrome has been opportunistic infections. Remember, I said that the disease initially in the very early ‘80s was described as being mononucleosis-like. And in fact one of the opportunistic infections that occurs in CFS is that many, many viruses that would normally be kept in check become reactivated in this disease, and I would include the virus Epstein-Barr, which is among other things a herpes virus that causes mononucleosis. And there are a number of other herpes viruses including one called herpes virus 6, herpes virus 7...

These viruses are reactivated and are obviously contributing to the disease burden, as doctors say. In some patients they’ve found as many as 30 to 70 reactivated infections that normally would not be activated in a person with a healthy immune system. So I think these three things--the cognitive neurological dysfunction--which is very pronounced in Chronic Fatigue Syndrome, the opportunistic infections and the immune dysfunction-- these three things are what HIV/AIDS and CFS have in common, very much in common.

Teri: Hillary, I think this would be a good time to explain to our listeners what a retrovirus is and what HTLV is.

Hillary: On the scientific level, retroviruses act in unusual ways compared to regular viruses. They use a substance called reverse transcriptase to enter a cell and basically insert their own genetic material into the cell itself, into the human cell, and they in effect sort of commandeer the cell. I’m sure that if there are any retrovirologists listening to me right now they are probably screaming because I’ve dumbed this down considerably, bit the actia; science of this is rather complicated, but the point is that once a cell is infected with the retrovirus it can never be uninfected. Infection with a retrovirus is a permanent state. It can never be cured, at least not so far. It can’t be eliminated. Once the genetic material from the retrovirus is in a human cell it’s there to stay.

Retroviruses have been well known. They are widespread in the animal world. And scientists have known about retroviral infection in the animal world since the turn of the 19th century.

But it was only... It wasn’t until about 1980 that the first human retrovirus was discovered, and that is called HTLV, and that stands for Human T-cell Lymphoma/Leukemia Virus, because the virus obviously infects T cells which are a component of the immune system and like many retroviruses in the animal world HTLV can cause cancer--immune system cancers and cancers of the blood and it also causes, like many retroviruses in the animal world, a profound neurological disease, somewhat like MS. So that’s what HTLV is. That was the first human retrovirus discovered. HIV of course was the second human retrovirus, and that was discovered in 1983-84.

Teri: So let’s go back to the question about the backdrop of AIDS. Did this help or hamper looking into CFS?

Hillary: Teri, that’s a great question and it’s been, actually, I think it is a question that remains unanswered. I’m not going to claim to be an expert on that in any way. I think there are a lot of theories and a lot of educated theories about why HIV/AIDS became the disease that had billions of dollars focused on it, or turned to the disease, over the 1980s and into the 1990s and into the last 10 years, 11 years of this century.

When I first started covering the so-called CFS story, I was living in Los Angeles, and in 1987 I called the epidemiologist for the Los Angeles health department and asked her about CFS and whether the Los Angeles health department was hearing a lot about this disease from doctors and so on, and she said that her department was actually overwhelmed with calls about chronic fatigue syndrome from patients and doctors patients alike. And this was 1987 Los Angeles.

And she said unfortunately all our money has been directed at AIDS. We really can’t do anything about this problem because we have no money dedicated for it. People say well, gee, the thing about AIDS was people were dying. There were bodies piling up, to be crude. It seemed like a public health emergency and so on.

In fact, Chronic Fatigue Syndrome also seems to be progressive, and a potentially fatal disease as well. I think one of the things that happened very early on is, again, I go back to the CDC’s decision to call this… to give this a new name, to change the name from Myalgic Encephalomyelitis to Chronic Fatigue Syndrome in 1988. The name itself implies this is not a serious problem, it’s not anything we need to worry about. After all, you can’t catch yuppie burnout, you can’t catch fatigue. So that really, at a very early date, Chronic Fatigue Syndrome was made to seem unimportant and not serious.

Teri: How were the first patients regarded? Were patients thought to be psychotic?

Hillary: No. It’s interesting. Before the CDC got involved with this disease I think patients were taken quite seriously and I know for a fact there was a tremendous amount of concern among physicians who were seeing these patients.

One of them, I mention in Osler’s Web--he was an infectious disease specialist in Atlanta. His last name was Dubois. He was an HIV doctor, but he also was seeing a tremendous number of people with this other new immune system disease. He actually made a presentation at the Centers for Disease Control in the early 1980s. It was well attended by CDC scientists, and he proposed to them that they might start thinking about this other disease and in fact it might be some kind of subclass of HIV, or some related disease. His warning was we have not just one epidemic or outbreak in immune destroying disease, we may be looking actually at two different, two new diseases of immune dysfunction.

But when the CDC got involved in this disease that’s when things really started to go south. And the CDC began publishing a series of papers that suggested this was a disease that was mysterious, was difficult to diagnose, that it might just be depression--they weren’t sure. Their papers were primarily focused on the psychiatric status of people who were ill with this disease rather than looking at the biological abnormalities.

Teri: I’d like to read, before we break here in a moment, this passage of yours on page 633 that I love. It says:

“For years federal health agencies have fostered the view that CFS was grossly overdiagnosed and that most cases were probably better known chronic diseases that doctors had failed to recognize, such as lupus, multiple sclerosis or, most popularly, garden variety depression. Yet in focusing on what else CFS might be, the government stubbornly ignored massive evidence for what it was.” [24:11]

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[25:30] Teri: we are back with the author of Osler’s Web, Hillary . I’m going to start by reading another quote from Dr. English, who is on page 461 of your book, Hillary. The same surgeon I quoted at the top of this hour:

“You, too, might wonder about your symptoms had you not talked to other patients with similar experiences…or talked with physicians who have seen hundreds of similar cases.”

And he quoted medical educator Sir Osler:

“To comprehend this illness one must heed Osler’s advice to study the patient firsthand: ‘I have talked to scores of fellow patients who went to our profession for help, but who came away humiliated, angry and afraid. Their bodies told them they were physically ill, but the psychospeculation of their physicians was only frightening and infuriating--not reassuring.’”

Hillary, do you remember that interview?

Hillary: I do, very well. This was a brilliant surgeon who lived in North Carolina, who became completely disabled by this disease. He told me in an interview there were days he would just kill to be able to go in and remove an appendix. He missed his work so much. It was devastating to him to be unable to practice medicine. But he said he would never risk someone’s life by attempting to perform surgery.

But this is completely typical of this disease. It is a massively severe disease. It is really unlike almost anything you can think of. Numerous studies have been done to determine the degree of disability and morbidity in this disease and many studies have shown it is probably the most disabling illness that is known. And CFS patients are sicker than most patients with heart failure. They’re really sort of like patients with end stage heart failure or patients with AIDS in the last weeks of life. It’s a very, very severe disease, the morbidity is untold, and of couse, as I have emphasized, the government name for this disease, it completely diminishes the severity. And I have always maintained that this disease, that the name Chronic Fatigue Syndrome was in fact a political construct that the government essentially created to allay any kind of public fear or panic about this outbreak.

The sad result of that has been that there are at least a million Americans currently who suffer from this disease. It’s continuing to spread. There are new cases all the time. These people, like the surgeon that you quoted, have been in effect plucked out of life. They can no longer function in the work place. They can barely function within their families. The suffering is just untold, and then of course layer on to that the fact that patients with this disease are often considered the butt of jokes, actually…

Just last night I saw a special on HBO about salsa in New York and there was a person in the salsa class with Chronic Fatigue Syndrome and the documentary itself seemed to be mocking this patient because he had so little energy, and he was clearly trying so hard, but he simply could not keep up. And the teacher was making comments, sort of winking at the camera, making comments to indicate that there was something psychologically off about this guy. When in fact I saw him as a kind of hero. He was at least trying as hard as he could to do something, to feel as if he was participating in the world around him.

Teri: That’s horrible. I see so many similarities with autism, Hillary. The physical manifestations and debilitation are not taken seriously and then someone suggests it’s a psych thing and wants to put a behavior plan in place. It debilitates the individual, it breaks up families, it sacrifices careers, and I absolutely agree with you about the politics of definition. I think that when they don’t understand us, they minimize us.

[31:16] Hillary: Absolutely. I agree. I think there are just profound parallels between Chronic Fatigue Syndrome and the autism epidemic. It’s absolutely tragic the way parents of children with autism have been forced to take on the problems themselves and have been left to deal with the momentous medical problems that their children have, without really much support or understanding on the part of the medical community. It’s a great tragedy and it’s an outrage.

Teri: Hillary, you mentioned some cities earlier where there were high populations of individuals who have Chronic Fatigue Syndrome. You mentioned cities like San Francisco, New York, Seattle. I couldn’t help but think that sounds like population centers where AIDS cases were diagnosed as well. Why do you think the urban centers were having a notable prevalence of these maladies?

Hillary: Teri, I think generally what is going on, what has been going on, and I say this because I’ve talked to scientists about this, that in all large urban centers the conditions for the spread of infectious disease are probably better than they are in rural America, and if you think of it in Los Angles, San Francisco, and especially New York, these are cities where people live in very close contact with one another. People live literally on top of each other. There are a tremendous number of people living in relatively close quarters. I do know that a scientist who is very prominent currently for having identified a new retrovirus in Chronic Fatigue Syndrome has speculated that the rate of infection with this particular retrovirus is probably significantly higher in large, major urban centers such as New York, London, San Francisco, etc., than it is in rural America.

Teri: I assume you are talking about XMRV. Your book stopped in the mid 1990s, and so I wanted to look in wikipedia to see if any enlightenment of the mainstream medical community has filtered down since your book was published and it has not. So I would like to talk about the exciting events surrounding CFS, like you just mentioned, and that is the XMRV virus.

[34:15] Hillary: In October of 2009 an incredibly important paper was published in the journal Science. This paper, in effect, found a very, very significant association between infection with the new retrovirus, which was discovered in 2005 actually, called XMRV. The association was between XMRV and patients with Chronic Fatigue Syndrome. Out of 101 patients with Chronic Fatigue Syndrome, 67 percent were positive with the retrovirus XMRV.

The lead author was a scientist called Judy Mikovits. Dr. Mikovits was formerly at the National Cancer Institute for over 25 years. She was a retrovirologist. Her involvement at the National Cancer Institute was mostly with HIV virology. In the year 2006 she was invited to become the scientific director of a new institute in Reno Nevada, called the Whittemore- Institute for Neuroimmune Diseases. Dr. Mikovits was introduced to the disease Chronic Fatigue Syndrome, and the more she learned about it, the more it seemed to her that it probably had a retroviral basis.

She went to work with a small team of investigators in Reno and also drew in a collaborative group from the Cleveland Clinic and the National Cancer Institute, and ultimately they were able to isolate XMRV in, as I said, two thirds of patients with Chronic Fatigue Syndrome.

They were able to prove that it could be transmitted, in other words, that it was infectious. They did this by taking blood from XMRV infected patients and adding that blood to healthy blood--uninfected blood--and they discovered they could create new XMRV infections in blood. They found it in the saliva of patients with chronic fatigue syndrome, suggesting that XMRV may be casually transmitted. In other words it doesn’t require blood-to-blood transmission, which could explain why there have been a number of cluster outbreaks among school children and among children in general, because this is clearly not--it doesn’t appear to be--a disease that is spread exclusively among adults. It’s prevalent in children as well.

[36:27] Teri: Can we pick up with transmission when we come back after the break? We’ll be right back with Hillary .

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[Recording ends abruptly, 10 minutes early.]