In the Chat Room with Nicholas Regush

In the Chat Room with Nicholas Regush

August 24, 2000, 3:00 p.m. (PST)

This is the edited transcript of the one-hour chat session. would like to welcome you today’s chat with Nicholas Regush. Mr. Regush is an award-winning and Emmy-nominated medical and science journalist at ABC News, where he produces segments for World News Tonight with Peter Jennings. Regush, author of “The Virus Within”, chronicles controversial findings about an insidious predator–the HHV-6 virus

Sammisj: What percentage of HHV-6 goes undiagnosed in the USA?

Regush: Sammisj – No one knows the answer. People are guessing that it maybe fairly widespread, but not enough testing has been done.

Adrienne: When is the best time to test for HHV-6? What medicines or supplements do we need to be off, and for how long to test? Does it matter where you are in your menstrual cycle?

Regush: Adrienne- the data that’s available thus far suggests that the test should be a test that looks for active virus, and this may mean a number of repeat tests, perhaps during times when there are clear cut symptoms. Not clear about the menstrual question.

Dancesalone: What role does HHV-6 play in CFS/FM?

Regush: Dancesalone – if we go by what’s determined by scientific evidence, it appears that in a modest to mid-level percentage of patients, the virus is active in the peripheral blood. As it is it may be contributing in some kind of peripheral way in the peripheral blood, it may be contributing to the disabling of cells in the body, including immune cells. More research is beginning to indicate that CFS patients have active HHV-6 infection, particularly when they are in a period of having symptoms.

Aries4: What is the latest research on HHV-6 that you are hearing from doctors like Drs. Konnie Knox and Dharam Ablashi?

Regush: Aries4 – Their research, while preliminary, is showing that there is active HHV-6 infection in at least a third of CFS patients that they are testing and in some cases, a much higher percentage. This does not mean that HHV-6 causes CFS. It just may mean that the virus may perhaps play a significant role in some patients.

Patti: Are there any new treatments on the horizon for active HHV-6?

Regush: Patti – Some antiviral drugs are being used, and in some cases in combination with immune drugs. Transfer Factor is being tried with some patients. But what is badly needed are full scale clinical trials. Until we get those trials, which means getting money from a highly neglectful government, treatment will be a crapshoot.

Sammisj: Why does not the average physician know about HHV-6?

Regush: Sammisj – Lack of reading time, lack of encouragement from leaders in medicine – particularly those who control funding purse strings – and most importantly, a deplorable lack of medical education dealing with how viruses may contribute to a whole host of illnesses. Given the hundreds of studies in the scientific literature, it appears that HHV-6 is a virus within us that can reactivate to involve itself in a wide range of disease processes.

Hal: Can HHV-6 cause crimson crescents in the throat?

Regush: Hal – It’s certainly possible but it would behoove the medical profession to investigate this seriously.

Dancesalone: Why don’t physicians test for HHV-6?

Regush: Dancesalone – Physicians tend to test for a very small number of conditions based on very limited training. When you have a syndrome of symptoms, doctors are being trained to primarily assume that some of these symptoms lie in the mind, or they just simply are not keeping up with the appropriate medical literature. The main problem with lack of testing with HHV-6 is that with the exception of a fairly good culture test that Konnie Knox and Don Carrigan offer on an experimental basis, there is no standard test available that provides information about an active infection.

Antibody tests for HHV-6 do not provide information about whether the virus is active now. PCR tests are often inappropriate to test for viral activity. Using PCR, as is sometimes the case, there’s a strong case of missing active infection. One of the main problems with CFS science at present is that inappropriate measurements, such as PCR, are all too often used instead of a reliable culture test. This is why there is so much confusion in CFS scientific literature and a major reason why CFS science is often not taken as seriously as it should be.

Sammisj: Why is there not that much publicity about this virus and why is the NIH not active on this? It should be a red alert.

Regush: Sammisj – This is why I wrote the book. I consider HHV-6 to require a red alert. Too much attention has been focused on viruses such as HIV, almost to the exclusion of emerging viruses such as HHV-6.

Patti: What can we do to help get more funding for research on HHV-6?

Regush: Patti – The CFS community will probably have to become as activist oriented as the gay community has with AIDS in order to move the NIH to fund HHV-6 seriously.

Aries4: Is HHV-6 a “reportable infectious disease” to the CDC or local health departments, and are any good estimates of how many people have active HHV-6?

Regush: Aries4 – It’s not a reportable infection, totally neglected infection. It’s really very unclear how many people have active HHV-6 infection. My book tries to paint a picture of a growing public health threat surrounding HHV-6 because stressors from the external environment are becoming greater and greater in our culture. This is affecting our internal environments, where HHV-6 has made itself a home. It lies there like a ticking time bomb, waiting for the hold that the immune system has on our health to weaken.

Studies show (especially the research of Knox and Carrigan) that a damaged immune system leads to the reactivation of HHV-6. Studies show, both in children and adults, can behave like a monster, attacking all key immune system cells, as well as nerve cells. There are hundreds of case histories properly, medically documented in scientific literature, showing the power of this virus when it is unleashed.

Each individual is so different, that a treatment of one sort may not work for everyone. Until we better understand the dynamics of how HHV-6 affects the immune system and nerve cells, you take your chances with treatments. CFS, AIDS, MS, FM, and other muscular or immune or neural diseases will ultimately prove to be far more complex than we understand today. People need to be aware of this growing complexity surrounding these illnesses, as they often have components. We are a very long way from understanding the dynamics of how a virus like HHV-6 can cause different forms of processes in the body that help to bring on disease.

Anyone and I mean anyone, who claims he or she knows the cause of CFS, the full cause of AIDs and the full array of influences that result in MS or FM is a fraud.

Hal: What about Ampligen?

Regush: Hal – Ampligen, like other drugs, has shown some benefit to some patients, but to date, there are no reliable treatments for HHV-6. Studies show that treatments that are successful have not been adequately done.

Esther: Why haven’t our doctors interacted more with the Australian doctors? Are they more advanced than we are?

Regush: Esther – Not to my knowledge, although they certainly have a group in Perth that has raised some interesting questions about the cause of AIDs.

Jeepeater: Did you attend the common cause conference? If so, what was your impression and was anything earth shattering presented?

Regush: Jeepeater – I did not attend because I broke a bone in my foot.

Mermaid: There are a number of new antiviral medications that have recently been released, is there any one that is more effective than another?

Regush: Mermaid – Not according to any scientific data presently available. Unfortunately, there is next to nothing in the way of funding the appropriate studies to answer important questions like this. For someone with CFS or FM, obviously treatment is of a huge interest, but it is absolutely appalling from my vantage point to see how little has been done by the US government, and particularly the CDC, to properly focus on this type of issue. The CDC and the NIH have been creating smoke and mirrors from the start. As a reporter and a producer working at ABC News, I find that these agencies in their approach to CFS and FM have not only been negligent, but their smoke screens, avoidance and poor performance have been criminal.

Aries4: Do you have any information on interaction of HHV-6 and HHV-7?

Regush: Aries4 – There is remarkably little information on the relationship between these two herpes viruses. However, it appears, that because of HHV-7’s relationship to the AIDS scientific field, more money is going to the direction of that virus. I am astounded at that federal decision, given what we know scientifically about HHV-6.

Sammisj: Should a class action suit prompt the NIH to get into action?

Regush: Sammisj – I think that anything that can be done at a grassroot level peacefully and legally, should be done by CFS and FM organizations to arouse the interests of government scientists and their bosses.

Hal: What got you interested in HHV-6?

Regush: Hal – Back in 1986, Bob Gallo, the co-discoverer of HIV, isolated HHV-6. Within a couple of years, he had learned that this virus had a powerful potential to kill immune system cells. Gallo saw this working in a lab dish and wondered if this could also be true in humans. That grabbed my attention as a reporter. I have tracked the story ever since. I became much more interested in HHV-6 after Knox and Carrigan published a series of highly provocative studies in major journals. This is why I wrote “The Virus Within.” My hope was to send a major signal to as wide an audience as I could. This virus has all the potential to become a huge public health threat.

Rin: Do we all have this HHV-6, what can we do to help ourselves if we have CFS?

Regush: Rin – Almost everyone develops an HHV-6 infection early in life. In some cases, the virus can cause severe damage to very young children. There are a number of strong documentations of this in the medical literature. Most of us get by with maybe a few sniffles and a bit of fever after we get this virus from our mothers, and then it goes to sleep more or less. Because it’s a very old virus, it has likely formed a strong relationship with the body, namely the immune system. So the immune system keeps a hold on HHV-6 but it can relax that hold and it is not entirely clear how this happens. In some people, though, the lack of a hold may be very minor and the virus may either do nothing or cause some very temporary damage. In others, the damage can be much more extreme. We don’t now how and why this works. Until we do, there won’t be much we can do to protect ourselves. I suppose having a healthy immune system, namely being healthy and avoiding environmental stressors, would help.

In this day and age, it’s very difficult to tell what types of environmental stressors can weaken our immunity. That includes stress, toxic events we live in and around, infections from other viruses, bacterial infections and so on.

Jeepeater: Any feedback from the members of congress who received your book?

Regush: Jeepeater – I haven’t heard personally from anyone although I’m aware that some people have been reading it. I think it would take a thunderstorm of activity to get people off their congressional seats. I think it would take a major disaster such as a score of children dying, possibly helped along by HHV-6.

This would get the attention of the guardians of the funding gates. What moves congress is political expediency so that’s where the battlefield has to be. The CFS and related communities have to find strong leaders that know how to play the political game. I don’t see that happening right now.

Slee: What do you know about the relationship, if any, between HHV-6 and the Stealth virus that Dr. John Martin at CCID has been studying?

Regush: Slee – I included John Martin’s work in my book because he has a very different take on what might be happening. He believes there are a spectrum of conditions, perhaps with a common viral denominator, which he calls the Stealth Virus. I think that he’s early in his research. He needs more evidence of his findings, but I feel that many of his ideas will ultimately prove to be very important. It’s unfortunate that a number of groups have badly maligned him. Martin has a stellar scientific intellect and great human compassion. I think in some ways he’s way ahead of the game, but he will have to do more research and get more funding in order to be convincing that any of these diseases are closely related and can be seen along a continuum.

I agree with Martin on one crucial point. That is that ultimately we will see that there is really no such thing per se as CFS, MS, FM, perhaps even lupus. What we will see will be strong components between all of these diseases. So Martin does not have the answer. But he’s opening the door to a new way of assessing processes that lead to complex illnesses.

Mermaid: In your opinion, is it possible for us to boost our own immune systems through diet, exercise and supplements. Will this help?

Regush: Mermaid – Here again some of this is a matter of faith. Some of this certainly is a matter of science because we do know that good nutrition helps build our immunity. And of course the converse is true. Here again, the whole scientific picture is very mixed because it’s not really clear what we need to keep our immune systems functioning optimally, particularly in a world that poses threats to the immune system daily. I would encourage people to keep an open mind about nutrition, as it’s bound to be important.

Hal: I live near an industrial park and I feel better when I breathe fresh air in the north. Would moving to a cleaner environment help?

Regush: Hal – Well for what it’s worth, I try to go to a clean environment as often as I can. I’m hoping that will help.

Jeepeater: Can the CDC and NIH be held criminally responsible for their alleged criminal acts?

Regush: Jeepeater – Not likely, but it wouldn’t hurt them to know that some people feel that they’re really very negligent the way they’ve addressed CFS and FM.

I’d like to see some heads roll at some point, particularly those in the position of power to fund, for they’ve neglected the concerns of many millions of Americans. Anyone who claims that any of these illnesses that we’re talking about are in someone’s head should resign immediately. There is no scientific argument for that position, none whatsoever. There is not even any way to prove that point scientifically unless one knows what the mind is or how the brain works.

This all in the head business is one of the most disgraceful positions held by medical experts who draw their salaries from the government. I would debate any of them, anywhere, at the drop of a dime on this point alone. Having spent many years researching brain science and writing a book on the brain, I can’t believe it when I hear adult scientists dismiss physical symptoms as being somewhere in the mind. I think here there may actually be grounds in the future for malpractice.

Aries4: Do you have any information on HHV-6 encephalitis?

Regush: Aries4 – There are scientific studies that have linked HHV-6 to encephalitis, like brain damage in both children and adults. Exactly how this occurs is not known.

Mermaid: It makes a certain kind of sense to me that if our immune systems are compromised that preventative treatment would include boosting our immune systems, as it is known that FMS people do not metabolize nutrients properly. It seems to me that if we have any kind of virus, this would indeed help us?

Regush: Mermaid – I agree with you in principle but I guess what I’m trying to get across here is that 1) it’s not clear how one would boost the system function optimally and 2) given the lack of scientific data its not clear whether such an effort would end up making a real difference. And I say this because we live in the midst of many kinds of variables that can affect us daily. We’re not even close to understanding the kind of ongoing harm that can occur to our immune system each and every day. I don’t want to discourage people from trying to boost their immune potential, I’m just saying that this may prove to be more complicated than we’ve come to believe.

Nunu: What are your thoughts on the possible connection of HHV-6 to polio immunizations?

Regush: Nunu – A very good question. It’s entirely possible that certain forms of vaccinations, including the one for polio, can affect immunity in a way that could conceivable reactivate a virus such as HHV-6. I’m only speaking here about the potential. There is no evidence that this is the case.

Prohealth911: Unfortunately that’s all the time we have for today’s chat. Thank you all for joining us.

Regush: Thank you to the people who had questions.

I enjoyed today’s chat.

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