Chronic fatigue syndrome is a disease that has been around for a long time. It s been misnamed, misdiagnosed, mispronounced, misnamed again and again, and misnamed yet again. In this episode, we talk with journalist Hillary Johnson about chronic fatigue syndrome and her new book, Chronic Fatigue Syndrome: The New York Times Bestseller about the disease and its impact on modern medicine, chronic illness, and the way we think about chronic illness and chronic fatigue, chronic fatigue and chronic illness in general, Chronic fatigue syndrome. We talk about the history of the disease, its origins, and how it s been covered up and covered up again. And we talk about why it s so important that this disease be named after a woman, because it s a disease of a woman and a woman's disease, and why it can be deadly. This episode is a must-listen episode for anyone who wants to learn more about this disease, or wants to know more about it, or is interested in learning more about what it s like to be diagnosed with it. and what it means to suffer from it or have it diagnosed and treated and how to get better at dealing with it, and what to do about it . It s a serious illness that affects millions of people all across the country, and it s one of the most common and most misunderstood diseases in modern medicine that needs to be understood in order to get the attention it deserves. in the 21st century a disease people are getting the attention they deserve it needs to have from the medical community to get it gets what they need to get, and how it needs why it matters when it s important to know should be talked about, who it s deadly, and how to treat it, what it really is needs to get can be about it? so they can get it and why they should get it, not , and so much more is a better understanding of it so that it s not just not just better, why they can get better, not less more, how better but more about it s more so much of it, so they can get it?
00:00:09.000She has written for three decades on many, many subjects that are right in the kind of wheelhouse of my interest, including the retroviral cocktails that went and became AIDS treatments like AZD.
00:00:24.000You've also written about the use of depleted uranium weapons by the United States in the Gulf Wars, about public health posed by ever mutating flu viruses, about viral causes of multiple sclerosis, about air pollution induced mortality, about viral causes of multiple sclerosis, about air pollution induced mortality, health effects from Love Canal, which is one of the places where I got my
00:00:50.000Her most in-depth reporting has been about the U.S. biomedical research on sour in the case of myalgic encephalomyelitis, which is also called chronic fatigue syndrome.
00:01:01.000Her science reporting has been published in Rolling Stone, where she was a contributing editor for a decade in Mirabella, in Life, in the South, the New York Times, Working Women, and many, many more.
00:01:18.000Let's talk about chronic fatigue syndrome, because the reason I wanted to get you on here is I read your book, and you can see this is my dog-eared and happily, happily annotated copy, and you've really done an incredible service by writing this.
00:01:36.000Show us the copy of your book, because you have the same thing.
00:01:55.000But everything in it, I mean, so little has changed since then.
00:02:01.000Both our books, for those of you who are listening on podcasts, have at least, I would say, 50 or 60 post-its that are hanging out in various configurations.
00:02:13.000So tell us about it, because obviously I've read your book.
00:02:17.000Well, I did want to say up top that I think I would be remiss not to say that the phrase chronic fatigue syndrome...
00:02:26.000It's a name that was really conjured up by the Centers for Disease Control in 1988.
00:02:37.000But it was a name that was really conjured to cover up the severity of this disease, which actually for decades prior to 88 was known as myalgic encephalomyelitis.
00:02:56.000And let's call it ME to keep it simple.
00:03:02.000It was also popularly called yuppie flu.
00:03:06.000It was back in the 80s when people started first taking notice of it.
00:03:11.000It was seen mainly in women and it was often attributed to The incapacity of women to perform corporate-type jobs, and this was at the beginning of the Women's Liberation Movement,
00:03:27.000when women were beginning to step into Wall Street and other positions of business responsibility, and the psychiatric profession and the National Public Health Services blamed this on women.
00:03:42.000So, you know, that's part of the history.
00:03:45.000Yes, it was a very punishing, punishing name.
00:03:49.000And I'm kind of overwhelmed because everything you're saying, there's so much to respond to.
00:04:00.000That is true, is that one of the reasons this disease has been so ignored, covered up, lied about, funding has been withheld, etc., is that it is a disease of women.
00:04:16.000Now, there are going to be a few men who will be mad at me for saying that.
00:04:19.000Certainly, men do get this disease, but statistically, it's very well known and documented that women get this disease regularly.
00:04:30.000In a ratio of 3 to 1, 4 to 1, could be as many as 80% of people who suffer this disease are women.
00:04:42.000And to get back to the name, now Yuppie Flu was just a jokey name dreamt up by a Newsweek headline writer and It had nothing to do with the real disease, actually.
00:04:56.000But to get back to chronic fatigue syndrome, this was a disease that...
00:05:01.000This was a name that was dreamt up over a period of a year with...
00:05:08.000consultation of a couple of people at CDC and a few, maybe a handful of doctors around the country who either had never seen anybody with this disease or had maybe seen a few.
00:05:23.000In other words, the people who created chronic fatigue syndrome didn't really know anything about the disease.
00:05:31.000The point was, really, it was almost like corporate messaging or corporate branding to put the CDC's brand on this disease and to basically obfuscate the severity of the disease.
00:05:46.000I'll just, you know, shock you and say that this is very likely a transmissible infectious disease.
00:06:19.000And it's just a really tragic event that has occurred.
00:06:24.000And I think one of the biggest misnomers about ME is that it's mysterious and very little is known about it.
00:06:33.000And in fact, it's not mysterious and a lot is known about it.
00:06:38.000You just would never know that because NIH and CDC have kept such a tight grip on information about ME. And it's very interesting to me that I've watched for literally decades now, the CDC and the NIH, especially the NIH, and it all leads to Fauci, I might add.
00:07:01.000They've exerted a tremendous desire to control the information about this disease and to basically sculpt it into something that it's not.
00:07:18.000You know, one of the threats to the Public Health Service on this disease was that it appeared at the same time as HIV-AIDS and that there were a number of scientists out there Who said it's actually the same disease.
00:07:36.000When a gay person gets it, it's called HIV-AIDS. When a woman gets it, it's called chronic fatigue syndrome.
00:07:43.000And there are serious scientists then and today that still believe that that may be the case.
00:07:52.000Well, I do not believe they are the same disease.
00:07:56.000AIDS, essentially, but I will concede, and this is an incredibly important point, that they emerged concurrently as epidemics in the late 70s, early 1980s.
00:08:11.000And in fact, there was a very distinguished infectious disease specialist who gave a talk at CDC in 1983 or 84 that was very well attended in an auditorium filled with CDC scientists.
00:08:26.000Asking the question, you know, is ME, myalgic encephalomyelitis, a subset of AIDS, or is AIDS a subset of ME?
00:08:37.000Because they were, the cases of both diseases were exploding simultaneously.
00:08:47.000But there are many theories about why this may have been.
00:08:51.000ME is an older disease than AIDS. I think the first reported disease Outbreak of ME occurred in possibly as long ago as 1906, but there was a huge outbreak of it in 1934 in Los Angeles in a hospital.
00:09:08.000Right up until the late 70s, early 80s, Most of what was known about ME were isolated reports coming from all over the world.
00:11:07.000The point is, is that not everybody, you have to think what, what affected everybody who got ME?
00:11:14.000You know, some people say, oh, it's a combination of toxins and environment and stress, you know, just make up anything you want because so many people have.
00:11:26.000But not everybody with ME has been exposed to chemicals, toxic chemicals.
00:11:31.000Not everybody with ME is under stress.
00:11:34.000These things don't really, in the end, they don't add up.
00:11:38.000The only thing that truly makes sense, and there's a lot of epidemiological evidence to support it.
00:11:44.000There's one infectious agent that causes ME, and just as there's one infectious agent that causes tuberculosis, one infectious agent that causes syphilis, There's not some big stew or some combination of things that produces this extremely discreet disease that's unlike any other disease.
00:12:10.000And so the big question becomes, what happened in the 1970s and really mostly in the 1980s?
00:12:38.000Maybe AIDS patients who were so severely immune suppressed and were, you know, subject to these, you know, formerly obscure infections like pneumocystis scurrini pneumonia, a bird flu in effect.
00:12:55.000And there was a whole slew of infections that were considered AIDS-defining infections.
00:13:01.000And there was concern that AIDS patients might be sort of a population of That would actually spread diseases like tuberculosis into the general population because they were so vulnerable, because their immune systems were so depleted.
00:13:18.000And it could be that the ME virus Which had been floating around, but, you know, was a really rare, obscure virus.
00:13:28.000It needed certain conditions to thrive.
00:13:30.000It could be that AIDS patients picked up the ME virus too, along with all the other obscure and not so obscure viruses that they were infected with.
00:13:41.000And that in that way, they served as a vector of To spread the ME virus into the general population.
00:13:49.000And also, that would be an opportunity for many different variants of the ME virus.
00:14:07.000Let me, you know, not to pick on vaccines.
00:14:10.000And for those of you who are listening to this and say, well, it couldn't have been a polio vaccine in 1934 because the Sabin and Salk vaccine did not exist before 1953.
00:14:22.000There was actually an experimental polio vaccine that was given for the first time in 1934, and it was the experimental test took place in this hospital in Los Angeles.
00:14:34.000And that was kind of the first major epidemic that people saw of what we now, of the symptoms of what we now call chronic fatigue syndrome, or ME. I'm just going to give you this anecdote.
00:14:49.000Just before the release of the first mass vaccination program with the Salk vaccine, Bernice Eddy, who was a NIH scientist, one of the top scientists most awarded, probably the top woman scientist at that time most awarded in United States history, discovered a Monkey virus in the vaccine.
00:15:17.000The vaccine was grown on a substrat of monkey kidney tissue, and they didn't know it then, but a lot of the African monkeys and Asian monkeys had viruses that couldn't be detected at that time.
00:15:31.000This one virus, which is called simian virus 40, it's called 40 because they found 39 before that.
00:15:41.000In fact, it's used in laboratories today by scientists who want to induce cancer in guinea pigs.
00:15:48.000It literally causes them to shroud tumors.
00:15:52.000Bernice Eddy found this in the polio vaccine, reported it to her bosses at NIH. She was silenced, punished, her career was destroyed, and they went ahead and distributed it.
00:16:03.000This contaminated vaccine to 98 million people, including me.
00:16:10.000But the SV40 virus was not just confined.
00:16:13.000So that virus, which was a monkey virus, was harmless to monkeys.
00:16:18.000It had reached stasis and equilibrium with them where it no longer harmed them.
00:16:22.000When given to humans or other animals, it causes cancer explosions.
00:16:27.000That virus is now throughout the entire human population because it was given two vaccines for a limited number of time, but it got into the blood supply.
00:16:37.000And I suppose it might be possible that some virus at that time in history, if this is a viral disease, That virus could have also become ubiquitous in the blood supply, and of course, we don't know about it.
00:16:54.000You know, I think there was an excellent book written on this topic, Simeon Forty, Many, many books.
00:17:06.000And I think that there have been people who have proposed this as one explanation for the pandemic of ME. I don't think it's been pursued beyond just proposing it.
00:17:19.000But I think, again, you have to come back to what makes the most sense?
00:17:25.000What is the most rational explanation?
00:17:28.000And regarding that, you have to think about the timing.
00:17:33.000Again, this was a very obscure and rare disease.
00:17:38.000Prior to the middle 1980s, when I began reporting on this in early 1986, I called the director of, she was in charge of public health, actually, and infectious diseases at the LA County Health Department.
00:17:58.000She was an excellent public health officer.
00:18:01.000And I called her up, and before I could even get, you know, 20 words out about this disease, she said, I know exactly what you're talking about.
00:18:10.000And she said, frankly, there is no other problem or disease about which we get more phone calls, more so than AIDS. And she said, I'm afraid we may have another tiger by the tail.
00:18:35.000All the money is going to AIDS. And I will also mention that there were other very famous outbreaks that were occurring around this period as well that I wrote about in my book, Oslo's Web, years ago.
00:18:48.000You still have to come back to what happened to set off this explosion of cases.
00:18:57.000I mean, I think the vaccine issue you're talking about with the Simeon vaccine is, you know, very, very interesting and needs more research.
00:19:05.000But I'm not sure that it explains what happened during this time period when this virus started.
00:19:13.000This disease, you know, went from virtually zero to 90 in the space of a few years.
00:19:20.000You know, now there's a scientist at the University of San Diego who has done a lot of research on this.
00:19:28.000He has indicated that, his name is Robert Navio, by the way, for anyone who's curious.
00:19:34.000He's indicated that cases of ME have increased 60-fold since 1985.
00:19:42.000And the conservative estimate right now is that 1% of the world's population has this disease.
00:19:51.000That is shocking and appalling to think that 1 out of every 100 people is suffering from this absolutely devastating, disabling disease.
00:20:04.000And if we want, we can get into the way the federal government Health agencies, and even the FDA, is working in concert with CDC and NIH, and has been for decades now,
00:20:20.000to suppress information about this disease, to suppress funding, so that so many very prominent epidemiologists, virologists, immunologists, biostatisticians,
00:20:35.000etc., who've wanted To work on this disease, who have been able to get grants from NIH for millions of dollars, in some cases hundreds of millions of dollars over their career, but who were shot down on their attempts to get a grant to study ME, and they left the field.
00:20:56.000And this has left a very, you know, over the years, this has been so discouraging to scientists who have been interested, that, you know, nobody really wants to touch this.
00:21:07.000And because it's almost impossible to get funding, and the tiny amounts that are available to do the research, to fund research that come from the NIH, are They're in amounts that normally are called fairy dust funding at NIH. In other words,
00:21:28.000some years there's been $3 million to study IME. Currently, as of this year, they're proposing the next fall that they'll fund three centers, three scientists, To the tune of $7 million a year.
00:21:47.000And anything under like $10 million or $15 million at NIH is considered fairy dust.
00:22:20.000What they do is they develop drugs in partnership with the pharmaceutical industry.
00:22:26.000And they do studies that are harmless and easy to publish.
00:22:30.000The problem with a disease like this is whatever's causing it is almost certainly emblematic of a failure of government regulation.
00:22:41.000So if it's being caused by a toxic chemical, it's going to be glyphosate, it's going to be neonicotinoid pesticides, it's going to be...
00:22:50.000Any of the other chemicals that became ubiquitous in the 1970s, PFOAs or PFASs, flame retardants, Teflon, these are all made by huge and very powerful chemical manufacturers who control congressional committees that write the budgets for NIH so they won't go near it.
00:23:10.000The even worse possibility is that this is vaccine related and the vaccines actually increased in the coterminant with this time period.
00:23:20.000So we went from three vaccines in the 1960s to by 1980.
00:23:26.000Today we have 72 vaccines that are mandated, 72 doses of 16 vaccines.
00:23:33.000And the big change happened in the 1980s.
00:23:36.000The DTP, the MMR vaccine, the hepatitis B, the Hib vaccines, all of these vaccines.
00:23:43.000And if any of them contain viruses, and many of them are grown on the tissue of monkeys or other animals that have viruses, that could jump to humans if they're injected into them.
00:23:56.000And it's a scary thing for NIH regulators to consider that they may be causing these chronic diseases.
00:24:07.000Let me respond by saying first that, as a journalist at Life magazine, I covered Love Canal.
00:24:15.000And I probably spent three or four months in the Love Canal neighborhood.
00:24:19.000And I was just astonished at how poorly the State Health Department and the Centers for Disease Control responded to that problem.
00:24:30.000That was my inculcation, shall we say, into the world of toxic chemicals.
00:24:37.000And for a while, I also felt that virtually every problem, every medical problem in the world could be ascribed to toxic chemicals.
00:24:47.000However, Coming back to ME, I want to give you just a little pushback on what you're saying, all due respect, which is that, again, thinking rationally about this disease, which, as I've said, is very discreet, a lot is known about it, it's not like any other disease, and it's been written about since the turn of the last century.
00:25:15.000So to prove that, for instance, the chemicals you mentioned that were so prominent became prominent in the late 70s into the 80s, you'd have to prove that everyone with ME had been exposed to those chemicals.
00:25:42.000The copper-based pesticides that they used in the 1900s, which were coterminants with the polio outbreaks, operate on the same biological pathways as DDT, which later replace them.
00:25:58.000And I'm making this argument, Hillary.
00:26:01.000I'm just saying there is, this is just a process that you go through where you have to say, okay, what are the exposures that fit the criteria where you have every demographic exposed suddenly showing this disease?
00:26:18.000In the 1970s, what could be the culprits?
00:26:22.000What became ubiquitous throughout the population during that period?
00:26:25.000And it doesn't mean that there weren't smaller levels of the same chemical or similar chemicals before.
00:26:33.000It means something caused that explosion.
00:26:36.000And, you know, we have to look for biological exposure because the genes don't cause epidemics.
00:26:43.000You need an environmental toxin or you need a microbe.
00:26:47.000Well, I think you mentioned genes and I'll just say, I'll just insert here the fact that there's been a lot of speculation and theories tossed out about genetic genes in relation to ME. And there's simply no evidence whatsoever that there's any kind of genetic link to having ME. In other words, But NIH, that's what NIH loves to do.
00:27:14.000They love to look for genetic cause to every disease.
00:27:18.000And it's oxymoronic because genes do not cause epidemics.
00:27:23.000If it's an epidemic, you know it has to be an environmental doc.
00:27:26.000That gene can provide the vulnerability, but it's not going to be the thing that makes you sick.
00:27:32.000But NIH loves to pump money, just throw money down that rat hole because they keep all these scientists employed and they know they're never going to come up with an answer.
00:27:44.000They're constantly, you know, they've got billions and billions routed into studying the genetic cause of autism and zero into looking at vaccines.
00:28:04.000If you know how much money has been wasted looking at genetic issues and ME, I totally agree with you.
00:28:14.000The genetic links are, that's an avenue that needs to end.
00:28:21.000But I'm still going to give you a little pushback on toxic chemicals, even though for many years I was obsessed with toxic chemicals and I thought they were the answer to everything.
00:28:33.000But I've kind of moved over into a new area.
00:28:38.000Yeah, and by the way, you don't have to push back because I don't believe it's a toxic chemical either.
00:29:21.000I'm saying there is a limited universe of what can be caused in this, and we should identify those 20 or 30 causes and then eliminate them with science one at a time.
00:29:35.000That's what NIH ought to be doing, and you and I know it will never do those studies.
00:29:45.000But let me just say that there is so much evidence for infection in this disease.
00:29:51.000The immunology of ME absolutely screams infection.
00:29:56.000Every abnormality in the immune system that you look at in this disease suggests there's an antigen present And the response of the immune system is exactly what you would see when there's an infection.
00:30:12.000And yet, in every other infectious disease, scientists at the NIH say, oh my gosh, there's an infection.
00:30:23.000In ME, it's sort of like, oh, that's very interesting.
00:30:26.000I wonder how the psychology managed to change the immune system in this way.
00:30:33.000I mean, every single important finding immunologically and every other aspect of the disease, abnormal brain findings, etc., are just sloughed off as if they're nothing.
00:31:25.000Number three, having contact with another person with ME. You know, there's a long history of cluster outbreaks of ME, by which I mean, well, epidemics.