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Why Is It Called Chronic Fatigue Syndrome?

Because of a hoodwink perpetrated by the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH). A brazen act of obfuscation designed to cast a smoke shadow over a dispute over the Epstein-Barr Virus Syndrome.

Everyone who read about Chronic Fatigue Syndrome (CFS) knows this official CDC syndrome was written because the their organization investigated a peculiar outbreak at Lake Tahoe, CA in 1985. A mysterious flu-like illness that raged through the North Shore of Lake Tahoe from November 1984-October of 1985.

Incline Village doctor’s Paul Cheney and Daniel Peterson were at a loss to explain this until they read two articles in the January 1985 “Annals of Internal Medicine” that described a new syndrome.

The Chronic Epstein-Barr Virus Syndrome (EBV) is a condition of chronic active EBV from a common virus that causes “The Kissing Disease” or “glandular fever” as it is called in the UK.  

Cheney and Peterson used a brand new EBV serology test which had just been released to doctors. This test confirmed fluctuating EBV levels and sero-conversion to an active state of EBV activation which was in full conformance to the CDC’s definition of Chronic Epstein-Bar Virus Syndrome (CEBV).

A normal healthy adult has little problem beating this EBV virus and keeping it in latency for the rest of their lives, unless something suppresses immune function such as a chemical exposure or cancer.

These two articles were by Dr. James Jones of the National Jewish Health Center and Dr. Stephen Straus of the National Institutes of Health, who had been studying the strange emergence of chronic active EBV across the United States during the 1983-1985 period. But only as a sporadic isolated illness. Not an outbreak phenomenon.

Epstein-Barr virus is known as “The Kissing Disease” because it transmitted by saliva and has a long incubation period of more than a month between exposure and symptoms.

The Tahoe Mystery “flu” Illness went from person to person with a 4-7 day lag time.  It did not fit the profile for the EBV syndrome. As the CDC explained, EBV cannot cause a large epidemic outbreak.

Typically, school teachers and casino workers are not swapping spit and having huge orgies in the way that would be required to cause a widespread outbreak of “The Kissing Disease.”

 Of course, we can’t be sure of this.

This disparity of observations caused a debate between the doctors studying a sporadic EBV disease and Cheney-Peterson, who were reporting a wildfire spread that appeared to be contagious according to the CDC; who reluctantly sent two investigators, Drs. Jon Kaplan and Gary Holmes to Incline Village in September 1985 to check this out.

Dr. Gary Holmes, Epidemiologist for the CDC tried to dismiss the EBV serology test results and ignore the Tahoe outbreak because EBV cannot act like a contagious outbreak in spite of the fact this test showed that maybe something was going on.

Dr. Paul Cheney stood his ground and made the point that in spite of this, the mystery disease fit the parameters of the CEBV Syndrome, in all regards.

So that is where it stood in 1985.

The EBV proponents wanted to study CEBV Syndrome as if EBV were the cause, while the Lake Tahoe evidence showed EBV was only reactivated.

It was easy for doctors to ignore chronic active EBV because they could simply blame the patient for doing something to themselves that would suppress immune function. This made the EBV syndrome nearly a “non problem” in the CDC/NIH and medical profession’s eyes.

“Just take better care of yourself,” health experts told a large crowd of Lake Tahoe residents many Olympic athletes and former healthy adults during a town hall meeting.

A huge outbreak, especially among previously healthy monogamous adults was an entirely different matter.

The nature of an outbreak suggests one thing and the fact of overwhelming teachers and athletes makes it harder to blame the patients. Harder, but as we see, certainly not out of the question, for that is exactly what doctors did.

From 1983 until 1985, the “serious EBV researchers” had been vocal that chronic active EBV was highly abnormal and could lead to cancer and death.  Even if they suspected that EBV might not be the actual cause, the abnormality of fluctuating EBV parameters made this the marker for the EBV disease. Again, a very serious situation. They were right on the verge of obtaining grant funding and massive research efforts into their EBV phenomenon. 

They seemed on the cusp of a breakthrough in overcoming the mentality of doctors to blow off and ignore active EBV. Power, prestige, and NIH funding was within their grasp.

Cheney, Peterson, and the Lake Tahoe Mystery Disease threw a monkey wrench into their plans. Dr. Cheney’s evidence showed that EBV might not even be present in the ailing population to have the same type of syndrome.

As you can imagine, the EBV theorists were furious at having the rug pulled out from under them. This battle raged on from 1986 through early 1987.

Then the head of the CDC’s Herpesvirus division, Dr. Carlos Lopez, called a meeting to decide what to do. Since the debate was over the evidence brought by Dr. Gary Holmes from the Tahoe outbreak, this was called, “The Holmes Committee.”

As expected, the attendees launched into furious argument over what should be the crux of further study. The EBV syndrome or the Lake Tahoe outbreak?

The EBV faction made the case that it was active EBV that was being reported across the USA, so they should be in charge. Those who had seen the Tahoe evidence explained that this was the core of the Holmes’ investigation and this evidence could not be ignored. The factions refused to back down and no agreement was reached.

The default action was to direct Dr. Gary Holmes to devise a research document from which to proceed. Dr. Holmes listed the various possible names: Post Viral Fatigue Syndrome, Neuromyasthenia, Myaligic Encephalomyelitis, the British term for this sort of thing, and his own name of Chronic Mononucleosis-Like Syndrome (CMLS).

The committee could not agree on any of them, as each name pointed back at evidence which other factions found unacceptable. Dr. Stephen Straus, whose EBV syndrome hypothesis had been defeated proposed a provisional name of, Chronic Fatigue Syndrome (CFS).

While “chronic fatigue” and “fatigue syndrome” had been kicked around, the entire “CFS” name had no history, was vague and non specific, did not imply anything about being post viral, or even possessing any background at all. Suggesting nothing more than persistent fatigue.

Of course it was a horrible name and everyone knew it.

Dr. Stephen Straus had hoped he would emerge from this committee with a new syndrome that would be under his control. He showed up with his proposed name of Sporadic Neuromyaasthenia.  He had even elevated CEBV Syndrome to calling it “a disease” because if chronic active EBV is known to result in cancer, that represents a known etiology; the minimum requirement to classification as a disease entity.

It is also documented that Stephen Straus shifted from talking about EBV as serious and disabling to “CFS” as being psychosomatic and so subjective as to be imaginary. How odd, when the EBV serology results had not vanished.

All doctor Cheney did was show that other viral reactivations appeared to be associated with a similar chronic illness outcome.

The circumstances and reports of Straus’ anger at the Holmes’ evidence points to the conclusion that Straus’ push for the trivializing name was due to his ire at having his hopes to be in charge of Sporadic Neuromyasthenia.

Is there evidence for this explanation for the choice of CFS?

Yes, quite a bit.  

Dr. Elliot Kieff (photo above) of Harvard University is an EBV specialist and the most highly credentialed participant in the Holmes’ committee.  He refused to sign as co-author of the Holmes’ definition, giving his reasons that it was too vague. It didn’t even mention the Tahoe outbreak which is what inspired it.

Dr Kieff warned that lacking this, the syndrome would be taken over by hoodwinkers who merely echo the symptoms and use this as a vehicle for their own agenda. The disgruntled Straus reacted to this by directing Gary Holmes to remove even more elements from the CFS definition.

This points to an obvious effort to cause the new syndrome to fail by throwing it wide open to hijackers and hoodwinkers and NO attempt was made by the CDC to remind people exactly why the Holmes’ committee was convened, which could have easily restored the evidential reasons back into this confusing syndrome.

That’s pretty sad when the way to enable hijacking and hoodwinking is predicted, and the means to counter it are laid out, yet the powers at be do the exact opposite as if they are following a game plan to guarantee maximum confusion and ultimate failure of this research endeavor.

This episode tells us a lot about the CDC and NIH. But even more, it unveils much about the medical profession itself. The insiders of the CDC and the NIH took a gamble that the medical mind is a hijacker mind, and they proved their case.

Big time.

They stuck the world with a syndrome that has a bizarrely counterproductive name.

Writer: Erik Johnson, Education and Research Director, Exposing Mold Inc.

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