There was a brief moment in 1986-87 when the CDC almost appeared as if it were going to take the "Tahoe Mystery illness" seriously.
Then, suddenly the carpet got ripped out from under us, almost as if they had received strong instructions "From Above" to minimize the incident and make the illness seem unimportant.

Dr Byron Hyde discusses this a bit in his "Little Red Book" under the section "Business comes first", and it is also mentioned in Hillary Johnon's book "Osler's Web", so you'll know that I'm not the only person who talks about this strange event.

While '84-'85 had been a very good year for snow,
up at Lake Tahoe, the snow levels thereafter were very poor, and the ski economy was suffering greatly, which put intense financial pressure upon the locals.

This was before the ski resorts had acquired snow-making equipment, and the lack of snow hit us all very hard. Businesses were laying off workers and closing. The entire North Shore was literally "rolling up the sidewalks" and shuttering the windows of businesses.
Then what was later called "The Yuppie Flu" swept through our little town, and scared us all to death.

The prolonged debate and difficulty that it took to drag some kind of investigative response from the CDC is described in Osler's Web, but the fact that at the very beginning, nobody "official" was responding made the epidemic seem as if it must not be important, for if it were, surely the government would have jumped right on it... wouldn't they?

That all changed when CDC epidemiologists Gary Kaplan and Jon Holmes finally arrived, to investigate the "Tahoe Mystery Illness".

Their very presence gave the illness an "assumed authenticity", and the whole community was holding its breath, waiting in dread for whatever the pronouncement from the CDC turned out to be.
And then, whatever vestiges of the slight interest the CDC had in getting to the bottom of things, seemed to vanish with a shocking suddenness that took us all by surprise.

Instead of a thorough investigation, all of the CDC's efforts turned to debating Dr Cheney and Dr Peterson on every point - every bit of evidence was disputed or discounted as if it meant nothing.

It was a shocking kind of reversal. Rumors went around Incline Village that the local business leaders had approached the CDC and told them that any further bad publicity would be utterly devastating to the Tahoe tourist economy, and they could take no more. There might even have been violent confrontation between townspeople, and the "sick people who had an agenda to destroy the economy"... as they constantly told us.

And while it was true about the economic damage, we were torn between wanting help for our illness, and the horrible unwanted national attention which the epidemic had created.
This bad publicity WAS destroying the economy, but was it our fault? For "committing the crime of becoming ill" when others had somehow got through it?

The CDC solved the problem for us by announcing there was "No evidence for any fatiguing illness", (although there was) and dismissing the entire incident as some kind of mass-hysteria that had been created by inadvertant collusion between;
"Weird Tahoe people and two suggestible doctors who were overly influenced by listening to their hysterical patients".

It seemed inconceivable that the CDC could truly be doing this to us.
We tried to convince ourselves that they had deliberately tried to do us a favor of covering up the extent of the epidemic... but that they were going to quietly look into it later.
This would help restore the economy and calm the public's fears. It seemed that this would have been a good plan.

So the ridiculously benign "CFS" nomenclature that was later devised, did not trouble us much at first, and seemed to be part of a good plan.

If this had been true, it would have been an excellent way to quell the societal and financial problems created by the epidemic, and create leeway for a subdued scientific investigation.

Instead, what started as a kind of innocent suppression of information about the phenomenon built momentum, and the CDC's efforts turned more to "covering up the cover up" more than resolving the real problem, and ultimately, the CDC disengaged itself from doing any research into the original "Flu Like" illness which had first brought them out to Lake Tahoe.

In really good winters, the ski tourism was great, the economy booms and Lake Tahoe would have been far better able to absorb the "unpleasantness" of a strange local illness. I cannot swear that this strange "CDC reversal" wouldn't have taken place anyway, but it appears that concerted effort by local business interests might have been placed upon the CDC to do something to keep the "hysteria" under control.

So it would have been at this precise point of "intercession" that the peculiar actions of the CDC really began... and eventually led to the trivial "denaturing" of the illness, with its "half truth" portrayals.

Crazy as it sounds, it may very well be, that the pathway to "CFS" and its intentionally trivializing syndromic nomenclature and description, might have originally been set in motion by "lack of snow".

-Erik Johnson

Incline Village CFS survivor

In my irateness to write the mesage above,
I mismatched the names.

The epidemiologists sent to Incline were, of course, Jon Kaplan and Gary Holmes.

When Gary Holmes left town, saying that he didn't think we had an epidemic here, little did he know the events that this one comment set in motion.

All the people who had been holding their doubtfulness about the illness to themselves now considered themselves validated by the CDC itself.

Later, Holmes said that he hadn't outright denied the illness, but just stated that he wasn't seeing enough evidence to state that it existed.

He wasn't there, to witness the backlash that his innocent comment unleashed upon us.

-Erik Johnson

Thank you so much for bringing attention to this horrendous "study".

When cluster outbreaks of a mysterious, disabling disease occurred in the mid-1980s - at North Lake Tahoe, in Hollywood, in Sacramento, in the Bay Area, among symphony members in Raleigh NC, in upper-state NY, in south Jersey ... I could go on ... the CDC's immediate impulse was to prove it didn't exist. Johnson published a well-documented book about this ten years ago, but it remains invisible.

Researchers familiar with the diagnosis Myalgic Encephalomyelitis in England (M.E.) [since the mid-1950s], which had an ICD code in neurology and in the U.S. was called Epidemic Neuromyesthenia, immediatly recognized that this was what was happening. The CDC and NIH not only rejected that assertion - they IGNORED it. At first they had sugested it was chronic Epstein-Barr Virus (mono), but they discarded that idea by 1986. In the 1988 article by CDC researcher Gary Holmes et al introducing the name "chronic fatigue syndrome" to the world, there is not a single footnote referring to M.E. or epidemic neuromyesthenia - although the co-chair of that committee, Stephen Straus of NIH, wrote precisely that in an article published the same year. He also mentioned earlier outbreaks of what was called "atypical polio" that many believe were cases of the same illness.

Straus went further. Following the direction of British psychiatrists, he also suggested that the disease was "really" hysteria or neurasthenia - two outdated terms applied to women who - basically - failed to remain within their roles in the 1800s. Straus, head of the National Institute of Allergies and Infectious Diseases at NIH, increasingly insisted the disease was "somatic" - a physical manifestation of an emotional problem, mainly an inability to handle "stress." So Straus now gave public interviews about the disease being psychosomatic, yet kept it in NIAID instead of handing it off to NIMH. And this was permitted.

For the record, 98 of a sample of 100 patients from the Incline Village outbreak described by Johnson turned out to have a new, unique immune defect discovered in 1994 by Dr. Robert Suhadolnik at Temple University, and confirmed by French researchers Bisbal and LeBleu. The defect is in one of the biochemical pathways to fight viruses, and it involves "Rnase-L" that is truncated in half, weighing only 37kDa when it should weigh 80kDa. Most of the patients (not all - Erik was an exception) - have had chronically recurring Epstein-Barr Virus. Almost all have a low natural killer cell function. Many have HHV-6, Variant A, a disease first discovered at NCI by Dr. Dharam Ablashi and others among AIDS patients. Many also have cytomegalovirus (CMV). Almost all of those who have these markers have improved on treatment with an antiviral/immune moderator combination.

The second effort by CDC to define the disease was published in 1994 by Fukuda et al, and the authors were explicit in stating that future research should focus on the identification of subgroups using biomarkers.

We're there. The Peterson subgroup is one of several that can be identified by biomarkers. I never set foot in Nevada until 15 years after I first fell ill, but I have the Peterson markers, and I have improved on an experimental antiviral/immune modulator. I have testified about this to the people at NIH who are in charge of funding for research into "CFS", and Dr. William Reeves, who runs the CDC's program on "CFS". Last spring I gave the same testimony I gave a decade earlier, because NOTHING HAS CHANGED.

That's not quite accurate. Something has changed. The CDC has abandoned the Holmes and Fukuda definitions - which required physical symptoms and, for research purposes, that depression be exclusionary. According to research by DePaul psychologist Leonard Jason, questinnaires developed by CDC to make it easier to "diagnose" according to their "new definition" miss entirely the patients with physical symptoms who were the ones in the original cluster outbreaks. At the same time, CDC includes patients with depression without waiting the required five years for depression to have resolved before the onset of "fatigue" (as they claim).

It is all based upon a cooked data set - a two-day Wichita hospital stay where 227 patients were enrolled, including 58 identified as having "CFS" acording to the Fukuda definition during a community survey. OF THE 58 BROUGHT IN WITH "CFS", 52 WERE DISMISSED AS NO LONGER HAVING "CFS". They added 4 who could now be diagnosed with CFS [Fukuda]. Then they used their questionnaires and came up with a group of 43 who had "CFS" according to their questionnaires - but only 10 - at most - had CFS according to the definition the CDC was supposed to be using. The rest had depression or just "chronic fatigue".

CDC is now using these questionnaires in further studies, and both CDC and the CFIDS Association of America, which participated in these decisions and refuse to answer concerns about the quality of this Wichita hospital data set, are trying to push the data set unto other researchers.

Thank goodness CDC has not had money for CFS in the past five years, or things would be worse.

* The CDC and NIH both need a GAO investigation into the misapplication of funds and, in the case of CDC, the misrepresentation of research.

* The government must give up this propaganda aimed at depicting a serious disease as a constitutional inability to "handle stress" and focus instead on biomarkers, homogeneous subgroups, truly objective testing, and treatments.

* Hopefully the incoming administration will listen to the Chronic Fatigue Syndrome Advisory Board (CFSAC), commissioned by Congress to advise DHHS, but ignored by the Bush administration.

The DePaul reseach indicates one million adult Americans have this disease. Using their broader definition, the CDC insists 4-7 million adult Americans have this disease. Virtually nothing has been spent on it at either NIH or CDC since 2003. CDC acknowledges that at the least, 85 percent have no diagnosis at all - and I can assure the readers that those who do not have a diagnosis, and cannot get into the practice of one of a handful of true specialists (who keep up with the large and growing literature on the biological nature of the disease) cannot find doctors who have the slightest notion what to do with them.

What would a person DO who has what I have - active EBV, HHV-6 encephalitis, and CMV? I have abnormal brain scans, abnormal cardiovascuar functioning, abnormal thyroid function - a year after losing the antiviral/immune modulator to the whims of the FDA, I am re-descending into a severe illness. I do not want to go back to where I was - unable to function well enough to minimally care for myself. I could make it back and forth to the restroom holding on to walls and a cane (and with my golden retriever helping prop me up) - and that was it. With the immune markers and viruses reactivated, I am descending a world of pain and confusion that I thought I had escaped. My prognosis will be for a death 20 years earlier than my genes would have predicted - or even earlier than that. The 23-year-old son of a dear friend died of viral myocarditis in his sleep in the summer of 2005 - with nothing but a "CFS" diagnosis. The doctors he saw heard the CFS diagnosis and could not find anything physically wrong with him. They suggested it was psychological - his parents were projecting his mother's disease unto him. Some even laughed. Yet his heart was dying.

WHAT DOES A PERSON DO WHO HAS WHAT I HAVE, AND IS NOT TESTED, OR DIAGNOSED, OR TREATED - and has no family to care for them, as I did? Where do you go when you are desperately ill in this society, and you cannot get disability (as happens to most patients with a CFS diagnosis, and must happen to those with no diagnosis).

What kind of nation allows this cruelty to continue?

Dr Mary Schweitzers statement that the CDC had abandoned their EBV concepts by 1986 is perfectly true.
But it is also important to understand that the CDC did not do this as a result of their own investigations into the illness.
Nor was this acceptance of the Non-EBV evidence entirely of their own accord, as this required that a completely different name be developed for the "CEBV Syndrome."

In fact, when Stephen Straus first saw this evidence in the "Tahoe Study", he was not pleased about this at all.
-Erik Johnson

Osler's Web
Inside The Labyrinth of The Chronic Fatigue Syndrome Epidemic
by Hillary Johnson

page 321 The Lie

*Byron Hyde, the Ottawa clinician who specialized in CFS, recalled some years later that he was seated next to Straus at a 1987 meeting on chronic viral disease at the Centers for Disease Control when Gary Holmes passed out copies of his just-published Tahoe study. While it did little to advance understanding of the mechanisms of the disease, the article certainly cast serious doubt of Epstein-Barr's role in causation. Hyde recalled vividly Straus's reaction to the paper. According to Hyde, Straus began talking to himself out loud as the scientific purport of the paper sank in: "He held a monologue that lasted at least two minutes," Hyde recalled. "I thought he was having a nervous breakdown. He kept saying, 'They've ruined me. What will my colleagues think? These goddamn patients!' He seemed to be taking it personally, and talked as if the patients had banded together to destroy him."

-----------------------------------------------------

I agree with the propaganda aspect of this and that it is a horrible thing that people are always trying to make these type of diseases "psychological."

As I read it, tho, one thought came to mind. If a child was under fairly continual abuse (and I mean real abuse) for years during their developing years, is it possible that for some of them that could effect their immune systems. It seems that the adrenals and all the systems of the body would be working overtime to maintain some PHYSIOLOGICAL balance as the glands and chemicals that would normally just be realeased occasionally in a young one's life were constantly assaulted.

It seems that perhaps for some children this could totally over-tax the immune system and maybe even damage it irrevocably.

These may be stupid insights as I have no knowledege about this except having experienced both. But I have no knowledge about what constant abuse does to a child's immune system. It just hit me that it maybe could in some children have a extremely detrimental and possiblly permanent PHYSICAL effect.

Even if one COULD traumatize children into succumbing to CFS...
which strangely, didn't used to happen, although we know that children have certainly been beaten throughout the history of humankind...
That still wouldn't help all of us who weren't traumatized.

But perhaps, if it would pursuade researchers to do more research into CFS... we could all PRETEND that we had been, just to make them happy.

-Erik Johnson

Why don't they do child abuse studies on people with Multiple Sclerosis, Lupus, Arthritis? Why us?
If researching the psycological "child abuse" approach had been used on all chronic illnesses before their causes were known we would be in the dark ages. I remember when a stomach ulcer was said to be caused by stress alone. I had a "A type personality" friend who suffered for years from that before the real medical cause + treatment was found.
I really really want some very famous and very rich billionare to get this illness very severely or for their own loved one to get it. That is a horrible thing to wish but it could help me stop suffering from this obviously real physical illness by forcing some real research to be done on it.

The Emory study did not say that a majority of people with CFS had suffered abuse. It said that they had a six-fold greater chance of having suffered abuse. This is a vast difference.

Standard scientific method relies on healthy controls, since we cannot know if the study would be contaminated by other factors in non-healthy controls.

The remarks ignore the fact that this study was published in a journal of psychiatry, where it is normal to look for psychological/psychiatric factors associated with disorders.

Please don't comment on studies if you do not have a scientific background. The comments will be misleading to many with less education and experience.

I'm coming late to this post, but thanks so much for calling attention to this poor excuse for a study. I linked to your post on my own blog.

Barbara: You don't need a highly technical scientific background to recognize bad methodology. Read the actual criticisms of the research. If psychologists want to test for the influence of psychological factors, fine. But if they define their experimental group to include people who don't belong in it, their results are meaningless.

Your familiarity with the scientific method may be deficient if you are unaware of the multitude of medical studies that use other disease groups as controls.

For instance, in 2002 Taylor and Jason investigated this same question using as controls people with other medical conditions. Among all groups, the incidence of early abuse was comparable. Among the “CFS” group in particular, these investigators reported, “most individuals with CFS do not report histories of interpersonal abuse.”

That the study in question appeared in a journal of psychiatry is, I think, irrelevant to the larger point. The Centers for Disease Control created a definition of the disease that erroneously includes people with psychiatric disorders, as independent studies have demonstrated. Add to that the fact that this agency has for more than two decades ignored the bountiful science that proves that the disease is not a psychiatric disorder. This latest study is a new low point in what has been, cumulatively, a flagrantly irresponsible response by the Department of Health and Human Services to a public health crisis.

Finally, shall we send the thousands of science writers over a cliff? Would you be comfortable if only military generals were allowed to “comment” on the workings of the Pentagon (in order to avoid misleading people with less education and experience)?

The trivialization of the evidence was just too much of a strange loss of interest to make any reasonable sense.

As Kaplan and Holmes investigation progressed, yes, they were doubtful and dubious at all times, but at first things seemed to bemoving along in kind of an orderly "Show me the evidence" manner.

We were very hopeful, back in those days.
The CDC was finally on the scene, and we figured that we were on our way to a real investigation.

Once you have your "foot in the door", the CDC cannot just go backwards and step back, can they?

Now that they have seen that there WERE abnormal signs of illness, a medically trained person can't possibly "Unknow" what he has seen.

One can pretend they didn't see them, but if they have any kind of a functional memory... others will recognize that if they deny having this knowledge,
or fail to ACT as if they know,
something is clearly wrong with this picture.

That's what happened in Incline Village.
We believed that it wouldn't take long for people to see that the CDC couldn't possibly be serious about saying there was no evidence for illness, when we had all those abnormalities written down in our medical charts.

The CDC began to act as if they hadn't seen evidence that we KNEW they had seen.
We were stunned. A medical mind cannot do this. What were they doing?
WHY were they doing it?

If they had effectively demolished Dr Cheney and Dr Petersons evidence, that would have been one thing.
But the CDC did not.. they just "stepped back" and acted as if the evidence meant nothing.

The CDC tried to push the "mystery illness" into the psychological "box" so hard that it seemed that they didn't even care that others might notice that they were literally breaking their backs trying to smash it down.

Psychological symptoms became the only important ones to the CDC, while the physical ones were all deemed lacking in proof because they didn't point at a specific known illness entity.

Which, of course, was the reason why Dr Cheney and Dr Peterson had called them for help in the first place.

The swiftness with which this peculiar derailment of what should have been a purely scientific medical-investigation came about after enough abnormalities had already been seen, that this seemed to say that only some sort of directive from above could have accomplished an effect like this.

Other than a complete and total memory lapse on the part of the CDC epidemiologists, what else could possibly have done such a thing?

-Erik Johnson

As someone who suffers from CFS, I can say that nobody can pinpoint a singular root cause. I have noticed, however, that most people who have CFS are gifted and above the average intelligence. Perhaps they should do a study about that.

The problem with most psychologists, is that they try to say that CFS is in your head. They're just out to make money.

Interesting post here on this AMYGDALA gland, child abuse, and CFS. It does point to a BIOLGICAL MARKER for CFS and this gland is involved in memory which is impacted in CFS. Maybe some people experience shrinkage of this gland because of childabuse and others with CFS due to other problems such as viruses, so this could help researchers find treatments, diagnositic markers, and causes of this disease.

I think we should pay attention to what this study tells us about CFS and the Brain instead of making it a debate among those with CFS who were and werenot victims of abuse.

Chronic Fatigue Syndrome (CFS) is a syndrome that has only recently been described by the medical profession. Once controversial, it is gradually becoming accepted as a valid diagnosis by medical professionals. Typically CFS follows a viral infection (e.g. cold or viral stomach bug), and is sometimes found after mononucleosis infections. Non-specific symptoms of fatigue, tiredness, exhaustion, and aches make CFS difficult to diagnose and similar to other conditions such as lupus, multiple sclerosis, fibromyalgia and Lyme disease (among others). CFS and fibromyalgia share many common characteristics, and may be misdiagnosed as each other, and either condition is often misdiagnosed as depression.

I have set up a petition during the week to complain about the CDC using the empirical/Reeves definition for CFS research (the definition that was used in this study). Just to point out that I have had concerns about the definition since mid-2007 when I first read the full paper describing exactly what was done (this can be checked by googling my name).

The petition might help complaints about the definition at the upcoming CDC meeting about their plans for the next five years or other meetings such as CFSAC meetings. For anybody interested, the address is
http://CFSdefinitionpetition.notlong.com i.e.
http://www.ipetitions.com/petition/empi ... _research/

Anyone anywhere in the world can sign it and comment (many people from outside the US already have).

Without a proper definition, we can have little confidence in research. All sorts of research can be interesting but if the research includes a very heterogeneous group, it's usefulness isn't very high.

Actually, the fact that people whose AMYGDALA was damaged by extreme childhood stress are morel likely to later of CFS does in fact help support the viral etiology of CFS.

Whenever the body is under stress (where the sympathetic nervous system dominates over the parasympathetic nervous system), this tends to shift immune response from its Th1 mode into its Th2 mode.

Now, to fight viral infections, you require a Th1 immune response, not a TH2 response. But if your immune system is shifted into Th2 mode by your general stress, you will find that viruses are not easily cleared, and they may continue running amok in your body as a long-term infection.

Thus it is clear that a damaged amygdala that is stressed will make it much easier for a viral infection to take hold and cause CFS. Whereas someone who is by nature relaxed will fight of the virus more easily, as their immune system has no problem entering into Th1 mode, where it can fight the virus.

So this research is in fact in very much keeping with the viral theory of CFS

I'm married to a man who was physically abused as a child & he is perfectly healthy.

Me, not abused, & have CF from Ehlers Danlos syndrome and secondary autonomic/orthostatic issues.

It wasn't diagnosed until I was over 40 and it is genetic so I've had it all my life.

To all the physicians who still persist in lumping all undiagnosed/misdiagnosed cases of fatigue and myalgia as psychosomatic or "hysteria" - I wish you upon yourselves.