Category Archives: CFS History

How To Make Sure An Invisible Disease Stays That Way

Update to CFS – The Invisibled Disease – by Khaly Castle

Would you like a dose of outrage?  Try this.  30 years later, and we have proof.  Not proof that this illness is real.  Not proof that it is biological.  We know these things.  No, I’m talking about proof that the research community at large IS NOT INTERESTED IN RESEARCHING THIS ILLNESS.  NOT EVEN A LITTLE BIT.

Originally published and completely written by Erik Johnson on September 8, 2015, “CFS – The Invisibled Disease” recounted the history of how a syndrome was made to disappear before our very eyes.

https://cfsuntied.net/2015/09/08/cfs-the-invisibled-disease/

Erik’s article documents the events that culminated in the creation and subsequent undermining of the Chronic Fatigue Syndrome.  He says:


Two teachers from the Truckee teachers lounge happened to be in Peterson’s office when CDC epidemiologist Gary Holmes was there.  They asked to see him for something that was on their minds.   Gerald and Janice Kennedy, along with Irene Baker, wanted to know why the flu-like illness could rage through the school, but the teachers IN that lounge were the only ones who didn’t recover.

Gerald Kennedy spoke of his speculation that perhaps the fumes from the copy machines made the difference, or perhaps something bad in the filters from the heating system.   Could a toxic exposure be responsible for allowing the virus to take hold?

Gerald recounted, “I remember telling him (CDC epidemiologist Dr. Gary Holmes.)  about the filters. You could tell he though we were a bunch of loonies.  That was early into it, and we were still thinking, Well, maybe we ARE crazy.  But you would think we would be questioned, at least, and there weren’t a lot of questions.  He just nodded his head.  He seemed to have already made up his mind about us.”

Now… think about it.  What did Irene, Gerald and Janice ask for?

Did they say “Please Dr. Holmes, help us with the horrible virus”?

No, they wanted to know what it was about that room which made the difference.


Here’s the bitter irony:  Over the last few weeks, history has almost exactly repeated itself.  Same players, same location, same results, 30 years later.

On Sunday, August 7 2016, Simmaron Research hosted a patient update event in Incline Village, Nevada.

Dr. Daniel Peterson, one of the original two doctors at the Incline outbreak, was present, as were Drs. Hornig, Knox, and several others.

Also in attendance were the CDC, represented by Dr. Elizabeth Unger, and Truckee High School, represented by Erik Johnson, PROTOTYPE appointed by Dr. Cheney, who came armed with a load of documentation from the original outbreak, and who made the same request that was made 30 years ago by Irene, Gerald and Janice..to look into what was there at inception.


Erik Johnson took the opportunity at this meeting to offer documentation -from the outbreak that started the syndrome CFS-to researchers present at the Update.  He also offered to take anyone who was interested, including Dr. Unger, on the CFS History Mold Tour, as described in this blog:

https://cfsuntied.net/2015/05/28/darkday/

Simmaron’s “Patient Update”, August 7 2016.  Dr. Unger from the CDC in the foreground, with Dr. Daniel Peterson standing behind and slightly to the left:

Simmaron Unger Peterson

Erik Johnson, prototype and survivor of the Incline Village inception of the Chronic Fatigue Syndrome.  Peterson and Unger still in the background:

Simmaron Unger Johnson

Erik Johnson sitting and chatting with Dr. Elizabeth Unger, who is holding the documents that were just given to her AT THIS MEETING by Erik Johnson:

Simmaron Johnson Unger 2

Dr. Elizabeth Unger of the CDC looking through the documents given to her by Erik Johnson, while Dr. Peterson hovers closely:

Simmaron Unger Peterson documents

To be fair, the only researcher present who showed interest in the documentation Erik brought…was Dr. Unger from the CDC.  The folks at Simmaron were dismissive, and actually told Erik that he was being rude.  There you go.  I think we all suspected that researchers weren’t the slightest bit interested in what patients have to say.  But how despicable for researchers who were actually there at the inception of a syndrome to completely brush off their own appointed prototype, who presented solid documentation from that time period which never was given consideration.

As far  as Dr. Unger goes….

Here’s the solid proof that there is no interest in pursuing real research into the Chronic Fatigue Syndrome.

9/12/2016

Dear Erik,

Thank you for your message. I have read the information you provided about mold at Lake Tahoe. I have made inquiries at CDC about how mold exposure is approached and have learned methods are not particularly reliable. I appreciate your offer to provide more information, but it is not necessary at this time.
Best wishes,
Beth Unger


In closing, I (Khaly Castle) find the entire CFS research community to be contemptible.  Whether or not a researcher finds anything is not the issue.  Whether or not a researcher can be bothered to LOOK is the primary qualification for being a researcher.

 

++++++++++++++++++++++++++++++++++++++++++++++++

Documentation provided to Dr. Unger and others included the following:

Truckee, California. Coincident with, and reported as part of an outbreak of CFS in northern Nevada and Califor-nia [13, 17, 24], nine of 10 high school teachers who used a single, small, poorly ventilated conference room became ill sequentially. All nine teachers required a leave of absence, and two retired. Eight teachers remain ill 5 years after the onset of the outbreak. The one unaffected teacher spent less time than the others in the conference room, often doing his wor…k outdoors. The conference room was one of four rooms serviced by an all-water heating system installed in 1985. It functioned by using variable air flow over a coil filled with hot water. The fresh-airv ents were sealed with no other sourceo f fresh air available. There were no functioning windows or air con-ditioning. A spirit duplicator and two coffee machines were in the room. The onset of illness was generally sudden, evolving over 1 month, and fatigue was the predominant symptom. Headaches, myalgias, and dyspnea were other common com-plaints. Photophobia was often noted, with difficulty keeping the eyes open even in darkness. Many individuals experi-enced recurrent sinusitis. The prevalence of severe fatigue is noted in figure 1.

http://www.ncbi.nlm.nih.gov/pubmed/8148452
Clin Infect Dis. 1994 Jan;18 Suppl 1:S43-8.
Concurrent sick building syndrome and chronic fatigue syndrome: epidemic neuromyasthenia revisited.
Chester AC, Levine PH.
Georgetown University Medical Center, Washington, D.C.
Sick building syndrome (SBS) is usually characterized by upper respiratory complaints, headache, and mild fatigue. Chronic fatigue syndrome (CFS) is an illness with defined criteria including extreme fatigue, sore throat, headache, and neurological symptoms. We investigated three apparent outbreaks of SBS and observed another more serious illness (or illnesses), characterized predominantly by severe fatigue, that was noted by 9 (90%) of the 10 teachers who frequently used a single conference room at a high school in Truckee, California; 5 (23%) of the 22 responding teachers in the J wing of a high school in Elk Grove, California; and 9 (10%) of the 93 responding workers from an office building in Washington, D.C. In those individuals with severe fatigue, symptoms of mucous membrane irritation that are characteristic of SBS were noted but also noted were neurological complaints not typical of SBS but quite characteristic of CFS. We conclude that CFS is often associated with SBS.
PMID: 8148452 [PubMed – indexed for MEDLINE]

ElkGrove1

 

ElkGrove4

ElkGrove3

From Erik:  “When the schools were first examined, it was using AIR SAMPLING.. back when it wasn’t known that it would miss Stachybotrys.  And back then finding ONE SPORE of Stachybotrys meant “Run for your life”.”

CFS: The November Factor

Guest Blog by Erik Johnson

Now that it’s that dreadful time of year again, let me tell you about the November Factor, a phenomenon that was reported immediately in both the Lake Tahoe and Lyndonville outbreaks of ME/CFS – a season where people seem to fall apart for no apparent reason.

The best doctors can come up with is “Seasonal Affective Disorder”, lack of sunlight and stress of the holidays.   But I think there’s a bit more to it, based on what I saw at the inception of CFS.

It’s a a long read, but bear with me. I’m going somewhere with this.


From Jean’s Desk – The November Factor
By Jean Pollard

( Previously available at the following url, but has been taken down:  http://www.pediatricnetwork.org/lyndon…/…/novemberfactor.htm)

Published in Lyndonville News, November 1999

I have been  trying to think of what to discuss in my article this month. I am sitting  here going crazy with our schedule, trying to fit in the CFS patients, and  it occurred to me that the reason we are so busy is that it is October.

Suddenly, wham…I realized that IT IS OCTOBER. You may or may not know what  that is, the November Factor. This little known observation for us in the  scheduling end of a CFS medical practice will tell you that this phenomenon  is REAL. I totally believe that this is real, and so do other offices who  deal with patients. A relapse generally occurs for most patients during this  time period of October-November.

Many years ago, hmmm…, around 1987, we  noticed a huge amount of calls from patients around the fall saying they  felt terrible. They had done OK over the summer months, but suddenly they  felt terrible and had more severe symptoms or even new ones.

We sat down one  day, each with our coffee, tea, or Pepsi, around a table and went over every  conceivable reason why people with CFS start to relapse in the fall. We  considered the weather, people turn their furnaces on in the cold weather.  The sun is now lower in the sky and the clocks are turned back…creating a  darker atmosphere, and very little sunshine or Vitamin D exposure. Perhaps  more infections since people are cooped up in their houses and are generally  exposed to more contagious agents, no more fresh air, etc. Nothing seemed to  fit.

To this day, we still are dogged by this phenomenon. Also, in the  spring around March and April, this also occurs but not to the degree that  autumn seems to bring. I, personally, feel that it is a real factor in the  illness of Chronic Fatigue Syndrome and I lie awake at night wondering what  the precipitating event is that causes these relapses. It does happen.

For  those of you out there reading this, I would love your input as to what you  think plays into this. Does it happen to you? Your children? We always thought the school issues played a big part in these relapses because the kids are going back to school after having a respite for the summer from the  stress and anxiety of school connected woes…homework, up early, extracurricular activities associated with school events, socializing,  dating, etc. However, the spring produces the same problems and the kids have been in school all year (except for those home tutored of course).  Adults, however, have not had that hiatus from school. They have already worked all year around…so the fall or spring should really have no bearing on their symptoms. But it does. It drives me crazy trying to put the pieces of that puzzle together. There is an answer, but what is it?


http://www.prohealth.com/library/showarticle.cfm?libid=16048

“The November Factor”: Dr. Bell on ME/CFS & the Flu that Isn’t Flu

By Dr. David S Bell, MD, FAAP* • www.ProHealth.com • March 30, 2011

 

If robbery is taking without permission, CFS could be the greatest thief of all.

Certainly much has been stolen – the energy to go to work, to play with your children; the ability to enjoy reading a book; the luxury of a refreshing sleep. And, like true, great crimes, the victim sometimes does not even realize that a robbery has been committed.

It is as if the thief in a department store steals the surveillance camera along with the jewelry. The thief of CFS steals not only energy, it may rob the victim of the ability to perceive loss. And the mechanism is simple: Energy is quietly replaced with guilt.

Because the victim feels guilty about experiencing fatigue, the robbery goes unreported. Is it any wonder that this is a controversial illness?

The gift of human nature is the perception of who and what we are. We see ourselves either accurately or inaccurately dependent upon personality and the myriad of factors we call life. We see and feel, relating these experiences to our image of who we think we are. Because fatigue is something to be ashamed of in our society, it may go unreported.

The thief makes off with the priceless essence of our life and replaces it with a plaster statue of guilt. CFS becomes a thief of identity as well as activity. It is possible to say “I am an athlete,” or “’I am a devoted parent.”

When CFS has crept out the back door with energy and hope in a burlap sack, these statements are no longer possible.

It makes no difference whether they were accurate to start with. Even if a fantasy, they were a real fantasy for us. With CFS, even fantasies and dreams are stolen. It is like the movie The Dark Crystal, where the small victims are placed in an evil machine that sucks out their ‘vital essence’. CFS is the thief of the ‘vital essence’.

CFS will do to medicine what quantum mechanics has done to physics. The laws, once considered inviolable, are turned on their head.

Just as we were comfortable with the simplistic notions of physics before relativity, doctors are comfortable with the simple notions of medicine now. It really makes little difference that these notions are incorrect, except to those who are not helped by modern medicine.

When CFS becomes accepted and understood, the simplistic mechanisms will be replaced by theories that are able to explain what is now considered subtle. And, of course, with this understanding will come effective treatments – not just those to improve the symptoms of CFS – but those that will revolutionize medicine.

An example of an illness assumed to be straightforward but is, in fact, bewildering, is the ‘flu.’

A person will say, “I was well until a year ago February when I got the flu.” Or “In the months before I got sick I kept getting the flu.” Or “My immunity must be low because I have had the flu three times this winter.” And of course, when the doctor has no idea of what may be causing your symptoms, comes the standard, “I think it is the flu.”

The longer I study medicine the less I understand about the flu.

Jason Ewing was in his mid-thirties, and apart from being a little overweight, appeared like many up-and-coming executives who trooped into the company offices in the morning, brief case swinging at his right side. He had a promising career until two years ago when he developed a typical case of the flu. Actually, as with many persons with CFS, there was one minor difference. This flu had more-than-usual exhaustion associated with it.

It is a detail frequently overlooked, and it has always been difficult to tell whether there really was more exhaustion with this first flu or whether now,  two years later, the fatigue is remembered more prominently.

But at the time Jason took time from work and returned, still not feeling well, a week later. He had not even bothered to see his doctor during the illness because ‘it was just the flu.’ Two weeks later he had crept almost to the point of recovery, and paid it little attention. He was at work when the flu came back a second time.

Jason noted with clarity that this second flu episode was identical to the first.

Not just a similar illness, but the same illness. And now we are getting into strange territory. If a person gets a cold, we assume runny nose, cough, sore throat. But, like ice cream, colds come in many varieties – hundreds in fact – and they are all slightly different.

For example, one cold starts off with a scratchy throat, swollen glands, a little nausea and intense sneezing which lasts a day. But this cold is not the same as that of the neighbor down the street, sore throat and headache but no sneezing. We can call them both colds, but the pattern of symptoms is slightly different, and indeed with viral studies we can see that the initiating virus is also different. But what Jason noticed was that whatever the first virus had been, the second one felt exactly the same.

It would be hard to describe the specific combination of 20 symptoms that made up this particular ‘flu’. It would be like trying to describe an unknown ice cream flavor. In the ice cream store drooling Mocha Vanilla from the corner of your mouth, you say, “that’s it.” And it was a second one. It was separate from the first because he had recovered, implying that his body’s immune mechanism had conquered the first invader. He had returned to work and nearly forgotten about the flu three weeks before.

He went to the doctor and described the course and symptoms, and the exact similarity of the second course to the first. His doctor said that he could not get the same ‘flu’ twice, and that it must be a coincidence that the two were similar.

Jason nodded agreement; they had just made a pact to accept a statement, clothed in the language of science, that was obviously wrong.

There are many viruses that cause the illness we call the common cold. In fact the viruses that cause colds are of several different groups. Flu viruses are a little different, but sometimes it is difficult to say by the symptoms if something is a cold or the flu, because they overlap so much.

In general a cold is mild, one or two days of feeling crummy, and the flu is a week. The flu can be dangerous to older people because they develop secondary infections. And there is a vaccine to cover many of the strains of flu that appear during a given winter. There is the ‘Warsaw’ flu, the ‘Beijing’ flu, the ‘Moscow’ flu. It always seemed to me as a medical student that the different strains of flu were named for communist cities as if they were deliberate attempts at biologic warfare.

Each flu strain is distinct. If you had the ‘Hong Kong’ flu once, you would develop antibodies to this particular viral strain and recover. Then, because of blood cells called memory T-cells, you would remember this strain and not get it again, except in the rare instance after decades when the memory T cells become a little senile. That is why, in general, we get chicken pox or measles once in childhood and then do not get these illnesses again when our children have them.

It is difficult to measure or determine the specific strain of virus during an infection. The government will look for new strains in order to include them into the flu vaccine, but because they take several weeks and are costly they are not routinely done during a flu infection. You go to the doctor and he or she says “You have the flu. Please pay at the front desk.” (As an aside, have you ever noticed that the first ten visits for CFS are said to be due to a virus, and the next ten are said to be due to depression?)

So therefore it is not likely that Jason had the same flu twice in a row. And all of this would not have made any difference if everything got better and resolved.

Jason didn’t care much about T-cells and strain variation. Unfortunately, as he was recovering from this second bout he had a third, again with identical symptoms. There was a very particular set of discomforts that made up this flu and a particular malaise, and it came back full force.

He was treated with antibiotics – maybe it was a sinus infection – and again recovered, only to get it again a fourth time.

Over the next six months the process kept repeating with one significant trend. The episodes of this “flu” began coming closer and closer together and the recovery period shortened.

Six months after the initial episode, they were no longer separate bouts, but a constant illness with the symptoms of abdominal pain, flu-like aching, sore throat, joint pain, headache, blurry vision, trouble concentrating, and, of course, exhaustion.

Instead of being 35 and playing piggy-back with his children, Jason had CFS.

Jason’s six-month onset was not the most common for CFS, but then, again, there are many types of onset in this illness.

Jason’s particular onset, however, raises several important questions:

• Is the illness due to a flu-like virus?

• Is CFS due to an unusual virus that plays hide and seek for the first six months?

• Or does CFS have nothing to do with a virus at all?

Can flu-like symptoms be due to something other than an infection with a tiny microbe? The first time this question ever occurred to me was while I was an intern, working 36-hour shifts in the intensive care nursery. After being up all night and struggling to remember where I parked my car, I would notice that my lymph gland felt swollen and that I was coming down with the ‘flu.’ But after a coma-like sleep I would be recovered and ready to hit the next 36-hour shift.

Another of life’s ironies: They have now made it illegal for interns to work those hours because they would prescribe the wrong medications, put IV fluids in the wrong patients, and make other mistakes due to fatigue. But when a person is disabled with CFS and is constantly in that exhausted state, no one believes them, particularly the former interns.

The most common type of onset in CFS is the “acute onset” flu-like illness that does not resolve.

Yet even in this more frequent type, there are parallels with Jason’s flu. In the acute onset, there is a flu-like event, which after five days or so begins to resolve, just as one would expect with the flu. But after the initial resolution, almost to good health, the symptoms come crashing back and do not disappear again.

This implies that the illness is a little uncertain, it wavers a little at the beginning as if trying to make up its mind. “Shall I come down on Mrs. Peterson or not?” If this is so, it had a really hard time deciding about Jason.

A second unusual detail common to the onset of CFS is the severity of the fatigue during the initial episode of the apparent flu. Again, difficult to differentiate in retrospect, but in the initial illness, the fatigue seemed to be more severe than usual.

When I observed the outbreak in Lyndonville, I felt that this was one detail which set this flu apart from all the others. In fact I felt that you could even guess which people were destined to not get better – although I never hinted that at the time.

The belief I held was that there was a unique infection which caused CFS.

What is it about the flu that causes the symptoms that everyone knows only too well? The conventional explanation is that with an infection, viral or otherwise, chemical mediators designed to fight the infection are released into the blood stream. And it is the presence of these immune substances that actually cause the symptoms.

Part of the evidence for this is that when these substances are infused into healthy people they feel rotten, as if they had the flu. The flu virus and many other viral, and bacterial agents stimulate the production of these normal chemicals, which causes the symptoms. When the body’s immune mechanism destroys the infecting virus or bacteria the production of these immune mediators shuts down with a return to good health.

With Jason, the onset had begun as a typical viral infection followed by repeat episodes or relapses until a continuous illness developed. His course of CFS was then typical: There were good days and bad days, but no days without exhaustion, brain fog, and muscle and joint pain.

There were the usual problems with diagnosis, many specialists consulted, tests run. After 15 months the  diagnosis of CFS was made.

The time when the flu-like events coalesced into a continuous illness was around March of 1995. By summertime the symptoms followed a daily ritual that varied little.

• He would have four or five hours of up-and-around activity, headaches every other day, and so on.

• When he had a bad week, his activity would drop down to two to three hours a day and he would feel more ill.

• On a good week, sometimes coinciding with sunshine and a warm breeze off the lake, the activity could go as high as six good hours a day.

Summer eased on into fall, and into November.

Jason had a severe relapse in November, and felt the same as at the onset of his illness. Exactly the same.

His symptoms worsened to the degree that he was confined to bed for two weeks. He saw his physician who, predictably enough, said he had a virus and to take plenty of fluids and aspirin. On the next visit he was given an antibiotic just to be on the safe side. The flavor of this virus was the same flavor that had started his illness nearly two years earlier.

In this detail, Jason is not unique. CFS is an illness of relapses and remissions, and when patients describe relapses, they describe very similar events to those which occurred in their onset. It is not uncommon to hear, “It was like it was beginning all over again.”

It is because of this observation that the theory of a persistent infection, one that does not resolve, has been a steady thread through the tapestry documenting the history of CFS.

Viral and bacterial candidates come and go, but the proof has been hard to come by.

A second characteristic of Jason’s relapse that seems typical of CFS was its occurrence in November. In our office we call it the “November Factor.” For some reason, people with CFS get sick or sicker in late fall, and our telephone rings off the hook. I believe there is some connection between the unusual onset type and the worsening which occurs in November.

One possible explanation is that the patient has caught another bug. Kids are back in school, a perfect breeding ground for bugs of all sizes. They bring these bugs home, particularly this year’s variety and share them with their parents. The relapse is due to a worsening caused by an intercurrent infection, probably viral. This explanation implies that the relapses, and possibly the onset, are random, due to any old virus.

A second possible explanation is that summer is over and winter is setting in. Many persons with CFS feel better in the summer, perhaps because there is less stress, and more time sitting around on the porch in the warm August air. For young persons and schoolteachers, summer is a time of unsustained activity. That is, instead of eight straight hours of work, school or study, it is an hour here, a couple of hours there with rest in between. Therefore starting back to a day with eight straight hours of work or school can precipitate a relapse.

In this theory, the November factor is the resumption of sustained upright activity after a stress-free, relaxing summer. This possibility implies that a critical amount of sustained activity initiates a relapse, a common experience for persons with CFS.

A third possibility has to do with sunlight. Upstate New York, next to Lake Ontario, undergoes a change in November. The days become short with sunset at 4:45 PM by mid December. Worse yet, water vapor from the lake creates a perpetual cloud bank that drifts over Lyndonville and lingers for the next four months. Mid day is gray, bleak and cold, and all sensible adults have left for Florida.

Perhaps the lack of sunlight alters the brain’s melatonin and the addition of seasonal affective disorder is the November factor. Nearly everyone around here is depressed all winter, a fact that the chamber of commerce leaves out of the brochures. Our great joy in winter is a good nor’easter storm which blows the clouds up to Toronto and gives us several wonderful days of sunlight in which we can shovel snow. My lack of enthusiasm for winter here is more than compensated for by the arrival of the geese in the spring and the following months of cherry and apple blossoms that blanket the county.

There are other possibilities. With the coming of cold and bleak weather in November, people go into their homes, shut the windows, add plastic sheeting to

help insulate the windows and begin breathing more carbon monoxide. Carbon monoxide, despite being a deadly poison, is very interesting. It can cause a flu-like illness and prolonged neurologic symptoms very similar to CFS.

Oxygen makes many persons with CFS feel better, at least temporarily. Experiments with hyperbaric chamber treatments, where oxygen is pushed into tissues at high concentrations, have shown improvement in patients with CFS. High altitude sickness also shares many of the symptoms of CFS, again due to decreased oxygen availability to brain cells.

Could it be that the flu-like event is not due to an elusive virus at all, but instead to decreased oxygen availability to the cells? [Note: In 2007, Dr. Bell published Cellular Hypoxia in Neuro-Immune Fatigue – a book laying out his hypothesis that ME/CFS and FM may involve a dysregulation of cellular metabolism leading to the inability of the cells’ mitochondria to utilize oxygen normally.]

Medical science is amazing. The technological advances are astounding. We can rescue one pound preemie babies and transplant hearts, livers, and fingers. We

can diagnose retroviruses and have made great strides in treating AIDS. Few pediatricians can boast of seeing measles epidemics, and chicken pox will not be seen by the next generation of doctors. But try to explain something as simple as the flu.

Jason did well for the most part. The one time he got really sick was when I tried to treat him with fludrocortisone.

He got the same flavor flu-like event, initiating the relapse. It was not as severe this time, and it was not in November. He has been the only person treated with this medication who has had a relapse, but it again raises the question of whether the flu-like symptoms are due to infection or an entirely different mechanism. We stopped the medication, left him alone for two weeks and the relapse ended, albeit slowly.

It has now been almost five years since Jason began his journey, and he has improved slowly and steadily. He is up to eight hours of daily activity, and while the symptoms persist, Jason feels grateful that the crushing flu-like malaise has passed.

– Dr. David S Bell, MD, Lyndonville, New York, August 15, 2000

____

* This article is excerpted with kind permission from Dr. Bell’s classic book Faces of CFS – Case Histories of Chronic Fatigue Syndrome; © David S Bell, MD,

2000. It may be downloaded as a free eBook at Dr. Bell’s website www.davidsbell.com/DSBFaces.htm.

http://www.talkhealthpartnership.com/forum/viewtopic.php?f=493&t=4566&p=13661#p13661


Re: Is ME infectious?
Post by Erik Johnson on Fri Aug 16, 2013 3:14 pm

I’m a survivor of the 1985 Lake Tahoe epidemic, a graduate of Truckee High School, and a Holmes et al “CFS definition patient-study group” participant as a prototype for the new syndrome of “CFS”

We have had a few more minor outbreaks since then, but nothing like the huge “Mystery Illness” incident that sickened thousands of people.

This strange illness is full of bizarre contradictions.
At times spreading like wildfire through groups of closely associated people, yet with people from these very groups seemingly unable to transmit it to anyone else.

I saw a pattern immediately. A strange “exception to the rules” in which the flu-like illness turned from noninfectious to wildly contagious.

The contagion occurred when people in the early “shedding phase” of viral illness were all in the presence of moldy buildings, particularly ones with Stachybotrys Chartarum.  Only then, was the disease easily passed from one to another.

The Truckee “teachers lounge” incident that caused Dr. Peterson to call the CDC, starting the path to the new syndrome, is a very well described example of this process.

I contacted the teachers at Elk Grove, and they found the very same “toxic mold” that we in Truckee did.

The clues are right there. Simply ask yourself, “If this were a purely viral illness, then why did the one teacher who made the effort to get out of that lounge manage to avoid becoming ill?”

-Erik Johnson


http://www.ncbi.nlm.nih.gov/pubmed/8148452
Clin Infect Dis. 1994 Jan;18 Suppl 1:S43-8.
Concurrent sick building syndrome and chronic fatigue syndrome: epidemic neuromyasthenia revisited.
Chester AC, Levine PH.
Georgetown University Medical Center, Washington, D.C.

 

Sick building syndrome (SBS) is usually characterized by upper respiratory complaints, headache, and mild fatigue. Chronic fatigue syndrome (CFS) is an illness with defined criteria including extreme fatigue, sore throat, headache, and neurological symptoms. We investigated three apparent outbreaks of SBS and observed another more serious illness (or illnesses), characterized predominantly by severe fatigue, that was noted by 9 (90%) of the 10 teachers who frequently used a single conference room at a high school in Truckee, California; 5 (23%) of the 22 responding teachers in the J wing of a high school in Elk Grove, California; and 9 (10%) of the 93 responding workers from an office building in Washington, D.C. In those individuals with severe fatigue, symptoms of mucous membrane irritation that are characteristic of SBS were noted but also noted were neurological complaints not typical of SBS but quite characteristic of CFS. We conclude that CFS is often associated with SBS.
PMID: 8148452 [PubMed – indexed for MEDLINE]


http://www.youtube.com/watch?v=AW0x9_Q8qbo&feature=related

“This seemed to be evolving, before our eyes, from a flu-like illness into something else”
-Dr Paul Cheney

“… and it seemed to be spreading. Through the local hotel and casino, two area high schools, members of a girls basketball team.”
-Dr Nancy Snyderman

“That’s when we wondered, Hey, maybe we ought to call somebody. This is really unusual.”
-Dr Paul Cheney


 

I would like to call your attention to page 488 of Osler’s Web: Inside The Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson, where a fabulous clue is reported.

Chapt 26 “Smoke and Mirrors”

After leaving Lyndonville, Dr Bell had been called in for meetings between parents and the school authorities of a grade school where a number of children had fallen ill, apparently with the “sick-building syndrome,”  a illness caused by toxins from building materials or other environmental sources.  “The parents claimed the school is poisonous,”  Bell said, “But…. SIXTEEN air-quality experts (have) looked, and they’ve found nothing. What is probably going on is an outbreak of Chronic Fatigue Syndrome.”


10/22/2015 –

Dr. Bell just confirmed to me that the school in question is the Tobin school:

http://www.mass.gov/eohhs/docs/dph/environmental/iaq/2004/cambridge-tes04.pdf

So, Dr. Bell observed a cluster that appeared to be identical to the Truckee teachers lounge.

A circumstance which directly resulted in a chronicity of illness, whereas people just a few feet away “Dodged the bullet”,  where experts found nothing, despite our insistence that we could FEEL it.

Just as I have said ever since the instant I agreed to serve as a prototype for this syndrome, that we have a microcosm in these clusters that is available for easy analysis.  All we need to do is get CFS researchers to stick with it until we find out what exactly is different about these locations.

-Erik Johnson

CFS–The “Invisibled” Disease

Guest Blog by Erik Johnson

http://www.youtube.com/watch?v=AW0x9_Q8qbo&feature=related

“This seemed to be evolving, before our eyes, from a flu-like illness into something else”
-Dr. Paul Cheney

“… and it seemed to be spreading. Through the local hotel and casino, two area high schools, members of a girls basketball team.”
-Dr. Nancy Snyderman

“That’s when we wondered, Hey, maybe we ought to call somebody. This is really unusual.”
-Dr. Paul Cheney


Page 14A  Tahoe World  Thursday, Oct 24, 1985

At Least Six Were Affected

Truckee Teachers Recount “Malady”

By Barbara Barte

Erikmysterymalady

Irene Baker, one of about a dozen local teachers who have been diagnosed as having chronic mononucleosis, is exasperated with doctors who dispute the findings of the two Incline Village doctors who have diagnosed 90 local cases.

“I know that I’m sick and I think it’s more than coincidence that five teachers who share the same prep period have the same symptoms.” Baker said Tuesday.

She spent most of the summer in bed and has not been able to return to her teaching job at Tahoe-Truckee High School this year.  Her daughter,  Laura, was also sick but has gotten better, she said.

Baker said at least six other Truckee teachers — Andy Antonucci, Gerry and Janice Kennedy, Karen and Michael Cosgriff, and Jan Showalter — have similar symptoms and the same diagnosis, as do three North Tahoe High School teachers.

Symptoms are “fatigue and killer headaches, sore throat, swollen lymph nodes, pain in the spleen area and the inability to stand up for more than a short period of time,” she said.

While she has all the above symptoms and most share the fatigue and bad headaches, not all have the other symptoms.  Most were sick all summer,  some have returned to teaching full – or only half time, and some are still not able to work.

“Eventually, everyone ended up at Peterson and Cheney’s office,” she said, referring to Incline Village Drs. Daniel Peterson and Paul Cheney, who have been criticized by other doctors for their chronic-mono diagnoses.

“I don’t think Peterson and Cheney are off-base,” said Baker, “and what bothers me is that these doctors who are being so critical haven’t seen patients with these symptoms, or, if they have, they haven’t listened to them.

“One teacher was told she just had an allergy, and she was so sick.  Others are told they’re depressed.  I had gone to Peterson and recommended him to other teachers.

“Peterson and Cheney believed we were sick. That’s why they got all these patients.  All of us showed negative on a mono spot test, but not on an E-B panel.” (See other story for a description of the controversial Epstein-Barr test )

Since becoming ill, Baker has been finding out what she can about chronic mononucleosis and has learned that there isn’t much research on the disease.

She has learned, however, that she is not alone, as someone sent her a list of 200 names from a national support group.

Since reading a paper by a Wisconsin doctor who believes he had a latent mono virus reactivated by the toner in his copy machine, she wonders if two copy machines in the teachers room could be at fault.

Cheney says that certain drugs and chemicals can cause latent mono infection to become active again.  So can other illnesses, such as cancer and rheumatoid arthritis.  In fact, he says, the tiredness associated with these diseases my be due to reactivated mono.

“Phorbol esters used in copy machine toner, the tung oil in many furniture polishes and in certain glues and varnishes and even in some houseplants may reactivate the mono virus that is latent in 90-percent of adults,” says Cheney.

While this may be the cause of a few local cases, however, he says he is more inclined to believe a reactivation was triggered by another virus last winter.

“I wouldn’t want people to go around unplugging their copy machines,” he says.  “if it is a common chemical, how come it caused problems this year and not last year?  It was more likely a virus.”

If reactivation is caused by a chemical, he said, “a lot would depend on the concentration, ventilation, and a lot of other variables.”

Cheney agrees with Dr. Gary Holmes, a viral-disease researcher from the Center for Disease Control in Atlanta who is investigating the Tahoe-Truckee cases, that chronic mono is not easily transmitted from person to person.

“Ninety percent of all adults are immune to it because we already have the latent virus,” says Cheney, “but I believe that something happened last winter to reactivate the virus in many people.”

He says that, because the virus that causes mono is a member of the same family as the herpes virus, a mono treatment is being studied using a new drug for herpes.  “Results are still pending but may be in by mid-winter,” says Cheney.

Although the CDC researcher who investigated Cheney and Peterson’s findings says he doesn’t believe there is an outbreak of chronic mono in the area (see story) and other local doctors also dispute the claims, Cheney says he is convinced at least 90 local people had a mono virus reactivated last winter.

He has seen no new cases since late summer and says “This thing has a beginning, a middle, and an end.”

Irene Baker and some other locals are still waiting for an end to their illness, though.   “It’s all I can do to go to the doctor, maybe stop at the store, and get back to bed.” she said Tuesday.   “I just talked to Karen Cosgriff (who is back teaching half-time) and she was going to go lie down.


Two teachers from the Truckee teachers lounge happened to be in Peterson’s office when CDC epidemiologist Gary Holmes was there.  They asked to see him for something that was on their minds.   Gerald and Janice Kennedy, along with Irene Baker, wanted to know why the flu-like illness could rage through the school, but the teachers IN that lounge were the only ones who didn’t recover.

Gerald Kennedy spoke of his speculation that perhaps the fumes from the copy machines made the difference, or perhaps something bad in the filters from the heating system.   Could a toxic exposure be responsible for allowing the virus to take hold?

Gerald recounted, “I remember telling him (CDC epidemiologist Dr. Gary Holmes.)  about the filters. You could tell he though we were a bunch of loonies.  That was early into it, and we were still thinking, Well, maybe we ARE crazy.  But you would think we would be questioned, at least, and there weren’t a lot of questions.  He just nodded his head.  He seemed to have already made up his mind about us.”

Now… think about it.  What did Irene, Gerald and Janice ask for?

Did they say “Please Dr. Holmes, help us with the horrible virus”?

No, they wanted to know what it was about that room which made the difference.

Dr. Cheney and Dr. Peterson said it appeared to the new concept called “Sick Building Syndrome”, but what made it sick?  The copy machines? The carpet? Mold in the air filters? All of them?  This is what they wanted to find out.

As seen in the newspaper, Dr. Cheney had already decided that it must be a virus, and thanks to other clusters in other schools, reasoned that this factor hadn’t changed.  That left only the virus.

Air quality investigators were called in, but they found nothing unusual in the way of Legionnaires disease or chemical fumes.

But here is the critical point.  “Toxic Mold” had not yet been discovered, and wasn’t even in the medical literature.

The first literature on toxic mold didn’t appear until 1986.  (References to come in another blog.)

The teachers could point all they wanted, but from the Indoor Air Quality experts and a doctors “peer reviewed literature” point of view, there was officially nothing there.

The investigators looking at this incident reached a fork in the road, chose the one in accordance with their literature, and never looked back.

As told in Dr Ritchie Shoemaker’s 2005 book “Mold Warriors”, I tried to call CFS researcher attention back to the “unexplained” mold, but to no avail.


Mold Warriors by Dr Ritchie Shoemaker
Gateway Press 2005

Chapt. 23
Mold at Ground Zero for CFS

EMWWhitney

History Doesn’t Remember the Names of the Critics

The history of medical practice is filled with ideas that failed the test of time. Medicine evolves as new information arises, some ideas don’t last.

As a simple example of theories of illness that were accepted practice but found later to be wrong — and there are many — do you remember the bland diets that were prescribed to treat ulcers? That therapy dominated medical practice until stress was blamed for excess stomach acid production. That was the era of the diagnoses of stress-induced stomach problems, as wrong headed then as the idea now that mold illness is stress-related.

When we found out that many stomach conditions were actually an infectious disease caused by Helicobacter Pylori, goodbye stress theory. Fortunately, the discovery of an infectious source of ulcers, as opposed to stress and other psychological contributors, has meant new treatment for other sufferers.

The history of medicine is also full of individuals who single handedly blocked the development of new ideas. The victories of knowledge achieved by medical greats like Louis Pasteur and Joseph Lister, came only after intense battles and vicious personal attacks by so many of their “peers” were rebuffed by truth and science. The Listers and Pasteurs were right. Their many detractors were wrong. History doesn’t remember the names of the critics.

The history of Chronic Fatigue Syndrome (CFS) begins in Incline Village, Nevada in 1985. In the medical history of CFS, each of the concepts applies–failed theories and failed criticism.

One victim, Erik Johnson, told everyone who would listen that mold was a cause of CFS. He came up with his theory at the wrong time in the politics of medical opinion, as a unknown viral cause was blamed instead. Johnson tried repeatedly to get the attention of leading CFS researchers then and now to look at what he knew about mold sensitivity. None of the heralded CFS researchers would listen.

Johnson tried to tell all that mold avoidance helped him return to a normal life after repeated bouts with mold illness. No one in an authoritative role listened.

We now know the mold connection to CFS is incredibly strong. The resistance to that idea is also incredibly strong, as the longstanding idea about CFS said often enough and loud enough and supported by the CDC, are believed by many, And if there’s a tragedy of the CFS story, it’s that Erik was right from the start. No one listened.

Mold hurts us. Until now, few have listened.

Two practicing physicians, Drs. Dan Peterson and Paul Cheney saw something completely new in their practice in Nevada in 1985. Suddenly they were seeing numerous people with multiple health symptoms, especially a strange “bone-crushing, devastating fatigue,” but there was no obvious cause. They felt that an infectious disease, a virus, was responsible for the outbreak. Just look at all the people made ill in one area. It had to be infection (I wonder if they discounted the possibility of exposure to a toxin, or just didn’t even think of the possibility?)

At first, an epidemic of Epstein-Barr virus infection was blamed, leading to the “chronic mono,” and “Yuppie Flu” concepts. As Peterson and Cheney pursued an academic basis for CFS they discovered significant clues in esoteric biochemical research that suggested an unknown virus was responsible for the chronic symptoms experienced by sufferers of CFS.

If only those caring physicians had listened to one sufferer, vocal proponent of mold as the source of the CFS epidemic, how would medical history have been changed? As you’ll see, biotoxin exposure, especially to mold, was a gigantic player in the development of CFS and continues to be so to this day. But with the viral source of CFS eventually accepted as plausible by much of organized medicine, who’d listen to alternative theories? No one.

In the true story to follow, you’ll read how one person found a way to reduce his multiple health symptoms by avoiding mold exposure. He represents a group of people who likely don’t have biotoxic illness from mold, but their illness is still caused by mold. For the 25 percent of people with a genetic basis for a mold toxin illness, and therefore, absence of any significant self-healing once ill, the approach of the “Stachysterian”, Erik Johnson, to restoring health will never work. But for many of the 75 percent of the population, some to whom have illness from mold and initial sensitivity to mold toxins, Erik’s story makes him a Mold Warrior.

Erik remains bitter that his correct insights about mold and CFS were ignored for 20 years. But like so many people in medical history who were right but ignored, he must be content that his ideas are now validated. We will have many more years of clinical research to follow 2005, beginning by educating the “CFS establishment.” That will take swimming upstream against the CDC once again but Mold Warriors will offer a new set of ideas and data for the Chronic Fatigue Syndrome experts.
That is, if they read it.

http://www.survivingmold.com/


In the 1994 abstract by Chester and Levine, the association of SBS and CFS was reported, based on the very incident that started CFS, but as you can see, testing for fungi was “unremarkable”:

Concurrent Sick Building Syndrome and Chronic Fatigue Syndrome: Epidemic Neuromyasthenia Revisited
Alexander C. Chester and Paul H. Levine From the Georgetown University Medical Center, Washington, D.C., and the National Institutes of Health, Bethesda, Maryland

Sick building syndrome (SBS) is usually characterized by upper respiratory complaints, headache, and mild fatigue. Chronic fatigue syndrome (CFS) is an illness with defined criteria including extreme fatigue, sore throat, headache, and neurological symptoms. We investigated three apparent outbreaks of SBS and observed another more serious illness (or illnesses), characterized predominantly by severe fatigue, that was noted by 9 (90%) of the 10 teachers who frequently used a single conference room at a high school in Truckee, California; 5 (23%) of the 22 responding teachers in the J wing of a high school in Elk Grove, California; and 9 (10%) of the 93 responding workers from an office building in Washington, D.C. In those individuals with severe fatigue, symptoms of mucous membrane irritation that are characteristic of SBS were noted but also noted were neurological complaints not typical of SBS but quite characteristic of CFS. We conclude that CFS is often associated with SBS.

Recently recognized as an occupational disease, sick building syndrome( SBS) is characterized by symptoms of mucous membrane irritation (e.g., rhinitis, conjunctivitis, and cough), fatigue, and headache 1-5]. Outbreaks of SBS are generally described among employees in multistory office buildings constructed after 1965. Sealed windows, closed
fresh-air intake ducts, and an impervious external shell usually describe the structure [6]. In affected individuals symptoms often abate over the weekend when they are away from the job site.

Chemical or microbiological contamination may be found, but more typically the evaluation is unrevealing [1]. Epidemiological studies clearly implicate the workplace, thus discounting earlier suggestions of “mass hysteria” [6-8]. Furthermore, improved ventilation often helps, thereby suggesting that the “tolerable” levels of contaminants may produce the syndrome by acting in concert. As yet unidentified agents, toxin(s) or microbe(s), however, must also be considered.

Chronic fatigue syndrome (CFS), a term recently coined for a long-known condition, is characterized by extreme fatigue with other agreed upon criteria including sore throat, headaches, and neurological complaints [9-13]. The illness often has a sudden onset, demonstrable lymphadenopathy, low-grade fever, and possibly a psychiatric contribution [14, 15]. CFS has followed clearly documented infections with the Epstein-Barr virus, cytomegalovirus, and human herpesvirus type 6 [16, 17]. Psychiatric trauma and exposure to toxins are also apparent precipitating agents [18]. Many patients have elevated titers of antibodies to a number of viruses, abnormal production of interferon, and depressed function of natural killer cells [ 19-22].

Of these patients 50% to 80% have allergies compared with 17% of the general population[23]. None of the proposed etiologies for CFS have been substantiated. Documented cases of CFS have been reported as part of disease clusters in varying proportion[s2 4-26].  Outbreaks of epidemic neuromyasthenia (ENM), which is known variously as postviral fatigue syndrome, epidemic myalgic encephalomyelitis, and Iceland disease, have been described since 1934 [27-31]. The signs and symptoms are different among varying clusters, thus suggesting that the term ENM may actually represent more than one disease process [32-34]. The variability of physical and laboratory findings for ENM is similar to that for CFS, as are the symptoms.

Headache, fatigue, and upper respiratory problems are noted in addition to neurological and musculoskeletal complaints that may be quite severe. Many investigators suspect viral causes, although none have been documented.

We describe three outbreaks of SBS associated with the development of CFS. All outbreaks were characterized by perceived poor air quality and the symptomatic triad of SBS of fatigue, headaches, and upper respiratory complaints.  The prevalence of severe fatigue varied significantly among the outbreaks, thereby suggesting that the inciting agent(s) differed quantitatively or qualitatively.  Nevertheless, the link of CFS with SBS suggests the possibility that the agent(s) responsible for the traditional symptoms of SBS may also trigger CFS.

Truckee, California.

Coincident with, and reported as part of an outbreak of CFS (1985) in northern Nevada and California [13, 17, 24], nine of 10 high school teachers who used a single, small, poorly ventilated conference room became ill sequentially. All nine teachers required a leave of absence, and two retired. Eight teachers remain ill 5 years after the onset of the outbreak. The one unaffected teacher spent less time than the others in the conference room, often doing his work outdoors.

Methods

Elk Grove, California.

In October 1989 the smell of fumes was noted in the J wing of Elk Grove High School, which is located near Sacramento, California. Two teachers soon became ill, thereby prompting complaints about the building to the school district. Within months 19 of the 23 teachers in the J wing (-20% of the entire faculty) complained of an illness characterized by recurrent sinusitis, headache, and fatigue. Additional complaints included cough, sore throat, tender cervical lymph nodes, myalgias, and depression.

An industrial hygiene survey documented CO2 levels acceptable to the Occupational Health and Safety Regulation Authority but in excess of the standards of the American Society of Heating Refrigeration and Air-Conditioning Engineers because of insufficient air flow. Excessive levels of volatile organic chemicals (toluene, xylene, and formaldehyde) were not detected. Tests for fungi and bacteria were unremarkable.


So, there you see.  CFS researchers speculated there was a risk factor for CFS in sick buildings, but that is where it stopped.

Just speculation, and nothing more.  No interest, no follow up, and just as Gerald said, no questions.

I often think of his words. You would think there would be questions, but there never are any.

This situation of CFS researchers manifesting zero curiosity about the inception of CFS, never looking back, continues year after year.

As seen in this 1999 “The Invisible Disease” article, neither the author or the CFS researcher they consulted appear to know anything about the history of CFS.

Not even about the HBLV (HHV6A) or Asian flu, which was in the newspapers, and listed as the reason NIH investigators became interested in the Tahoe Mystery Illness.  All these researchers did was continue to “educate” everyone that “Nothing is known about CFS” and work to crush clues.

The Invisible Disease:
” Of the dozen or so teachers who regularly gathered in  the makeshift faculty lounge at Truckee High, 11 developed symptoms of CFS.”

If researchers are right about the role of the stress-response system,  the cluster might have occurred because the teachers were exposed to the same intense physical or psychological stress, or to several stresses,  and those with a predisposition to CFS then fell ill. But no toxic chemicals were ever detected in the ventilation system or water pipes or anywhere else. Records show no particularly bad cold or flu making the rounds that year, nor any obvious psychological trauma the teachers had in common. And the many other people in the area who got sick around the same time had never been inside the school or had contact with those teachers.


The Invisible Disease

http://www.cfs-info.com/joomla/index.php?option=com_content&task=category&sectionid=17&id=207&1temid=55

When Irene Baker found out she had chronic fatigue syndrome, some doctors said it was all in her head. Others said she’d never recover Boy; were they wrong.

HIGH IN CALIFORNIA’S Sierra Nevada, seasons change with astonishing swiftness. One day it’s fall, the aspens ablaze with golden light. Then the first winter storm barrels across mountain passes, blanketing the slopes in white. For a time the world belongs to skiers and snowboarders, who flock to the peaks around Lake Tahoe to throw themselves gleefully down powdery trails. Then, just when it seems winter will never end, an improbably warm day coaxes wildflowers from the clearings, and suddenly hikers and bicyclists are charging up the mountains for top-of-the ridge picnics.

Irene Baker’s a local, and she loves it all–the fierce, frigid storms, the shimmering summers, the allure and challenge of a constantly changing landscape. That’s why it’s so hard for her to think back to the time, 14 years ago, when it looked as though so much of what she loves about her life might be snatched away.

“It’s almost as if that all happened to someone else, not me,” she says, taking a break from errands at a coffee shop not far from the high school where she used to teach. With cheeks flushed, her bright eyes flashing with restless good humor, Baker could be cast in a commercial for some new age-defying, health-boosting supplement; she looks that vibrant.

Which is exactly how she thought of herself before the trouble began, before the appearance of a mysterious illness that would knock her life off track.

Baker was in her early forties then, teaching social studies full-time at  Truckee High School and raising a ten-year-old daughter on her own. “I’d been feeling fine, working hard, jogging up into the mountains whenever I could. Everything seemed to be going so well,” she remembers.

“Then one day I put on running shoes to go jogging, and I just couldn’t do it.  That had never happened to me before. It was as if there were heavy weights tied to my arms and legs. It was a kind of dead tiredness I’d never felt.”   The symptoms might have heralded a bout of influenza, but even the nastiest flu lifts after a week or two. Whatever this was only got worse as the weeks wore on.

“I’d try to do something around the house for a few minutes, and that would be it for the rest of the day. I’d be utterly exhausted,” she says. “For the first three weeks all I did was sleep. Then, after that, I couldn’t sleep.” She began to suffer night sweats, blinding headaches, a burning throat. Worse still was the feeling of being enveloped in a mental fog.

“I couldn’t concentrate. I couldn’t read,” she says. “My brain just seemed disconnected. I tried to keep teaching, but I’d be writing something on the blackboard when all of a sudden the kids would say,  ‘Mrs. Baker?’ and I’d look up to see that what I’d written made no sense at all. I really began to wonder if I was losing my mind.”

In fact, Baker was one of the first people diagnosed with what has come to be called chronic fatigue syndrome, or CFS, a condition now thought to afflict  anywhere from a half million to a million Americans, making it perhaps as common as Parkinson’s disease and lupus. Researchers chose the vague name because they had little to go on, just a sketchy collection of symptoms dominated by prolonged and unexplained exhaustion. Then, as now, people with CFS experienced a grab bag of other complaints, including headaches, muscle or joint pain, tender lymph nodes, sore throat, and  memory trouble.

Over the course of a few months, more than 200 people from the little towns around Tahoe and the surrounding region were struck  down by the same baffling set of symptoms. Investigators from Harvard University, the National Institutes of Health, and the Centers for Disease Control and Prevention arrived, followed by members of the media, who brought the apparent epidemic into the national spotlight.

Still, plenty of doctors scoffed at the notion that some sort of plague had descended. It was much more likely, they said, that patients were feeding on each other’s anxiety, or that their fast-paced lives had tired them out. Reporters, noting the affluence of some patients,
dubbed the ailment “the yuppie flu.” Meanwhile, business leaders around Tahoe fretted that all the bad publicity would scare off tourists.

‘Most of the doctors here in Truckee thought the whole thing was in our heads,” Baker recalls. “Right here from the start, there were people who were sure we were making the whole thing up.”

Baker knew otherwise. Morning after morning she barely had the strength to get her daughter ready for school. She had to give up teaching that spring and couldn’t go back in the fall. “I was scared to death,” she says. “I had a ten-year-old daughter. I was a single parent. I had no idea if or when I would be well again, when I could go back to work. I thought I’d lose my house, my job, everything.”

The blackest moment came in 1986 as she related her symptoms to health investigators, who suspected a smoldering virus was to blame. “I remember one of them telling me, ‘You’ll probably be like this for the rest of your life.'” Now she can only shake her head in grim wonder at the strangeness of it all. Fortunately for Baker, the experts were wrong.

Today, after years of tracking the outcomes of some of those first cases and thousands more, researchers finally have a few things to celebrate. For one, they’ve learned that most people get better. Even many of the sickest recover fully, as Baker did; others get well enough to reclaim their lives. It’s now clear  that only a small proportion of patients remain debilitated for more than five years.

Also to the relief of patients, early naysayers have been silenced. While the workings of the mind-particularly depression-may indeed play a role in the development of some CFS cases, others seem to result from discernible physical glitches. No one studying the illness these days dismisses the symptoms as those of hypochondria or  hysteria.

And there’s more good news. Though much about chronic fatigue syndrome remains bewildering, researchers have begun to piece together  what goes wrong. Their discoveries offer real hope to the thousands of people all over the world who continue to come down with the devastating ailment.

IN THE BEGINNING, when word of a strange new malady spread through the towns around Lake Tahoe, people had plenty of reasons to be afraid.  It’s bad enough to contract any lingering disease, far worse to have one that doctors say they’ve never seen and can’t identify. And because the  mysterious plague seemed to strike in clusters–11 teachers at Baker’s school, girls on a basketball team the next town over, and a number of casino workers across the Nevada state line–many assumed it was contagious.

Mothers hesitated to kiss their children for fear of passing it along,  remembers Daniel Peterson, one of the few local physicians to take the illness seriously from the start. “Even at the clinic we weren’t sure what precautions to take. Patients came in asking, ‘What have I got?’ and we didn’t have the faintest idea what to tell them.”

Was a new microbe on the loose? Around the world AIDS had begun to cast a lengthening shadow, spurring worries that other viruses might be lurking. Some people even called the new illness “chronic fatigue and immune dysfunction syndrome” (CFIDS), a name that is still used by a prominent patient support group even  though faltering immunity, researchers now know, is only sometimes a feature of the illness.

The Epstein-Barr virus, the culprit behind mononucleosis, was an early suspect. Doctors theorized that some people with EBV might have been unable to shake off the active infection; maybe chronic fatigue syndrome was actually chronic mononucleosis. But the idea didn’t hold. Virologists found that people with CFS were no more likely than healthy individuals to carry the Epstein-Barr virus. Nor did CFS patients show any of the changes in their blood–a rise in antibodies and other immune fighters, for example–that would be expected in someone with a chronic infection.

In the years since, other viruses have come under suspicion only to be exonerated. And despite what initially looked like a cluster of cases, subsequent research has revealed that CFS doesn’t typically fan out through families, day care centers, nursing homes, or other community groups the way microbial illnesses do. In short: It appears not to be contagious, at least in the usual sense.

Furthermore, the illness isn’t new. Around 30 years before the first cases showed up in the Tahoe area, the CDC investigated similar reports of chronic fatigue in Punta Gorda, Florida–an outbreak  that never made the national news. Last century doctors routinely diagnosed neurasthenia, a “neurosis characterized by weakness and fatigue,” according to old textbooks; generations earlier physicians treated cases of febricula (which means “little fever”) and nervous exhaustion.  Most experts now think those, too, were names for CFS. In fact, many fuzzily defined diagnoses that have risen in favor and then fallen over the years–including multiple chemical sensitivity and even Gulf War syndrome–have at their core a collection of symptoms that fits  the definition of CFS.

Each of these conditions in turn has drawn skepticism when straightforward explanations of its origin failed to pan out.  But the lack of a single cause doesn’t mean a disease isn’t real, says epidemiologist Paul H. Levine, one of the first scientists to go to Tahoe to investigate and a leading expert on the syndrome.

“A lot of us began with the notion that this might be a viral illness, that we would find a single agent at work here,” says Levine, who recently left the National Cancer Institute to become a clinical professor of epidemiology and biostatistics at the George Washington University School of Public Health and Health Services. “We were following the model of a disease like AIDS or influenza. But that may have thrown us off track. Many of us now think that CFS is probably more like heart disease–a condition that may have a variety of causes.”

A heart attack, in other words, can be triggered by various factors that add up in different ways to the same basic problem. Your arteries may be clogged because your diet is rich in saturated fats or, alternatively, because your body is lousy at clearing even normal levels of bad cholesterol from your blood. High blood pressure, a sedentary lifestyle, or inherited defects in the heart itself are just a few other factors that can predispose you to cardiac arrest. In the same way, chronic fatigue syndrome may arise from a number of characteristics that vary from one person to the next.

Some cases of CFS, scientists have learned in the last few years, can likely be blamed on something no one expected: an unusual type of low blood pressure called neurally mediated hypotension.

When people with this condition stand without moving for ten minutes, they become light-headed or queasy and may even pass out. The fainting happens because the body’s usual mechanism for regulating blood pressure is out of kilter. For unknown reasons, the arteries fail to receive the signal that would normally order them to constrict. (If the vessels don’t squeeze closed a bit, they can’t bump up blood pressure enough to keep a steady supply of oxygen and nutrients flowing up to the head.) After such a fainting spell as many as three out of four patients with this glitch drag through a day or more of disabling fatigue.

In 1995 Peter Rowe and a team at Johns Hopkins University School of Medicine decided to look for signs of this blood pressure abnormality in 23 patients with CFS. The volunteers were strapped to an adjustable table, which was  then tilted to a nearly upright position. While the volunteers remained immobile for 45 minutes, doctors checked for signs of dizziness and sinking blood pressure. Indeed, 22 of the 23 patients developed these symptoms.

In the wake of Rowe’s findings, it was easy to imagine  that this form of low blood pressure might be the single cause of CFS. But reality, it turns out, is more complicated. Of 200 CFS patients checked in a joint study by the NIH and Johns Hopkins researchers last year, only half had abnormal test results on the tilt table–far less  than the 95 percent seen in the earlier study. Even half is impressive, of course, says Stephen Straus, a leading chronic fatigue researcher at the NIH. But researchers don’t yet know how often the abnormality turns up without fatigue in the general population. And what triggers the malfunction in the first place remains an enigma.

In another set of cases, CFS seems to arise from a subtle defect in the body’s ability to deal with physical or psychological stress. Mark Demitrack, a psychiatrist at the University of Michigan, says that because many CFS patients became ill shortly after facing a major challenge to the body or psyche-a viral illness, for instance, or a period of emotional anguish–it made sense to look into their physical response to stress.

The hunch paid off. Demitrack and his colleagues found that some patients with CFS show signs that the system is out of whack, including a slightly damped overall response to stress and, in particular, abnormally low bloodstream levels of the stress hormone cortisol. Evidence that bolsters their theory: When scientists at the NIH recently gave a group of CFS patients a drug that mimics cortisol, two-thirds reported feeling better.

Even if this abnormality turns out to be widespread, it won’t account for everybody. In yet a third group of CFS patients, Levine says, the glitch seems more likely to lie in the immune system, specifically in the realm of so-called natural killer cells, whose primary role is thought to be defending the body against viruses and cancer.   For more than five years Levine has been studying a family in which five out of six brothers and sisters plus three close relatives have  chronic fatigue syndrome. Six of the eight have abnormally sluggish natural killer cells. The same defect has shown up in a significant number of other patients with the disease.

With three different links to CFS identified already–and still others likely to follow, according to Levine–it may seem as though scientists have merely traded one mystery for a bevy of half-completed puzzles. But teasing apart versions of the illness, Levine says, is enabling the researchers, at least in some cases, to take steps toward treating the underlying problems.

Straus’s team at the NIH has enrolled chronic fatigue patients in a study of a drug that may control neurally mediated hypotension. If the results, which should be ready within the year, are good, then at least one group of patients could be relatively easy to treat. Unfortunately, the cortisol-boosting medication tested by the NIH last year–an altered form of the steroid-proved too dangerous in its side effects to make it a practical therapy for those with stress-mediated CFS. But further research, Straus says, could produce less toxic alternatives. “Things are moving,” says Levine. “There is still plenty we don’t understand about chronic fatigue syndrome. But for the first time, we are beginning to see the light.”

AN EXPERT’S OPTIMISM is cold comfort for people still slogging through the worst of their illness.   In 1985 Janice Kennedy and her husband, Gerald, worked at the same school as Irene Baker. Gerald taught shop classes; Janice was an English teacher. Janice was an avid cross-country skier, and both loved backpacking. Then CFS hit, and their lives have never been the same.

While Baker’s and Janice Kennedy’s symptoms came on with the suddenness of a mountain storm, Gerald’s troubles overtook him by degrees; over several months he experienced a steady erosion of energy, a gathering mental cloudiness, and dulling headaches. By the winter of 1986 both were too sick to keep teaching. Twice Gerald tried to go back, only to suffer a relapse. Five years ago, unable to make it through the tough winters in Truckee, he and Janice moved to a small town in the foothills.

“We always loved being outdoors,” says Janice, sitting on the sofa and gazing out at  the woods that surround their house. “Now it’s an effort just to get down the hill in the truck to get groceries.” Gerald, a powerfully built  man, used to pride himself on his ability to build almost anything and fix what needed fixing. Today he hires workers to do jobs he once did with ease.

“You work at something for half an hour, and if you overdo it, you can end up wiped out for days,” he says. “So we’ve both had to learn to pace ourselves.”

Why some people recover and others languish remains one of the perplexing questions in CFS research, though some scientists have noticed that  patients whose symptoms come on rapidly stand a better chance of getting well than those whose illness creeps up slowly. It also seems that when the fatigue persists for more than a couple of years, patients are less likely to recover fully. Those differences, Levine says, may point to different forms of the condition.

Gerald Kennedy’s experience of deep exhaustion following a bout of strenuous activity is common among CFS patients. The solution, as he’s learned, is not bed rest but carefully controlled exercise. While many sufferers shun physical activity altogether for fear of a relapse, the muscle atrophy that ensues makes them even more tired and may worsen other symptoms. Experts now recommend that patients follow a graded exercise program from the start–beginning slowly but building, if possible, to relatively normal levels of activity.

A positive attitude can also help. “People who have a fixed belief that there is a single cause, like some unidentified virus, often have a harder time,” says Demitrack.  “They think of themselves as passive victims of something that came in from the outside. They begin with the idea that there’s nothing they can do.” Many CFS experts have begun to prescribe cognitive-behavioral therapy, an approach that’s designed to replace self-defeating attitudes with more  optimistic expectations. Preliminary studies show the method works: At Kings College Hospital in London, 70 percent of CFS patients who completed 13 sessions of cognitive-behavioral therapy showed marked physical improvement. Only 19 percent of patients in a group that practiced relaxation techniques got the same boost.

The best news of all is that many sufferers eventually get significantly better, no matter what they do.  “In our experience, 10 to 15 percent of even severe cases recover completely over the first 18 months,” says Demitrack, who has been studying the disease for more than a decade. “Another 70 to 80 percent have significant improvement. Only a few–one in ten—experience  the worst of the symptoms for more than two years.”

Still, the deeper mystery of what happened in those alpine towns in the 1980s is unsolved.  By the time federal investigators arrived, the incidence of new cases was slowing; what initially looked like an epidemic ended as inscrutably as it began.  Levine and other NIH researchers have started checking up on 287 patients who were part of that original outbreak. In 1984 no standard definition of CFS existed, and follow-up has shown that less than half fit the current definition of the malady.

Of the dozen or so teachers who regularly gathered in the makeshift faculty lounge at Truckee High, 11 developed symptoms of CFS. If researchers are right about the role of the stress-response system, the cluster might have occurred because the teachers were exposed to the same intense physical or psychological stress, or to several stresses, and those with a predisposition to CFS then fell ill.

But no toxic chemicals were ever detected in the ventilation system or water pipes or anywhere else. Records show no particularly bad cold or flu making the rounds that year, nor any obvious psychological trauma the teachers had in common. And the many other people in the area who got sick around the same time had never been inside the school or had contact with those teachers.

Whatever clutch of factors led to the outbreak seems to have dispersed. Today Peterson still gets new cases in his CFS clinic, but the numbers are now close to averages seen in similar practices. Three years ago epidemiologist Bill Reeves, who’s in charge of chronic fatigue research at the CDC, took his investigation to the heartland and captured what is considered to be the most accurate picture of how frequently CFS occurs in the United States today. He and his team studied a cross section of people in Wichita, Kansas, a city whose demographics provide a snapshot of the nation as a whole. There were 183 cases of CFS for every 100,000 people. The illness was even more common among women: 303 cases per 100,000–almost six times the rate for men.

FOR IRENE BAKER, those first six months starting in the spring of 1985 were as bad as anything she’s ever experienced –the headaches, the moments of confusion or forgetfulness, the oppressive fatigue. But one day, like melting snow, the symptoms began to recede. A year after she became ill, she was able to return to work part-time. Today she’s teaching full days–a rambunctious class of 32 fifth graders. “I’m my old self again,” she says. “I’m back to being able to do everything I want. And I have to say, I consider myself very, very lucky.”
Too Tired for Words?

Everyone gets worn out now and then. Even a week or two at a low ebb is nothing to worry about, especially if you’re busy or under stress. But if the lethargy lasts longer, talk to your doctor, since abiding exhaustion can be a sign of trouble. Problems  to consider first: sleep disorders, mononucleosis, hepatitis, heart trouble, depression, and eating disorders, all of which sap energy.   Only when other explanations are ruled out is chronic fatigue syndrome a likely suspect.

Unfortunately, there’s no simple blood test or other easy way to diagnose CFS, SO experts are left with comparing your complaints to a laundry list of common symptoms. The hallmark is fatigue that has lasted at least six months. In addition, experts look for four or more of the following: Problems with memory or concentration Sore throat Tender lymph nodes in an armpit or the neck Muscle pain Joint pain Unusual headaches Waking up tired Exhaustion after  physical activity
By Peter Jaret Peter Jaret is a contributing editor. Source: Health, May99, Vol. 13 Issue 4, p114, 9p


Although I had literally started “Chronic Fatigue Syndrome” by telling Dr. Cheney about the mold, and after years of asking, and realizing that no CFS researchers ever intended to study this factor, I hired a mycologist in 1997 to accompany me to various mold colonies.  When I disturbed one that had this same sensation as the teachers lounge, I had it identified.

“Stachybotrys Chartarum”

This opened up a whole new world.  The body of literature on Stachybotrys had exploded since it was first described in the literature in 1986.  I went back to Dr. Peterson with my new evidence and a few magazine articles about Sick Building Syndrome, and asked him to study it.


Mold Warriors by Dr Ritchie Shoemaker

Chapter 23. Mold at Ground Zero for CFS
“History Doesn’t Remember the Names of the Critics”

–Erik Argues with his Doctor and His Doctor Doesn’t Listen. Chronic Fatigue Research is Misguided for Years–

“When am I going to get an answer?”

This time it was my turn to be the angry person yelling in front of the desk.  I leaned over and shouted. “You’ve been stringing me along for a year.  Are you going to help me or not?  I need an answer and I need it now.  Just tell me YES OR NO.”

When I asked Dr. Peterson for an honest assessment of my condition, he told me “You are at a point where most people with CFS commit suicide.”  Yet, despite the bizarre onslaught of chemical sensitivities, there was one irritant that stood out above all others, and I was determined to find out why.

I asked him again if he would help me research mold, and this time I got a definite answer.  “No.”

Dr. Peterson had been my last, best hope to find an open minded doctor who would help me with this particular problem; so many others had refused.


Now, the obvious question that CFS researchers should have asked, (but refused to, even after they were told the answer and informed that, as CFS researchers, it is their responsibility.. if they want to “solve CFS”)… is whether a substance that showed up in the VERY cluster of mystery illness that started CFS was also present in others, such as the Elk Grove teachers mentioned in the abstract.

It was a simple matter to call them up.  The answer was yes. They knew all about it.

ErikNewspaper TTUSD mold
TAHOE WORLD Page 2B Thursday January 7 1999 Education Tahoe Truckee Unified School District cleans up mold, plans to check other schools By Tanya Canino / Tahoe World Staff

The toxic mold Stachybotrys was identified in Elk Grove school AFTER this phenomenon was discovered, just as it was found and remediated in our schools.

A common denominator had emerged in the VERY SBS/CFS cluster that started the syndrome, and CFS researchers knew nothing about it.

I was excited to have information that CFS doctors, researchers, advocates and patients would want to have.  And began contacting them.  I hit all the top ones, the institutes, the CFS advocacy orgs, such as the CFIDS Association of America, the NCF and IACFS/ME… ME groups.  British ME/CFS doctors, groups, researchers, etc.

Here is how they responded.

“You can’t prove it.”  “It’s anecdotal, doesn’t mean anything.”  “That doesn’t matter. CFS has moved on since then.”

Not once, twice, or even a few hundred times.  I got this same reaction a THOUSAND times.  Barely a handful of patients were interested, but no one else.

It is clear that while patients believe these abstracts are intended to inspire “further study”, the reality is the exact opposite. These documents are wielded like weapons of suppression to “prove” no one knows anything, or CAN know anything about the subject matter.

Clues in plain sight remain unseen due the dominance of clue-crushers who fight to maintain CFS in a state of confusion.

Even to the extent of “oblivionating” the first eight years of CFS history, and battling down information from the very inception of the syndrome.  And this isn’t by the CDC/NIH or DHHS.
It is by CFS doctors-researchers-“historians”-advocates and documentarian who otherwise say they all want to get at the “real truth about CFS”.

The original CFS cohort, along with our evidence, was deliberately “INVISIBLED” by the very people claiming to represent and study the disease.

And thanks to the 100% refusal rate of CFS researchers to respond, even to this very day, the Tahoe Mystery Illness remains The Invisibled Disease.


Next topic. Why it IS possible that multiple buildings can get worse at the same time.

What is CFS UN-TIED?

Guest blog by Erik Johnson

Ted Van Zelst’s plan to find evidence in the Tahoe outbreak to compel the CDC into action was a spectacular success. (See https://cfsuntied.net/2015/08/24/what-is-cfs-holy-grail/)
The CDC grudgingly dredged up a token gesture of deference by handing us what Straus called “A default pathway for a viral hypothesis.”

As I explained in “Snatching Defeat From The Jaws of Victory“, the problem was that the CFS community didn’t care to learn why CFS was coined, and those who did were against supporting those parameters as being the basis of the syndrome…. due to their feeling that since they hadn’t been tested yet, they didn’t want to take a chance on being excluded.

In essence, the new “CFS community” demanded that CFS be nothing more than what they knew about CEBV Syndrome. The only thing they wanted from our outbreak was to exploit our publicity to generate credibility for their own agenda.


It was the best of times, it was the worst of times.

We had won against the CDC, but we lost in the eyes of the patient community.

The instant that CFS was coined represented the very last gasp of scientific honesty, even as “science” began to choke on its own deception.

Dr Carlos Lopez, who convened the Holmes committee, announced the purpose of the syndrome this way:

“We’ve had similar outbreaks since the 1930’s” explains Carlos Lopez, chief of the Herpes-Virus Division there.   “The Scientific literature has described something like it for the past 50 years.”  It has also been known as Royal Free disease, epidemic neuromyasthenia and myalgic encephalitis.”

Lopez hopes the definition will serve as a unifying force in identifying the syndrome.  “Our investigators were looking at one specific virus, Epstein-Barr (in Incline Village).  What we’re dealing with is a series of symptoms, possibly resulting from a number of viruses.”
Other causes might be infectious agents, or the body’s inability to respond to infection, toxic materials, stress or other psychological reactions, or a combination of these factors.


The CFS term was only going to be provisional until the new evidence could be compared against other outbreaks of Myalgic Encephalomyelitis to, as Dr. Lopez stated, be a unifying force in identifying the syndrome -at which point it would be given a better name.  Dr. Cheney told me, “Now that the CDC is finally looking into this, I don’t expect the name to last more than a couple of months.”

But since the ME literate doctors had abandoned us, and the CFS community refused to conceive of the original CFS cohort as being the basis of the new syndrome, the CDC had no need to go any further.  Except of course, that pesky little detail that science tells us that a name applied to an entity, belongs to that entity.

A piece of useless trivia to CFS-land, and to which the CDC didn’t necessarily refuse to abide by. They DID, after all, leave it open that they might, at some future date.  And they didn’t argue with Petersons usage of the term for his “disease”.  They simply weren’t going to adhere to science so long as the CFS community didn’t care.

My efforts to explain “the real CFS story” to support groups in-person were received with hostility and disinterest.

I was accused of “Trying to make it all about yourself”  Called arrogant and egocentric.
A “megalomaniac” who wildly and even psychotically overestimates his importance in the scheme of things.

They simply could not be made to understand that I was part of the Van Zelst project to raise the bar on behalf of patients.


Enter the Internet

The advent of social media in the late 1990’s gave me hope that I could connect with others who would appreciate what Van Zelst had done, and would see that the ability to use the founding-evidence was still as relevant now as it was back then.

Perhaps I could “advertise” in such a way that the words “I am a survivor of the 1985 Lake Tahoe Mystery illness, and prototype for CFS, and I can tell you about it”  would bring out those with a sincere interest.

Alas, it was not to be.. at least, not for a long time.

As pretty much everyone knows, for my efforts, I was blocked, deleted, ostracized and castigated in every ME and CFS group that I ever joined.  CFS advocates didn’t agree on much, but there was universal cooperation on the principle that anyone on Earth
could have an opinion about CFS, anyone can say what CFS is…. that is anyone except for a prototype for the syndrome, who can say nothing.

Not even when all the prototype says is “CFS happened exactly as described in the newspapers and documents of the time.”

I would point at Osler’s Web and get the angry retort, “Go away, go write your own book.”
I learned that “Why don’t you make your own blog” was a euphemism for “Get lost and stuff your information somewhere that we don’t have to look  at it”

Here then, was the reason “So little is known about CFS”.   The patient groups themselves dictate it.


CFS United?

 

One last shot at attempting to get patients to “cooperate” was the 2007 “CFS United” message board, intended to be a forum where people could hear the backstory to the creation of CFS.  The plan was just a continuation of the Van Zelst strategy, where if we could just “unite” on the basic and verifiable documented facts that created the syndrome, we would have a platform of solid evidence of “what CFS is” that all could agree on.

And just like 1987, compel a response by pointing out that a lack of one is spitting in the face of science.

CFS United crashed and burned almost immediately.

The precept that a syndrome must conform to the evidence for which it was created is universally rejected.   The group almost unanimously subscribe to the notion that CFS is whatever the majority decides it is -that whomever describes the condition better is the best representative, and can take the right to say what CFS is.

The danger in this line of thinking, of course, is that some people describe Lyme disease very well, but that may have nothing to do with the flu-like illness that hit Lake Tahoe.  And moreover, the mindset that the issue can be settled in such a way automatically removes the idea that the Tahoe evidence still needs some studying.

The most prestigious member of the Holmes committee refused to sign the “Straus altered” CFS definition assembled by Gary Holmes, writing repeatedly that without some objective marker that can be measured, or at least specifying the particular outbreak under investigation, that the whole thing would be an exercise in futility, because people would simply twist, distort, omit or fail to attach importance to evidence..
and take it over.

Just the fact alone that not a single CFS researcher ever bothered to try and find out what happened in the original cluster that scared Cheney and Peterson into calling the CDC for help is proof enough that “Syndromes don’t work”.

Such universal collusion of concerted bias can scarcely be an accident. CFS obviously unveiled something Dr. Kieff was well aware of:

Humans are not honest enough to stay on the straight and narrow of their own accord.
The temptation to pick it up and take it away as “unclaimed property” is considered as eminently reasonable as keeping a wallet loaded with money that has no identification.
“Someone is going to get it, If the owner is unknown, it may as well be me.”

Except in this case, we know who CFS belongs to.  The 1985 Lake Tahoe Raggedy Ann Syndrome.


Since it is impossible for a prototype for CFS who sticks to the founding CFS evidence to unite with a CFS community who are bound and determined to hijack the syndrome from someone who has every right in the world to say what CFS is,  I changed the name of the website effort to “CFS UN-tied“.

“Liberation from cooperation.” in order to stick to the original story. For the few who are honest enough to want it.

That is what CFS Un-tied is.

What is CFS?–The Holy Grail part 2–Snatching Defeat From The Jaws of Victory

Guest blog by Erik Johnson

CFSers Snatch DEFEAT Right Out Of The Jaws of Victory

I described in “What Is CFS? – The Holy Grail” how Ted Van Zelst hatched a plan to use the spectacular Lake Tahoe outbreak to force the CDC into rethinking their attitude toward the “adult mono” of the early 1980’s.

By all accounts, the Tahoe outbreak didn’t precisely match the known clusters of EBV Syndrome, but that didn’t matter.  Ted Van Zelst’s idea was to get a foot in the door.  Once in, the discrepancies in one illness would have to be studied to understand the others.

There was enough in common between the illnesses that the Tahoe outbreak fit the published definition of CEBV Syndrome.  However, Dr. Cheney and Dr. Peterson’s new tests by the Nichols lab pushed the boundaries of the Tahoe entity into new territory by showing that the same constellation of symptoms could exist even without the presence of  EBV.

Stephen Straus was still hoping to sell his EBV-based “Neuroasthenia” fatigue illness to the 1987 Holmes committee by treating Tahoe as a possible subset – an aberration, or possibly unrelated to the adult mono.  But the newly published “Holmes Study” handed out by Gary Holmes put Straus into a ballistic fit, as this clinched the deal that the Tahoe “HBLV (HHV6A) outbreak was the primary purpose of meeting…and that pushed EBV right off the table.


Dr. Byron Hyde recalled Straus’s reaction to the paper:

“He held a monologue that lasted at least two minutes. 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.


It has always amazed me that no one questions why Straus had such a violent reaction.
CFS advocates and “historians” assure me that “Straus WON.  He got what he wanted.  CFS was what STRAUS wanted the syndrome to be.

Gee. What a strange reaction for someone who just “won”

The reality is that STRAUS LOST. THAT is why he flew into a rage.

Straus’s “Neuroasthenia” was out.

The syndrome was going to be for the Lake Tahoe outbreak, which by now, Dr. Cheney had been calling “Chronic Fatigue Syndrome” as per Straus’s suggestion.

The demolition of the Straus-Jones faction threw the door wide open… but who was to rush in?

Hyde, Parish and Shelokov… had left.


http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
A Brief History of Myalgic Encephalomyelitis and an Irreverent
History of Chronic Fatigue Syndrome
As presented at the London Conference of May 12, 2006 by Byron Hyde MD:

Many of the M.E. epidemics started out among children or students. This occurred in the 1936 Fond du Lac epidemic, the 1946 to 1949 Akureyri epidemics, the 1950 St Joseph Infirmary epidemic, the 1952 Middlesex epidemic, the 1955 Cumbria Street Children’s Hospital. It was not then surprising, that the Incline Village epidemic should also
start among students.

The Lake Tahoe Epidemic
The Lake Tahoe epidemic that started in August 1984 also started among students. In this case the epidemic began in a high school girls basketball team that was travelling in a bus to play various other teams. The epidemic spread rapidly with an incubation period of approximately a week. As in many of the other epidemics, it then spread to the general community. After the epidemic started it then involved three high schools, both students and teachers and ultimately spread to the community. For some reason it was considered to be an epidemic of infectious mononucleosis. This is an illness caused by a virus Epstein Barr Syndrome. Associating the Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous and you will see why almost immediately.

Dr. Paul Cheney and Dr. Daniel Peterson were inundated by the number of rapidly developing cases of seriously ill patients and called for the Centre for Disease Control (CDC) in Atlanta for back up. Initially CDC did not appear to (be) very interested. Members of Congress were then called and CDC jumped to investigate. According to one of the principals who related the story to me, a crew headed by Dr. Gary Holmes from CDC came out to Incline Village from Atlanta, drew blood samples from the ill patients and spent much of the short remaining time in Lake Tahoe playing golf. It is possible that the CDC crew would have done a much more thorough investigation but they did not and this may have been due to the political forces that gathered steam.

Business Comes First
Reputedly, members of the business community whose commercial interests depended upon tourist trade and the seasonal ski business did not want news hitting television and other media that there was a devastating infectious disease running around Lake Tahoe. It would have cost the business community millions of dollars. Accordingly, I was told that pressure was then placed upon the congressmen to stop CDC from investigating this epidemic further or they would lose their jobs. And apparently, so it came to pass. There was little further investigation except for the sustained efforts of Dr Paul Cheney and
Dr Daniel Peterson. Reputedly, increasing negative pressure and threats were placed upon both of these physicians, sufficiently so that Dr Cheney eventually moved his family to South Carolina.

First International Symposium on Immunology and Pathogenesis of
Persistent Virus Infections.

Fast-forward to April 1987 and the First International Symposium on Immunology of Persistent Virus Infections held in Atlanta Georgia. This was a symposium hosted by the CDC and Dr. Carlos Lopez. At this meeting Dr. Gary Holms gave out his new paper, “A cluster of patients with a chronic mononucleosis like syndrome,” that had just been
published in JAMA. (See Holmes, Kaplan, Stewart et al: JAMA 1987: 287:2297-2302)
The publication essentially stated that Epstein Barr Virus was not the apparent cause of this illness in the 130 patients from which they took blood samples. But they weren’t sure and suggested that further study be done. Stephen Straus who was apparently the NIH chief behind the Lake Tahoe investigation was sitting beside me at this symposium. When Dr. Holmes gave both Dr. Straus and myself the paper, Dr. Straus in a monolog to him reacted very negatively, stating that the patients had tricked him. I was amazed.

What did we know about M.E. in 1984 after the Lake Tahoe epidemic. The CDC investigators and the physicians of Lake Tahoe were dealing with a fast spreading infectious disease of a short one week or less incubation period. Obviously this was consistent with the epidemics of Myalgic Encephalomyelitis already documented in this brief history. Like the several epidemics noted that started with children or students, so did this.  Like the patients in all of the epidemics discussed, the effects of the infection involved the Central Nervous System but unlike a stroke caused by an embolism, or malignancy, or arterial obstruction, the CNS involvement that occurred in these patients were not focal but consistent with a diffuse CNS injury.

In the Lake Tahoe epidemic as in the previous epidemics described, the type of Central Nervous System involvement was obviously of a more diffuse nature and the type of peripheral involvement that caused so many troubling symptoms in all these epidemics was consistent with a very low grade vasculitis (See Mercy San Juan Hospital Epidemic) or in many cases a classical radiculopathy (spinal nerve root involvement) or even a very low grade Guillain-Barre’ Syndrome as was described by Alberto Marinacci when he examined the Los Angeles County Hospital patients (See Dr Marinacci’s book Applied Electromyography. Lea & Febiger, 1968: Chapter 9).  However, I should note that the mere mention of Guillain-Barre’ Syndrome drives many neurologists crazy. They say that GB is a severe disease that if not treated effectively may kill or leave the patient permanently disabled. However, all real diseases have a wide variety of penetration from so mild that they may be missed to, in some diseases, having potentially mortal consequences.

If we consider the Lake Tahoe epidemic alone we have the primary definitional determinant of Myalgic Encephalomyelitis.

The Lake Tahoe Epidemic represented an illness
a. With an acute onset.
b. With an incubation period of 4-7 days,
c. Occurring in both students and adults,
d. Involving the central nervous system in a diffuse, non focal manner,
e. The onset of a Raynaud’s disease along with a peripheral coldness, blanching and pain syndrome of fingers, hands and feet or significant postural hypotension or instability. A non-traumatic, acute onset of these two syndromes is consistent with an injury or a significant diffuse change in the autonomic physiology of the subcortical brain.
f. Rapidly developing flaccid muscle weakness with minimal effort or activity, (The Lake Tahoe epidemic was initially called Raggedy Anne Syndrome due to this finding.)
g. There were two illnesses, an acute viral like illness and a secondary persisting illness that in the more severe cases left permanent persisting sequelae.
h. With peripheral pain symptoms that have variable features resembling in some cases, a radiculopathy,, in some cases a vasculitis, and even a very low grade Guillain-Barre’.

Although the final terminology of conclusion “h” is subject to debate, are features “a to g” a very difficult set of conclusions to come to? I don’t think so. There is a consistent similarity of the Lake Tahoe epidemic patients to all of the previous epidemics mentioned in this short history and the many others that are documented in our textbook. The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
Yet retain these above Lake Tahoe Features in mind when we come to the first CDC definition that was largely based upon this very same Lake Tahoe epidemic illness.

1987: The first CDC definitional meeting

I have mentioned the April 1987, First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections held in Atlanta Georgia hosted by the CDC and Dr. Carlos Lopez. At the termination of this meeting to discuss the creation of a definition
for this 1984 Lake Tahoe Raggedy Anne Illness that had appeared sporadically and in clusters in many areas of the United States and Canada.

Approximately 25 people showed up for the meeting. Included in the 25 physicians and scientists were Dr. Alexis Shelokov, Dr. J Gordon Parish and myself. Other than Dr. Gary Holmes and Dr. Stephen Straus, at that time I was not aware of whom the other people present may have been. Of Shelekov, Parish and myself, I was clearly the least
knowledgeable of the three having seen by then some hundred or so patients with M.E. and read extensively the existing literature.  However my knowledge at that time could not be compared to these two published giants.

It was obvious that most of the assembly associated this epidemic disease with Epstein Barr Virus and infectious Mononucleosis, what the British refer to as glandular fever. It was immediately apparent that the consensus was going to be highjacked by this majority. Dr. Shelokov and Dr. Parish decided that this meeting was going nowhere and so decided to leave before it terminated. I followed them knowing full well that if I was going to learn anything credible about this disease process then I had to understand their incredible
knowledge base that had been developed for over 20 years.

It was a wise choice for me in terms of acquiring knowledge but it was a bad choice in that had we stayed, we might have influenced the decision that was to appear in 1988.

The 1988 CDC definition did several things, all of which caused immeasurable confusion.
Why did the 1988 CDC definition damage our knowledge and understanding of the epidemic and endemic disease? Remember that in describing the Lake Tahoe epidemic this committee were describing a typical Myalgic Encephalomyelitis Epidemic
.
Major Problems of the 1988 CDC definition
It is my opinion that the CDC 1988 definition of CFS describes a non-existing chimera based upon inexperience individuals who lack any historical knowledge this disease process. The CDC definition is not a disease process. It is (a) partial mix of infectious
mononucleosis / glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance.


Dr Carlos Lopez of the CDC’s herpesvirus division announced the results of this meeting, which shows that despite the absence of the ME literate physicians, the evidence had
prevailed anyway.
This clearly shows the shift in focus from CEBV Syndrome to Lake Tahoe “HBLV disease”, “similar to myalgic encephalitis”.


Epstein-Barr:  Myth and Reality
Nov 23 1987
by Sandra Gurvis – The Spokesman-Review

http://news.google.com/newspapers?nid=1314&dat=19871123&id=yB4SAAAAIBAJ&sjid=C_ADAAAAIBAJ&pg=6853,5242426

Charlene, a 35-year-old married mother of two, wept with relief when she learned she had chronic Epstein-Barr virus (CEBV).  “I’d been sick off an on for over two years and no one could tell me what was wrong.  One doctor thought I had hepatitis,  another sent me for an eye test, still another prescribed tranquilizers and suggested counseling. At last what had been plaguing me had a name.”

Yet her diagnosis, like that of thousands who claim to suffer from CEBV, has generated a tremendous amount of controversy within the medical community.  Some doctors believe CEBV is a genuine ailment, while others regard it as a buzz word for hypochondria.  Still others consider it a catch-all diagnosis for symptoms that can’t be explained, as had been the case with low blood sugar, iron-poor blood, and thyroid disorders in the past.

According to medical definitions, Epstein-Barr is a herpes virus, similar to chicken pox, genital lesions and cold sores. It is closely related to infectious mononucleosis in the United States and Western Europe, Burkitt’s lymphoma (a tumor of the jaw) in Africa, and cancer of the nose and mouth in Asia.

“The Epstein-Barr virus is present in the white blood cells in over 90 percent of the American population,” explains Dr. Ronald Glaser, chairman of the Ohio State University Department of Medical Microbiology and Immunology in Columbus.  The virus is believed to be transmitted by saliva.  “Usually it remains dormant until the immune system weakens, causing it to proliferate.”

And unlike mono, which strikes during adolescence and college years. CEBV affects adults.  “During the first three to six weeks of incubation, patients show few or no symptoms,” states Dr. James Jones of the National Jewish Center for Immunology and Respiratory Medicine in Denver. “The illness takes hold, may worsen, then reaches a plateau, waxing and waning at seemingly unpredictable intervals.”

“Victims of the disease, dubbed the “yuppie flu” are primarily women, health professionals and high level executives in their 30’s and 40’s.  The symptoms, they say, range from partially to completely disabling, cutting them off from their jobs, recreational activities and loved ones.

“The disease took over my life,”  Charlene asserts,  “I ran a counseling program for 13 years and had to quit. Whenever I have bad spells, I’m forced to hire a babysitter to help care for my kids. I love my career and my family, but I’m too sick to handled them full time.”.

Also nicknamed the “Raggedy Ann Syndrome” because sufferers feel as if they’ve had the stuffing knocked out of them, CEBV first received national attention in 1985 after an outbreak of a mysterious illness in Incline Village, near Lake Tahoe.

According to an account in Hippocrates magazine, two local doctors, Paul Cheney and Dan Peterson, began seeing an uncommonly large numbers of patients with persistent flu-like symptoms.

The patients tested negatively for mono, so Cheney and Peterson did some research, coming upon articles on CEBV in a medical journal. They then ordered a recently developed diagnostic test from a commercial laboratory. The results showed high levels of antibodies to the virus in sufferers.  Thus, a syndrome was born — or perhaps reborn.

Because of the outbreak appeared to be centered in the Lake Tahoe area, the Centers for Disease Control (CDC) sent two researchers to investigate.  Their highly publicized report in May 1986 questioned not only the validity of the lab test but pointed out that healthy people also had high antibody counts.

The findings led many physicians to assume that CEBV was a fraud, even though more cases kept surfacing. “There’s a large element of “me, too” in this,” says Ohio State’s Glaser.  “Once news of a disease hits the media, people start thinking they have it if they’re tired or depressed.”

However,  “not everyone who is sick is imagining this,” he insists, “Many are truly ill. They have clinical symptoms to prove it. And well-adjusted people who lead vigorous, active lives don’t suddenly become too ill to lift their heads. Something is out there. We just don’t know exactly what.”

The CDC is currently compiling a standard clinical diagnosis for Chronic Fatigue Syndrome for use by all doctors.

“We’ve had similar outbreaks since the 1930’s” explains Carlos Lopez, chief of the Herpes-Virus Division there.

“The Scientific literature has described something like it for the past 50 years.”  It has also been known as Royal Free disease, epidemic neuromyasthenia and myalgic encephalitis.

Lopez hopes the definition will serve as a unifying force in identifying the syndrome.  “Our investigators were looking at one specific virus, Epstein-Barr (in Incline Village).  What we’re dealing with is a series of symptoms, possibly resulting from a number of viruses.”

Other causes might be infectious agents, or the body’s inability to respond to infection, toxic materials, stress or other psychological reactions, or a combination of these factors.

And research is beginning to uncover a few things.  Dr. Robert Gallo of the National Institutes of Health, who also identified the AIDS virus, recently discovered a new herpes virus, (HBLV) which may be involved in Chronic Fatigue.  Researchers are currently trying to isolate HBLV in patients who already have the syndrome.

Preliminary results of a study by David Portilo of the University of Nebraska Medical Center link Chronic Fatigue with viruses known to cause sore throats (adenoviruses).  And Ohio State’s Glaser is studying diagnostic “markers” associated with the Epstein-Barr virus and nasopharyngeal (nasal) carcinoma. He hopes to find an antibody that will serve as a common denominator in diagnosing some cases of the syndrome.


Yet look again at Dr. Hyde’s description of what happened.

————————————————————-

http://www.investinme.org/Documents/PDFdocuments/Byron%20Hyde%20Little%20Red%20Book%20for%20www.investinme.org.pdf

The Lake Tahoe Epidemic
The Lake Tahoe epidemic that started in August 1984 also started amongst students. In this case the epidemic began in a high school girls’ basketball team that was travelling in a bus to play various other teams. The epidemic spread rapidly with an incubation period of approximately a week. As in many of the other epidemics, it then spread to the general community. After the epidemic started it then involved three high schools, both students and teachers and ultimately spread to the community. For some reason it was considered to be an epidemic of infectious mononucleosis. This is an illness caused by a virus Epstein Barr Syndrome. Associating the Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous and you will see why almost immediately.

Dr. Paul Cheney and Dr. Daniel Peterson were inundated by the number of rapidly developing cases of seriously ill patients and called the Centre for Disease Control (CDC) in Atlanta for back up.

First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections
Fast-forward to April 1987 and the First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections held in Atlanta Georgia. This was a symposium hosted by the CDC and Dr Carlos Lopez. At this meeting Dr. Gary Holmes gave out his new paper, “A cluster of patients with a chronic mononucleosis-like syndrome,” that had just been published in JAMA. (See Holmes, Kaplan, Stewart et al: JAMA 1987:287:2297-2302)
The publication essentially stated that Epstein Barr Virus was not the apparent cause of this illness in the 130 patients from which they took blood samples. But they weren’t sure and suggested that further study be done.

Epstein Barr Virus (EBV)
Now anyone who realizes that infectious mononucleosis is caused by the herpes family virus, Epstein Barr Virus (EBV), and that the incubation period of this illness is approximately 40 days, should have realized that you simply cannot have a rapidly spreading viral epidemic with a virus with a latent period of 40 days.

Neither Dr. Straus nor Dr. Holmes, senior government physicians, should have fallen into such a trap. They only had to go to the excellent CDC library to realize that rather than spending half a million dollars or so on a publication that they should have known would not have incriminated EBV.

Yet this epidemic somehow spread the myth that this illness was caused by EBV. Today, as I write this short history of M.E. and CFS the vast majority of physicians and the public still associate Epstein Barr Virus with CFS. Such is the perseverance of error.

————————————————————-

How was this myth spread – when our outbreak is what publicized EBV even as we were disproving it.. leading to the creation of this new syndrome of CFS?

Simple.

At least 250 “EBV groups” had sprung up.  The Holmes definition didn’t make the reasons for the change clear, and these groups just plain never looked at why CFS was coined.  The ambiguity of extracting “defining elements” from the Holmes definition worked like a charm.

Straus’s plan not only succeeded, it was CARRIED OUT BY THE BRAND NEW “CFS COMMUNITY” THEMSELVES.

We went right back to “CEBV Syndrome” under a new name.  The door that was thrown wide open… slammed shut again.

Just as Straus hoped, the CFS community, thinking they were educating the public about CFS, declared war on it.

As Dr. Hyde says, spreading the myth that CFS was caused by EBV for the next 20 years… and “de-educating” the public of the real reasons CFS was created.

Now, does this mean that the evidence that started CFS has lost its meaning?

Not at all.  Science has no statute of limitations.  Facts do not become stale like old bread.  There was no reason to discard them, despite this setback.

And once again, that is what the CFS community did.

They said,

“Tahoe doesn’t matter.”

“CFS is not my illness.”

“CFS is what Straus says it is.”

“CFS has moved on since then, none of that is important anymore.”

“You just want to cling to the past, what is done is done. The CDC won and we lost.”

“You are just crying over spilt milk.”

“Why don’t you just shut up and look forward.”

And in this way, all decided to blow their case, just as surely as a person who could free himself by DNA evidence decides to forego science as just bullshit that doesn’t matter and to throw themselves on the mercy of the court.

A court which strangely doesn’t seem to have any.


From a scientific perspective, a syndrome can not be made devoid of its original purpose.

Nor can its “charter evidence” be arbitrarily set aside.   It is just as relevant now as the day it was compelling enough for the CDC to coin a new syndrome. It could still be used today just as effectively as 25 years ago.

Even the CDC knows this.  But they have nothing to worry about.
They aren’t the ones who ultimately agreed to toss it all out and never use this evidence.

Nope.

They simply stood back and let the CFS community trash it for them.

I’m sure even the CDC must be amazed and astounded at the success of Straus’s simple plan to misname the syndrome and throw the ball back to the CFS community as
to whether they agreed “CFS” represented the Tahoe evidence or not.

There has probably never been another instance in history when an advocacy effort so completely managed to snatch total defeat right out of the jaws of victory.

What is CFS? – The Holy Grail

GUEST BLOG BY ERIK JOHNSON

The matter of “What is CFS?” is of utmost controversy and bitter debate.

But I know EXACTLY why the syndrome was coined, and the reasons for it.  My presence at this conference is to explain the circumstances under which I was asked to serve as a prototype.

This is the backstory of why the syndrome was coined, and is the basis of why there is a syndrome called CFS.

Raggedy Ann Syndrome

In short, during the early 1980’s there was an illness sweeping the USA called “adult mono”, a strange and unknown reactivation of Epstein-Barr virus.  . This “adult mono” was life-destroying by causing chronic fatigue.  It was called the “yuppie flu”.

But it was not spectacular enough or devastating enough to capture the imagination of doctors, and was largely ignored.  Many people tended to recover on their own if they took better care of themselves.

Then my town of Incline Village was hit with a savage flu-like illness.

http://articles.latimes.com/1986-06-07/news/mn-9956_1_lake-tahoe

It had elements in common with “adult mono”, but also many contradictions – one of which was a condition of such weakness and inability to control the limbs that it was virtually paralytic.

The CDC objected that with its long incubation period, it was nearly impossible for EBV to result in huge outbreaks, and initially refused to investigate for this reason.

A local teacher described it as like a “Raggedy Ann doll with the stuffing knocked out”.  So this “not quite like yuppie flu” illness was called “Raggedy Ann Syndrome”.  Due to the Raggedy Ann Syndrome being spectacular and devastating to our community, it captured the attention of the world.

Ted Van Zelst

A wealthy Chicago businessman named Ted Van Zelst, who was trying to get help for his daughter with the “adult mono”, saw an opportunity to use the greater severity of the Raggedy Ann Syndrome to force the CDC out of its disinterest and inaction toward the “Yuppie Flu”.  Van Zelst believed that in such a serious and spectacular outbreak such as ours, surely some immune abnormalities would be found.  These could be used to force the CDC to do something.

http://articles.chicagotribune.com/2009-07-10/news/0907090755_1_young-engineer-soil-sound-barrier


From CFIDS Association of America:

History:  Timeline

Timeline of Key CFIDS* Events

1956

The term “myalgic encephalomyelitis” is coined for a CFIDS-like illness, investigated by Dr. Melvin Ramsey and published in the Lancet.

1984

First documented cluster of approximately 200 CFIDS cases occurs in Incline Village, Nev.  This outbreak focused attention on the condition in the United States.  Dozens of children and adults in Lyndonville, N.Y. begin reporting a severe flu-like illness.  Suspected cause of their symptoms:  CFIDS.

1987

Name “chronic Epstein-Barr syndrome” begins to be used in U.S., based on preliminary studies by Dr. Stephen Straus of the National Institutes of Health (NIH); he later revises his theory linking the illness to Epstein-Barr virus (EBV) following intense scientific criticism.

The Charlotte CEBV Association (named following speculation about EBV as cause of the illness), founded by Marc Iverson and Alan Goldberg, begins to meet.  This group later becomes the CFIDS Association of America (TCAA).

Ted Van Zelst, whose adult daughter has CFIDS, becomes the first person to testify before Congress requesting research funds for the illness.  His congressman, John Porter, becomes a strong supporter of CFIDS issues.

1988

The Centers for Disease Control (CDC) publishes the first official case definition in the Annals of Internal Medicine.

The National Institute of Allergy and Infectious Diseases (NIAID) reports that 25 percent of the calls taken by their communications office are about CFIDS.  Only AIDS has a higher volume of calls.

cfsuntiedavatar_thumb_thumb.jpg


Van Zelst had given funding to a Harvard doctor in Boston (Dr. Anthony Komaroff) to generate compelling evidence from his yuppie flue patients to validate the “adult mono”, but aside from abnormal neurological testing results, nothing concrete had shown up.  Van Zelst contacted Dr. Paul Cheney of our town and made him the same offer.  He had Dr. Komaroff come to Incline to collaborate in the search for some evidence.

The CDC had made a quick investigation of our outbreak and found that we did not match the adult mono illness, and left, planning no further study.  All they did was look for EBV and nothing else.

The CDC had no interest in our Raggedy Ann Syndrome and was going to carry on treating yuppie flu as they had been – as a trivial condition of people who didn’t take care of themselves.

Dr. Cheney and Dr. Dan Peterson persevered and did MRI scans, using the first MRI to be set up in Nevada.  These showed punctate lesions that were similar to those found in AIDS patients.  This was the first evidence that made it look bad for the CDC to ignore us.

Then Dr. Peterson sent blood to the Gallo lab and found a newly discovered virus, Human Herpes Virus Six, Variant Alpha (NOT Beta, which is the roseola virus and is a completely different animal).  The CDC had no choice but to be drawn back into the investigation, as now we looked like a new disease of “HHV6A”.


Patients-tested-for-new-virus0001_th

North Lake Tahoe Bonanza, Friday October 10 1986

Tahoe patients tested for new virus

by Jean Lamming NLTB Staff Writer

An Incline Village resident stricken with Chronic Epstein-Barr Virus said Wednesday that the national medical researchers believe a new virus they have discovered is partly to blame for the syndrome.

Bill Rulle said researchers from the National Institutes of Health in Bethesda, MD. interviewed him last week in Incline and took samples of his blood.  They will test it for a virus they discovered a year ago and think might be a partial culprit in the fatigue syndrome that struck some 200 North Shore and Truckee residents in the last two years.

“They think there might be a new virus and that what it is doing is triggering the Epstein-Barr Virus reaction on a constant basis.” Rulle said of the National Institutes of Health (NIH) researchers.

The researchers are calling the new virus HBLT and B-cell lymphoma, Rulle said.  New tests for the virus are inconclusive.

Its symptoms include a positive test for Chronic EBV and the fatigue syndrome that accompanies it, said Rulle, who calls himself an “interested patient.”

Doctors, including Incline internist Paul Cheney who treated many area fatigue patients, and officials at the NIH have been vague on the subject of a new virus.

Cheney said in September that news of a medical discovery that might eventually be linked to Lake Tahoe would be announced in a prestigious medical journal this year.

A spokesman for Science magazine, a definitive professional research journal, said Monday that the magazine would carry two research articles from the NIH’s cancer research division in its Oct. 24 edition.

The Science spokesman declined to comment on the content of the articles and said researchers involved are bound not to release information on articles before they are published.

The NIH researchers, who have reportedly tested about 72 blood samples from area residents for presence of the new virus, took another 90 samples from residents during a visit last week, Rulle said.

As many as 90% of the 70-some Lake Tahoe CEBV patients tested for the new virus show positive signs of carrying it under the new test, Rulle said.  Results of blood tests from people who are not infected with CEBV showed none were affected with the new virus either, he said.


– “They are relatively sure that the new virus is in fact activating the EBV and not the other way around.” – Bille Rulle Incline Village fatigue illness victim. –


The test is too new to be conclusive, but supports the hypothesis that CEBV, which most adults carry latently, was activated in many area victims by the new virus, Rulle said.

“That was a scientific basis that what we have here is a new virus and all we can see as a symptom is CEBV,” said Rulle.

“They are relatively sure that the new virus is in fact activating the EBV and not the other way around.” he said of researchers.

The symptoms of the new virus fall under the umbrella of symptoms CEBV victims suffer from in varying combinations and degrees, Rulle said.  These include chronic fatigue, upper respiratory-tract infections, headaches, tingling and loss of feeling in extremities, dizziness, memory loss, sleep disturbances and more.

Rulle, who has been sick with CEBV for about two years, said if people at Lake Tahoe have the new virus, they might be among the first to develop antibodies to it.

“That is why we have two groups from NIH very interested – the scientific group that discovered it (new virus) and the people who recently visited who study viral groups in populations.


It was at that juncture that Ted Van Zelst appeared and made his pitch to Dr. Cheney about working together to battle the CDC.

EBV-negative Prototype

Dr. Cheney wanted to use a brand new cell flow cytometry lab – “Cytometrics” – that was doing sophisticated blood cell analysis, but this was very expensive.  Van Zelst paid to cover the cost.  Since the goal at this point was to overcome the CDC’s fixation on EBV reactivating for trivial reasons, Dr. Cheney set out to find people with the same signs and symptoms of the Raggedy Ann syndrome (more severe than yuppie flu), but who were EBV negative.

I was the first one.

As told in “Surviving Mold”, when Dr. Cheney asked me to volunteer to be in his project to break the CDC impasse, I refused, and told him that since the mold was making me sick, I was not a perfect representation of the new viral hypothesis of “HHV6A Disease”.

Dr. Cheney said this didn’t matter.  The HHV6A virus was the main point of interest, and my mold problems were a secondary issue which would not interfere.  Here is where I saw my chance to get research into the mold, which was ALSO being ignored by the medical profession.  So I agreed, on the basis that when researchers came to investigate, I could tell them about the mold that had very obviously been having an effect where clusters of “HHV6A disease” emerged.

Abnormalities

The cell flow cytometry found high red cell debris, an inverted CD4/CD8 ratio, and reduced B cell population – which was very scary to the CDC’s herpesvirus division, headed by Dr. Carlos Lopez.  Lopez now took a personal interest in the Raggedy Ann “outbreak”, as the new HHV6A had been found by the Gallo lab to be a major problem in AIDS patients – and the similarity of MRI scans spoke to a common pathway.

At the same time, the funding Van Zelst had provided to Dr. Komaroff for the purpose of finding immune abnormalities in our outbreak as a demonstration to the CDC had paid off.  Low NK cell function was found.


North Lake Tahoe Bonanza, November 16 1987

“Incline Victims Show Cell Abnormalities”

Tests Reveal New Clue in Fatiguing Illness

by Chris Fotheringham NLTB Managing Editor

Laboratory results published this week in a prestigious medical journal confirm that over 50% of Incline Village chronic fatigue patients tested have suffered “dramatic” abnormalities in their immune systems.

Calling it the “most significant finding yet” in efforts to unravel the mystery of the widespread fatigue illness, Harvard researcher Dr. Anthony Komaroff said Monday the report published Sunday in the Journal of Immunology is the first scientific study that confirms “something is wrong with these people.”

“It really is dramatic,” said Komaroff, who is chief of general medicine at a Harvard teaching hospital in Boston.

The article, which underwent nearly 11 months of peer review before being published, was authored by Komaroff, Incline Village internist Dr.Daniel Peterson, and former Incline internist Dr Paul Cheney.

Dr Michael Caligiuri, an immunologist with the Dana-Farber Cancer institute of the Harvard Medical Center, was the lead author for the article which was originally submitted for review in January.

Komaroff says test results reveal an attack on the immune system’s “natural killer cell” which is the body’s primary means of killing virus-infected cells or cells that become cancerous.
Komaroff said “There is a substantial reduction in the number of natural killer cells in patients tested.”  He said the study has determined that this “major defense against virus infection and cancer” is damaged in over half of the test cases involving Incline Village patients.

Komaroff first brought his team of researchers to Incline Village in February of 1986 after Incline doctors Cheney and Peterson had documented an outbreak of approximately 200 cases of mononucleosis-type illnesses in the North Tahoe and Truckee area beginning in the fall of 1985.

While the Incline Village cluster of fatigue cases has drawn primary attention in the national media, researchers have found widespread occurrence of the illness throughout the country.

See TESTS on page 9.  http://www.ncbi.nlm.nih.gov/pubmed/2824604


Holmes Committee

This body of evidence scared the CDC to death and got their full attention.  Dr. Gary Holmes, the CDC epidemiologist who did the original 1985 investigation, was directed by Dr. Carlos Lopez to draw up a paper of his findings.  Since the evidence was disproving the CDC’s “adult mono/EBV Syndrome”, the working title of Holmes’ paper was “Chronic Mononucleosis-Like Syndrome” – CMLS.

Since this was hard to pronounce, the CDC took to calling it “Raggedy Ann Syndrome”, to distinguish it from the yuppie flu.  Dr. Lopez called for a meeting do discuss what to do about the Raggedy Ann Syndrome.  This is the famous “Holmes committee”.

The champions of the EBV hypothesis, Stephen Straus and James Jones, showed up ready to fight to preserve their “EBV dominant” paradigm.  In essence, they didn’t know what the Lake Tahoe “Raggedy Ann Syndrome” was, and they didn’t care.

They said it was either lacking evidence, or that the evidence was inconclusive as it did not point at any known disease.  Their goal was to set aside the Tahoe outbreak and keep everything at “CEBV Syndrome” level, so they could pursue their “fatigue illness” studies (with sizeable CDC/NIH grant funding, of course).

Actually, Straus showed up with a new name:  “Neuroasthenia”.

http://www.ncbi.nlm.nih.gov/pubmed/3034134

At this “Holmes committee” meeting, Straus and Jones battled until the three physicians present who diagnosed our outbreak as “a typical outbreak of myalgic encephalomyelitis” – Byron Hyde, Gordon Parish and Alex Shelokov – got disgusted and walked out.  David Purtilo of Colorado was isolated and outgunned.  Cheney and Peterson were not invited, as their evidence base was in Dr. Gary Holmes’ hands.

Straus and Jones moved into the lead and it appeared certain that all of our Tahoe evidence was going to be set aside.  Someone was keeping Senator Harry Reid, D. Nevada, apprised of what the Holmes committee was doing. He personally intervened and said it made no sense for the committee to set aside the very object of investigation which was its purpose and reason for convening.

This could not be denied, but Straus and Jones could still make it APPEAR that whatever new study was designed by the CDC would be for THEIR syndrome.  Straus used his seniority and power to put pressure on junior epidemiologist Gary Holmes to extract everything from his CMLS definition which tied it to the Tahoe outbreak.

Gary Holmes complied.  We do not know how he felt about this, but his actions would seem to show he was very much aware of the implications, and was not on board with this.  For this is what he did:  Holmes handed out his “Tahoe Study” CMLS paper in the middle of a meeting – even without anything IN the paper to focus on the Tahoe evidence, this still pointed AT the Raggedy Ann Syndrome as central to whatever “entity” was being discussed.

http://www.ncbi.nlm.nih.gov/pubmed/3033337

Upon receipt of this “Holmes paper”, Stephen Straus went absolutely ballistic and had a wild screaming fit.  This took the focus out of his hands and put it squarely on the Tahoe outbreak.

At this point, the Holmes committee should have designated the Raggedy Ann Syndrome and associated evidence as the object and purpose of the new “research tool”.

But Straus was not done.  He used his influence to freeze the evidence base at the evidence level of Holmes’ “Chronic Mononucleosis-Like Syndrome” paper, and allow no more into the new syndrome that the CDC agreed to create.  And again, Straus tried to keep mentions of Tahoe out of it.

The most prestigious member of the Holmes committee, Dr. Elliot Kieff of Brigham and Women’s Hospital,  wrote several angry letters of complaint to Gary Holmes about a new syndrome DEVOID of objective measures and without a clearly stated target.  He was not yet aware that Stephen Straus was directing Gary Holmes to omit specific neurological signs and symptoms of the Tahoe outbreak from his definition.  Exasperated at this ambiguity, he asked,

“Is the intention to create a new psychiatric classification?”

http://www.nytimes.com/1987/07/28/science/fatigue-virus-has-experts-more-baffled-and-skeptical-than-ever.html

But Straus cast too large of a shadow and got his way.

Our fate hung in the balance.

Would people see through the deceptively ambiguous CFS definition and look at why it was created?  Or would they take the lazy way out, and just think that the few stated symptoms were all that was known?

Straus and Jones embarked on a campaign to say that CFS was nothing more than a new name for the old EBV syndrome.  Since the many thousands who had been diagnosed with CEBV Syndrome did not know about our evidence or about the battle that occurred in the Holmes committee, the patient groups accepted this as fact, and worked to spread the word that this was indeed what CFS is.  In this way, the real reasons for the existence of this new syndrome were almost completely made to disappear.

If it were not for a few books and perceptive doctors, Stephen Straus’ plan  to revert the paradigm to a trivial fatigue illness and subvert the evidence would have worked flawlessly.  The “founding evidence” that was KNOWN to the CDC/NIH and under scrutiny by the Holmes committee, and even acknowledged by the AT THE TIME – that the Raggedy Ann Syndrome was why there is a “Chronic Fatigue Syndrome” – would have been gone forever.

And along with it, my story of “Mold at Ground Zero for CFS”.

A darken’d and tempestuous day…it was.

In 2011 I took a trip out to Reno, Nevada, to meet the man who saved my life..Erik Johnson, the Mold Warrior.  The trip was cathartic in many ways.  Erik took me on “The CFS History Mold Tour”, which encompassed most of the critical locations involved in the inception of CFS as named by the CDC.  I can’t even begin to tell you what that was like emotionally.

We also made a trip to the WPI.  It was quite a shock to find out later that the very day we were there, Judy Mikovits was being fired.

But just recently, I’ve had a bit of a further shock.  It’s been pointed out to me that, according to the Heckenlively/Mikovits book “Plague”, Dr. Mikovits had a mold problem of her own:

“ Annette Whittemore fired Mikovits over the phone at around 4:30 p.m. on Thursday, September 29, 2011. It was an uneventful day prior to the Lombardi brouhaha. Mikovits had left the Whittemore Peterson Institute about a half hour earlier after going to the lab to tell her research associate Shanti Rawat that she would be taking the next day to move David’s posessions out of the Condo they had been renting the past ten months from the Whittemore’s as her Riverwalk condo was being repaired from mold. Mikovits would then bemoving her things back to the Riverwalk as her lease was up September 30.”(page 144)

This becomes extraordinarily interesting when you revisit the blog I posted after the trip to Reno.  I’ve pasted it below.  The original publication date was May 21, 2012. 

A small section of the original blog has been removed because, though it was intended to pay homage to an author of a certain book that describes being within the maze of CFS history, the author objected.  I replaced that section with these words:  “Our trip started at the top of Mount Rose, looking down on Lake Tahoe and Incline Village.  It was beautiful.” 

Nothing else has been changed, added, or deleted.

In particular, take a look at  the section titled “The Sideshow”.  You’ll see why I received the second major shock regarding the timing of that visit when I saw the description of Dr. Mikovits’ day on page 144. 

It is also interesting to note that Erik had been educating Dr. Mikovits in the story of how mold was an unknown component in the 1985 Tahoe Mystery Illness since the 2009 IACFS/ME conference in Reno, and had given Dr. Mikovits a copy of Dr. Ritchie Shoemaker’s 2010 book, “Surviving Mold” the year before the date of our visit to WPI, in an attempt to engage the interest of CFS researchers into a major factor that had been overlooked.



CFS – THE MOLD TOUR (Published 5/21/2012)

 

For a few years now, I’ve been living a lifestyle based around mold avoidance.  By “based around”, I mean that my daily routines, my living quarters, my life decisions, and even the location that I have chosen as home base – all incorporate the premise that mold is my kryptonite and must be avoided at all cost.  This premise has kept me upright for a good long run.


The Background

In 2007, I was bedridden, and had been for a while.   I was suffering migraines on an almost daily basis.   I was having seizures.  I had full Parkinson-like symptoms.  My gallbladder was on the verge of coming out, I’d had 8 consecutive kidney stones, my teeth were exploding in my mouth, and I had an appointment to get my thyroid irradiated.  My cognitive abilities were probably at the 3rd grade level.  I was definitely not smarter than a 5th grader.  My idea of a vacation was migrating to the couch.

One day, I posted what became a fateful piece on a message board.  I said, “Maybe my house is killing me?”. That statement drew a response that saved my life, from Erik Johnson.  He said, “Now you’re talking my language”.   That kicked off a friendship that has endured through thick and thin, and a subsequent road map out of hell.

Here was a survivor of Incline Village,a Cheney-appointed prototype for the illness cluster there, which infamously earned the attention of the CDC and the name “Chronic Fatigue Syndrome” – a man who was as sick as they come, and who was now out climbing mountains.  I decided that whatever he did to achieve that kind of turn-around was what I would do.  It didn’t matter what it was.  It could have been “stand on your head an hour a day and count backwards in Arabic”, and I would have done that.  As it turned out, it was mold avoidance.

Over time, I got to know Erik’s story.  He talked of particular areas in Incline Village, around lake Tahoe, in Reno….and the teacher’s lounge at Truckee High School, as all having the toxic effect that he avoids.   He said that the effect is still there.  In the fall of 2011, having reached a high enough level of health to even entertain such an idea, I decided to take a trip out to Reno to see for myself.   After all, this man had put me back on my feet.  I wanted to see “inception”.


The Journey

I left Albuquerque feeling well, excited to be making this trip.  I flew into Reno, with a six hour layover in Phoenix.   By the time I got to Reno, everything I was wearing and all of my luggage was contaminated.  My computer was contaminated.   The Phoenix airport felt awful, and the second hop from Phoenix to Reno had me squirming with pain.   I felt like I was getting superblasted with toxins.   By the time I got to Reno, I could hardly stand myself.   When I met Erik, he couldn’t stand me, either.  I was thoroughly doused with toxins.  The first order of business was a decon shower and a change of clothes.  Everything I brought had to stay outside.   In particular, the green hoodie I wore on the entire trip was lethal.   Day one was all about cleanup.

But, after the decon and the clothes change, my own health took an immediate bounceback.  As hard as I got hit, the idea of keeping my immune system response dampened down with constant avoidance protocols paid off.  I was functional.  Welcome to Reno.


The Sideshow

The next few days were a whirlwind of activity, including multiple exposures to toxic assault.  A walk with Erik through downtown Reno and along the riverwalk was an amazing adventure, simply because we threaded our way through plumes and exposures to people who were cross-contaminated.   We moved as if in unison, in that strange dance that moldies do…simultaneous shifting from one side of the street to the other to avoid a blast of badness coming from a building, backing away from a counter where the clerk was emanating cross contamination, and then…”Did you feel that?  Look at your hands, your veins are popping.  So are mine.”   Wonderful validation.

A trip to the WPI and a tour of the campus was interesting.   At the time, the WPI was still looking good, although unbeknownst to me at the time, my visit was on the same day that Judy was being fired.   The building was beautiful, a real testament to forward-thinking and high hopes.   However, the impression was that of a ghost-town.   I met Annie at the reception desk, and introduced myself as another CFS sufferer who had achieved a large level of health through mold avoidance.  The building itself felt good to me.  However, near the counter there was a lingering cross-contamination, a “gift” that somebody had left behind.  It was enough to make me back away.


The Main Event

One whole day was devoted to a tour of CFS History, which equates to the same thing as “The Mold Tour”.  Before getting into details, I have to tell you that this trip changed my life on two levels.

On one hand, it was like visiting the scene of a horrible event that changed the history of my “people” forever.   I imagine the feeling was similar to visiting a concentration camp that one’s parents were interred in, or visiting the scene of a violent crime that resulted in the death of a family member.  It hit me to the core, in a way I didn’t expect.  Here was where people suffered greatly, where a town ostracized their own desperately ill citizens, where the CDC came and effectively issued our death sentence.  Here was where a catastrophe got swept under the rug.  Here was where the paradigm of concerted and overt lassitude on the part of the government was framed as policy, and where everything that has broken my life began.  Here was the epicenter of the wormhole, the same wormhole that has generated an inescapable tractor beam that has sucked me into its event horizon, years later and miles away.

On the other hand, it was extreme validation.  It was validation that everything Erik had told me about the level of toxic assault in the area was true.


Reno itself is no picnic as far as toxic assault goes.  Erik lives there, and I immediately saw what his concept of “extreme avoidance” entails.   It doesn’t mean living in the desert.  It means living right in the middle of a city full of opportunities to get slammed.   It means maintaining a pristine living space, honoring decontamination protocols, and wending your way through “normal” activities on a daily basis, and cleaning up the mess it makes with your extreme protocols.

Our trip started at the top of Mount Rose, looking down on Lake Tahoe and Incline Village.  It was beautiful.

But the air was a little foul. Not in smell, but in feel. I could sense swelling at the base of my skull, a souring of brain activity.  It wasn’t a place I wanted to be.

The next stop on the tour was the library in Incline Village.   We got out of the truck and walked into the library.  As we rounded the corner to the reception desk in the middle of the building, I felt some very familiar symptoms, quite rapidly.   Brain compression hit within moments of approaching the area, along with a narrowing of vision, rapid heartbeat, and agitation.   I couldn’t wait to get out of there.   Erik grinned at me.  He knew I’d react that way.  We didn’t stay long.

We visited the building that housed Dr. Cheney and Dr. Peterson in the days of inception.   Erik described to me how he sat in that very office, stunned to the core when Cheney asked him to be prototype for the illness that the CDC was framing as “Chronic Fatigue Syndrome”.   He didn’t want it.   The responsibility was daunting.  The enormity was staggering.  But then he realized that as prototype, researchers would listen, would come and explore the toxicity of the area, would follow the clues that he and others in his cohort could point to.  He had no idea how wrong he was.

He also described to me how that very office, those very  handrails, were  where patients would stagger to and push off from, to propel themselves to the next handhold, as they came out of the office.  The staggering gait, the inability to convert brain-commands to neural action, were all described in Osler’s Web.   These things, over time, have been reframed somehow as “fatigue”.   It was not on any scale of fatigue.

We worked our way through Incline Village and through King’s Beach towards Tahoe Vista.   There were intermittent stops on the way, some that were interesting historically and others that were just downright toxic.   I won’t go into detail, as the main event was yet to come.  The tour is worth taking for any CFS patient.  It was a remarkable journey, both from a “grounding” perspective and from a neurotoxic perspective.

It was time to head toward the piece de resistance, Truckee High School.   Upon our arrival, Erik warned me to follow him, that sometimes one had to be careful about which way one approached the building.   He said that the wind can blow the effect right out of the building and walking into the wind may be a bad idea.  I followed him closely as he remembered his high school days there, and how he had to sit outside at every opportunity.   Our approach was uneventful, but as soon as we opened the door to the high school, I went into neural  shut-down mode.  The inside air pushing its way out was filled with a forceful toxic assault.

We crept inside, approaching the hallway that contains the infamous teacher’s lounge.  As we got closer and closer, my heart rate jacked up enormously, and my vision closed in.   My peripheral vision was shot, and I could only see through a tunnel.   My head began to spin a bit, and the veins on the backs of my hands popped noticeably.

As we rounded the corner, with the lounge in sight, I turned around and headed back out.  I could not take one more step forward.  It was too much.  Whatever was wrong with that place, whatever it was that contributed to all those teachers’ illnesses, was still there.   Erik walked me out and back to the truck, and we went up into the mountains for some fresh air.  It was only moments before I was back to normal.  We had a pleasant walkabout and a good dinner, and went back to Reno.


The Takeaway

It’s been more than two decades…creeping up on three….since the outbreak of illness in Incline Village.   It is beyond my comprehension that in all this time, not one researcher has gone back and listened to this story.  Other than patients who have come to do the tour, nobody has explored these pockets of toxicity.   There are still survivors.   The story  can still be told.  And, whatever is wrong with that area is still there.   Erik doesn’t offer mold as the cause of CFS.   He has never once said that.   His clues don’t negate viral impact.  There WAS viral impact in that cluster.   But some recovered, while some went on to enjoy a lifetime of CFS.  What was the differential?

At this rate, we’ll never know.