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.

 

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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]

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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”.”

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