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.
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.