Re: The Disinterest Response / CFS

[Guest guest]

,

Quite interesting. As the saying goes, "Ask the experienced, not the learned". Obviously, you have demonstrated that you are both the experienced and the learned in this discussion.

Sharon

Tony, you made a suggestion that the IEQgroup might find our private correspondence of our small off-list group to be of interest, and that you had considered posting it publically.I think this is this an excellent suggestion and agree that this would be very enlightening.Here is my portion.-MW 6/11/2008Natelson is getting a bit closer to the truth, but I suggest you throw Lyall and Wessely's garbage in the trash where it belongs.Professor Wessely is famous for redefining CFS down to mere fatigue in the Oxford "Wessely/Sharpe" UK criteria, and then skewing the evidence by studying people defined under his own watered down redefinition to show that what they found in "CFS" were tired people.Wessely is going to go down in history as one of the best examples of psychiatry gone mad - completely out of control.----------------------------------------------------------6/11/2008Tony, yes. I have followed the CFS literature for many years and know a great deal about their underlying conceptual framework of "what CFS might be". Wessely's views have sparked an absolutely wild controversy in the UK, and it appears that Wessely may be well on his way to joining Sir Roy Meadows in disgrace and disrepute.I'm not trying to sound all "arrogant" and audacious about this... but do you have any idea who I am, and why I would strangely act as if I can speak so authoritatively about Chronic Fatigue Syndrome?-----------------------------------------------------------6/13/2008If one wished to find out what the initiating "phrase" really was, wouldn't you go back to where the whispering started?-And don't forget..."Age range 5 and up""Deliberately changing the phrase is often considered cheating"http://en.wikipedia.org/wiki/Chinese_WhisperChinese whispersFrom Wikipedia, the free encyclopedia(Redirected from Chinese Whisper)Jump to: navigation, searchChinese whispers Players 3 or more Age range 5 and up Setup time < 5 minutes Playing time 5?15 minutes Random chance Low Skills required listening, whispering Chinese whispers[1], Russian Scandal[1] or Telephone is a game in which each successive participant secretly whispers to the next a phrase or sentence whispered to them by the preceding participant. Cumulative errors from mishearing often result in the sentence heard by the last player differing greatly and amusingly from the one uttered by the first. It is most often played by children as a party game or in the playground. It is often invoked as a metaphor for cumulative error, especially the inaccuracies of rumours or gossip.[2]The game has many other names, including the telephone game, Broken Telephone, operator, grapevine, whisper down the lane and Pass It Down. In the United States, "Telephone" is the most common name for the game.[2] The name "Chinese whispers" reflects the former stereotype in Europe of the Chinese language as being incomprehensible.[3] It is little-used in the United States and may be considered offensive.[4] However, it remains the common British name for the game.[5]Contents[hide]1 How to play 2 Purpose 3 Examples of sequences 4 See also 5 References [edit] How to playAs many players as possible line up such that they can whisper to their immediate neighbours but not hear any players farther away. The player at the beginning of the line thinks of a phrase, and whispers it as quietly as possible to her/his neighbour. The neighbour then passes on the message to the next player to the best of his or her ability. The passing continues in this fashion until it reaches the player at the end of the line, who calls out the message he or she received.If the game has been 'successful', the final message will bear little or no resemblance to the original, because of the cumulative effect of mistakes along the line. Deliberately changing the phrase is often considered cheating, but if the starting phrase is poorly chosen, there may be disappointingly little natural change----------------------------------------------------------6/17/2008The papers are worth reading - as one can contrast the opposing points between Natelsons views and Professor Wessely's "psychosocial" attributions.However, when I say that I am in a position to speak authoritatively about "Chronic Fatigue Syndrome" and receive no reply, I tend to perceive this as disbelief.-1988 Holme et al CFS definition study group participant--------------------------------------------------------6/18/2008Tony,I thought my qualifications were clearly covered in "Mold Warriors" as well as many postings in IEQ.Whether or not I am an "expert" doesn't detract from my ability to speak authoritatively.This thing called "Chronic Fatigue Syndrome" was based on my blood, immune parameters, and personal experience, so "whatever I have" is CFS.There was a specific reason why I wound up being selected and put in this position, but that is a long story.Yes, I know it sounds hard to believe... "CFS" has gotten to be so huge.But it had to start somewhere, and that is why Dr Shoemaker titled my chapter "Mold at Ground Zero for CFS".And that is fascinating that you had your gall bladder removed.If you look in Osler's Web "Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic" by Hillary , you can read about the Truckee teacher cluster - which is what scared Dr into calling the CDC - a couple of them had their gall bladders out, and no gallstones or reasons for the inflammation was found.And I think your hypothesis is perfectly consistent with the facts I have in my possession.----------------------------------------------------6/18/2008In all these years since the 1988 Holmes committee conferred CFS upon what was mistakenly thought to be "CEBV syndrome" as a compulsory corrective action due to the evidence presented by Dr Cheney, I have found no faster or more effective method to completely clear a room of "CFS researchers" than to say "I was part of those events, and I have something to say about the illness that was named CFS".I have demonstrated the sheer power of this incredible "Disinterest Response" to Dr Shoemaker.I simply enter any discussion group, announce my connection to CFS, and observe the so-called "CFS investigators" go dead-silent, scatter and disappear.It never fails!-----------------------------------------------------------6/18/2008Tony, "CFS" has crossed your radar screen many times. Indeed, you were the one who suggested obtaining two specific papers on the subject of CFS;One of which is grossly inaccurate and for which I offered a correction.If you are going to advise people upon matters of CFS, I suggest you should not complain about being offered an education.- ---------------------------------------------------6/19/2008Gee, Tony, perhaps you might want to reread the post.I did cite a scientific source for my "opinions". (Below)Dr Shoemaker seemed to think my experience did add to the science.-----------------------------------------------------------6/19/2008See? "The Disinterest Response". I would like to remind everyone that "CFS" has gone from a nullpoint of "unknown" in 1988, to a globally discussed phenomenon with millions of people wondering what this medical entity really is.It will definitely be crossing your radar.-----------------------------------------------------------6/20/2008Tony, yes I utterly fail to see the need for repeatability.The science must be "reproducible", but when the tightly controlled parameters of the experiment fulfil the tenets of the model, "repeating" it is only to satisfy those who weren't quite certain of what they saw the first time.(Perhaps you meant to say the science must be "reproducible"?)I didn't claim to be a "CFS expert", although my knowledge of CFS is far beyond most people.What I said is that I can speak "authoritatively" upon what CFS is.When concepts of CFS conflict with my experience, my "experience" takes precedence, as any altered view would be an alteration of the original presentation upon which the syndrome was based - revealing the alteration as an incorrect distortion.If you examine CFS history, you may be surprised to learn the the "peer reviewed" 1985 ls article which presented Straus/ "CEBV Syndrome" was over-ruled by the evidence of certain patients who could not possibly fit that model.This necessitated a name change to "CFS". Dr Cheney and Dr presented that evidence in the form of "The Tahoe Study", which showed that EBV had nothing to do with CFS, and their evidence never passed peer review. This critical evidence was deliberately ignored and omitted from the CFS criteria.The CDC just barely accorded enough import to the evidence to escape being implicated as being in direct opposition to the science.Professor Wessely's "psychosocial" attributions of CFS causality is based upon the flawed CDC's "peer reviewed" material, which is even publically known to have omitted the immunological evidence.If these immune paramenters are taken into account, the subsequent Wessely/Sharpe "Oxford CFS definition" are proven to be unfounded and entirely false.This is not a matter of "opinion", as the original members of the CFS cohort still possess these same immune abnormalties which brought attention to the phenomenon in the first place.As Dr described, this "confusion" about CFS has nothing to do with science. It is pure politics.You may have noticed a slight breeze lately, as the winds of change are stirring.If the people who fought with us hadn't been so thoroughly obstinate, I might almost have felt some pity for the way they are going to be demolished.But I won't.-----------------------------------------------------------6/28/2008The science must be capable of being reproduced, but if the parameters of the test are sufficiently controlled, the first time the result meets the expectation is just as valid as the thousandth. Repetition doesn't "improve" science. It just satisfies people who weren't sure what they saw the first time.When I said "applied science", your conceptual framework appears to have placed it in the realm of "performed by someone with scientist on their name badge", as I implied no such thing.Science is a method, not a person. Anybody can do it, if their method is logically sound.This is why sensitized individuals are not pursuaded by scientists who tell them their level of reactivity cannot exist.Every exposure tells them that the scientists must be relying on obsolete information.Be my guest and post it if you like.Might be fun to see how people respond.--------------------------------------------------------8/11/2008Basically, it's like a test of "Do you give a damn about the truth"."Disinterest" = "no".-

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