The Disinterest Response / CFS

[Guest guest]

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

6/11/2008

Natelson 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.

-

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6/11/2008

Tony, 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?

-

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6/13/2008

If 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_Whisper

Chinese whispers

From Wikipedia, the free encyclopedia

(Redirected from Chinese Whisper)

Jump to: navigation, search

Chinese 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 play

As 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

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6/17/2008

The 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

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6/18/2008

Tony,

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.

-

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6/18/2008

In 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!

-

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6/18/2008

Tony, " 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.

-

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

6/19/2008

Gee, 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.

-

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6/19/2008

See? " 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.

-

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6/20/2008

Tony, 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.

-

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6/28/2008

The 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.

-

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8/11/2008

Basically, it's like a test of " Do you give a damn about the truth " .

" Disinterest " = " no " .

-