Re: Re: created in a lab? it's 100's of years old.

[Guest guest]

,

Where we start going round in circles again is when you start to extend

your experience with a sudden onset cluster to the diagnosis of CFS.

Let me repeat yet again that a word is used how it's used and if you want

to know what CFS means TODAY, look at the diagnostic criteria currently in

use and the patient population.

Sudden onset in clusters is not part of the diagnostic criteria and the

overwhelming majority who carry this label are now, as I say, either

gradual onset or onset with antecedents. It is there that the canary

principle comes in and as Doris pointed out, canaries are not weaklings --

in fact, they're not even sick before the gas reaches them. They just have

a genetic constitution that gives them wonderful athletic performance

(they can fly without a hang glider remember) but also a susceptibility.

Rob

[Guest guest]

,

You keep talking about " this illness " as though we're all the same, and

there's no justification for saying that. Please re-read my posts. I'm

sorry but I don't know how to explain myself any clearer.

It's as though you have a psychological blockage about letting go of the

idea that your illness defines what is now a very large and diverse

patient population. There are at least the two subgroups that I've

indicated and most likely other subgroups too.

Rob

----- Original Message -----

From: " erik_johnson_96140 " <erikj6@...>

>

> Where we start going round in circles again is when you start to

extend

> your experience with a sudden onset cluster to the diagnosis of CFS.

>

> Let me repeat yet again that a word is used how it's used and if

you want

> to know what CFS means TODAY, look at the diagnostic criteria

currently in

> use and the patient population.

>

> Sudden onset in clusters is not part of the diagnostic criteria and

the

> overwhelming majority who carry this label are now, as I say, either

> gradual onset or onset with antecedents.

Rob, it doesn't matter since the cluster incidents supercede the

individual onset cases in terms of specificity. Unless you can

demonstrate that all these " genetic susceptibility canaries " have the

incredible propensity for grouping themselves together, the

statistical improbability of " canary clusters " suggests that the

mechanism for creation of this illness overpowers variabilities of

individual immunity.

The very fact that this illness can sweep through communities in

large clusters in such an unprecedented manner means that even though

canaries may be susceptible, the illness has the capacity to

transcend that factor.

When something breaks the rules or doesn't fit the conceptual model

you have laid out for it, you must question why.

The threory must fit ALL the facts.

-

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

----- Original Message -----

From: " erik_johnson_96140 " <erikj6@...>

keep talking about " this illness " as though we're all the same, and

> there's no justification for saying that. Please re-read my posts.

I'm

> sorry but I don't know how to explain myself any clearer.

>

> It's as though you have a psychological blockage about letting go

of the

> idea that your illness defines what is now a very large and diverse

> patient population. There are at least the two subgroups that I've

> indicated and most likely other subgroups too.

, see my interspersed comments to what I think are your main points.

E Rob, you have made yourself very clear.

You think that CFS is a perfectly normal result of people with an

inherent predisposition succumbing to exposures and stressors that

others endure, even though these exposures and stressors have no

history of consistently causing CFS.

R I think that there are are likely to be a number of inherent

predispositions responding to different combinations of stressors. As to

the history, none of us knows enough to make confident statements, but we

know that the number and volume of synthetic compounds in the environment

is increasing at an alarming rate.

E You make no attempt to explain why these predisposing factors did not

result in clusters of CFS consistently enough to be associated with

these " stresses " or exposures.

R They might have done but we don't know anywhere near enough about the

epidemiology.

E You have a psychological blockage of comprehending that I was used as

a prototypical case of CFS for defining the parameters of the illness

and that therefore CFS of the class that compares itself to the type

that spread through Incline is comparing their condition to me and

should attempt to establish some level or concurrency.

R That was then, this is now. See my previous posts for the present

situation.

E " This Illness " is the one described in Oslers Web and innumerable

other places and is generally recognised as representative of CFS, at

the very least, as a valid subgroup since it was used to develope the

illness model.

R It is no longer representative how the diagnosis of CFS is now used.

That's why so many in the UK want to preserve the diagnosis of ME and

Ramsay's description of it-- to make a distinction.

E Even disregarding my case, you fail to understand that if the

illness has the capacity to overwhelm people in groups, that the idea

of a inherent predisposition can only possibly fit if the that group

met the statistical improbability of consisting entirely

of " canaries " . It is not impossible that this could be the case, but

the unlikely nature of this occurance demands an explanation.

You entirely ignore virtually all the clusters of CFS in which the

cohort predominated of those who had no apparent immunosuppressive

condition. Do you believe that since these clusters do not fit your

model, that they must be another illness, even though they are the

very outbreaks that were used to model the illness?

R On balance, I think it likely that in sudden-onset cluster outbreaks,

there has been an infection and that an inflammatory immune response such

as you suggest is a possible explanation.

R I think that the diagnosis of CFS has indeed been taken off you and

applied first to gradual-onset syndrome cases and then to psychosomatic

and 'dustbin' cases, leaving first you and then the gradual-onset syndrome

cases feeling cheated. I go under the diagnosis of FMS, so I can be

objective in describing this.

E If you don't recognize the comparison

and the concurrency that constitutes the " syndrome " in CFS, then your

basic premise is that there is no syndrome at all and that everybody

is just falling apart as a part of normal life and that the

proximity of those in clusters and the similarity of symptoms is

nothing more than a coincidence.

R What seems to happen is that various triggers impact upon people's

differing genetic makeups and a threshold is passed where certain body

systems are knocked out of kilter and recovery becomes very difficult.

This process produces a selection from a list of possible symptoms. The

decision as to how to group these cases is based the writer's interests,

as sufferer, researcher, practitioner or politician.

Rob