Dubbo too/Re: Amygdala Retraining / Prof Wessely is RIGHT

[Guest guest]

>

> I dont think anyone KNOWS what CFS is! There may be a persistent

viral infection in some people and not in others. Immune

abnormalities may be allowing the infection while HPA axis

abnormalities do in others. Then theres the sympathetic nervous

system - another immune regulator - maybe thats the key for some

people. Or maybe all these different stressors somehow cause damage

to the same part of the brain and thats CFS. The 'truth is' that

there is no settled truth about CFS. Some people have high titers of

various pathogens and can be helped by antivirals and alot of people

dont and cant.

>

> I would strongly disagree with your idea that Lloyds research

is 'bogus' (and why use a word like that anyway?) Lts of people

report they came down with CFS after getting mono! And several

studies show that that is so.

>

> I would note that many CFS patients following the Incline Village

outbreak were well in a couple of years.

>

> I would also note that Dr. Gupta does propose that brain damage

is central to his hypothesis. Who'se to say that a central nervous

infection caused by EBV (yes its found in the brain) or HHV-6 or

another pathogen goes wild causing damage in the limbic

region/brainstem?Numerous studies have found problems in those areas.

>

> Of course theres no scientific data - its never been tested.

>

> What is 'actual CFS'? You're drawing boundaries you really cant

draw. Somehow I doubt those people who have endured years if not

decades of problems after monocleosis failed to resolve have 'super

common chronic fatigue' . I doubt Dorothy Walls does.

>

> This chronic fatigue vs CFS is a distinction that is in vogue now

but its essentially meaningless; there's no definition for it. It

allows people to attach the CF label to a study or outcome they dont

like.

>

> Thoughts actually do have power. should know that but he's

forgotten it. Anything that helps out those with this disease should

be rewarded - not rejected simply because it doesnt fit with ones

belief system.

>

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Cort, while not perhaps knowing what " CFS " is, we have a great many

deal of exclusionary evidence which show us what CFS is not.

What is " actual CFS " ?

At the very least, it would be the illness of the people who had

that term and definition laid upon their individual cases of illness

in the Holmes study group.

Remember? The people that Bryon Hyde and the ME literate physicians

believe to have ME?

They weren't looking at the CFS definition when they said that.

They were looking at real live people in the study group.

Those people were the ones the CDC used as the basis for CFS, and can

say exactly what their illness is - and therefore, what the illness

is that CFS was applied to.

The notion that CFS is meaningless is only subscribed to by people

who want to make it meaningless. Others look at the work of the

authors of the Canadian Guidelines - see what the CFS term was

originally intended to accomplish - and attach meaning accordingly.

It's really not that complicated or difficult, only a matter of

willingness to do so.

Just like Dr Bell's cohort, a lot of the people you believe to

be " well " after the Incline outbreak have recovered to the point that

they aren't complaining, but are far from " well " .

You may recall that Dr s 1999 NIH " Original CFS cohort

follow up study contained his response to the question if any of

these patients had fully recovered:

" None " .

These people of whom many have had " significant or substantial

improvement " have learned by bitter experience that if you can't get

any help or belief when the illness is so savagely devastating that

they are paralyzed in brain crushing, shrieking agony, it's not going

to do much good to try and get any help for their smouldering latent

infections and residual afer effects.

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