Re: /Re: Amygdala Retraining

[Guest guest]

Hi

I hope you are well.

How is your own recovery coming along these days.

What areas are concenttrating on and what are you taking?

Regards

CS

Cort/Dubbo too/Re: Amygdala Retraining

Hi,Cort.

<cortttt@...> wrote:

>

> I dont think anyone KNOWS what CFS is!

***Many of us do, we're living it and KNOW the difference between

things that are meaningfully impacted by alterations in thoughts,

emotions, etc, and symptoms that are not. It's obvious to us, our core

CFS symptoms are utterly and completely independent of psychological

mechanisms that others IMAGINE must be connected. They're collapsing

paradigms and not recognizing it, which is both blunderous and tragic,

especially if they're a researcher who should know better.

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.

***Well, there a 'truth is' about CFS in this last sentence of yours

and it's significant. Those some that do respond to antivirals may be

actual CFS and there may be greater responses, more actual PWCs to

cure, with such meds among the ones that don't now if research ever

got beyond their anaemic level of commitment to this field.

>

> I would strongly disagree with your idea that Lloyds research is

'bogus' (and why use a word like that anyway?)

***Because it's accurate. It's a great word to represent the unreality

of the Dubbo work, particularly the basis of the work and what it's

attempting to say about CFS rather than the technical execution of the

study itself.

***And I actually talked to Dr Lloyd myself about this and here

is something very telling that he said, " ...The outcomes in subjects in

the Dubbo Study suggest only ~2% have significant ilness beyond 2

years (post onset of infection) - the remainder have recovered

entirely. " Virtually 100% " entire " recovery in the first two years is

not the same CFS diagnosis here on these lists and what I find in

person with fellow PWCs.

***Also, an actual medical researcher with an M.D. who has CFS that I

met in a N. Cal advocacy group had this to say in response to this

data from Dr Lloyd's emails to me, " Thanks for writing

Dr. Lloyd, ...These are huge numbers and don't match what we've

seen...This confirms my suspicions. I thought they might be studying

some type of post-viral fatigue syndrome but not what people are

experiencing for 5, 10, 20 years... "

Lts of people report they came down with CFS after getting mono! And

several studies show that that is so.

***No. Lots of people were told they had EBV mono and this is what

they report, but this is really flawed. Doctors generally aren't

trained to know that the Monospot test, the thing they use at the

point the patient shows up to confirm mono, is not specific for EBV.

***The Monospot itself actually measures a host of antibodies produced

by B-cells and EBV is known to stimulate B-cells. However, there's no

saying that another bug could have a similar effect on B-cells, like

HHV-6, and therefore give a positive Monospot without EBV.

***The test used to confirm EBV infections in the Dubbo trials was IgM

to EBV, which is very specific for EBV. So it's possible they were

seeing actual " regular " EBV mono versus what we had or still have.

***And CMV is known to while HHV-6 is greatly suspected can produce a

mono indistingishable to EBV mono.

I would note that many CFS patients following the Incline Village

outbreak were well in a couple of years.

***Well, looks like has provided a good reference saying no one

since has gotten well. " None " is the quotation I see.

>

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.

***No, I and many others are drawing them. They're there to be drawn

and better, more substantive and rigorous research will help create a

clearer picture of what we're already seeing if not completely new

surprises to crystallize the whole thing.

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.

***See above.

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.

***The key is really what CFS is and the heart of it is NOT about the

symptom of chronic fatigue. That symptom is meaningless to what the

real trouble is in CFS(may be you don't have this, but many PWCs know

exactly what I'm talking about and it's clear to many of us it isn't

about ones mind or what the mind directly impacts).

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

forgotten it.

***Yes thoughts have power, even very profound power where they do and

can. This I need no reminder for, but what you're failing to hear is

that whole paradigm of thought and culture of thinking around it has

had ZERO impact on dissolving core CFS pathology for me and others.

You and others might IMAGINE it could or even should for CFS, but this

is exactly the collapsed paradigms point I made above.

Anything that helps out those with this disease should be rewarded -

not rejected simply because it doesnt fit with ones belief system.

***Well, this list isn't about little helpers as I said earlier in

this thread even though those kinds of things are fine and, I agree,

should not be rejected. However, this list is about remission

possible treatments which this training is being promoted as and

therefore should be challenged on that basis.

***Sometimes an observation comes from ones believe system and

sometimes not. Sometimes an observation transcends belief, it's above

the line and really what's so.

***

________________________________________________________________________

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[Guest guest]

Maybe we should take a breather. I'm sure given the fact that I am much

healthier than most in this group that I can 'indulge' in this kind stressful

back and forth better than others.

I do think there are many different kinds of CFS and I'm sure mine is

different from s and many others. Very early on I was helped greatly as

and others know by 'mindfulness' techniques I came across in something

called the EST training. They didnt make me well but they did signficantly

reduce what I would call my 'disease burden'. Since then while I've rarely

engaged with them on a consistent basis I've always regarded them with with

openness while still believing -since they didnt come to close to curing me -

that there was a strong physiological core to what I was experiencing.

My experiences with post-exertional fatigue have always solidified that belief

for me; how could I 'think' myself into such a bizarre reaction to exercise?

Obviously I couldnt. But that doesnt mean that I didnt feel that my mind and my

sense of self hadn't been dramatically effected by this disease. I didnt then

and still dont feel like I'm the same person I was 25 years ago. I am much less

that I was in what I think of as existential ways; theres less 'there' there;

I'm not calm anymore, my thoughts rush around almost ceaseless, my body is stiff

and rigid, I'm uptight, I still cant 'exercise' . Some of these things

techniques do seem to help with . Sometimes they dont seem to help at all. Other

times they seem astonishingly effective.

The mind/body question is something that I should have pursued more over the

years but its something I'm going to take a strong look at.

davidhall2020 <david-hall@...> wrote:

Hi, CS.

bhammanuk@... wrote:

>

> Hi

>

> I hope you are well.

>

***Thanks. I'm not well and never really have been with CFS, but I

appreciate your concern.

> How is your own recovery coming along these days.

> What areas are concenttrating on and what are you taking?

***I have no news to report on recovery or benefits from new

treatment. My right side parietal headache and sense of

fullness/pressure there remains my biggest problem severely crippling

quality life.

***Cognitive function remains arduous and great too as a result. Then

comes the fatigue.

>

>

> Regards

> CS

***

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