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

[Guest guest]

says, " ***These treatments are not where the chase is for curing this

disease

and cure is what's appropriate. "

This is what's important to understand. And I agree with him, this stuff is

probably helping CF. And, CF is NOT CFS.

Trying to connect this to a CFS cure is going to send CFS down a path that

sufferers can't afford to be on. Research has to be held to the medical,

biological, and physical for CFSers to actually be pushed into mainstream

medicine.

Khaly

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

Cattttttt@... wrote:

>

> My CFS started with CMV. I tried the training on my vacation

while I was

> off from work. At first it worked. I took NONE of my meds, and was

able to

> sleep, felt fine. Then, I started getting sick.

***This example of failure from this treatment will be the

overwhelming typical response to any treatment born from this very

questionable hypothesis for CFS, which completely lacks scientific

data to support it. It will fail actual CFS cases after some feeling

a bit of improvement in the start that later fizzles.

***If someday cure ever does come about and stick from such treatment,

then I'll be the first to acknowledge it. But the truth is actual CFS

is a persistent primary infection of some sort, most likely viral from

my observation, which is exacerbated further by things that challenge

the detox system unique to the individual(e.g., mold in some,

opportunistic bacteria in the next person and other things in others).

***The " post " infectious symptoms assumption for actual CFS is bogus

and perpetuated by ill founded CFS research like that done by the

Dubbo studies and Dr Lloyd that only tracked a small number of

post verified EBV cases, which CFS has never been proven to be. Post

verified EBV symptoms are really just a form of super common chronic

fatigue(CF) I suspect and not actual CFS, given CMV and HHV-6

infection also can produce a positive monospot test that falsely

causes the uneducated doctor to assume an EBV mono diagnosis.

***This is a profound weakness in the attempt to connect

Dr Lloyd's research results to CFS. Another tip-off is 80% of

Dr Lloyd's research samples are completely recovered within the first

of year of symptom onset and the rest are recovered by year two.

***That sounds like super common CF that could be brought by any one

of several means to my ears, including reactive depression, but not

CFS. CFS is a completely different animal.

***Core CFS pathology and it's persistance is both unrelated and

utterly independent of thoughts, thought processes, emotions and

behavior. Like any serious disease one will have a variety of

thoughts, thought processes, emotions and behaviors in reaction to it,

but these held as the cause of the disease are simply unverified

beliefs and unchecked assumptions about the core pathology, nothing more.

***There's no scientific data to support them as causal in CFS. Core

CFS pathology and it's symptoms will not be conquered by treatments

aimed at altering these things.

***These treatments are not where the chase is for curing this disease

and cure is what's appropriate.

***

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]

I think this is where there has been a lot of confusion in the UK where

'treatments' such as the Lightning process and Reverse Therapy might help if

someone has essentially fatigue associated with a psychiatric diagnosis, but

really cannot make genuine inroads for pwme/CFS

Rosie

says, " ***These treatments are not where the chase is for curing this

disease

and cure is what's appropriate. "

This is what's important to understand. And I agree with him, this stuff is

probably helping CF. And, CF is NOT CFS.

Trying to connect this to a CFS cure is going to send CFS down a path that

sufferers can't afford to be on. Research has to be held to the medical,

biological, and physical for CFSers to actually be pushed into mainstream

medicine.

Khaly

davidhall2020 <david-hall@... <mailto:david-hall%40comcast.net> >

wrote:

Cattttttt@... wrote:

>

> My CFS started with CMV. I tried the training on my vacation

while I was

> off from work. At first it worked. I took NONE of my meds, and was

able to

> sleep, felt fine. Then, I started getting sick.

***This example of failure from this treatment will be the

overwhelming typical response to any treatment born from this very

questionable hypothesis for CFS, which completely lacks scientific

data to support it. It will fail actual CFS cases after some feeling

a bit of improvement in the start that later fizzles.

***If someday cure ever does come about and stick from such treatment,

then I'll be the first to acknowledge it. But the truth is actual CFS

is a persistent primary infection of some sort, most likely viral from

my observation, which is exacerbated further by things that challenge

the detox system unique to the individual(e.g., mold in some,

opportunistic bacteria in the next person and other things in others).

***The " post " infectious symptoms assumption for actual CFS is bogus

and perpetuated by ill founded CFS research like that done by the

Dubbo studies and Dr Lloyd that only tracked a small number of

post verified EBV cases, which CFS has never been proven to be. Post

verified EBV symptoms are really just a form of super common chronic

fatigue(CF) I suspect and not actual CFS, given CMV and HHV-6

infection also can produce a positive monospot test that falsely

causes the uneducated doctor to assume an EBV mono diagnosis.

***This is a profound weakness in the attempt to connect

Dr Lloyd's research results to CFS. Another tip-off is 80% of

Dr Lloyd's research samples are completely recovered within the first

of year of symptom onset and the rest are recovered by year two.

***That sounds like super common CF that could be brought by any one

of several means to my ears, including reactive depression, but not

CFS. CFS is a completely different animal.

***Core CFS pathology and it's persistance is both unrelated and

utterly independent of thoughts, thought processes, emotions and

behavior. Like any serious disease one will have a variety of

thoughts, thought processes, emotions and behaviors in reaction to it,

but these held as the cause of the disease are simply unverified

beliefs and unchecked assumptions about the core pathology, nothing more.

***There's no scientific data to support them as causal in CFS. Core

CFS pathology and it's symptoms will not be conquered by treatments

aimed at altering these things.

***These treatments are not where the chase is for curing this disease

and cure is what's appropriate.

***

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]

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.

says, " ***These treatments are not where the chase is for curing

this disease

and cure is what's appropriate. "

This is what's important to understand. And I agree with him, this stuff is

probably helping CF. And, CF is NOT CFS.

Trying to connect this to a CFS cure is going to send CFS down a path that

sufferers can't afford to be on. Research has to be held to the medical,

biological, and physical for CFSers to actually be pushed into mainstream

medicine.

Khaly

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

Cattttttt@... wrote:

>

> My CFS started with CMV. I tried the training on my vacation

while I was

> off from work. At first it worked. I took NONE of my meds, and was

able to

> sleep, felt fine. Then, I started getting sick.

***This example of failure from this treatment will be the

overwhelming typical response to any treatment born from this very

questionable hypothesis for CFS, which completely lacks scientific

data to support it. It will fail actual CFS cases after some feeling

a bit of improvement in the start that later fizzles.

***If someday cure ever does come about and stick from such treatment,

then I'll be the first to acknowledge it. But the truth is actual CFS

is a persistent primary infection of some sort, most likely viral from

my observation, which is exacerbated further by things that challenge

the detox system unique to the individual(e.g., mold in some,

opportunistic bacteria in the next person and other things in others).

***The " post " infectious symptoms assumption for actual CFS is bogus

and perpetuated by ill founded CFS research like that done by the

Dubbo studies and Dr Lloyd that only tracked a small number of

post verified EBV cases, which CFS has never been proven to be. Post

verified EBV symptoms are really just a form of super common chronic

fatigue(CF) I suspect and not actual CFS, given CMV and HHV-6

infection also can produce a positive monospot test that falsely

causes the uneducated doctor to assume an EBV mono diagnosis.

***This is a profound weakness in the attempt to connect

Dr Lloyd's research results to CFS. Another tip-off is 80% of

Dr Lloyd's research samples are completely recovered within the first

of year of symptom onset and the rest are recovered by year two.

***That sounds like super common CF that could be brought by any one

of several means to my ears, including reactive depression, but not

CFS. CFS is a completely different animal.

***Core CFS pathology and it's persistance is both unrelated and

utterly independent of thoughts, thought processes, emotions and

behavior. Like any serious disease one will have a variety of

thoughts, thought processes, emotions and behaviors in reaction to it,

but these held as the cause of the disease are simply unverified

beliefs and unchecked assumptions about the core pathology, nothing more.

***There's no scientific data to support them as causal in CFS. Core

CFS pathology and it's symptoms will not be conquered by treatments

aimed at altering these things.

***These treatments are not where the chase is for curing this disease

and cure is what's appropriate.

***

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]

When I met with researcher Cofford, MD, at the U of MI three years

ago, she told me there was commonly a dysregulation of the executive function of

the brain with CFIDS/FMS. She did not elaborate as to what caused this.

mjh

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?I would also note that Dr. Gupta does

propose that brai

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