Re: Cort: overlaps and distinctions

August 15, 2006

Hi Cort,

If you've never read or heard of Dr. Jay Goldstein check him out. He's

retired now , but wrote a book about CFS call " Betrayal by the Brain " He didn't

link it with autism, but he did think that the brain was the central issue of

the problem. He also wrote " Chronic Fatitigue Syndrome: the limbic hypothosis "

They're very technical, but he was a brilliant researcher and was pretty much

poo pooed in the CFS community for a while. It's drug oriented approach, but

that was many years ago.

tansyap <tansyap@...> wrote:

Hi Cort

I don't think anyone is asking for a huge leap in faith, nor to see

autism, ME, and CFS as the same illness.

I am sure you are aware of Professor Malcolm Hooper in the UK. He

recognises both the overlaps, and distinctive specific features, in

autism, GWS, OPP, MCS, ME, and CFS. A brief overview of some of his

work can be seen at http://www.ahummingbirdsguide.com/whooper.htm

Professor Hooper and his colleagues have probably done more than

anyone else in the UK to get ME recognised as a distinctive physical

illness; but he also writes and talks about shared features present

in other chronic illnesses. He recognises the roles of toxins and

infections.

As I see it Dr Yasko and Rich are not saying autism and ME (CFS) are

the same illness; instead they are exploring shared inherited factors

that can lead to the development of neurological illnesses. The posts

here are also making sense of different reactions to glutathione, my

RBC glutathione levels were low, but using the methods usually

recommended to raise glutathione levels, backfired on me. I am

beginning to comprehend why.

I think understanding weaknesses and blocks in various pathways has

the potential to provide a valuable adjunct to other protocols, and

in some cases could work as a stand alone.

TC, Tansy

-- In , cort johnson <cortttt@...>

wrote:

>

> I just think it takes a huge leap of faith to believe that autism -

one of the most profoundly disturbing brain diseases - and CFS are

similar in pathology. Rich got interested in autism by learning that

glutathione can be helpful in autism. But does this mean the two have

similar causes? That GSH is depleted in both? Or is it more likely at

this point thiat they share another common factor such as increased

oxidative stress?

>

> We know that glutathione is very helpful in some CFS patients,

moderately helpful in others and not helpful in others. The research

evidence for low glutathione levels in CFS is very mixed with most

studies showing normal glutathione levels. This is not to say GSH

cannot be very helpful in CFS; CFS has consistently been shown to be

a disease of high oxidative stress and GSH is the main detoxifier in

the body - it stands to reason that it would be helpful. I wouldn't

be surprised if GSH supplementation helps to some degree in many

chronic diseases. Whether or not it is central in CFS is an entirely

different proposal.

>

> To be blunt about it a good number of studies have looked at

antioxidants levels (GSH included) and there doesn't seem to be a

rush in the research community to study it. - we are the ones that

are most interested in it. Even Dr. Cheney - who brought whey protein

to the fore in CFS - did not list it among his top 4 treatments. I

know there are people who have gotten a great deal of help from

glutathione - I dont want to dissuade anybody from trying this

excellent compound - but I dont see the evidence that indicates it is

central to CFS .

>

> While it is true that autistic people share some symptoms with

CFS patients so do fibromyalgia syndrome patients, irritable bowel

syndrome patients, myofascial pain syndrome and people with

overtraining syndorme. The symptomatic overlap between overlap

between orthostatic intolerance and CFS is simply amazing. Besides

their movement difficulties MS patients can experience overwhelming

fatigue. CFS patients also share numerous symptoms with what is

called 'sickness behavior' - which refers to the acute stages of

infection we are all familiar with. Most of the symptoms in CFS are

fairly and a fair number of diseases have many of them. It would be

interesting to see in post exertional fatigue is present in autism -

it appears to be in FMS.

>

> I dont know alot about methylation - I'm waiting for Rich to

write a paper on it - but I would not go so far to say that every CFS

patient has problems with methylation. I would suggest that some do

and treatments based on those problems will be helpful in that case.

>

> I think the methylation treatments will be like many treatment

protocols; each one helps some people in a moderate degree, a few

people will luck out and get really well and some wont get much of a

response to it at all. Why do I think t hat? Because there is little

evidence as yet that CFS is truly a hereditary disorder - the twin

studies certainly dont show that. Does this mean heredity doesnt

play a role? No, hereditary does play some role and it will good to

know what role it plays but it is not determinative. Just on personal

level - my twin brother does not have CFS. Somewhere along the line I

bumped into something really bad and he didnt - that I think is the

difference between us two.

>

> I think theres a long long way to go on our journey to understand

CFS. I dont think its going to be this easy. I do think that

detoxification is very important, however, and if methylation fits

into this detoxification scenario, then treatments addressing it,

along with GSH, will be another valuable addition to the CFS

treatment regime.

>

August 15, 2006

> >

> > I just think it takes a huge leap of faith to believe that autism -

> one of the most profoundly disturbing brain diseases - and CFS are

> similar in pathology. Rich got interested in autism by learning that

> glutathione can be helpful in autism. But does this mean the two have

> similar causes? That GSH is depleted in both? Or is it more likely at

> this point thiat they share another common factor such as increased

> oxidative stress?

> >

> > We know that glutathione is very helpful in some CFS patients,

> moderately helpful in others and not helpful in others. The research

> evidence for low glutathione levels in CFS is very mixed with most

> studies showing normal glutathione levels. This is not to say GSH

> cannot be very helpful in CFS; CFS has consistently been shown to be

> a disease of high oxidative stress and GSH is the main detoxifier in

> the body - it stands to reason that it would be helpful. I wouldn't

> be surprised if GSH supplementation helps to some degree in many

> chronic diseases. Whether or not it is central in CFS is an entirely

> different proposal.

> >

> > To be blunt about it a good number of studies have looked at

> antioxidants levels (GSH included) and there doesn't seem to be a

> rush in the research community to study it. - we are the ones that

> are most interested in it. Even Dr. Cheney - who brought whey protein

> to the fore in CFS - did not list it among his top 4 treatments. I

> know there are people who have gotten a great deal of help from

> glutathione - I dont want to dissuade anybody from trying this

> excellent compound - but I dont see the evidence that indicates it is

> central to CFS .

> >

> > While it is true that autistic people share some symptoms with

> CFS patients so do fibromyalgia syndrome patients, irritable bowel

> syndrome patients, myofascial pain syndrome and people with

> overtraining syndorme. The symptomatic overlap between overlap

> between orthostatic intolerance and CFS is simply amazing. Besides

> their movement difficulties MS patients can experience overwhelming

> fatigue. CFS patients also share numerous symptoms with what is

> called 'sickness behavior' - which refers to the acute stages of

> infection we are all familiar with. Most of the symptoms in CFS are

> fairly and a fair number of diseases have many of them. It would be

> interesting to see in post exertional fatigue is present in autism -

> it appears to be in FMS.

> >

> > I dont know alot about methylation - I'm waiting for Rich to

> write a paper on it - but I would not go so far to say that every CFS

> patient has problems with methylation. I would suggest that some do

> and treatments based on those problems will be helpful in that case.

> >

> > I think the methylation treatments will be like many treatment

> protocols; each one helps some people in a moderate degree, a few

> people will luck out and get really well and some wont get much of a

> response to it at all. Why do I think t hat? Because there is little

> evidence as yet that CFS is truly a hereditary disorder - the twin

> studies certainly dont show that. Does this mean heredity doesnt

> play a role? No, hereditary does play some role and it will good to

> know what role it plays but it is not determinative. Just on personal

> level - my twin brother does not have CFS. Somewhere along the line I

> bumped into something really bad and he didnt - that I think is the

> difference between us two.

> >

> > I think theres a long long way to go on our journey to understand

> CFS. I dont think its going to be this easy. I do think that

> detoxification is very important, however, and if methylation fits

> into this detoxification scenario, then treatments addressing it,

> along with GSH, will be another valuable addition to the CFS

> treatment regime.

> >

>

August 15, 2006

Katrina

Specialists in ME, by which I mean both sudden onset/gradual onset

and the original Ramsay definition, have speculated there may be a

genetic disposition ie susceptibility based on their observations and

decades of experience.

As yet we are learning more about what is going wrong not why.

Outbreaks are easier to define than clusters and sporadic cases; but

the latter are more frequent.

I live in the UK so I am very aware of how PWME feel, but is what I

wrote here so different from what Professor Hoooper has been saying?

He has been at the forefront of getting ME disengaged from idiopathic

chronic fatigue states and Wessely et al's functional somatic

disorders, his work on our behalves is based on good science and

research.

Most ME specialists don't consider this to be genetics plus stress

and emotions, and I don't see that in Dr Amy's work either since she

quotes infections, vaccines, and toxins. In the UK infections,

vaccines, and toxins have been linked with the onset or worsening of

ME.

It's not unusual for this kind of response to possible Tx for ME and

CFIDS/CFS, or for suggestions on what may help alleviate the severity

of some symptoms. I dislike the inferences that if you don't do x, y

or z you don't want to get better as much as you do; but that does

not stop me exploring, debating and considering anything that brings

about light bulb moments.

What most of us want is access to information so we can make up our

own minds.

ME specialists, and PWME representatives at the recent Gibson

Enquiry, have pointed out that many do not just have ME or CFS/CFIDS.

So maybe in a number of genuine cases of ME and CFIDS/CFS it's not a

case of either and or, but a combination of factors including those

being discussed here currently and in the past.

TC, Tansy

> >

> > Hi Cort

> HI Tansy,

> >

> > >>>>I don't think anyone is asking for a huge leap in faith, nor

to see autism, ME, and CFS as the same illness.<<<<<<

>

> Tansy,

>

> In fact, the dominant theme here for many weeks DOES require that

giant leap. Rich has said quite clearly that he belives autism and

CFS (for different reasons) are the same thing.

>

> Other giant leaps of the dominant theme of the last weeks/months on

:

>

> That Chronic Fatigue Syndrome

> is caused by inherited genes, stress and emotions. That is a *very

debatable* premise. It has been discussed and rejected many times

here and ME/CFS world.

>

> Basically allopathic load, which is exactly what the CDC has just

announced. The problem there is that they were not apparently

studying the population for which the name CFS was first invented

(ME/CFIDS/CFS patients, most of whom became devastatingly ill

overnight in a big epidemic, tho some were slower onset). And by and

for whom this list was formed.

> Instead, were studying some mixture of fatigued, " CFS-Like " persons

(their words).

>

> There is no major ME/CFS Researcher that I have ever heard of who

believes that CFS is inherited genes and allopathic/emotional load

only.

>

> Rich has also clearly said that his theories are not addressing

> sudden viral onset CFS. But the wider (and ever widening) category

now under the the umbrella of " CFS " known as the " Fukuda " (CDC)

definition. That his thoughts are " in progress " and that he is using

the list as his laboratory.

>

> You have to understand that the gene/allopathic thing is

particulary a sore spot at the moment because:

> Millions of $$$ going into this theory is money not going into

other promising work and impressive findings in CFS.

>

> And the CDCs answer to this for us is going to be CFS clinics

administering or even REQUIRING Cognitive Behavioral Therapy for

PWCs. Exactly what is being done in the UK to ME/CFS men, women, and

children.

>

> This approach and dominance is also dismissing or minimising the

contributions of the World's 2+ decades of ME/CFS Reseachers,

patients, current work and treatmnts. (But some of which BTW, is very

like Yasko's)

> They are now shot down on this list in 5 minutes, leaving mis-

characterizations of them, and the false impression that they aren't

getting anywhere. Very unfair to both new and long-term patients. And

guranteeing our ignorance and being out of the medical and ME/CFS

loop and progress, btw.

>

> Including Cardiac, Neurological, Immune, and more. ANd includes

gene expression, which some find extremely exciting, for CFS and all

diseases.

> (Personally, I think the field of Neurogenesis is very exciting,

and appopos, due to amyloid protein findings, brain,neuron and muscle

damage in CFS).

> Whatever happened to the CDC's finding that the Huntington's

protein is over expressed in CFS??

>

> Another giant leap of the dominent theme here is that this/Yasko

is " the answer " , " the cure " . (And that you're a dufuus if you don't

believe it lol) Tho this has been said about MANY, MANY theories over

the years, this has been one of the most manic,least challenged and

hardest sells I have ever seen here.

>

> And this, UNLIKE all of the others, with ZERO evidence, ZERO

persons here cured, or even in remission from doing it!

>

> In addition, during part of this frenzy, it has been implied,

nearly directly stated, (I don't mean by Rich) , that if one does not

jump on-board, they do not want to get well!!

>

> That is one of the oldest, and meanest things that have been said

to PWCs for the last 2 decades, regarding any number of theories,

that are the speaking person's current (usually very expensive)

passion.

>

> All of this is a far cry from what you cited as there being

overlaps with Autism, or that CFS is believed to be a brain disease.

(Which it is, by many).

> We would therefore have an overlap with many brain diseases, and

since we have a multi-system disease, an overlap with many diseases.

That is very different from being the " same disease " , which has been

stated by many, many others, over the years. (Candida/Yeast, CEBV,

MCS, FM, Amalgams,Lyme, Psych/stress/Immune, Mold, EMFs,etc.)

>

> At least in those cases, there were people actually cured or in

remission by treating those things. And teach us a great deal about

each that can help us.

>

> Also, some of you on the list have been referring to Rich as God,

Doctor, Geneticist, Pathologist, none of which he is, or has claimed

to be.( um, I don't think)

>

> { I didn't much like the theme either that the most articulate and

least cognitively impaired are the geniouses, and the rest are the

dummies. Some of the slowest processing, most cognitively impaired

(or with least $$ resources) here have some of the best knowledge of

CFS discoveries, and for TREATING this disease)

>

> There is nothing wrong with what Rich is studying or Yasko is

doing, and it seems to be very valuable work.

>

> Maybe for some, with genes/allopathic load, it will actually be

curative. ANd for *anyone*, it would be valuable to find what food,

supplements, and medications are healing or blocking to healing and

why.

> My neighbor, who is an Acupuncturest, offered a few months ago to

do similar testing for me at his special rates.

>

> Rich has been great at taking the time to expand upon and explain

these pathways, although my CFIDS brain can't possibly get it quickly.

>

> But yes, great leaps of faith and totally closed doors to other

theories ARE required to sign on to this one, *as presented*. Plus

everything else that comes on the list seems to now require

filtering/approval through this view it seems.

>

> The Moderators post was no different for Yasko than any other

theory here. ANd has been generously done by many other (much more

depleted) patients who were working on something...presenting the

theory and their specific results in a straight forward manner...sans

the hard sell, personal pressure, for instance.

> Once again, listmembers with other needs and views are going

backchannel and underground to seek or share their information, which

is be very tedious and draining, and limits the lists' exposure to it.

>

> Someone who posted here, seeking help for a very severe patient was

met with.... " sounds grim, only prayer will help. "

>

> A brand new person was told only that listmembers are doing a

program that they/we think will cure us. Maybe that was OK, but why

should they listen to anything else, then, that might help them

*today*?

>

> ... THere are multiple other forums

> for Yasko, Autism, and other angles. This is the largest, and *the

only* one for most for treatment only of ME/CFIDS/CFS, involving many

many theories and many treatments.

>

> Katrina

>

> P.S. I agree that Prof Hooper has been a blessed advocate, and Dr.

Goldstein's brain work did help alot of people.

>

> > I am sure you are aware of Professor Malcolm Hooper in the UK. He

> > recognises both the overlaps, and distinctive specific features,

in

> > autism, GWS, OPP, MCS, ME, and CFS. A brief overview of some of

his

> > work can be seen at http://www.ahummingbirdsguide.com/whooper.htm

> >

> > Professor Hooper and his colleagues have probably done more than

> > anyone else in the UK to get ME recognised as a distinctive

physical

> > illness; but he also writes and talks about shared features

present

> > in other chronic illnesses. He recognises the roles of toxins and

> > infections.

> >

> > As I see it Dr Yasko and Rich are not saying autism and ME (CFS)

are

> > the same illness; instead they are exploring shared inherited

factors

> > that can lead to the development of neurological illnesses. The

posts

> > here are also making sense of different reactions to glutathione,

my

> > RBC glutathione levels were low, but using the methods usually

> > recommended to raise glutathione levels, backfired on me. I am

> > beginning to comprehend why.

> >

> > I think understanding weaknesses and blocks in various pathways

has

> > the potential to provide a valuable adjunct to other protocols,

and

> > in some cases could work as a stand alone.

> >

> > TC, Tansy

August 15, 2006

Tansy,

I don't disagree with anything you said, and I apologise if it seemed I was

aiming everything at you.

Yes, genetics have always been said to be a co-factor for suceptibility and most

of us have overlapping conditions now, even if not at the beginning. due to

ongoing damage. I have a number of things going on, most not seen in one single

other family member/relative.

I just meant that I felt some things have been overreaching, or only apply to

some, or shut out other important views. I have alot of backchannel posts

stating same.

It doesn't mean there is not value in current theme...that would be extreme in

the other direction.

Katrina

>

> Katrina

>

> Specialists in ME, by which I mean both sudden onset/gradual onset

> and the original Ramsay definition, have speculated there may be a

> genetic disposition ie susceptibility based on their observations and

> decades of experience.

>

> As yet we are learning more about what is going wrong not why.

> Outbreaks are easier to define than clusters and sporadic cases; but

> the latter are more frequent.

>

> I live in the UK so I am very aware of how PWME feel, but is what I

> wrote here so different from what Professor Hoooper has been saying?

> He has been at the forefront of getting ME disengaged from idiopathic

> chronic fatigue states and Wessely et al's functional somatic

> disorders, his work on our behalves is based on good science and

> research.

>

> Most ME specialists don't consider this to be genetics plus stress

> and emotions, and I don't see that in Dr Amy's work either since she

> quotes infections, vaccines, and toxins. In the UK infections,

> vaccines, and toxins have been linked with the onset or worsening of

> ME.

>

> It's not unusual for this kind of response to possible Tx for ME and

> CFIDS/CFS, or for suggestions on what may help alleviate the severity

> of some symptoms. I dislike the inferences that if you don't do x, y

> or z you don't want to get better as much as you do; but that does

> not stop me exploring, debating and considering anything that brings

> about light bulb moments.

>

> What most of us want is access to information so we can make up our

> own minds.

>

> ME specialists, and PWME representatives at the recent Gibson

> Enquiry, have pointed out that many do not just have ME or CFS/CFIDS.

> So maybe in a number of genuine cases of ME and CFIDS/CFS it's not a

> case of either and or, but a combination of factors including those

> being discussed here currently and in the past.

>

> TC, Tansy

>

August 15, 2006

Katrina-this is an excellent summary of the topics that have been

discussed here in the last month or so. You also explained very

well that this list is about all theories, not just what one might

see in recent posts, especially for a new member.

I think we should all consider that there are some great minds at

work on this list and all treatments can be discussed. I am always

concerned that a new member might be 'turned off' if they just read

a few pages of messages and don't realize that we discuss any

treatment.

Mike C. (end of off topic message)

> >

> > Hi Cort

> HI Tansy,

> >

> > >>>>I don't think anyone is asking for a huge leap in faith,

nor to see autism, ME, and CFS as the same illness.<<<<<<

>

> Tansy,

>

> In fact, the dominant theme here for many weeks DOES require that

giant leap. Rich has said quite clearly that he belives autism and

CFS (for different reasons) are the same thing.

>

> Other giant leaps of the dominant theme of the last weeks/months

on :

>

> That Chronic Fatigue Syndrome

> is caused by inherited genes, stress and emotions. That is a *very

debatable* premise. It has been discussed and rejected many times

here and ME/CFS world.

>

> Basically allopathic load, which is exactly what the CDC has just

announced. The problem there is that they were not apparently

studying the population for which the name CFS was first invented

(ME/CFIDS/CFS patients, most of whom became devastatingly ill

overnight in a big epidemic, tho some were slower onset). And by and

for whom this list was formed.

> Instead, were studying some mixture of fatigued, " CFS-Like "

persons (their words).

>

> There is no major ME/CFS Researcher that I have ever heard of who

believes that CFS is inherited genes and allopathic/emotional load

only.

>>>>snip<<<<<

August 15, 2006

Hi, Katrina.

I hope that someday you will stop pulling your punches and tell us

how you REALly feel! (:-)

> Tansy,

>

> In fact, the dominant theme here for many weeks DOES require that

giant leap. Rich has said quite clearly that he belives autism and

CFS (for different reasons) are the same thing.

***Yes, there is a bit of a leap there, but once you've made the

leap and look back at the chasm, it doesn't look nearly as wide as

it did before!

>

> Other giant leaps of the dominant theme of the last weeks/months

on :

>

> That Chronic Fatigue Syndrome

> is caused by inherited genes, stress and emotions. That is a *very

debatable* premise. It has been discussed and rejected many times

here and ME/CFS world.

***Hang on a minute, there, Katrina. If you're referring to what

I've been talking about, that isn't exactly what I've been saying.

Yes, I believe that inherited genetic variations are at the root of

CFS for many PWCs. However, there are many circumstances in a

person's life that will raise cortisol and deplete glutathione,

which I believe are the biochemical factors that lead to the onset

of CFS in a person who has the appropriate genetic variations.

These circumstances can include physical, chemical, biological and

psychological/emotional stressors. The particular combination of

these circumstances is different for each case. Some probably don't

involve psychological/emotional stress. Others clearly do. But

it's the effects of these stressors on the biochemistry that is the

key.

>

> Basically allopathic load, which is exactly what the CDC has just

announced.

***If you understand allopathic load to include all the factors I've

listed above, then yes, allopathic load, in combination with genetic

predisposition, is one produces CFS onset for many PWCs. So long as

you don't interpret allopathic load to be only caused by emotional

stress. I don't see it that way.

The problem there is that they were not apparently studying the

population for which the name CFS was first invented (ME/CFIDS/CFS

patients, most of whom became devastatingly ill overnight in a big

epidemic, tho some were slower onset). And by and for whom this

list was formed.

> Instead, were studying some mixture of fatigued, " CFS-Like "

persons (their words).

]

***The CFS case definition definitely has problems, as I discussed

in my post to Cort. But it is true that the current case definition

does include both epidemic and sporadic cases.

>

> There is no major ME/CFS Researcher that I have ever heard of who

believes that CFS is inherited genes and allopathic/emotional load

only.

***I don't know if there is or not. I certainly don't understand

allopathic load as being due to emotional stress alone, and I don't

think stress researchers in general see it that way. Certainly

Bruce McEwen and Goldstein, who coined this term and defined

it originally, don't see it that way. Emotional stress is a

contributor, but not the whole story. Allopathic load includes

everything to which the nonspecific stress response systems of the

body respond.

>

> Rich has also clearly said that his theories are not addressing

> sudden viral onset CFS.

***That's sort of what I said, but not exactly. I said that my

hypothesis does not address the epidemic cases. There are many

sporadic cases that begin with a sudden viral-type onset, and my

hypothesis does include those who undergo sudden reactivation of a

latent endogenous virus, which seems to occur in about half the

cases that satisfy the Fukuda et al. criteria.

but the wider (and ever widening) category now under the the

umbrella of " CFS " known as the " Fukuda " (CDC) definition. That his

thoughts are " in progress " and that he is using the list as his

laboratory.

*** " using " sounds a little indelicate. (:-) I like to think that I

am also " being used. " Yes, I would say that my thinking is always

in progress. Haven't yet found all the ultimate truth about this

disorder.

>

> You have to understand that the gene/allopathic thing is

particulary a sore spot at the moment because:

> Millions of $$$ going into this theory is money not going into

other promising work and impressive findings in CFS.

***I would like to see somewhat different research priorities, too.

In particular, I would like to see certain additional parts of the

genome explored for polymorphisms that are more frequent in PWCs,

beside the neurotransmitter and stress response systems, though I do

agree that they are important.

>

> And the CDCs answer to this for us is going to be CFS clinics

administering or even REQUIRING Cognitive Behavioral Therapy for

PWCs. Exactly what is being done in the UK to ME/CFS men, women, and

children.

***I can't offer anything on that topic. I really don't know what

they are planning to do.

>

> This approach and dominance is also dismissing or minimising the

contributions of the World's 2+ decades of ME/CFS Reseachers,

patients, current work and treatmnts. (But some of which BTW, is

very like Yasko's)

***If you're referring to what I've been talking about here, I don't

think that's true. What I've been doing is to study that whole body

of work, as self-contradictory as it is, and try to develop a

comprehensive hypothesis that incorporates it all, at least the

actual observations, not necessarily the theories, many of which I

don't believe are correct or are so limited that they really don't

explain much.

> They are now shot down on this list in 5 minutes, leaving mis-

characterizations of them, and the false impression that they aren't

getting anywhere. Very unfair to both new and long-term patients.

And guranteeing our ignorance and being out of the medical and

ME/CFS loop and progress, btw.

***I certainly don't want to be unfair to anybody. If you can get

more specific here, I might be able to tell you if I agree or

disagree with these contributions and why. I don't think it's

unfair to do that. That's what scientific discourse is all about.

>

> Including Cardiac, Neurological, Immune, and more. ANd includes

gene expression, which some find extremely exciting, for CFS and all

diseases.

***O.K. Well, I think the glutathione depletion--methylation cycle

block hypothesis encompasses the aspects of CFS from all those

fields. I think they are all significant aspects. Perhaps the

differences between my hypothesis and the ideas of others are in the

realm of what causes what. I'm trying to put together a cause-

effect tree that jibes with accepted biochemistry and physiology and

also corresponds to the observed course of the illness.

> (Personally, I think the field of Neurogenesis is very exciting,

and appopos, due to amyloid protein findings, brain,neuron and

muscle damage in CFS).

***Well, I'd like to hear more about that.

> Whatever happened to the CDC's finding that the Huntington's

protein is over expressed in CFS??

***I don't know whether this observation has been replicated in the

gene expression work that has come later or not. I think there was

a misconception about this observation. It had nothing to do with

implying that there was any connection between CFS and Huntington's

disease. It was just that they found a difference in gene

expression in the gene that is found to be abnormal in Huntington's

disease. But the gene itself was not found to be abnormal in PWCs.

>

> Another giant leap of the dominent theme here is that this/Yasko

is " the answer " , " the cure " . (And that you're a dufuus if you don't

believe it lol) Tho this has been said about MANY, MANY theories

over the years, this has been one of the most manic,least challenged

and hardest sells I have ever seen here.

***Well, for what it's worth, I don't feel that way. Do I seem

manic to you? I'll go with obsessed, but manic is a little strong,

I think. With the heterogeneous population that we have in CFS

under the current definition, I don't believe that one approach will

help everyone. I do think that this one will help quite a few,

though, and I'm excited about it for that reason. I'm really not

trying to sell anything, but I am hoping to interest people in

thinking this approach over seriously. I actually appreciate

challenges, because that's how we test hypotheses.

>

> And this, UNLIKE all of the others, with ZERO evidence, ZERO

persons here cured, or even in remission from doing it!

***I'm not sure it's unlike all the others in that regard. Most

treatments for CFS have helped some with the quality of life, but

cures have been few and far between. As far as evidence, I think

there's actually quite a lot. I don't know whether you have been

reading the case analyses I've been posting, but the pieces of

evidence really do fit together quite well on many of them, I think.

I think we are going to have to be patient a little longer to see

the results in a number of people, because it takes time to shift

the metabolism, which has been going in wrong directions for decades

in some cases, back to the right directions. There is a lot of

epigenetics that has to be changed.

>

> In addition, during part of this frenzy, it has been implied,

nearly directly stated, (I don't mean by Rich) , that if one does

not jump on-board, they do not want to get well!!

***Well, I certainly don't feel that way. I realize that different

people are going to need differing amounts of evidence before they

will be prepared to make a decision about this. I know that there

have been a lot of disappointments and a lot of money spent on

things that didn't help. I don't blame people at all for being

skeptical and asking hard questions. I do the same to myself, even

in my sleep!

>

> That is one of the oldest, and meanest things that have been said

to PWCs for the last 2 decades, regarding any number of theories,

that are the speaking person's current (usually very expensive)

passion.

***I think that sometimes people are really trying to convince

themselves when they imply things like that to others. It's not

easy to step out on a limb, and once you've done it, it's hard to

listen to people questioning you about what you've done, while

you're still waiting to see results yourself. It's a stressful

place to be.

>

> All of this is a far cry from what you cited as there being

overlaps with Autism, or that CFS is believed to be a brain disease.

(Which it is, by many).

***Well, I believe that there are major overlaps with autism, and

there's no question that the brain is affected in CFS, though

differently than it is in autism, by reason of the different ages at

onset and the different status of brain development at those ages.

I think the questions are about what causes the problems in the

brain, and where does the disease process actually start?

> We would therefore have an overlap with many brain diseases, and

since we have a multi-system disease, an overlap with many diseases.

That is very different from being the " same disease " , which has been

stated by many, many others, over the years. (Candida/Yeast, CEBV,

MCS, FM, Amalgams,Lyme, Psych/stress/Immune, Mold, EMFs,etc.)

***I believe that the genetic predisposition and much of the

biochemistry are substantially the same in CFS and autism. There

certainly are differences in the effects on the brain in the two,

and again, I think that results from the different ages at onset.

>

> At least in those cases, there were people actually cured or in

remission by treating those things. And teach us a great deal about

each that can help us.

***If you're speaking of the list above, starting with

Candida/Yeast, yes, some helpful treatments have been found for some

of them. However, where these things have been comorbid with CFS, I

think the root cause has often not been dealt with, so that the

person is not really well, though the quality of life has certainly

been improved by working on these things.

>

> Also, some of you on the list have been referring to Rich as God,

Doctor, Geneticist, Pathologist, none of which he is, or has claimed

to be.( um, I don't think)

***You got that last part right!

>

> { I didn't much like the theme either that the most articulate and

least cognitively impaired are the geniouses, and the rest are the

dummies. Some of the slowest processing, most cognitively impaired

(or with least $$ resources) here have some of the best knowledge

of CFS discoveries, and for TREATING this disease)

***Yes, they are veterans of a lot of prior battles, and I value

their corporate memory and experience.

>

> There is nothing wrong with what Rich is studying or Yasko is

doing, and it seems to be very valuable work.

***I'm sure there are some errors in it, and a lot that hasn't been

discovered yet, but I'm hopeful that we are on the right track.

>

> Maybe for some, with genes/allopathic load, it will actually be

curative. ANd for *anyone*, it would be valuable to find what food,

supplements, and medications are healing or blocking to healing and

why.

***As I say, I'm hopeful that it will be helpful to many.

> My neighbor, who is an Acupuncturest, offered a few months ago to

do similar testing for me at his special rates.

>

> Rich has been great at taking the time to expand upon and explain

these pathways, although my CFIDS brain can't possibly get it

quickly.

***There's a lot that comes in one side and goes out the other side

of mine, too.

>

> But yes, great leaps of faith and totally closed doors to other

theories ARE required to sign on to this one, *as presented*. Plus

everything else that comes on the list seems to now require

filtering/approval through this view it seems.

***Well, I don't see it that way myself. There are quite a few

things that are raised that I don't comment on, because I don't

think I understand them enough to make an intelligent contribution.

It's true that I am trying to incorporate all genuine observations

in CFS into a comprehensive hypothesis that can account for all of

them, though. I'm sorry if that looks like filtering. I would call

it incorporating.

>

> The Moderators post was no different for Yasko than any other

theory here. ANd has been generously done by many other (much more

depleted) patients who were working on something...presenting the

theory and their specific results in a straight forward

manner...sans the hard sell, personal pressure, for instance.

***I think we do need to be gentle with each other.

> Once again, listmembers with other needs and views are going

backchannel and underground to seek or share their information,

which is be very tedious and draining, and limits the lists'

exposure to it.

***I hope everyone will continue to feel that their views are

welcome.

>

> Someone who posted here, seeking help for a very severe patient

was met with.... " sounds grim, only prayer will help. "

***I don't recall that particular response, but I can tell you that

I pray for a lot of people. I still support the philosophy

of " Praise the Lord and pass the ammunition, " though. I think we

have to try to figure things out and do what we can, but I don't

plan to stop praying in addition.

>

> A brand new person was told only that listmembers are doing a

program that they/we think will cure us. Maybe that was OK, but why

should they listen to anything else, then, that might help them

*today*?

***Well, I think we have to depend on each person to decide what

they feel like listening to, and I agree that we need to make

different ideas and views welcome here.

>

> ... THere are multiple other forums

> for Yasko, Autism, and other angles. This is the largest, and *the

only* one for most for treatment only of ME/CFIDS/CFS, involving

many many theories and many treatments.

***Right on. I think that's a real strength of this group. The

free marketplace of ideas, and all that.

>

> Katrina

***Rich

August 16, 2006

>

> > Tansy,

> >

> > In fact, the dominant theme here for many weeks DOES require that

> giant leap. Rich has said quite clearly that he belives autism and

> CFS (for different reasons) are the same thing.

>

> R: ***Yes, there is a bit of a leap there, but once you've made the

> leap and look back at the chasm, it doesn't look nearly as wide as

> it did before!

K: Rich, I've been interested in CFS/Autism connection for 10 years. I have

written about that several times on the list. And even discussed it with young

adult Autistics who can communicate on-line. I have told some friends and family

about it

( except for a couple of the closest, this does not go over very big).

But, it's very specific elements, not the whole illness, that seemed similar.

I asked once before, and still don't know, according to Amy, you, or

patients...where are the tests of controls, healthy or other illnesses, that

show these connections you see to be only between Autism and CFS specifically?

What is the data that is tying these 2 specifically together, as opposed to

other people, also ?

Don't you need that to prove a hypothesis , or to make the statements that have

been made?

.................................

> > Other giant leaps of the dominant theme of the last weeks/months

> on :

> >

> > That Chronic Fatigue Syndrome

> > is caused by inherited genes, stress and emotions. That is a *very

> debatable* premise. It has been discussed and rejected many times

> here and ME/CFS world.

>

>R: ***Hang on a minute, there, Katrina. If you're referring to what

> I've been talking about, that isn't exactly what I've been saying.

> Yes, I believe that inherited genetic variations are at the root of

> CFS for many PWCs. However, there are many circumstances in a

> person's life that will raise cortisol and deplete glutathione,

> which I believe are the biochemical factors that lead to the onset

> of CFS in a person who has the appropriate genetic variations.

> These circumstances can include physical, chemical, biological and

> psychological/emotional stressors. The particular combination of

> these circumstances is different for each case. Some probably don't

> involve psychological/emotional stress. Others clearly do. But

> it's the effects of these stressors on the biochemistry that is the

> key.

K: I see what you mean, and can see that this could happen...but being in the

epidemic onset, and knowing many others in it, it just doesn't explain the

onset, or all that follows. Other than these, I'm not sure it explains

CFS-specific onset, either. But that gets to who, which def CFS do we mean? For

instance, to develop your hypothesis, are you and the patients here identifying

this exactly? It's kind of confusing, if not.

.................................

> > Basically allopathic load, which is exactly what the CDC has just

> announced.

>

> ***If you understand allopathic load to include all the factors I've

> listed above, then yes, allopathic load, in combination with genetic

predisposition, is one produces CFS onset for many PWCs. So long as you don't

interpret allopathic load to be only caused by emotional

> stress. I don't see it that way.

>

>K: No, I don't, but whenever that idea is attached to CFS, it does seem to be

the case, as co-factor, and/or extender.

{A side note is that I don't remember if you were here through all the endless

discussions and comparisons on stress factors/stressors}

..................................

The problem there is that they were not apparently studying the > population for

which the name CFS was first invented (ME/CFIDS/CFS patients, most of whom

became devastatingly ill overnight in a big epidemic, tho some were slower

onset). And by and for whom this list was formed.

> >

Instead, were studying some mixture of fatigued, " CFS-Like "

> persons (their words).

> ]

>

R: ***The CFS case definition definitely has problems, as I discussed in my post

to Cort. But it is true that the current case definition does include both

epidemic and sporadic cases.

K: Glad you said that...Because of this, I don't know how anyone is managing to

actually select research subjects, with only " Fukuda def " (now wider than ever)

and have it mean anything. It almost seems to be in the eye of the beholder,

unless specified which subset (made up by the researcher, since the CDC has not

made any!) But, I don't think impossible to do.

.................................

There is no major ME/CFS Researcher that I have ever heard of who believes that

CFS is inherited genes and allopathic/emotional load only.

>

>R: ***I don't know if there is or not. I certainly don't understand allopathic

load as being due to emotional stress alone, and I don't think stress

researchers in general see it that way. Certainly

> Bruce McEwen and Goldstein, who coined this term and defined it

originally, don't see it that way. Emotional stress is a contributor,

K: But does seem neccessary to this

R: but not the whole story. Allopathic load includes

> everything to which the nonspecific stress response systems of the body

respond.

Tho I know you mean specifics, it still seems too random,too inevitable for my

experience and witnessing of this disease

.................................

> > Rich has also clearly said that his theories are not addressing sudden viral

onset CFS.

>

> ***That's sort of what I said, but not exactly. I said that my

> hypothesis does not address the epidemic cases. There are many sporadic cases

that begin with a sudden viral-type onset, and my hypothesis does include those

who undergo sudden reactivation of a latent endogenous virus, which seems to

occur in about half the

> cases that satisfy the Fukuda et al. criteria.

K: Don't know about the 50% figure, but I do remember you said the above, and I

should have also.

.................................

but the wider (and ever widening) category now under the the

> umbrella of " CFS " known as the " Fukuda " (CDC) definition. That his thoughts

are " in progress " and that he is using the list as his laboratory.

>

R: *** " using " sounds a little indelicate. (:-)

K: Yes, it does! sorry, I forgot the word you said

R: I like to think that I am also " being used. "

K Yes, 100% agree with that.

R: Yes, I would say that my thinking is always

> in progress. Haven't yet found all the ultimate truth about this disorder.

K: You have said that...was just pointing it out, because that was not coming

across from others' statements

.................................

You have to understand that the gene/allopathic thing is

> particulary a sore spot at the moment because:

> > Millions of $$$ going into this theory is money not going into

> other promising work and impressive findings in CFS.

>

R: ***I would like to see somewhat different research priorities, too.

In particular, I would like to see certain additional parts of the genome

explored for polymorphisms that are more frequent in PWCs, beside the

neurotransmitter and stress response systems, though I do

> agree that they are important.

K: sounds great (with controls, I hope)

.................................

And the CDCs answer to this for us is going to be CFS clinics

> administering or even REQUIRING Cognitive Behavioral Therapy for PWCs. Exactly

what is being done in the UK to ME/CFS men, women, and children.

R:***I can't offer anything on that topic. I really don't know what they are

planning to do.

K: It's indicated several places, and having seen it evolve elsewhere and how,

really colors how one views research and treatment interpretations

.................................

This approach and dominance is also dismissing or minimising the contributions

of the World's 2+ decades of ME/CFS Reseachers, patients, current work and

treatmnts. (But some of which BTW, is very like Yasko's)

>

R: ***If you're referring to what I've been talking about here, I don't think

that's true. What I've been doing is to study that whole body

> of work, as self-contradictory as it is, and try to develop a

> comprehensive hypothesis that incorporates it all, at least the actual

observations,

K Yes, I see that

R: not necessarily the theories, many of which I don't believe are correct or

are so limited that they really don't explain much.

K: That can be your, or anyone's opinion...but some of us want to hear them

through further, or with questions, before they are pronounced " incorrect " ...and

contemplate/decide for ourselves. The same space that yours, A Yasko, or

anyone's have gotten.

They are looking at lab work, and actual bodies, some for 2 decades...what do

they see? What are those patterns? Many of us do not know.

Especially when actual patients are following their suggestions, so we can see

the treatment effects...already in progress.

.................................

They are now shot down on this list in 5 minutes, leaving mis-

> characterizations of them, and the false impression that they aren't getting

anywhere. Very unfair to both new and long-term patients.

And guranteeing our ignorance and being out of the medical and ME/CFS loop and

progress, btw.

R: ***I certainly don't want to be unfair to anybody.

K:YAY !

R: If you can get more specific here, I might be able to tell you if I agree or

disagree with these contributions and why. I don't think it's unfair to do

that. That's what scientific discourse is all about

K: I'm so glad you asked. You recently said, as others have, that Dr. Cheney

thinks the heart is the cause of CFS. But he does not say that. He'll be

speaking in Sept w/video. Don't know what, if anything has changed, but I hear

there's a bunch added!.

Other things get said here about various others, I think also

Someone just pronounced that we discussed Ciguatera epitope, and it did not pan

out...

A) It's alive and kicking, at U of H, with a mill or so from the NIH

Something about identifying lipids involved, how to fix them, and if/what

pathogen is causing it.

The " discussion " was under very hostile circumstances here

(I don't think that included you)

.................................

Including Cardiac, Neurological, Immune, and more. ANd includes

> gene expression, which some find extremely exciting, for CFS and all

diseases.

>

R: ***O.K. Well, I think the glutathione depletion--methylation cycle

block hypothesis encompasses the aspects of CFS from all those fields. I think

they are all significant aspects. Perhaps the

> differences between my hypothesis and the ideas of others are in the

> realm of what causes what. I'm trying to put together a cause-

> effect tree that jibes with accepted biochemistry and physiology and

> also corresponds to the observed course of the illness.

K: Not an either or...maybe people want to know your hypothesis, and X, Y, Zs,

too...

.................................

(Personally, I think the field of Neurogenesis is very exciting,

> and appopos, due to amyloid protein findings, brain,neuron and

> muscle damage in CFS).

>

R: ***Well, I'd like to hear more about that.

K: Kewl I'll review

Whatever happened to the CDC's finding that the Huntington's

> protein is over expressed in CFS??

>

>R: ***I don't know whether this observation has been replicated in the gene

expression work that has come later or not. I think there was a misconception

about this observation. It had nothing to do with implying that there was any

connection between CFS and Huntington's disease. It was just that they found a

difference in gene expression in the gene that is found to be abnormal in

Huntington's

> disease. But the gene itself was not found to be abnormal in PWCs.

K: Right...just want know more...why, where did it go, Why did we hear it

" accidentally " , etc ?

.................................

> > Another giant leap of the dominent theme here is that this/Yasko is " the

answer " , " the cure " . (And that you're a dufuus if you don't believe it lol) Tho

this has been said about MANY, MANY theories over the years, this has been one

of the most manic,least challenged and hardest sells I have ever seen here.

>

R: ***Well, for what it's worth, I don't feel that way. Do I seem manic to you?

I'll go with obsessed, but manic is a little strong,

> I think.

K: agree, about you,,,but general speediness and content of posts and toward

others.....100 messages a day for several weeks, twice that of before

.................................

With the heterogeneous population that we have in CFS

under the current definition, I don't believe that one approach will help

everyone. I do think that this one will help quite a few, though, and I'm

excited about it for that reason.

K: Nothing wrong with that...just was not coming out clearly

R: I'm really not trying to sell anything, but I am hoping to interest people in

> thinking this approach over seriously. I actually appreciate challenges,

because that's how we test hypotheses.

K: THat makes alot of sense

.................................

And this, UNLIKE all of the others, with ZERO evidence, ZERO persons here

cured, or even in remission from doing it!

R: ***I'm not sure it's unlike all the others in that regard. Most treatments

for CFS have helped some with the quality of life, but cures have been few and

far between.

K: Some others do have remissions and alot of improvement to go along with the

enthusiasm and space discussing them

R: As far as evidence, I think there's actually quite a lot. I don't know

whether you have been reading the case analyses I've been posting, but the

pieces of evidence really do fit together quite well on many of them, I think.

K: I meant changes from members doing all the discussin', as with other things

discussed

R: I think we are going to have to be patient a little longer to see the results

in a number of people, because it takes time to shift the metabolism, which has

been going in wrong directions for decades in some cases, back to the right

directions.

K: Of Course! Same that should be given to others, for same reasons!

There is a lot of epigenetics that has to be changed.

In addition, during part of this frenzy, it has been implied, nearly directly

stated, (I don't mean by Rich) , that if one does not jump on-board, they do not

want to get well!!

R: ***Well, I certainly don't feel that way. I realize that different people

are going to need differing amounts of evidence before they

> will be prepared to make a decision about this. I know that there have been a

lot of disappointments and a lot of money spent on things that didn't help. I

don't blame people at all for being

> skeptical and asking hard questions. I do the same to myself, even in my

sleep!

K: Super....I sure hope others will consider what you have said, which will

require a shift...on and off-list

.................................

That is one of the oldest, and meanest things that have been said to PWCs for

the last 2 decades, regarding any number of theories, that are the speaking

person's current (usually very expensive) passion.

R: ***I think that sometimes people are really trying to convince themselves

when they imply things like that to others. It's not easy to step out on a

limb, and once you've done it, it's hard to listen to people questioning you

about what you've done, while you're still waiting to see results yourself.

It's a stressful

place to be.

K: Yes, have 1st hand and eyewitness experience, right here in River City...many

have been there...here.

................................

All of this is a far cry from what you cited as there being

> overlaps with Autism, or that CFS is believed to be a brain disease.

> (Which it is, by many).

R: ***Well, I believe that there are major overlaps with autism, and there's no

question that the brain is affected in CFS, though differently than it is in

autism, by reason of the different ages at onset and the different status of

brain development at those ages.

I think the questions are about what causes the problems in the brain, and where

does the disease process actually start?

K: Keep us posted!

.................................

> > We would therefore have an overlap with many brain diseases, and

> since we have a multi-system disease, an overlap with many diseases.

> That is very different from being the " same disease " , which has been

> stated by many, many others, over the years. (Candida/Yeast, CEBV, MCS, FM,

Amalgams,Lyme, Psych/stress/Immune, Mold, EMFs,etc.)

R: ***I believe that the genetic predisposition and much of the

> biochemistry are substantially the same in CFS and autism. There certainly

are differences in the effects on the brain in the two, and again, I think that

results from the different ages at onset.

K: What about the rest of the bod? All the other systems in each? How, the same?

I only see elements...so far

.................................

At least in those cases, there were people actually cured or in remission by

treating those things. And teach us a great deal about each that can help us.

R:***If you're speaking of the list above, starting with

> Candida/Yeast, yes, some helpful treatments have been found for some of them.

However, where these things have been comorbid with CFS, I

> think the root cause has often not been dealt with, so that the person is not

really well, though the quality of life has certainly been improved by working

on these things.

K: It was just more (tangible)to go on, for full fledged experiment sign-ons.

and pressing others..

Also, some of you on the list have been referring to Rich as God, Doctor,

Geneticist, Pathologist, none of which he is, or has claimed

> to be.( um, I don't think)

>

R: ***You got that last part right!

That would be quite a responsibility

{ I didn't much like the theme either that the most articulate and least

cognitively impaired are the geniouses, and the rest are the dummies. Some of

the slowest processing, most cognitively impaired (or with least $$ resources)

here have some of the best knowledge

> of CFS discoveries, and for TREATING this disease)

>

R: ***Yes, they are veterans of a lot of prior battles, and I value their

corporate memory and experience.

K: Thank you for sharing your view of this

There is nothing wrong with what Rich is studying or Yasko is doing, and it

seems to be very valuable work.

>

R: ***I'm sure there are some errors in it, and a lot that hasn't been

discovered yet, but I'm hopeful that we are on the right track.

K Will be very interestin

.................................

Maybe for some, with genes/allopathic load, it will actually be curative. ANd

for *anyone*, it would be valuable to find what food, supplements, and

medications are healing or blocking to healing and

why.

>

> ***As I say, I'm hopeful that it will be helpful to many.

>

> > My neighbor, who is an Acupuncturest, offered a few months ago to do similar

testing for me at his special rates.

Rich has been great at taking the time to expand upon and explain these

pathways, although my CFIDS brain can't possibly get it quickly.

>

R: ***There's a lot that comes in one side and goes out the other side of mine,

too.

lol, whew

But yes, great leaps of faith and totally closed doors to other theories ARE

required to sign on to this one, *as presented*. Plus

> everything else that comes on the list seems to now require

> filtering/approval through this view it seems.

>

R: ***Well, I don't see it that way myself. There are quite a few things that

are raised that I don't comment on, because I don't think I understand them

enough to make an intelligent contribution.

It's true that I am trying to incorporate all genuine observations in CFS into a

comprehensive hypothesis that can account for all of

> them, though. I'm sorry if that looks like filtering. I would call it

incorporating.

K: hmm, have to think about that

.................................

The Moderators post was no different for Yasko than any other theory here. ANd

has been generously done by many other (much more depleted) patients who were

working on something...presenting the

> theory and their specific results in a straight forward

> manner...sans the hard sell, personal pressure, for instance.

R: ***I think we do need to be gentle with each other.

K: I know it can be done

................................

Once again, listmembers with other needs and views are going

> backchannel and underground to seek or share their information, which is be

very tedious and draining, and limits the lists'

> exposure to it.

R: ***I hope everyone will continue to feel that their views are welcome.

K: That, coming from you, will make a big difference

.................................

Someone who posted here, seeking help for a very severe patient

> was met with.... " sounds grim, only prayer will help. "

>

R: ***I don't recall that particular response, but I can tell you that I pray

for a lot of people. I still support the philosophy of " Praise the Lord and

pass the ammunition, " though. I think we have to try to figure things out and

do what we can, but I don't plan to stop praying in addition.

K: AGREE {I think the person was hoping for some ammunition, too}

.................................

A brand new person was told only that listmembers are doing a

> program that they/we think will cure us. Maybe that was OK, but why

> should they listen to anything else, then, that might help them

> *today*?

>

R: ***Well, I think we have to depend on each person to decide what they feel

like listening to, and I agree that we need to make different ideas and views

welcome here

K: All of that together sounds strengthening for all

> > ... THere are multiple other forums for Yasko, Autism, and other angles.

This is the largest, and *the only* one for most for treatment only of

ME/CFIDS/CFS, involving

> many many theories and many treatments.

>

> R: ***Right on. I think that's a real strength of this group. The free

marketplace of ideas, and all that.

K: Yippeee, the best of all worlds, the thing that's meant so much here to so

many...

THANK YOU so much, Rich, for sharing your views, which are much clearer. I think

that's very valuable and hope others do too.

TC,

Katrina

***Rich

August 16, 2006

> Other giant leaps of the dominant theme of the last weeks/months

on :

That Chronic Fatigue Syndrome is caused by inherited genes, stress

and emotions. That is a *very debatable* premise. It has been

discussed and rejected many times

> here and ME/CFS world.

>

> ***Hang on a minute, there, Katrina. If you're referring to what

> I've been talking about, that isn't exactly what I've been

saying. Yes, I believe that inherited genetic variations are at

the root of CFS for many PWCs. However, there are many

circumstances in a person's life that will raise cortisol and

deplete glutathione, which I believe are the biochemical factors

that lead to the onset of CFS in a person who has the appropriate

genetic variations. These circumstances can include physical,

chemical, biological and psychological/emotional stressors. The

particular combination of these circumstances is different for each

case. Some probably don't involve psychological/emotional stress.

Others clearly do. But it's the effects of these stressors on the

biochemistry that is the key.

>

No, there was nothing you could call " stressors " any more than you

could say that getting shot or stabbed is " stressing " the body by

lack of blood " : Like the ridiculousness of saying " It wasn't the

bullet that killed him, it was stress of getting shot " (stress

meaning trauma and blood loss)

I remember in the old days when stress meant psychologial, and if

you got a horrible illness or physical trauma - these weren't

included.

What is the problem here with dropping the " stress " BS.

We got a flu-like illness from Hell. It didn't care who it hit. It

raged through clusters of people in a spectacular manner that defies

statistical requirements for a rare inherited illness, yet twenty

years after we dropped all this CRAP in Incline - people on a CFS

list debate it as if these things were relevant.

They are not. Unless you are discussing some illness that is so

unlike CFS that you have to say " CFS is heterogeneous " to cover your

ass.

CFS is NOT heterogeneous. The reason it was turned into a syndrome

is that we all shared the SAME signs and symptoms.

CFS was the OPPOSITE of heterogeneous.

Amazing how people forcefully say that " heterogeneous " if it were

obvious and unquestioned. They need to in order to promulgate

and " anything and everything " concept.

But take another look.

The entire reason for the creation of " CFS " is because we all had

the same signs and symptoms after that " Yuppie Flu " passed through.

It it had been heterogeneous, the connection between our illness

wouldn't even have been made.

If the CFS one is speaking of is so unlike CFS that it doesn't

share the same symptoms, it's not part of the syndrome, and it is

not CFS.

Autism is just plain not like CFS.

(and that's what I really think)

-

August 16, 2006

Yes I know about Dr. Goldstein - I tried to read one of his books but failed

unfortunately. I agree that the brain is key in CFS. My newsletter - Phoenix

Rising - is full of studies on brain problems in CFS. I have written three

papers reviewing the possible connection of hte brain in CFS. My disagreement

that Autistics and CFS patients suffer from the same general problem - but at

differnet times in their development, does not indicate that I dont think the

brain is involved - I think its an intimate part of CFS.

You can find the brain papers as well as others at

http://www.phoenix-cfs.org/The%20SITE/CFSResearchIntro.htm

Edy Rayfield <edyrayfield@...> wrote:

Hi Cort,

If you've never read or heard of Dr. Jay Goldstein check him out. He's retired

now , but wrote a book about CFS call " Betrayal by the Brain " He didn't link it

with autism, but he did think that the brain was the central issue of the

problem. He also wrote " Chronic Fatitigue Syndrome: the limbic hypothosis "