Re: Re: immunity in CFS

[Guest guest]

I'm not saying genetics doesn't have a lot to do with being predisposed to certain illnesses. But it also doesn't mean that we shouldn't realize that huge numbers of the human population is getting more susceptible to infection as the bacteria become more resistant. All it takes is being exposed at the right place and right time. It's going to take a lot of major immune system tinkering to beat that. I'm all for immunologists doing their research. I'm not all for our community, let alone the medical community in general, continuing to ignore the rapidly increasing problem of abx resistant bacteria and their ravaging effects on people. You know, a lot of microbiologists think doctors are pretty stupid when it comes to this stuff and tolerate them only reluctantly, so I also think it would be good for these two disciplines to get it together and start figuring this stuff out for everyone's

sake. By the way. I have an identical twin living with me at the moment. It's fascinating. In old pictures she and her sister look and seem identical in every way except that my friend tells me her sister has been very sick for a long time with CFS, FMS and Alkalysing Spondolosis while my friend is not, Plus the twin is left handed and my friend is right handed. The twin has zero artistic ability and my friend is an artist. The twin had normal teeth and my friend had a tooth grow through the roof of her mouth which was very painful. Conversely, my friend suffered with Bipolar disorder when she was younger, but the twin did not. My friend has been travelling the world for years, and her twin has locked herself away in an apartment due to her illness and doesn't see anyone anymore, not even her twin even though they were practically glued at the hip for most of their lives, attending

all the same classrooms and events growing up. They did everything together, played all the twin switcheroo pranks, etc., until one sister got sick. They were inseperable until the illness became too much for the twin which, to be honest, my friend just couldn't understand. In fact, her entire family thought her sister's illness was in her head. Only recently has my friend begun to realize the suffering her twin has been going through for more than a decade and why she's shut her family out for their lack of understanding. Now here's two people with identical dna, and yet their lives have taken very different turns with one being quite ill and the other very active and healthy. So how would it help to determine if their dna might make them more prone to infection? What would really help is figuring out how to fight off

the infection/bugs so the twin could resume a normal life like my friend's. penny <usenethod@...> wrote: > But it shouldn't be considered "underactive" if it's doing the bestany human immune system can do against a particularly resistant bug. But who's to say that it is? More likely, IMO, that is far from true.Part of the reason an organism (might have) gotten stuck with

somenonresolving infection could be stochastic - ie, it could easily havegone otherwise but just didn't (for no single reason or few simplereasons, just as a dice rolls a 2 one time and a 6 another time for nosimple reason). But much of it could also very well be genetic. How would you know?Well, look at twin concordances. Identical twins are very likely to beconcordant for things like TB and leprosy (concordant meaning, eitherthey both get it, or neither does; if only one gets it they arediscordant). Of course, since TB is quite communicable and leprosy somewhat so,it's hard to say whether one simply gave it to the other, or they bothgot it from a third source. If so, one could explain the concordancewithout recourse to genetic disposition. Thus, it's hard to prove genetic predispositions to infectious diseasein an airtight way. I can't say that I definitely disagree with yourstatement "because of

A therefore B therefore C therefore D,airtight." But I do think the balance of evidence suggests thatcertain persons have a very significant disposition to certaininfections and/or to certain outcomes of certain infections. > Focusing on the immune system so much takes attention away from thebugs, when people actually need to be giving the bugs a lot MOREattention. Most people who go on and on about immune system theoryactually know very little about the adversaries they're trying tofight. That just seems illogical, and to be honest, downright idiotic.Well, it's true, immunologists tend to want to find some kind ofimmunopathy, and microbiologists look to see infection. Thetraditional boundaries of disciplines certainly are not a boon to deepthinking. Infection and immunity in particular deserve to be studiedtogether - they created each other and still are creating each other.A serious inquiry further

requires that they both together be put inevolutionary context. Personally I'm certain I'd rather err on theside of the big picture than make the opposite error.Now - I have seen *very* well respected people say that genetics *is*"the major" determinant of something like lupus. That pisses me offprobably just as much as it would you. As Ewald is always pointingout, we can all see very clearly that the identical twin concordancefor lupus is only about 35-45% (as I recall). So, looking at genes oneis AT MOST 35-45% "destined" to get lupus (and it could be a lot less,since those identical twins share environment as well as all theirgenes). Lupus must be at least 55-65% (but perhaps more)environmental/stochastic. Now, the people writing these hastysentences know that is the case. What they *really* mean is thatgenetics is the "the major" determinant of lupus *not counting theother 55-70%, because it must just be

stochastic, since no one canfigure out what it is.* Well, they don't know that! That is NOT afact! Or if they really believe current science is so wonderful thateverything it can't explain must just be stochastic, then they shouldexplain that quite clearly - rather than misleading the 90% of theirreaders who don't think very carefully about this.

[Guest guest]

One of the most bogus studies

out there regarding CFS, in my view, is the "twins study" that tries to

draw conclusions about CFS by starting from the misleading assumption

that identical twins completely eliminates genetic influences.

It's true that your friend and her twin sister have identical DNA but

that doesn't mean their genes will express the same. In the case of

your friend, I suspect the only reason she hasn't gone down the same

path as her sister is that she hasn't yet encountered the right

environmental trigger. That might be a particular infection combined

with the right kind of physical stressors, or a particular food or

additive, a particular toxin for a sufficiently sustained period of

time, etc.

To me, the problem with genetic research is not that it's looking at

the wrong thing, but that the field way under-estimates the complexity

of the problems they are tackling. The mentality seems to be that it's

possible to find one defective gene, enzyme or protein that corresponds

to one disease state. As if diseases were nice, cooperative little

guys with single causes. To continue with the example of your friend's

identical twin, the trigger may have been not only multi-factorial but

those multiple factors would have to happen in a certain way. Now that

she has the disease state, those factors may well no longer matter and

have been replaced by a completely different chaotic, complex system of

interweaved causes and effects that sustain the disease state.

Chronic illness is going to require a multi-disciplanary approach to

research, not people in their isolated silos and ivory towers wasting

energy debunking those with "competing" theories. I know a CFS

clinician who understands this well enough that, with the help of a

wealthy patient, is bringing together CFS researchers from all over the

world in a few weeks, to a retreat where they can get to know each

other and cross-pollinate. That's how progress is made with disease

states like this.

--Bob

Penny Houle wrote:

I'm not saying genetics doesn't have a lot to do with being

predisposed to certain illnesses. But it also doesn't mean that we

shouldn't realize that huge numbers of the human population is getting

more susceptible to infection as the bacteria become more resistant.

All it takes is being exposed at the right place and right time. It's

going to take a lot of major immune system tinkering to beat that.

I'm all for immunologists doing their research. I'm not

all for our community, let alone the medical community in

general, continuing to ignore the rapidly increasing problem of abx

resistant bacteria and their ravaging effects on people. You know, a

lot of microbiologists think doctors are pretty stupid when it comes to

this stuff and tolerate them only reluctantly, so I also think it would

be good for these two disciplines to get it together and start figuring

this stuff out for everyo ne's sake.

By the way. I have an identical twin living with me at the

moment. It's fascinating. In old pictures she and her sister look and

seem identical in every way except that my friend tells me her

sister has been very sick for a long time with CFS, FMS and Alkalysing

Spondolosis while my friend is not, Plus the twin is left handed and my

friend is right handed. The twin has zero artistic ability and my

friend is an artist. The twin had normal teeth and my friend had a

tooth grow through the roof of her mouth which was very painful.

Conversely, my friend suffered with Bipolar disorder when she was

younger, but the twin did not. My friend has been travelling the world

for years, and her twin has locked herself away in an apartment due to

her illness and doesn't see anyone anymore, not even her twin even

though they were practically glued at the hip for most of their lives,

attending all the same classrooms and events growing up. They did

everything together, played all the twin switcheroo pranks,

etc., until one sister got sick. They were inseperable until the

illness became too much for the twin which, to be honest, my friend

just couldn't understand. In fact, her entire family thought her

sister's illness was in her head. Only recently has my friend begun to

realize the suffering her twin has been going through for more than a

decade and why she's shut her family out for their lack of

understanding.

Now here's two people with identical dna, and yet their lives

have taken very different turns with one being quite ill and the other

very active and healthy. So how would it help to determine if

their dna might make them more prone to infection?

What would really help is figuring out how to fight off

the infection/bugs so the twin could resume a normal life like my

friend's.

penny

<usenethod > wrote:

> But it shouldn't be considered "underactive" if it's doing the best

any human immune system can do against a particularly resistant bug.

But who's to say that it is? More likely, IMO, that is far from true.

Part of the reason an organism (might have) gotten stuck with some

nonresolving infection could be stochastic - ie, it could easily have

gone otherwise but just didn't (for no single reason or few simple

reasons, just as a dice rolls a 2 one time and a 6 another time for no

simple reason).

But much of it could also very well be genetic. How would you know?

Well, look at twin concordances. Identical twins are very likely to be

concordant for things like TB and leprosy (concordant meaning, either

they both get it, or neither does; if only one gets it they are

discordant).

Of course, since TB is quite communicable and leprosy somewhat so,

it's hard to say whether one simply gave it to the other, or they both

got it from a third source. If so, one could explain the concordance

without recourse to genetic disposition.

Thus, it's hard to prove genetic predispositions to infectious disease

in an airtight way. I can't say that I definitely disagree with your

statement "because of A therefore B therefore C therefore D,

airtight." But I do think the balance of evidence suggests that

certain persons have a very significant disposition to certain

infections and/or to certain outcomes of certain infections.

> Focusing on the immune system so much takes attention away from the

bugs, when people actually need to be giving the bugs a lot MORE

attention. Most people who go on and on about immune system theory

actually know very little about the adversaries they're trying to

fight. That just seems illogical, and to be honest, downright idiotic.

Well, it's true, immunologists tend to want to find some kind of

immunopathy, and microbiologists look to see infection. The

traditional boundaries of disciplines certainly are not a boon to deep

thinking. Infection and immunity in particular deserve to be studied

together - they created each other and still are creating each other.

A serious inquiry further requires that they both together be put in

evolutionary context. Personally I'm certain I'd rather err on the

side of the big picture than make the opposite error.

Now - I have seen *very* well respected people say that genetics *is*

"the major" determinant of something like lupus. That pisses me off

probably just as much as it would you. As Ewald is always pointing

out, we can all see very clearly that the identical twin concordance

for lupus is only about 35-45% (as I recall). So, looking at genes one

is AT MOST 35-45% "destined" to get lupus (and it could be a lot less,

since those identical twins share environment as well as all their

genes). Lupus must be at least 55-65% (but perhaps more)

environmental/stochastic. Now, the people writing these hasty

sentences know that is the case. What they *really* mean is that

genetics is the "the major" determinant of lupus *not counting the

other 55-70%, because it must just be stochastic, since no one can

figure out what it is.* Well, they don't know that! That is NOT a

fact! Or if they really believe current science is so wonderful that

everything it can't explain must just be stochastic, then they should

explain that quite clearly - rather than misleading the 90% of their

readers who don't think very carefully about this.

[Guest guest]

It is not advertised publicly

so I only know what the organizer has told me in passing ... Cheney

will be among those expected to be present, along with , the

Japanese people who came up with the ciguaterra angle, as well as (IMO)

less savory people like Tietelbaum ... but it will be clinicians and

researchers who actually know what the heck CFS/ME is, which is a step

in the right direction.

--Bob

pjeanneus wrote:

I almost forgot - this is wonderful - a group of experts sharing.

But

I wonder how much money over the years the NIH has spent on so-

called "state of the science" meetings where MDs and scientists were

flown to Washington to discuss cfs - the one I attended in 2000 was a

gathering of about 20 docs who, with possibly 3 exceptions KNEW

NOTHING ABOUT CFS AND HAD ONLY READ THE WORK SENT THEM A COUPLE OF

DAYS BEFORE THE CONFERENCE. To my knowledge not even Cheney has

ever been included in such an NIH session. So I hope this

knowledgable group will put some pieces together. I have to wonder if

they included any Lyme specialists. Bob, do you know????

a Carnes

I know a CFS

> clinician who understands this well enough that, with the help of

a

> wealthy patient, is bringing together CFS researchers from all

over

the

> world in a few weeks, to a retreat where they can get to know each

other

> and cross-pollinate. That's how progress is made with disease

states

> like this.

>

> --Bob

[Guest guest]

I agree completely. This is why I get frustrated that our community focuses almost solely on immunology (which is not at all simple) while it completely ignores the bacterial side of of the problem. Even if we can figure out what causes our susceptibility, it's a long ways to figuring out how to overcome it. In the meantime, bugs are getting stronger, in large part due to our immense ineptitude and ignorance, and are having their way with us and our community doesn't know the first thing about addressing them. penny Bob Grommes <bob@...> wrote: One of the most bogus studies out there regarding CFS, in my view, is the "twins study" that tries to draw conclusions about CFS by starting from the misleading assumption that identical twins completely eliminates genetic influences.It's true that your friend and her twin sister have identical DNA but that doesn't mean their genes will express the same. In the case of your friend, I suspect the only reason she hasn't gone down the same path as her sister is that she hasn't yet encountered the right environmental trigger. That might be a particular infection combined with the right kind of physical stressors, or a particular food or additive, a particular toxin for a sufficiently sustained period of time, etc.To me, the problem with genetic

research is not that it's looking at the wrong thing, but that the field way under-estimates the complexity of the problems they are tackling. The mentality seems to be that it's possible to find one defective gene, enzyme or protein that corresponds to one disease state. As if diseases were nice, cooperative little guys with single causes. To continue with the example of your friend's identical twin, the trigger may have been not only multi-factorial but those multiple factors would have to happen in a certain way. Now that she has the disease state, those factors may well no longer matter and have been replaced by a completely different chaotic, complex system of interweaved causes and effects that sustain the disease state.Chronic illness is going to require a multi-disciplanary approach to research, not people in their isolated silos and ivory towers wasting energy debunking those with "competing" theories. I know a CFS clinician

who understands this well enough that, with the help of a wealthy patient, is bringing together CFS researchers from all over the world in a few weeks, to a retreat where they can get to know each other and cross-pollinate. That's how progress is made with disease states like this.--BobPenny Houle wrote: I'm not saying genetics doesn't have a lot to do with being predisposed to certain illnesses. But it also doesn't mean that we shouldn't realize that huge numbers of the human population is getting more susceptible to infection as the bacteria become more resistant. All it takes is being exposed at the right place and right time. It's going to take a lot of major immune system tinkering to beat that. I'm all for immunologists doing their research. I'm

not all for our community, let alone the medical community in general, continuing to ignore the rapidly increasing problem of abx resistant bacteria and their ravaging effects on people. You know, a lot of microbiologists think doctors are pretty stupid when it comes to this stuff and tolerate them only reluctantly, so I also think it would be good for these two disciplines to get it together and start figuring this stuff out for everyo ne's sake. By the way. I have an identical twin living with me at the moment. It's fascinating. In old pictures she and her sister look and seem identical in every way except that my friend tells me her sister has been very sick for a long time with CFS, FMS and Alkalysing Spondolosis while my friend is not, Plus the twin is left handed and my friend is right handed. The twin has zero artistic ability and my friend is an artist. The twin had normal teeth and my

friend had a tooth grow through the roof of her mouth which was very painful. Conversely, my friend suffered with Bipolar disorder when she was younger, but the twin did not. My friend has been travelling the world for years, and her twin has locked herself away in an apartment due to her illness and doesn't see anyone anymore, not even her twin even though they were practically glued at the hip for most of their lives, attending all the same classrooms and events growing up. They did everything together, played all the twin switcheroo pranks, etc., until one sister got sick. They were inseperable until the illness became too much for the twin which, to be honest, my friend just couldn't understand. In fact, her entire family thought her sister's illness was in her head. Only recently has my friend begun to realize the suffering her twin has been going through for more than a decade and why she's shut her

family out for their lack of understanding. Now here's two people with identical dna, and yet their lives have taken very different turns with one being quite ill and the other very active and healthy. So how would it help to determine if their dna might make them more prone to infection? What would really help is figuring out how to fight off the infection/bugs so the twin could resume a normal life like my friend's. penny <usenethod > wrote: > But it shouldn't be considered "underactive" if it's doing the bestany human immune system can do against a particularly

resistant bug. But who's to say that it is? More likely, IMO, that is far from true.Part of the reason an organism (might have) gotten stuck with somenonresolving infection could be stochastic - ie, it could easily havegone otherwise but just didn't (for no single reason or few simplereasons, just as a dice rolls a 2 one time and a 6 another time for nosimple reason). But much of it could also very well be genetic. How would you know?Well, look at twin concordances. Identical twins are very likely to beconcordant for things like TB and leprosy (concordant meaning, eitherthey both get it, or neither does; if only one gets it they arediscordant). Of course, since TB is quite communicable and leprosy somewhat so,it's hard to say whether one simply gave it to the other, or they bothgot it from a third source. If so, one could explain the concordancewithout recourse to genetic disposition. Thus,

it's hard to prove genetic predispositions to infectious diseasein an airtight way. I can't say that I definitely disagree with yourstatement "because of A therefore B therefore C therefore D,airtight." But I do think the balance of evidence suggests thatcertain persons have a very significant disposition to certaininfections and/or to certain outcomes of certain infections. > Focusing on the immune system so much takes attention away from thebugs, when people actually need to be giving the bugs a lot MOREattention. Most people who go on and on about immune system theoryactually know very little about the adversaries they're trying tofight. That just seems illogical, and to be honest, downright idiotic.Well, it's true, immunologists tend to want to find some kind ofimmunopathy, and microbiologists look to see infection. Thetraditional boundaries of disciplines certainly are not a boon to deepthinking.

Infection and immunity in particular deserve to be studiedtogether - they created each other and still are creating each other.A serious inquiry further requires that they both together be put inevolutionary context. Personally I'm certain I'd rather err on theside of the big picture than make the opposite error.Now - I have seen *very* well respected people say that genetics *is*"the major" determinant of something like lupus. That pisses me offprobably just as much as it would you. As Ewald is always pointingout, we can all see very clearly that the identical twin concordancefor lupus is only about 35-45% (as I recall). So, looking at genes oneis AT MOST 35-45% "destined" to get lupus (and it could be a lot less,since those identical twins share environment as well as all theirgenes). Lupus must be at least 55-65% (but perhaps more)environmental/stochastic. Now, the people writing these hastysentences know

that is the case. What they *really* mean is thatgenetics is the "the major" determinant of lupus *not counting theother 55-70%, because it must just be stochastic, since no one canfigure out what it is.* Well, they don't know that! That is NOT afact! Or if they really believe current science is so wonderful thateverything it can't explain must just be stochastic, then they shouldexplain that quite clearly - rather than misleading the 90% of theirreaders who don't think very carefully about this.

[Guest guest]

Teitelbaum being there is not exactly encouraging, IMO. Hope they include people like Shoemaker, Tarello and the Newcastle University researchers who believe staph/infection/mold is a problem. penny Bob Grommes <bob@...> wrote: It is not advertised publicly so I only know what the organizer has told me in passing ... Cheney will be among those expected to be present, along with

, the Japanese people who came up with the ciguaterra angle, as well as (IMO) less savory people like Tietelbaum ... but it will be clinicians and researchers who actually know what the heck CFS/ME is, which is a step in the right direction.--Bobpjeanneus wrote: I almost forgot - this is wonderful - a group of experts sharing. But I wonder how much money over the years the NIH has spent on so-called "state of the science" meetings where MDs and scientists were flown to Washington to discuss cfs - the one I attended in 2000 was a gathering of about 20 docs who, with possibly 3 exceptions KNEW NOTHING ABOUT CFS AND HAD ONLY READ THE WORK SENT THEM A COUPLE OF DAYS BEFORE THE CONFERENCE. To my knowledge not even Cheney has ever been included in such an NIH session. So I hope this knowledgable group

will put some pieces together. I have to wonder if they included any Lyme specialists. Bob, do you know????a CarnesI know a CFS > clinician who understands this well enough that, with the help of a > wealthy patient, is bringing together CFS researchers from all over the > world in a few weeks, to a retreat where they can get to know each other > and cross-pollinate. That's how progress is made with disease states > like this.> > --Bob

[Guest guest]

Yes, Schoemaker was invited

too. The organizers think the world of him. I think it is mostly a

good "A" list with a few dipwads thrown in ... even so I'm not holding

my breath looking for something revolutionary to instantly come out of

this. I'm just saying we need a lot more of this kind of thing.

--Bob

Penny Houle wrote:

Teitelbaum being there is not exactly encouraging, IMO.

Hope they include people like Shoemaker, Tarello and the

Newcastle University researchers who believe staph/infection/mold

is a problem.

penny

Bob Grommes <bobbobgrommes> wrote:

It is not advertised

publicly so I only know what the organizer has told me in passing ...

Cheney will be among those expected to be present, along with ,

the Japanese people who came up with the ciguaterra angle, as well as

(IMO) less savory people like Tietelbaum ... but it will be clinicians

and researchers who actually know what the heck CFS/ME is, which is a

step in the right direction.

--Bob

pjeanneus wrote:

I almost forgot - this is wonderful - a group of experts

sharing. But

I wonder how much money over the years the NIH has spent on so-

called "state of the science" meetings where MDs and scientists were

flown to Washington to discuss cfs - the one I attended in 2000 was a

gathering of about 20 docs who, with possibly 3 exceptions KNEW

NOTHING ABOUT CFS AND HAD ONLY READ THE WORK SENT THEM A COUPLE OF

DAYS BEFORE THE CONFERENCE. To my knowledge not even Cheney has

ever been included in such an NIH session. So I hope this

knowledgable group will put some pieces together. I have to wonder if

they included any Lyme specialists. Bob, do you know????

a Carnes

I know a CFS

> clinician who understands this well enough that, with the help of

a

> wealthy patient, is bringing together CFS researchers from all

over

the

> world in a few weeks, to a retreat where they can get to know each

other

> and cross-pollinate. That's how progress is made with disease

states

> like this.

>

> --Bob

[Guest guest]

I found his choice of book

title (From Fatigued to Fantastic) to be a built-in

non-starter. Even the name of the web site he hawks it from,

endfatigue.com, makes a big claim and shows he's targeting chronic

fatigue and not chronic fatigue syndrome. Or possibly that he

doesn't understand the difference.

He also has a distinct tendency towards treating CFS as an attitude

problem. For example he won't support people applying for disability

on the grounds that it will just encourage them to be sick. There are

a lot of good reasons why a doctor would decide not to involve

themselves in disability cases, but that's not one of them. As far as

I'm concerned he's an idiot .... even if he presents impressively on

stage.

Maybe he has grown up some ... it's been years since I put him on my

s-list. But I doubt it.

As for Cheney not claiming to have healed anyone ... that to me is

infinitely more credible than the inherent claim in From Fatigued

to Fantasitc. Cheney's biggest problem is that he likes to hear

himself talk at his patient's expense. But at least he respects his

patients, and when my wife was his patient he did come up with a couple

of mainstay treatments that helped a few percentage points for many

years, which is more than the others have managed to do.

(Hydroxycobalmin in fairly high doses and IM magnesium sulfate, if

anyone wonders).

I take no offense at your endorsement of Teitelbaum; your mileage may

vary from ours. But it will take a lot more than an impressive stage

presence to change my opinion of the man. I have little tolerance for

his brand of cluelessness.

Best,

--Bob

kdrbrill wrote:

I don't want to get in a catfight here, but I think Teitlebaum has

a better track record than

Cheney, who is treated like some sort of God. Don't get me wrong,

Cheney has been a

great advocate, a tireless researcher and has probably helped a lot of

people, but even he

admitted when asked how many folks he had "cured" -- he said "none".

I used to think T-baum was a slick salesman, just in it for the $$. But

then I heard him

speak here in Seattle, and came away with a totally different

impression. He has treated

patients longer than Cheney, he had CFS himself, was homeless for a

year, but eventually

recovered, etc., etc..

That is GREAT that someone is pulling together a group of the top docs/

researchers...hope to hear more about it in the coming weeks...

Dan

> >

> > I almost forgot - this is wonderful - a group of experts

sharing. But

> > I wonder how much money over the years the NIH has spent on

so-

> > called "state of the science" meetings where MDs and

scientists were

> > flown to Washington to discuss cfs - the one I attended in

2000 was a

> > gathering of about 20 docs who, with possibly 3 exceptions

KNEW

> > NOTHING ABOUT CFS AND HAD ONLY READ THE WORK SENT THEM A

COUPLE OF

> > DAYS BEFORE THE CONFERENCE. To my knowledge not even

Cheney has

> > ever been included in such an NIH session. So I hope this

> > knowledgable group will put some pieces together. I have to

wonder if

> > they included any Lyme specialists. Bob, do you know????

> >

> > a Carnes

> >

> > I know a CFS

> > > clinician who understands this well enough that, with

the help of a

> > > wealthy patient, is bringing together CFS researchers

from all over

> > the

> > > world in a few weeks, to a retreat where they can get to

know each

> > other

> > > and cross-pollinate. That's how progress is made with

disease

> > states

> > > like this.

> > >

> > > --Bob

> >

> >

>

[Guest guest]

That's interesting, I'd never heard that about Teitlebaum. I'm sure Cheney probably has good intentions as well, but I couldn't agree more that his "god-like" stature is overrated and is probably based more on his simple willingness to take us seriously more than anything else. I mean just having someone believe we're sick is big in our world, where most people treat us like lazy, neurotic losers instead of truly sick people. penny kdrbrill <kdrbrill@...> wrote: I don't want to get in a catfight here, but I think Teitlebaum has a better track record than Cheney, who is treated like some sort of God. Don't get me wrong, Cheney has been a great advocate, a tireless researcher and has probably helped a lot of people, but even he admitted when asked how many folks he had "cured" -- he said "none".I used to think T-baum was a slick salesman, just in it for the $$. But then I heard him speak here in Seattle, and came away with a totally different impression. He has treated patients longer than Cheney, he had CFS himself, was homeless for a year, but eventually recovered, etc., etc.. That is GREAT that someone is pulling together a group of the top docs/researchers...hope to hear more about it in the coming weeks...Dan> >> > I almost forgot - this is wonderful - a group of experts sharing. But> > I wonder how much money over the years the NIH has spent on so-> > called "state of the science" meetings where MDs and scientists were> > flown to Washington to discuss cfs - the one I

attended in 2000 was a> > gathering of about 20 docs who, with possibly 3 exceptions KNEW> > NOTHING ABOUT CFS AND HAD ONLY READ THE WORK SENT THEM A COUPLE OF> > DAYS BEFORE THE CONFERENCE. To my knowledge not even Cheney has> > ever been included in such an NIH session. So I hope this> > knowledgable group will put some pieces together. I have to wonder if> > they included any Lyme specialists. Bob, do you know????> >> > a Carnes> >> > I know a CFS> > > clinician who understands this well enough that, with the help of a> > > wealthy patient, is bringing together CFS researchers from all over> > the> > > world in a few weeks, to a retreat where they can get to know each> > other> > > and cross-pollinate. That's how progress is made with disease> > states> > > like

this.> > >> > > --Bob> >> >>