Re: the most promising direction for research?

[Guest guest]

My 2 cents below:

Ken Lassesen

----- Original Message -----

From: patrickmm4@...

1). Do you see the disease being taken more seriously

with more research and more discussion in the medical community as time goes

by, compared to say 10 years ago or even 5 years ago?

******** Barely, CDC and NIH are " appearing " to be taking it more seriously

for reasons of " political heat " , the " establishment " appears unchanged. GWI and

Nicolson is the one significant improvement in attitude (being done at VA

hospitals)

and 2.) Out of all the different areas people seem to be looking, such as

Cheney, , Lapp, , Brewer, Knox, Carrigan, all of them, WHAT DO

YOU THINK is the most promising direction for CFS research?

* Berg - mainly because of his coagulation PLUS attacking infection, everyone

else in the US research area appears to be MONO-TREATMENT/Cause focused.

Do you see it headed in a specific direction that we are only beginning to

grasp that may

lead to fundamental breakthrough in understanding the illness, or do you

think it will continue to be this " shooting a million bullets into the dark "

kind of activity?

* I believe the " breakthru " has happened via Jadin etc. The problem is

acceptance. Using antibiotics for stomach ulcers was done in some hosiptals in

the 1940's and then this clinical approach was lost and some 40 years later it

was " acceptably rediscovered " . The key to Jadin's protocol is two things:

rotating antibiotics (and most CFIDs patients have trouble getting even ONE

antibiotic for a month) and treating the vascoconstriction aspects --- gee

whiz... this is so similar to Berg's current approach ... and worst still, both

are claiming 85-95% recovery rates.... and yet both appear to have been working

in total independence from each other.... hmmm....

Just curious what your thoughts are.

" Do me a favor, Doc. Tell me something good. "

- Ellen Burstyn in The Exorcist

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[Guest guest]

on 7/9/00 6:59 PM, Ken Lassesen at KenL@... wrote:

> * I believe the " breakthru " has happened via Jadin etc. The problem is

> acceptance. Using antibiotics for stomach ulcers was done in some hosiptals

> in the 1940's and then this clinical approach was lost and some 40 years later

> it was " acceptably rediscovered " .

Interesting that you mention the stomach ulcer issue, Ken. When I recently

informed my doctor that some researchers believe that CFS is rooted in

rickettsial infections, I got a surprising response.

He developed a kind of cautious tone, which made me think he was going to

'gently dismiss' my suggestion, and then said:

" It's important to keep an open mind in medicine because...I've

probably told you this story before, Hud, but when Dr. X (I can't remember

who) first stood up at a medical conference in the [mid 90's?] and expressed

his belief that stomach ulcers were caused by H. pylori, he was laughed off

the stage... Then about a year later, he returned to the conference and

completely supported his belief with evidence... Now it is widely accepted

that H. pylori is a major cause of stomach ulcers. "

In short, my doc could also see the possibility that CFS is rooted in

something entirely unexpected. I like this doc a lot. He is truly open

minded and willing to let me largely direct the direction of my treatment.

Hud

[Guest guest]

> My 2 cents below:

> Ken Lassesen

>

> ----- Original Message -----

> From: patrickmm4@a...

> and 2.) Out of all the different areas people seem to be looking,

such as

> Cheney, , Lapp, , Brewer, Knox, Carrigan, all of

them, WHAT DO

> YOU THINK is the most promising direction for CFS research?

> * Berg - mainly because of his coagulation PLUS attacking

infection, everyone else in the US research area appears to be MONO-

TREATMENT/Cause focused.

Oooops! No disrespect, Ken, but Dr. Cheney says as far back as

Osler's Web that this disease does not fit the traditional model of

western reductionism. And he treats his patients aggressively, using

a multi-treatment plan that is specific to the needs of the

individual patient. I agree with you that Berg is a good choice for

CFS research, but Cheney's a heck of a good doctor with a heck of a

good perspective, too!!

Take care,

Sheri

[Guest guest]

Agreed completely - but I would not class him as a regular (funded by others OR

publishes papers regularly ) researcher - he is a clinical MD -- I had excluded

him before answering this question.

Good point that needed a bit of clarification!

Ken Lassesen

2 @ 2 ft PWC, 2 @ 4ft PWC

2 ft PWC: http://www.folkarts.com/idef/

4 ft PWC: http://corgi.folkarts.com/

Fax: (520) 832-6836 ICQ #: 2122097 (also Netmeeting with Video)

----- Original Message -----

From: Sheri

Oooops! No disrespect, Ken, but Dr. Cheney says as far back as

Osler's Web that this disease does not fit the traditional model of

western reductionism. And he treats his patients aggressively, using

a multi-treatment plan that is specific to the needs of the

individual patient. I agree with you that Berg is a good choice for

CFS research, but Cheney's a heck of a good doctor with a heck of a

good perspective, too!!

Take care,

Sheri

[Guest guest]

<<< My first question is 1). Do you see the disease being taken more

seriously with more research and more discussion in the medical

community as time goes by, compared to say 10 years ago or even 5 years

ago? >>>

no

<<< and 2.) Out of all the different areas people seem to be looking,

such as Cheney, , Lapp, , Brewer, Knox, Carrigan, all of

them, WHAT DO YOU THINK is the most promising direction for CFS

research? Do you see it headed in a specific direction that we are only

beginning to grasp that may lead to fundamental breakthrough in >>>

hhv6, and yes, as soon as carrigan & knox can get some decent funding.

<<< " Do me a favor, Doc. Tell me something good. "

- Ellen Burstyn in The Exorcist >>>

and i like your quote, too :-)

~~~~~~~~~~~~~~~~~~~~~~~~~

" Would they have found nothing, unless nothing was what they wanted to

find? " - Agent Dales, X-Files

@}{~{<<~~~~~~~~~~~~~~~~~~~~

@}{~{<<~~~~~~~~~~~~~~~~~~~~

debbie s. - dlsherman@...

[Guest guest]

Debbie,

<< hhv6, and yes, as soon as carrigan & knox can get some decent funding.

<<< " Do me a favor, Doc. Tell me something good. "

- Ellen Burstyn in The Exorcist >>>

and i like your quote, too :-) >>

LOL, thanks Debbie. I am a sci-fi / horror fan. The Exorcist is actually a

pretty amazing film, from a filmmaking standpoint (as horrific as it is). I

was watching a remastered version that came out last year with some friends

and when it got to a scene where Ellen Burstyn is talking to the doctor about

her daughter (who is possessed by the demon but no one knows that yet), she

says that, " do me a favor, tell me something good. " My friend said " ,

that sounds like YOU in YOUR doctors office! " . I got to thinking how much our

experience as CFS patients resembles that of the protagonist of this fine

horror classic; The doctors are clueless, can't tell whats wrong, they think

she's just crazy (all in your head) but really there's something much more

sinister going on.

If only we could cure ourselves with some holy water and a prayer!

(sorry for the OT - couldnt resist!)

[Guest guest]

Any one tried Whey (IP) in Holy Water? (The double blessed drink?)

Ken Lassesen

(Also couldn't resist)

Fax: (520) 832-6836 ICQ #: 2122097 (also Netmeeting with Video)

----- Original Message -----

From: patrickmm4@...

If only we could cure ourselves with some holy water and a prayer!

(sorry for the OT - couldnt resist!)

[Guest guest]

Know for a fact, Not all holy water is safe to drink....

just in case anyone's taking this serious.

Ruth