Re: Re: News segment on the Whittemore Institute

[Guest guest]

Hear, Hear !!!!!!!!!!!!!!

Re: News segment on the Whittemore Institute

>I must confess that I still sit around shaking my head. They think

> they might find a new viral cause. They think cfs is caused by a

> virus. BUT THEY TAKE EVERY PATIENT WHO TESTS POSITIVE FOR BORRELIA

> AND REMOVE THEM FROM ANY STUDY OF CFS SAYING THEY DON'T HAVE CFS,

> THEY NOW HAVE LYME????? Am I the only one who thinks this is assinine?

>

> I know, I know, we don't know how all the viruses and bacteria

> interact to destroy the immune and endocrine system, but still, how

> can you just arbitrarily take borrelia off the table?

>

> I do not think these people are smart, and I cannot respect their

> work. They are getting funding to study viruses and definitions of

> cfs symptoms. That's just the old " look for what you can't find under

> the lamppost. Never mind that you lost it in the dark alley. "

>

> a Carnes

>

> ------------------------------------

>

> This list is intended for patients to share personal experiences with each

> other, not to give medical advice. If you are interested in any treatment

> discussed here, please consult your doctor.

[Guest guest]

No one's listening to mold warrior.

My understanding is that Cheney has long given up the belief that the initial

trigger, whether its a virus or whatever, is important. A good portion of the

Incline Village subset had a gradual onset as well. The physicians there found

no reason to differentiate the infectious onset and gradual onset patients. If

that was an important factor in Cheney's treatment we would have seen it in his

protocols; ie separate protocols for each group.

It's also not true that most of the Incline Village patients died or remained

severely ill. Check out the end of Osler's Web; some remained very ill but a

surprising number improved substantially. A follow up study found the same thing

- that most had improved greatly. It actually sounded like many had recovered -

which brings up the question whether there are two types of illness; a

post-viral fatigue illness - that is EASIER to recover from than CFS and CFS.

One study suggested this was true.

(Check out the overview of Symposium on Viruses in CFS)

I believe the WPI is taking a very open ended look at pathogens: my

understanding is that they trying to check for every pathogen in existence using

their gene expression (or whatever) tests. This means they are not ignoring Lyme

disease. If it shows up in large quantities then it does, if it doesn't it

doesn't. I'm sure there are people with Lyme in this disease or enterovirus or

HHV6; lots of different subsets. The lucky ones have a primary infection that

can be treated and the unlucky ones have a co morbid secondary infection that

can be suppressed and something else wrong that cannot at this time be

successfully treated.

Good luck with the surgery!

Cort

> From: pjeanneus <pj7@...>

> Subject: Re: News segment on the Whittemore Institute

>

> Date: Tuesday, December 16, 2008, 9:35 PM

> >

> > Hi, a.

> >

> > In defense of Judy Mikowitz (who, by the way, is VERY

> smart) and the

> > group at the Whittemore- Institute, I suspect

> that they are

> > studying samples from the original Incline Village

> outbreak that Dr.

> > has kept frozen for 20+ years, and I

> don't have trouble

> > believing that this outbreak might have been caused by

> a very

> virulent

> > virus. I think Dr. believes this, and I know

> for a fact

> that

> > Dr. Cheney does.

>

> *****Rich, there is a kind of intelligence that will win a

> chess

> game. It is not the kind that gets excited about every pawn

> on the

> board. It looks at how various pieces of the game interact.

> Was there

> a virus that went through the school at Incline Village?

> Was there

> toxic mold in the building? What about exposure to

> mycoplasma?

> Certainly tick borne pathogens could play a role in

> northern

> California. What genetically was true of the folks in the

> building

> who never got sick? (Is anyone listening to Mold

> Warrior?)

>

>

> >

> > As you know, I have suggested that genetic

> predisposition is an

> > important factor in the sporadic cases of CFS, but I

> have been

> careful

> > to say that I think the genetic factor is less

> important in the

> > epidemics or clusters, because so many people in one

> place were

> > involved during the same limited period of time,

> suggesting that

> their

> > genetic makeup may not have been very important in

> determining

> whether

> > they " caught " it.

>

> *****I don't think there is a case of cfs that

> isn't an epidemic. My

> small town in South Carolina had over 100 folks with

> fibromyalgia

> around 1997. This was unheard of in the 50s and 60s. These

> people

> were sick with something. Most of them worked in gardens

> and fished

> at the river on weekends. We all got tick bites. We also

> worked in

> toxic buildings with air conditioning and locked windows.

> >

> > The CFS population as currently defined is very

> heterogeneous.

> Let's

> > give this group credit for studying at least one

> subset, and

> actually

> > the original subset that brought the CDC into the

> picture and at

> least

> > led to a case definition and some recognition for the

> disorder, even

> > though the definition is not very precise, and even

> though they

> > probably should have taken a closer look to see if

> they were

> actually

> > dealing with ME in Incline Village. I believe in the

> divide and

> > conquer approach to the CFS subsets, because I think

> it is the only

> way

> > we are going to succeed, and this group seems to be

> taking that

> > approach.

>

> *****Most of the subset you say they are studying are still

> sick or

> have died. I think you should ask if any of them are

> still being

> studied. Also, what will they test for in the blood

> samples. I have

> been tested for every commonly tested virus and bacteria

> there is -

> but that didn't even include bartonella, babesia or

> borrelia except

> for a western blot without including all the bands, so

> negative. But

> I have several positive bands at IgeneX and positive urine

> antigen

> with a positive reverse western blot on that.

>

> Cheney is in North Carolina. He took no interest in my case

> - none

> when I already had a postive PCR for mycoplasma and

> evidence of white

> blood cell infection under microscopy. I am sorry, but that

> is not

> science or smart. He wasn't treating Incline Village.

> He was treating

> patients in North and South Carolina. I was the only

> patient in the

> Charlotte, NC support group who recovered at all. I have to

> add that

> I am not fully recovered and have been severely harmed by

> quinolone

> antibiotics, so I am not about to claim that there is some

> magic fix

> for borrelia infection or c. pneumonia or HHV6 etc. I am

> claiming

> that ignoring bacterial infections and claiming you have

> adequate

> tests to diagnose such is ignorance of the worst sort.

> >

> > I don't disagree that more attention is needed to

> the connection

> > between Lyme disease and CFS, and in fact, as you

> know, I'm

> planning to

> > present a poster paper on a possible link at the March

> 2009 IACFS/ME

> > conference in Reno, which has been accepted.

>

> *****Yes, bless your heart, I am so pleased that you

> include this. I

> also am turning increasingly toward your study indicating a

> need to

> treat the damaged immune and endocrine system of folks like

> myself

> using your approach. I'm trying some of your approach

> and hope to

> post more on how I am doing soon. I'm being treated by

> a doctor in

> California who is using a lot of your information.

>

> Right now I am focused on cataract surgery tomorrow and

> will be able

> to focus on more cfs details later.

>

> a Carnes

> >

> > Best regards,

> >

> > Rich

> >

[Guest guest]

Some sort of immune deficit and/or metabolic deficit (Rich)and/or endocrine

deficit and/or nervous system deficit, etc. that allows these pathogens to

flourish makes the most sense to me.

I think, as many people has said, that the infection or accident or stress or

whatever is just something that triggers the aberrant state of functioning we

CFS. How else to explain large numbers of people who started out differently

(different virus, bacteria, etc.) and ended up with very similar appearing

diseases.

> From: kattemayo <kattemayo@...>

> Subject: Re: News segment on the Whittemore Institute

>

> Date: Wednesday, December 17, 2008, 10:14 AM

> Dr. Cheney, told me he spent many years of his CFS career

> " chasing bugs " .

>

> And, treating bugs. Even when clearing some of " the

> bugs " , the disease remained.

>

> In the case of antibiotics, many of us can barely tolerate

> them or a limited number of them.

>

> (This is pretty scary, when after many years ill, one has

> significant Cardiac abnormalities, and gets an antibiotic

> resistent Pneumonia, with an ever shortening list of abx to

> try).

>

> He has also said why make his patients " gut

> cripples " w/antibiotics, when they do not cure their

> CFS?

>

> He still believes there was a viral onset, but he told me

> in 2005/6, he had stopped chasing bugs, and was focusing on

> " the terrain " . If that is understood and

> corrected, the bugs will go, too, by the body's natural

> processes.

> { Scientists already have long debated the " bugs vs.

> terrain " question}.

>

> But, he still prescribed anti-virals, antibiotics,

> anti-fungals, as deemed appropriate.

>

> I believe he revisits the viral issue as more Science and

> more antiviral treatment and data emerges. (Current times

> would seem to be an example).

>

> Katrina

>

>

>

> >

> > > From: pjeanneus <pj7@...>

> > > Subject: Re: News segment on

> the Whittemore Institute

> > >

> > > Date: Tuesday, December 16, 2008, 9:35 PM

> > > >

> > > > Hi, a.

> > > >

> > > > In defense of Judy Mikowitz (who, by the

> way, is VERY

> > > smart) and the

> > > > group at the Whittemore- Institute,

> I suspect

> > > that they are

> > > > studying samples from the original Incline

> Village

> > > outbreak that Dr.

> > > > has kept frozen for 20+ years, and

> I

> > > don't have trouble

> > > > believing that this outbreak might have been

> caused by

> > > a very

> > > virulent

> > > > virus. I think Dr. believes this,

> and I know

> > > for a fact

> > > that

> > > > Dr. Cheney does.

> > >

> > > *****Rich, there is a kind of intelligence that

> will win a

> > > chess

> > > game. It is not the kind that gets excited about

> every pawn

> > > on the

> > > board. It looks at how various pieces of the game

> interact.

> > > Was there

> > > a virus that went through the school at Incline

> Village?

> > > Was there

> > > toxic mold in the building? What about exposure

> to

> > > mycoplasma?

> > > Certainly tick borne pathogens could play a role

> in

> > > northern

> > > California. What genetically was true of the

> folks in the

> > > building

> > > who never got sick? (Is anyone listening to

> Mold

> > > Warrior?)

> > >

> > >

> > > >

> > > > As you know, I have suggested that genetic

> > > predisposition is an

> > > > important factor in the sporadic cases of

> CFS, but I

> > > have been

> > > careful

> > > > to say that I think the genetic factor is

> less

> > > important in the

> > > > epidemics or clusters, because so many

> people in one

> > > place were

> > > > involved during the same limited period of

> time,

> > > suggesting that

> > > their

> > > > genetic makeup may not have been very

> important in

> > > determining

> > > whether

> > > > they " caught " it.

> > >

> > > *****I don't think there is a case of cfs

> that

> > > isn't an epidemic. My

> > > small town in South Carolina had over 100 folks

> with

> > > fibromyalgia

> > > around 1997. This was unheard of in the 50s and

> 60s. These

> > > people

> > > were sick with something. Most of them worked in

> gardens

> > > and fished

> > > at the river on weekends. We all got tick bites.

> We also

> > > worked in

> > > toxic buildings with air conditioning and locked

> windows.

> > > >

> > > > The CFS population as currently defined is

> very

> > > heterogeneous.

> > > Let's

> > > > give this group credit for studying at least

> one

> > > subset, and

> > > actually

> > > > the original subset that brought the CDC

> into the

> > > picture and at

> > > least

> > > > led to a case definition and some

> recognition for the

> > > disorder, even

> > > > though the definition is not very precise,

> and even

> > > though they

> > > > probably should have taken a closer look to

> see if

> > > they were

> > > actually

> > > > dealing with ME in Incline Village. I

> believe in the

> > > divide and

> > > > conquer approach to the CFS subsets, because

> I think

> > > it is the only

> > > way

> > > > we are going to succeed, and this group

> seems to be

> > > taking that

> > > > approach.

> > >

> > > *****Most of the subset you say they are studying

> are still

> > > sick or

> > > have died. I think you should ask if any of

> them are

> > > still being

> > > studied. Also, what will they test for in the

> blood

> > > samples. I have

> > > been tested for every commonly tested virus and

> bacteria

> > > there is -

> > > but that didn't even include bartonella,

> babesia or

> > > borrelia except

> > > for a western blot without including all the

> bands, so

> > > negative. But

> > > I have several positive bands at IgeneX and

> positive urine

> > > antigen

> > > with a positive reverse western blot on that.

> > >

> > > Cheney is in North Carolina. He took no interest

> in my case

> > > - none

> > > when I already had a postive PCR for mycoplasma

> and

> > > evidence of white

> > > blood cell infection under microscopy. I am

> sorry, but that

> > > is not

> > > science or smart. He wasn't treating Incline

> Village.

> > > He was treating

> > > patients in North and South Carolina. I was the

> only

> > > patient in the

> > > Charlotte, NC support group who recovered at all.

> I have to

> > > add that

> > > I am not fully recovered and have been severely

> harmed by

> > > quinolone

> > > antibiotics, so I am not about to claim that

> there is some

> > > magic fix

> > > for borrelia infection or c. pneumonia or HHV6

> etc. I am

> > > claiming

> > > that ignoring bacterial infections and claiming

> you have

> > > adequate

> > > tests to diagnose such is ignorance of the worst

> sort.

> > > >

> > > > I don't disagree that more attention is

> needed to

> > > the connection

> > > > between Lyme disease and CFS, and in fact,

> as you

> > > know, I'm

> > > planning to

> > > > present a poster paper on a possible link at

> the March

> > > 2009 IACFS/ME

> > > > conference in Reno, which has been accepted.

> > >

> > > *****Yes, bless your heart, I am so pleased that

> you

> > > include this. I

> > > also am turning increasingly toward your study

> indicating a

> > > need to

> > > treat the damaged immune and endocrine system of

> folks like

> > > myself

> > > using your approach. I'm trying some of your

> approach

> > > and hope to

> > > post more on how I am doing soon. I'm being

> treated by

> > > a doctor in

> > > California who is using a lot of your

> information.

> > >

> > > Right now I am focused on cataract surgery

> tomorrow and

> > > will be able

> > > to focus on more cfs details later.

> > >

> > > a Carnes

> > > >

> > > > Best regards,

> > > >

> > > > Rich

> > > >

> >

[Guest guest]

I didn't know and I haven't heard that they're doing that but consider this;

they are focused on CFS are they not? If they were finding alot of Lyme in their

patients they'd wouldn't have much of a patient base yet - if they're doing

whats been suggested THAT suggests to me that they're not finding many people

who have CFS and Lyme (???)

\

[Guest guest]

Dear Cort and all

If you have more perseverance than me, look at

http://www.theage.com.au/national/blame-your-genes-for-lengthy-illness-20081130-\

6noq.html

And then follow up on the spin-offs from the Dubbo Study by searching PubMed

for the author, Ute Vollmer-Conna. Most of the Dubbo papers will come up.

As I see it, genetic susceptibility is most important, Pasteur was right,

" the microbe is nothing, the terrain is everything " .

R

[Moderator: Dave Berg[Hemex] would agree completely --- 80+% of those tested had

genetic coagulation defects... that is why I never say that I am cure, I am in

long term remission and intending to stay so; but this means that I need to keep

in the zone]

Re: Re: News segment on the Whittemore

Institute

> No one's listening to mold warrior.

>

> My understanding is that Cheney has long given up the belief that the

> initial trigger, whether its a virus or whatever, is important. A

[Guest guest]

a, Has Dr. tested you for lyme? Do you know what tests he

uses for lyme?

Gail

{Moderator: Trimmed post. Gentle reminder to everyone, please trim posts when

possible.

}

pjeanneus wrote:

>

> Hi Cort,

> Okay, how about I write that no one at Incline Village completely

> recovered?

>

> Since I have been in the Lyme community for a few years I have to say

> that I haven't seen anyone there completely recover either. My

> husband and one son are doing well, but they still have symptoms at

> times. Antibiotics are not the magic fix, but neither is it wise to

> not use antibiotics at all.

>

> As to rapid or slow onset, I tend to think this is a product of genes

> and general health. The doctor thinks my son has had borrelia since

> birth, but he is very healthy and young, so he may be able to

> withstand the chronic infection. Some of the top Lyme specialists say

> that a rapid onset is the tick that broke the camel's back - the last

> tick bite you got finally pushed you under. I am sure this is true in

> my case. (a combo of many tick bites,mycoplasmas, viruses and a toxic

> building)

>

> As to the studies testing patients for Lyme - the reality is that

> there aren't good tests for borrelia or babesia. IgeneX is the best

> using western blots and reporting on all the bands. Then a reverse

> western blot on any positive urine antigen samples. Dr. is

> not doing that.

[Guest guest]

That may be - but I explicitly asked several times and gave him the

opportunity several times to post his 'technique' on determining if one has mold

sensitivity on my website. After all if he does have something going - as he

says he does - then it would be a real opportunity to help out - but he blew

me off every time. My conclusion was that he doesn't have a viable technique.

In any case I didn't mean to leave that statement on my message. I thought it

was a bit too much and I know he participates on other allergy groups. I don't

believe hes a typical case. I know I have mold problems but I don't have an

extreme sensitivity to a single mold like he does.

> From: khalyal <khalyal@...>

> Subject: Re: News segment on the Whittemore Institute

>

> Date: Thursday, December 18, 2008, 9:31 AM

> Cort said "

> > No one's listening to mold warrior. "

>

> That's not exactly true. There is a band of

> second-battalion mold

> warriors who are actually doing quite well by following

> 's

> mold-avoidance techniques, myself included.

>

> K

>

>

> >

> > > From: pjeanneus <pj7@...>

> > > Subject: Re: News segment on

> the Whittemore

> Institute

> > >

> > > Date: Tuesday, December 16, 2008, 9:35 PM

> > > >

> > > > Hi, a.

> > > >

> > > > In defense of Judy Mikowitz (who, by the

> way, is VERY

> > > smart) and the

> > > > group at the Whittemore- Institute,

> I suspect

> > > that they are

> > > > studying samples from the original Incline

> Village

> > > outbreak that Dr.

> > > > has kept frozen for 20+ years, and

> I

> > > don't have trouble

> > > > believing that this outbreak might have been

> caused by

> > > a very

> > > virulent

> > > > virus. I think Dr. believes this,

> and I know

> > > for a fact

> > > that

> > > > Dr. Cheney does.

> > >

> > > *****Rich, there is a kind of intelligence that

> will win a

> > > chess

> > > game. It is not the kind that gets excited about

> every pawn

> > > on the

> > > board. It looks at how various pieces of the game

> interact.

> > > Was there

> > > a virus that went through the school at Incline

> Village?

> > > Was there

> > > toxic mold in the building? What about exposure

> to

> > > mycoplasma?

> > > Certainly tick borne pathogens could play a role

> in

> > > northern

> > > California. What genetically was true of the

> folks in the

> > > building

> > > who never got sick? (Is anyone listening to

> Mold

> > > Warrior?)

> > >

> > >

> > > >

> > > > As you know, I have suggested that genetic

> > > predisposition is an

> > > > important factor in the sporadic cases of

> CFS, but I

> > > have been

> > > careful

> > > > to say that I think the genetic factor is

> less

> > > important in the

> > > > epidemics or clusters, because so many

> people in one

> > > place were

> > > > involved during the same limited period of

> time,

> > > suggesting that

> > > their

> > > > genetic makeup may not have been very

> important in

> > > determining

> > > whether

> > > > they " caught " it.

> > >

> > > *****I don't think there is a case of cfs

> that

> > > isn't an epidemic. My

> > > small town in South Carolina had over 100 folks

> with

> > > fibromyalgia

> > > around 1997. This was unheard of in the 50s and

> 60s. These

> > > people

> > > were sick with something. Most of them worked in

> gardens

> > > and fished

> > > at the river on weekends. We all got tick bites.

> We also

> > > worked in

> > > toxic buildings with air conditioning and locked

> windows.

> > > >

> > > > The CFS population as currently defined is

> very

> > > heterogeneous.

> > > Let's

> > > > give this group credit for studying at least

> one

> > > subset, and

> > > actually

> > > > the original subset that brought the CDC

> into the

> > > picture and at

> > > least

> > > > led to a case definition and some

> recognition for the

> > > disorder, even

> > > > though the definition is not very precise,

> and even

> > > though they

> > > > probably should have taken a closer look to

> see if

> > > they were

> > > actually

> > > > dealing with ME in Incline Village. I

> believe in the

> > > divide and

> > > > conquer approach to the CFS subsets, because

> I think

> > > it is the only

> > > way

> > > > we are going to succeed, and this group

> seems to be

> > > taking that

> > > > approach.

> > >

> > > *****Most of the subset you say they are studying

> are still

> > > sick or

> > > have died. I think you should ask if any of

> them are

> > > still being

> > > studied. Also, what will they test for in the

> blood

> > > samples. I have

> > > been tested for every commonly tested virus and

> bacteria

> > > there is -

> > > but that didn't even include bartonella,

> babesia or

> > > borrelia except

> > > for a western blot without including all the

> bands, so

> > > negative. But

> > > I have several positive bands at IgeneX and

> positive urine

> > > antigen

> > > with a positive reverse western blot on that.

> > >

> > > Cheney is in North Carolina. He took no interest

> in my case

> > > - none

> > > when I already had a postive PCR for mycoplasma

> and

> > > evidence of white

> > > blood cell infection under microscopy. I am

> sorry, but that

> > > is not

> > > science or smart. He wasn't treating Incline

> Village.

> > > He was treating

> > > patients in North and South Carolina. I was the

> only

> > > patient in the

> > > Charlotte, NC support group who recovered at all.

> I have to

> > > add that

> > > I am not fully recovered and have been severely

> harmed by

> > > quinolone

> > > antibiotics, so I am not about to claim that

> there is some

> > > magic fix

> > > for borrelia infection or c. pneumonia or HHV6

> etc. I am

> > > claiming

> > > that ignoring bacterial infections and claiming

> you have

> > > adequate

> > > tests to diagnose such is ignorance of the worst

> sort.

> > > >

> > > > I don't disagree that more attention is

> needed to

> > > the connection

> > > > between Lyme disease and CFS, and in fact,

> as you

> > > know, I'm

> > > planning to

> > > > present a poster paper on a possible link at

> the March

> > > 2009 IACFS/ME

> > > > conference in Reno, which has been accepted.

> > >

> > > *****Yes, bless your heart, I am so pleased that

> you

> > > include this. I

> > > also am turning increasingly toward your study

> indicating a

> > > need to

> > > treat the damaged immune and endocrine system of

> folks like

> > > myself

> > > using your approach. I'm trying some of your

> approach

> > > and hope to

> > > post more on how I am doing soon. I'm being

> treated by

> > > a doctor in

> > > California who is using a lot of your

> information.

> > >

> > > Right now I am focused on cataract surgery

> tomorrow and

> > > will be able

> > > to focus on more cfs details later.

> > >

> > > a Carnes

> > > >

> > > > Best regards,

> > > >

> > > > Rich

> > > >

> >

[Guest guest]

I'll bet thats probably true. I'll bet a pathogen did float through Incline -

but I'll bet the publicity also brought alot of people who'd been suffering

already. So you had alot of people suffering in relative silence plus whatever

the pathogen brought in - and you have Incline.

> >

> > > From: pjeanneus <pj7@...>

> > > Subject: Re: News segment on

> the Whittemore

> Institute

> > >

> > > Date: Tuesday, December 16, 2008, 9:35 PM

> > > >

> > > > Hi, a.

> > > >

> > > > In defense of Judy Mikowitz (who, by the

> way, is VERY

> > > smart) and the

> > > > group at the Whittemore- Institute,

> I suspect

> > > that they are

> > > > studying samples from the original Incline

> Village

> > > outbreak that Dr.

> > > > has kept frozen for 20+ years, and

> I

> > > don't have trouble

> > > > believing that this outbreak might have been

> caused by

> > > a very

> > > virulent

> > > > virus. I think Dr. believes this,

> and I know

> > > for a fact

> > > that

> > > > Dr. Cheney does.

> > >

> > > *****Rich, there is a kind of intelligence that

> will win a

> > > chess

> > > game. It is not the kind that gets excited about

> every pawn

> > > on the

> > > board. It looks at how various pieces of the game

> interact.

> > > Was there

> > > a virus that went through the school at Incline

> Village?

> > > Was there

> > > toxic mold in the building? What about exposure

> to

> > > mycoplasma?

> > > Certainly tick borne pathogens could play a role

> in

> > > northern

> > > California. What genetically was true of the

> folks in the

> > > building

> > > who never got sick? (Is anyone listening to

> Mold

> > > Warrior?)

> > >

> > >

> > > >

> > > > As you know, I have suggested that genetic

> > > predisposition is an

> > > > important factor in the sporadic cases of

> CFS, but I

> > > have been

> > > careful

> > > > to say that I think the genetic factor is

> less

> > > important in the

> > > > epidemics or clusters, because so many

> people in one

> > > place were

> > > > involved during the same limited period of

> time,

> > > suggesting that

> > > their

> > > > genetic makeup may not have been very

> important in

> > > determining

> > > whether

> > > > they " caught " it.

> > >

> > > *****I don't think there is a case of cfs

> that

> > > isn't an epidemic. My

> > > small town in South Carolina had over 100 folks

> with

> > > fibromyalgia

> > > around 1997. This was unheard of in the 50s and

> 60s. These

> > > people

> > > were sick with something. Most of them worked in

> gardens

> > > and fished

> > > at the river on weekends. We all got tick bites.

> We also

> > > worked in

> > > toxic buildings with air conditioning and locked

> windows.

> > > >

> > > > The CFS population as currently defined is

> very

> > > heterogeneous.

> > > Let's

> > > > give this group credit for studying at least

> one

> > > subset, and

> > > actually

> > > > the original subset that brought the CDC

> into the

> > > picture and at

> > > least

> > > > led to a case definition and some

> recognition for the

> > > disorder, even

> > > > though the definition is not very precise,

> and even

> > > though they

> > > > probably should have taken a closer look to

> see if

> > > they were

> > > actually

> > > > dealing with ME in Incline Village. I

> believe in the

> > > divide and

> > > > conquer approach to the CFS subsets, because

> I think

> > > it is the only

> > > way

> > > > we are going to succeed, and this group

> seems to be

> > > taking that

> > > > approach.

> > >

> > > *****Most of the subset you say they are studying

> are still

> > > sick or

> > > have died. I think you should ask if any of

> them are

> > > still being

> > > studied. Also, what will they test for in the

> blood

> > > samples. I have

> > > been tested for every commonly tested virus and

> bacteria

> > > there is -

> > > but that didn't even include bartonella,

> babesia or

> > > borrelia except

> > > for a western blot without including all the

> bands, so

> > > negative. But

> > > I have several positive bands at IgeneX and

> positive urine

> > > antigen

> > > with a positive reverse western blot on that.

> > >

> > > Cheney is in North Carolina. He took no interest

> in my case

> > > - none

> > > when I already had a postive PCR for mycoplasma

> and

> > > evidence of white

> > > blood cell infection under microscopy. I am

> sorry, but that

> > > is not

> > > science or smart. He wasn't treating Incline

> Village.

> > > He was treating

> > > patients in North and South Carolina. I was the

> only

> > > patient in the

> > > Charlotte, NC support group who recovered at all.

> I have to

> > > add that

> > > I am not fully recovered and have been severely

> harmed by

> > > quinolone

> > > antibiotics, so I am not about to claim that

> there is some

> > > magic fix

> > > for borrelia infection or c. pneumonia or HHV6

> etc. I am

> > > claiming

> > > that ignoring bacterial infections and claiming

> you have

> > > adequate

> > > tests to diagnose such is ignorance of the worst

> sort.

> > > >

> > > > I don't disagree that more attention is

> needed to

> > > the connection

> > > > between Lyme disease and CFS, and in fact,

> as you

> > > know, I'm

> > > planning to

> > > > present a poster paper on a possible link at

> the March

> > > 2009 IACFS/ME

> > > > conference in Reno, which has been accepted.

> > >

> > > *****Yes, bless your heart, I am so pleased that

> you

> > > include this. I

> > > also am turning increasingly toward your study

> indicating a

> > > need to

> > > treat the damaged immune and endocrine system of

> folks like

> > > myself

> > > using your approach. I'm trying some of your

> approach

> > > and hope to

> > > post more on how I am doing soon. I'm being

> treated by

> > > a doctor in

> > > California who is using a lot of your

> information.

> > >

> > > Right now I am focused on cataract surgery

> tomorrow and

> > > will be able

> > > to focus on more cfs details later.

> > >

> > > a Carnes

> > > >

> > > > Best regards,

> > > >

> > > > Rich

> > > >

> >

[Guest guest]

I believe he does do Igenex. He mentioned to me what he thought the best tests

for Lyme were and he thought that based on my case that Lyme was not an issue.

That suggests he felt he knew what Lyme looks like - that he'd had patients with

it. Lyme tests were on his lab sheet - he certainly didn't say I don't believe

in Lyme - he said in your case I don't think its Lyme. (I'm not saying he tests

for it alot).

> From: pjeanneus <pj7@...>

> Subject: Re: News segment on the Whittemore Institute

>

> Date: Wednesday, December 17, 2008, 9:13 PM

> Cheney did not, to my knowledge, test his patients for

> mycoplasmas in

> the late 1990s. I have never heard of him using IgeneX to

> test for

> borrelia in any patients.

>

> He told an audience that he worried about antibiotics

> damaging the

> gut. At the question time I stood and mentioned that

> Zithromax had

> cured all my gut problems. The audience went nuts. One

> woman asked

> Cheney if she should take Zithromax.

>

> He kind of freaked out, turned red in the face and said,

> " We don't

> relly know what Zithromax is doing. " Then he changed

> the subject.

>

> I don't consdier that " chasing bugs. "

>

> What am I missing?

>

> I believe in treating the terrain. Obviously antibiotics

> are not

> CURING Lyme or cfs. Neither is Ampligen or Valcyte. We are

> going to

> have to put the whole thing together. We are probably not

> going to

> see a cure in our lifetimes. But we might get better.

>

> a Carnes

>

> >

> >

> > Dr. Cheney, told me he spent many years of his CFS

> career " chasing

> bugs " .

> >

> > And, treating bugs. Even when clearing some of

> " the bugs " , the

> disease remained.

> >

> > In the case of antibiotics, many of us can barely

> tolerate them or

> a limited number of them.

> >

> > (This is pretty scary, when after many years ill, one

> has

> significant Cardiac abnormalities, and gets an antibiotic

> resistent

> Pneumonia, with an ever shortening list of abx to try).

> >

> > He has also said why make his patients " gut

> cripples "

> w/antibiotics, when they do not cure their CFS?

> >

> > He still believes there was a viral onset, but he told

> me in

> 2005/6, he had stopped chasing bugs, and was focusing on

> " the

> terrain " . If that is understood and corrected, the

> bugs will go, too,

> by the body's natural processes.

> > { Scientists already have long debated the " bugs

> vs. terrain "

> question}.

> >

> > But, he still prescribed anti-virals, antibiotics,

> anti-fungals, as

> deemed appropriate.

> >

> > I believe he revisits the viral issue as more Science

> and more

> antiviral treatment and data emerges. (Current times would

> seem to be

> an example).

> >

> > Katrina

[Guest guest]

Exactly.

I am 100% cured and although I had numerous problems (mercury poisoning, EBV,

HHV6, CMV, antibiotic resistant staph in my sinuses, hypercoagulation, poor

immune function, hypotension, multiple chemical sensitivities, and more), it was

getting away from the mold that cured me. Then one by one, everything else went

away.

Doris

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

From: khalyal

Cort said "

> No one's listening to mold warrior. "

That's not exactly true. There is a band of second-battalion mold

warriors who are actually doing quite well by following 's

mold-avoidance techniques, myself included.

K

. _,_._,___

[Guest guest]

I wasn't asking him to be a research scientist! He was frustrated why people

didn't believe him about the mold - and he was sure that it was a key element in

ME/CFS. So I asked him several times how a CFS patient could tell if he had a

mold problem and I told him I would put his answer up on my website - and he

never gave me anything.

He didn't diagnose himself using a blood test - he diagnosed himself using his

own insights - thats why I thought he should have been able to provide some sort

of method. It sounds like he have you one; get out of the house and see if you

do better. I understand that - I haven't been able to sleep in a house for 10

years because of MCS.

I clearly have mold issues - I do better in the desert - but I thinks thats part

of an overally hypersensitivity to substances - not a specific problem with a

mold - which is I believe what has or had. I think is atypical in

that as I remember it was a specific type of mold that was a problem for him -

not mold in general - perhaps I'm wrong.

I think everyone should do the get out of the house trick. I'll bet alot of

people's health is effected by mold and I think its been underexamined in CFS.

The first doctor I saw was a mold doctor.

I hope you continue to improve!

> From: khalyal <khalyal@...>

> Subject: Re: News segment on the Whittemore Institute

>

> Date: Thursday, December 18, 2008, 7:46 PM

> I'm a little confused because is a sufferer of CFS,

> not a doctor

> or a research scientist. I'm under the impression that

> he would

> dearly love for a doctor or research scientist to look into

> this

> completely and come up with a technique. But it

> shouldn't be up to .

>

> Although, those of us who have experimented with his ideas

> have

> achieved a great deal of improvement. In my case, for

> instance, I

> started following his advice and achieving improvement long

> before we

> confirmed mold in my house. I left the house for a period

> of time

> and, following his clues, felt tremendous improvement

> within a month.

> Going back to the house, however, darn near killed me.

> Later, we did

> actually discover the mold in between the walls.

>

> I was also under the impression that was in the

> original Incline

> cohort, so I'm not sure how we could identify his case

> as " atypical "

> if he was of that group. I suppose, though, that you could

> consider

> it " atypical " if you are talking about CDC-CFS.

>

> Anyway, it's helping me. I can walk my dog for a mile

> and back,

> whereas a year ago I couldn't go to the bathroom by

> myself. That's

> something. And it's helping others. I'm not

> saying it's for you, or

> that everybody must do it. All I'm saying is that

> it's working for a

> growing number, and therefore I guess it should be talked

> about as

> another Experimental approach.

[Guest guest]

Actually, what he told me was not just to get out of the house, but to

get out of the house without taking anything with me.

>> Most people leave for a week and think that was a good test. The problem is

if your body is completely wacked out and full of infections and all the other

problems, it's going to take a lot longer than a week. You might need to leave

for a month or several months.

Anyway, I know you weren't trying to make him be a research scientist.

And I know he didn't do any blood tests.

>> Why not? The blood test is pretty simple. A couple hundred bucks and you

know if you are one of the 5% of people who can't detox mold toxins. It

shouldn't be too hard to find a doctor knowledgeable about Shoemakers book /

website. Or your doctor can consult with Shoemaker or you can go directly to

him.

Doris

[Guest guest]

I should add, I had the bad mold gene, but I only had 1, not 2, and I didn't

have the " dreaded " one. If I had had 2 bad ones and one was the dreaded one,

maybe I wouldn't have gotten better even after my exposure was gone. (For those

that don't know, the people with the " dreaded " combination have trouble detoxing

all kinds of things and have the most trouble getting better.)

Doris

Re: News segment on the Whittemore Institute

Oh, he HAS done the genetic testing, at Shoemaker's request. He has

the double-dreaded genetic typing, according to Shoemaker - genetic

susceptibility for both mold and Lyme.

. _,_._,___