Re: Dr Kerr's RNA studies attn Dr. Enlander

[Guest guest]

In a message dated 1/3/2006 5:56:02 P.M. Pacific Standard Time, pj7@...

writes:

Dr. Enlander,

What infections would you suggest are causing the problem with the

white blood cells in CFIDS? Are you doing studies in which you test

patients for infections? If so, which ones?

Thanks,

a Carnes

Dr Enlander and Dr Kerr are looking at the RNA genome of white cells to

possibly find a predetermined abnormality in the RNA which may give us insight

into the cause (pathogenesis) of CFS.

Joy

Research Assistant to Dr Enlander

_www.enlander.com_ (http://www.enlander.com/)

[Guest guest]

Dr. Enlander,

What infections would you suggest are causing the problem with the

white blood cells in CFIDS? Are you doing studies in which you test

patients for infections? If so, which ones?

Thanks,

a Carnes

>

> One of your group asked about the ongoing research we are involved

with Dr

> Kerr in London.

> Dr Kerr, coincidentally originally from Belfast, is

working at a

> major teaching hospital in London on the RNA genome in the white

blood cells

> of CFS patients. We believe that this is a major thrust in the

pathogenesis of

> the disease.

> We did not have to be persuaded to be involved. The blood samples

are

> collected in our office in New York, the test is free , normally it

would cost

> approx $400, patients who wish to be tested should contact us.

> _denlander@a..._ (mailto:denlander@a...)

>

> regards

> Enlander MD

>

> sent a description of the ongoing research

>

>

> The Kerr Studies - 'I am involved in studies of the pathogenesis

of

> parvovirus B19, persistent virus infections and particularly CFS.

I enclose an

> abstract which is now in press with Journal of Clinical Pathology.

This provides

> very good evidence for gene differences in CFS patients and was

presented at

> the recent meeting of the Society for General Microbiology in

Edinburgh (Apr

> 4-7, 2005)http://www.sgm.ac.uk/meetings/past.cfm. (Upon examining

the

> expression of @ 9,500 genes in CFS patients and controls using

gene microarray's, the

> Kerr group found 16 genes involved mostly in T-cell activation and

neuronal

> and mitochondrial functioning,were differentially expressed in

CFS) We are

> undertaking a programme of research into the molecular

pathogenesis of CFS

> following this pilot study. First a repeat of the microarray

study, and then

> testing of CFS, normals, and several disease control groups to

arrive at those

> gene differences which are only or mainly associated with CFS. We

are also

> looking for biomarkers in the serum of patients. We envisage these

studies

> leading to development of a diagnostic test and specific

treatments which will

> target the specific molecular pathways involved in CFS.'

>

> Dr. Kerr's group enjoys the British support of the _CFS Research

Foundation,_

> (http://www.cfsrf.com/index.html) Hertfordshire, UK.

> From the CFS Research Foundation Newsletter (To subscribe to an

online

> version of the CFS Research Foundation's Newsletter click here) -

As Dr. Kerr

> alluded to above the next stage of the project is multi-factorial.

First mRNA

> from the entire genome will examined in 50 CFS and 50 healthy

controls. For the

> first time that I am aware of Dr. Kerr's research group will then

compare the

> genes of CFS patients with a wide variety of control groups

including people

> with depression, rheumatorid arthritis, osteoarthritis, MS and

prolonged

> fatigue and healthy individuals with some fatigue on the day of

testing. The

> researchers hope to identify both patterns of gene expression that

CFS patients

> share with these other groups and those unique to them. It is

important when

> searching for a biomarker to test a variety of control groups with

similar

> disease processes in order to determine what you have found is

unique to your

> particular disease. The group will then attempt to 'develop

diagnostic tests

> and identify therapeutic targets'. (Exciting stuff!). In order to

determine if

> there is any geographic variation in the gene expression the

samples will be

> taken from six different parts of the country.

> The Kerr group will also examine how the genes change in people

with CFS

> whose onset was synonymous with parvovirus B19, Q-fever and

enterovirus

> infection. The researchers will attempt in a smaller group to

correlate differences

> in symptom expression in CFS patients with changes in gene

expression.

> Finally, changes in gene expression in 10 patients will be

examined over time to

> determine how symptom expression correlates with gene expression.

> As can be seen Dr. Kerr and his group have taken a creative and

dynamic

> approach towards their genetic research in CFS. Projects of this

scope are

> expensive, the cost of this research runs to over 1,000,000 pounds.

( approx $1.8

> million ) The Kerr gene project has been ongoing for two years

and funds are

> available for another year

>

>

> DE

>

>

>

>

>

>

[Guest guest]

When I was writing up the report for the AACFS conf in 2004, it was

noted that cfs is more common in rural areas. (Wichita study). So do

you think rural folks have a higher incidence of these RNA defects?

Seems to me you might make faster progress testing for borrelia in

cfs patients. Of course my logic here is based on the fact that

borrelia is carried by ticks who tend to reside in rural areas along

with the folks with cfs.

What do you think about Urnovitz' gene shuffling theories? Perhaps

borrelia damages RNA. I don't have any ancestors with anything like

cfs. I do have three members of my immediate family with symptoms,

and we all lived in a rural area with LOTS of ticks.

a Carnes

>

>

> In a message dated 1/3/2006 5:56:02 P.M. Pacific Standard Time,

pj7@c...

> writes:

>

> Dr. Enlander,

> What infections would you suggest are causing the problem with the

> white blood cells in CFIDS? Are you doing studies in which you

test

> patients for infections? If so, which ones?

>

> Thanks,

>

> a Carnes

>

>

> Dr Enlander and Dr Kerr are looking at the RNA genome of white

cells to

> possibly find a predetermined abnormality in the RNA which may give

us insight

> into the cause (pathogenesis) of CFS.

>

>

> Joy

> Research Assistant to Dr Enlander

> _www.enlander.com_ (http://www.enlander.com/)

>

>

>

>

[Guest guest]

Hi

 

Maybe it is because we get sprayed more with poisonous chemicals in rural areas.

In the UK a Royal commission was set up to look into the effects on people

living adjacent to farm land and the instances of illness are greater although

they cannot prove the link. Of curse the chemical companies have denied this,

however the commission stated that the methods of testing were 50 years out of

date and how could it possibly take into account the total chemical load with

household chemicals and stuff we use in out gardens. Georgina Downs, she has a

web site videoed a dummy in her garden as the sprayer went past and the dummy

was covered, no where on these chemicals does it say spray people in fact it has

poison signs and wear protective clothing.

 

n

@...: pj7@...: Wed, 4 Jan 2006

03:50:30 +0000Subject: Re: Dr Kerr's RNA studies attn Dr.

EnlanderWhen I was writing up the report for the AACFS conf in 2004, it was

noted that cfs is more common in rural areas. (Wichita study). So do you think

rural folks have a higher incidence of these RNA defects? Seems to me you might

make faster progress testing for borrelia in cfs patients. Of course my logic

here is based on the fact that borrelia is carried by ticks who tend to reside

in rural areas along with the folks with cfs.What do you think about Urnovitz'

gene shuffling theories? Perhaps borrelia damages RNA. I don't have any

ancestors with anything like cfs. I do have three members of my immediate family

with symptoms, and we all lived in a rural area with LOTS of ticks.a

Carnes>>  > In a

message dated 1/3/2006 5:56:02 P.M. Pacific Standard Time, pj7@c...  > writes:>

> Dr.  Enlander,> What infections would you suggest are causing the problem

with  the > white blood cells in CFIDS? Are you doing studies in which you test 

> patients for infections? If so, which ones?> > Thanks,> > a  Carnes> > >

Dr Enlander and Dr Kerr are looking at the RNA genome of white cells to  >

possibly find a predetermined abnormality in the RNA which may give us  insight

> into the cause (pathogenesis) of CFS.>  >  > Joy> Research Assistant to Dr

Enlander> _www.enlander.com_ (http://www.enlander.com/) > > > > [Non-text

portions of this message have been removed]>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]

Dear a

You have not understood the thrust of the research. This is NOT a test to

determine a virus, bacteria, or other pathogen. There are direct tests and

cultures for bacteria and viruses. Unfortunately over the past fifty years

since

Ramsay, we have not isolated a specific pathogen.

We understand that you would like to help other patients. But you must

understand the RNA test before you advise others, this is a test of the RNA

genome, defining the makeup of the cell.

Joy

In a message dated 1/4/2006 3:27:08 PM Eastern Standard Time, pj7@...

writes:

.....n, this also makes a lot of sense to me. I'm not suggesting that

RNA gene studies aren't useful. It just seems that if we could find

infections and chemical problems NOW this would be easier to fix at

this time. The gene studies may turn out to be helpful sometime in

the future. I doubt I will still be around. LOL

a

[Guest guest]

If lyme disease is a result of the RNA defects, this is crucial to know exactly

what they are testing for. It seems more likely to me that lyme (and the other

infections) are opportunistic, because of the defects, if not the whole world

would be sick with lyme. So, I think they are testing for the exact right

thing!!!! Testing for something further down the chain of events wouldn't show

them much or anything at all about why some people get chronic infections and

others do not. I'm thankful to Dr Enladner and company for doing this research,

this could be very valuable to us all. And want to thank all of the participants

as well for going to the trouble to go through with the blood donations.

Marcia

Re: Dr Kerr's RNA studies attn Dr. Enlander

When I was writing up the report for the AACFS conf in 2004, it was

noted that cfs is more common in rural areas. (Wichita study). So do

you think rural folks have a higher incidence of these RNA defects?

Seems to me you might make faster progress testing for borrelia in

cfs patients. Of course my logic here is based on the fact that

borrelia is carried by ticks who tend to reside in rural areas along

with the folks with cfs.

What do you think about Urnovitz' gene shuffling theories? Perhaps

borrelia damages RNA. I don't have any ancestors with anything like

cfs. I do have three members of my immediate family with symptoms,

and we all lived in a rural area with LOTS of ticks.

a Carnes

>

>

> In a message dated 1/3/2006 5:56:02 P.M. Pacific Standard Time,

pj7@c...

> writes:

>

> Dr. Enlander,

> What infections would you suggest are causing the problem with the

> white blood cells in CFIDS? Are you doing studies in which you

test

> patients for infections? If so, which ones?

>

> Thanks,

>

> a Carnes

>

>

> Dr Enlander and Dr Kerr are looking at the RNA genome of white

cells to

> possibly find a predetermined abnormality in the RNA which may give

us insight

> into the cause (pathogenesis) of CFS.

>

>

> Joy

> Research Assistant to Dr Enlander

> _www.enlander.com_ (http://www.enlander.com/)

>

>

>

>

[Guest guest]

That would make the assumption that multiple pathogens affected one

mutation and that this was not just implicated, but causative.

It's unlikely to be that simple, don't you think?

NOt that all research isn't worthwhile, it's just, for example, in

terms of methylation defects and genetics there are many genes

operating in concert. Usually in order to get collapse of the whole

organism you need a bunchof things to go wrong, as nature is built

with inherent backup for errors.

>

> Dr Enlander and Dr Kerr are looking at the RNA genome of white cells

to

> possibly find a predetermined abnormality in the RNA which may give

us insight

> into the cause (pathogenesis) of CFS.

>

>

> Joy

> Research Assistant to Dr Enlander

> _www.enlander.com_ (http://www.enlander.com/)

>

>

>

>

[Guest guest]

I " m doubtful of the rural thing being true now anyway, it's more

suburban, and urban if you visit the suburbs where all the deer

proliferate! LIke i did .

I do think you're right tho, we're looking at epigenetics most likely

rather than genetics, in terms of the footprints of damage.

> >

> >

> > In a message dated 1/3/2006 5:56:02 P.M. Pacific Standard Time,

> pj7@c...

> > writes:

> >

> > Dr. Enlander,

> > What infections would you suggest are causing the problem with the

> > white blood cells in CFIDS? Are you doing studies in which you

> test

> > patients for infections? If so, which ones?

> >

> > Thanks,

> >

> > a Carnes

> >

> >

> > Dr Enlander and Dr Kerr are looking at the RNA genome of white

> cells to

> > possibly find a predetermined abnormality in the RNA which may give

> us insight

> > into the cause (pathogenesis) of CFS.

> >

> >

> > Joy

> > Research Assistant to Dr Enlander

> > _www.enlander.com_ (http://www.enlander.com/)

> >

> >

> >

> >

[Guest guest]

n, this also makes a lot of sense to me. I'm not suggesting that

RNA gene studies aren't useful. It just seems that if we could find

infections and chemical problems NOW this would be easier to fix at

this time. The gene studies may turn out to be helpful sometime in

the future. I doubt I will still be around. LOL

a

>

> Hi

>  

> Maybe it is because we get sprayed more with poisonous chemicals in

rural areas. In the UK a Royal commission was set up to look into the

effects on people living adjacent to farm land and the instances of

illness are greater although they cannot prove the link. Of curse the

chemical companies have denied this, however the commission stated

that the methods of testing were 50 years out of date and how could

it possibly take into account the total chemical load with household

chemicals and stuff we use in out gardens. Georgina Downs, she has a

web site videoed a dummy in her garden as the sprayer went past and

the dummy was covered, no where on these chemicals does it say spray

people in fact it has poison signs and wear protective clothing.

>  

> n

>

>

> @y...: pj7@c...: Wed, 4 Jan 2006 03:50:30

+0000Subject: Re: Dr Kerr's RNA studies attn Dr.

EnlanderWhen I was writing up the report for the AACFS conf in 2004,

it was noted that cfs is more common in rural areas. (Wichita study).

So do you think rural folks have a higher incidence of these RNA

defects? Seems to me you might make faster progress testing for

borrelia in cfs patients. Of course my logic here is based on the

fact that borrelia is carried by ticks who tend to reside in rural

areas along with the folks with cfs.What do you think about Urnovitz'

gene shuffling theories? Perhaps borrelia damages RNA. I don't have

any ancestors with anything like cfs. I do have three members of my

immediate family with symptoms, and we all lived in a rural area with

LOTS of ticks.a Carnes>>  > In a message dated 1/3/2006 5:56:02 P.M.

Pacific Standard Time, pj7@c...  > writes:> > Dr.  Enlander,> What

infections would you suggest are causing the problem with  the >

white blood cells in CFIDS? Are you doing studies in which you test 

> patients for infections? If so, which ones?> > Thanks,> > a 

Carnes> > > Dr Enlander and Dr Kerr are looking at the RNA genome of

white cells to  > possibly find a predetermined abnormality in the

RNA which may give us  insight > into the cause (pathogenesis) of

CFS.>  >  > Joy> Research Assistant to Dr Enlander>

_www.enlander.com_ (http://www.enlander.com/) > > > > [Non-text

portions of this message have been removed]>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]

Since I wrote this report you will undoubtedly want to find Dr.

Lapp's report as well. I believe it is online somewhere. This

is what I reported from the CDC epidemology report.

a Carnes

C. Reeves, MD from the CDC began his presentation of their

new epidemiology studies by stating clearly that the " fatigue " in

chronic FATIGUE syndrome is not just " tired. " It is a fatigue not

relieved by rest and includes hurting all over. He then moved on to

some startling new information. The CDC study found 235 cases of CFS

per 100,000 in their Wichita study. Women are more likely than men to

have it, but CFS is more common than breast cancer among women. These

details are familiar, but here is a list of surprises.

Rural rates of CFS are twice those of urban areas

Minorities have the highest risk

Lower socioeconomic groups have a much greater risk

Eighty percent have a GRADUAL onset

No regional differences in the disease are manifest

Median duration of the illness is 2-7 years

Only 16% of the cases uncovered in the survey are diagnosed

Unemployed or cases on disablity total 25%

Level of disability equals that of patients with major health

problems such as COPD

The cost in lost productivity ($9 billion) is equal to WalMart & #146;s

annual profit margin, or the cost of the hurricane in Miami in 2004.

The cost to a family with CFS for one year is $20,000. This includes

the cost of treatment. In the UK it is costing the government $4

billion to treat CFS patients.

The CDC is working to develop a network system to create more

clinical studies of CFS. The next epidemiological study will be in

the Atlanta, Georgia area, and will include both urban and rural

counties. The location in the CDC area will enable them to do the

complex studies efficiently.

http://www.wicfs-me.org/Pdf%20Files/AACFS%202004%20Report_2.pdf

[Guest guest]

No, I undoubtedly don't .

I don't really care one way or the other except with 6 years of lyme

coming up, 99% of those I know who had/have lyme CFS lived/got it in

the suburbs.

>

> Since I wrote this report you will undoubtedly want to find Dr.

> Lapp's report as well. I believe it is online somewhere. This

> is what I reported from the CDC epidemology report.

>

> a Carnes

>

> C. Reeves, MD from the CDC began his presentation of their

> new epidemiology studies by stating clearly that the " fatigue " in

> chronic FATIGUE syndrome is not just " tired. " It is a fatigue not

> relieved by rest and includes hurting all over. He then moved on to

> some startling new information. The CDC study found 235 cases of CFS

> per 100,000 in their Wichita study. Women are more likely than men to

> have it, but CFS is more common than breast cancer among women. These

> details are familiar, but here is a list of surprises.

>

> Rural rates of CFS are twice those of urban areas

> Minorities have the highest risk

> Lower socioeconomic groups have a much greater risk

> Eighty percent have a GRADUAL onset

> No regional differences in the disease are manifest

> Median duration of the illness is 2-7 years

> Only 16% of the cases uncovered in the survey are diagnosed

> Unemployed or cases on disablity total 25%

> Level of disability equals that of patients with major health

> problems such as COPD

> The cost in lost productivity ($9 billion) is equal to WalMart & #146;s

> annual profit margin, or the cost of the hurricane in Miami in 2004.

> The cost to a family with CFS for one year is $20,000. This includes

> the cost of treatment. In the UK it is costing the government $4

> billion to treat CFS patients.

> The CDC is working to develop a network system to create more

> clinical studies of CFS. The next epidemiological study will be in

> the Atlanta, Georgia area, and will include both urban and rural

> counties. The location in the CDC area will enable them to do the

> complex studies efficiently.

>

>

> http://www.wicfs-me.org/Pdf%20Files/AACFS%202004%20Report_2.pdf

>

[Guest guest]

jill1313 wrote:

>No, I undoubtedly don't .

>I don't really care one way or the other except with 6 years of lyme

>coming up, 99% of those I know who had/have lyme CFS lived/got it in

>the suburbs.

>

>

>

>

>>Since I wrote this report you will undoubtedly want to find Dr.

>> Lapp's report as well. I believe it is online somewhere. This

>>is what I reported from the CDC epidemology report.

>>

>>a Carnes

>>

>> C. Reeves, MD from the CDC began his presentation of their

>>new epidemiology studies by stating clearly that the " fatigue " in

>>chronic FATIGUE syndrome is not just " tired. " It is a fatigue not

>>relieved by rest and includes hurting all over. He then moved on to

>>some startling new information. The CDC study found 235 cases of CFS

>>per 100,000 in their Wichita study. Women are more likely than men to

>>have it, but CFS is more common than breast cancer among women. These

>>details are familiar, but here is a list of surprises.

>>

>>Rural rates of CFS are twice those of urban areas

>>Minorities have the highest risk

>>Lower socioeconomic groups have a much greater risk

>>Eighty percent have a GRADUAL onset

>>No regional differences in the disease are manifest

>>Median duration of the illness is 2-7 years

>>Only 16% of the cases uncovered in the survey are diagnosed

>>Unemployed or cases on disablity total 25%

>>Level of disability equals that of patients with major health

>>problems such as COPD

>>The cost in lost productivity ($9 billion) is equal to WalMart & #146;s

>>annual profit margin, or the cost of the hurricane in Miami in 2004.

>>The cost to a family with CFS for one year is $20,000. This includes

>>the cost of treatment. In the UK it is costing the government $4

>>billion to treat CFS patients.

>> The CDC is working to develop a network system to create more

>>clinical studies of CFS. The next epidemiological study will be in

>>the Atlanta, Georgia area, and will include both urban and rural

>>counties. The location in the CDC area will enable them to do the

>>complex studies efficiently.

>>

>>

>>http://www.wicfs-me.org/Pdf%20Files/AACFS%202004%20Report_2.pdf

>>

>>

>>

>

>

>

>

>

>

>

>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, I undoubtedly don't .

> I don't really care one way or the other except with 6 years of lyme

> coming up, 99% of those I know who had/have lyme CFS lived/got it in

> the suburbs.

I wanted to make a couple of points concerning somethings I recently

read in a book on LD, but I wanted to make a point about what Jill

says here. Jill I enjoy your posts as they are intelligent. You say

here that you do not care one way or the other but in your previous

post, you disagreed with a study based on your experiences. If you

didn't care I was wondering why you posted your disagreement with the

studies? Your disagreeing with the study a posted is what made me

think she thought you would be interested in reading another study

about LD. I do not know if you live in a suburb but if a " lymie " does

live there and that is where they became ill, I would think most of

the other " lymies " they know are also from the suburbs. Another point

is that I became ill at 28 and lived in the suburbs of Dallas,

however I grew up in rural areas and was exposed to many ticks in

those days. I have always felt that I had symptoms much earlier than

age 28, when I became " full-blown " with CFS. Like you where most

lymies are " getting " LD doesn't matter to either but they could have

gotten bitten while growing up in rural areas and moved to the city

later. Just a thought.

The two points from the book written by two medical researchers with

just the name, " Lyme Disease " , was written as a group of books on

infectious diseases. One point they made was that once someone got

LD, their immune systems would not be able to fight it off without

the help of antibiotics. Lyme spirochettes antibodies and antigens

were found in my blood, showing that I once had LD. The test for

present LD showed negative, but this not unusual. However IF the

authors are correct that antibiotics are needed to defeat LD, I never

had antibiotics to treat my LD, so since I once had it, this would

indicate that I STILL had it. Secondly is they said there are two

main types of LD found. One with arthritis-type symptoms, usually

found in the US and neuro-type symptoms, usually found in Europe. The

authors say that different antibotics are needed for each type. The

LD with neuro-type symptoms was said to need Rocephin IV's and Ceftin

orally. These two penetrate nerve tissues. They listed one more abx

but I cannot remember it name.

I reently had a rocephin IV for my lung congestion. I mentioned to my

CFS doctor that Rocephin was also the drug of choice for LD with

neuro-type symptoms and I wanted to notice how my brain felt after

the IV. MY brain symptoms where worse because of returning to

my " moldy " mobile home, yet I did improve for 4-5 days after the

Rocephin IV. It is my " guess " that since I have been ill for over 30

years that it would take much more than one Rocephin IV to kill all

of the spirochettes, but I now need to convince my CFS doctor of this

and continue the IV's, but I do not know for how long. since most LD

specialist in the USA are use to the type with arthritis-type

symptoms, I doubt they would know how long I need to try the Rocephin

IV's. Since Europe is where that type of LD is most common, anyone

here from Europe who is familar with this type of LD and can comment

on the things I have stated?

[Guest guest]

>

> Dear a

> You have not understood the thrust of the research. This is NOT a

test to

> determine a virus, bacteria, or other pathogen. There are direct

tests and

> cultures for bacteria and viruses. Unfortunately over the past

fifty years since

> Ramsay, we have not isolated a specific pathogen.

> We understand that you would like to help other patients. But you

must

> understand the RNA test before you advise others, this is a test

of the RNA

> genome, defining the makeup of the cell.

> Joy

Joy, I am looking at joining your study but living in Dallas area and

not use to NYC, it is a big decision for me and not yet sure. If I

understand you right, this test can also dispute that it is an actual

illness and not in our heads? I am thinking of the man in the UK who

has been on a crusade to try and convince people that CFS is not

a " real illness " ? I say convince people instead of prove to people,

because there is no way he could " prove " that CFS is not a real

illness because PWC's know it is a " real illness " .

Bob

[Guest guest]

There is no reason to isolate one specific pathogen although probably

the epidemic we're seeing today is due at least 50% to borrelia imo.

But there is no reason there would be one specific pathogen. Multiple

common pathways are affected similarly by multiple bugs, through

upregulation of cytokines, for example, as you well know. I cannot see

how you could do more than identify a subset of patients through an

altered RNA pathway and then you would have to figure out who came in

with it altered and whose was altered through environment. The recent

research on identical twins I've seen has been very illuminating to

me. Even identical twins handle HIV completely differently, and then

there was another study that may be old or new (I can't remember as

I've been reading so much), talking about changes in methylation,

epigenetic, that occur so that twins born " identical " genetically look

fairly different as the years go by.

I appreciated reading this info as I " d been baffled by the case I'd

seen of identical twins writing their memoir together, one is a

psychiatrist (healthy, slender, ballroom dancer) the other psychotic,

and because of constant meds, quite overweight. THey lead completely

different lives although they are close.

All research of any kind is interesting but frankly after having

gotten lyme and having gotten to know the organism intimately

unfortunately and seeing its footprints I would love to figure out how

to disable this stealthy clever bug and help people without years of

antibiotics.

>

> Dear a

> You have not understood the thrust of the research. This is NOT a

test to

> determine a virus, bacteria, or other pathogen. There are direct

tests and

> cultures for bacteria and viruses. Unfortunately over the past

fifty years since

> Ramsay, we have not isolated a specific pathogen.

> We understand that you would like to help other patients. But you must

> understand the RNA test before you advise others, this is a test of

the RNA

> genome, defining the makeup of the cell.

> Joy

>

> In a message dated 1/4/2006 3:27:08 PM Eastern Standard Time, pj7@c...

> writes:

> ....n, this also makes a lot of sense to me. I'm not suggesting

that

> RNA gene studies aren't useful. It just seems that if we could find

> infections and chemical problems NOW this would be easier to fix at

> this time. The gene studies may turn out to be helpful sometime in

> the future. I doubt I will still be around. LOL

> a

>

>

>

[Guest guest]

That would be great news. Actually its Simon Wesseley tho.

Marcia

Re: Re: Dr Kerr's RNA studies attn Dr. Enlander

In a message dated 1/4/2006 6:04:48 PM Eastern Standard Time,

blue74730@... writes:

Joy, I am looking at joining your study but living in Dallas area and

not use to NYC, it is a big decision for me and not yet sure. If I

understand you right, this test can also dispute that it is an actual

illness and not in our heads? I am thinking of the man in the UK who

has been on a crusade to try and convince people that CFS is not

a " real illness " ? I say convince people instead of prove to people,

because there is no way he could " prove " that CFS is not a real

illness because PWC's know it is a " real illness " .

Bob

Dear Bob

Simon Wellesly is a psychiatrist who has written about CFS being an imaginary

disease, if we had a specific test this would remove the uncertainty that he

provokes.

regards

Joy

[Guest guest]

Joy, I understand the thrust of your research. You do not understand

the thrust of my question. Currently there isn't an accurate test for

borrelia, well, not one in much use. The PCRs for mycoplasma are not

very accurate either. We have been stating for years at meetings of

the NIH and CDC that NO ONE IS ACCURATELY TESTING FOR BACTERIA, YET

THEY INSIST NO ONE HAS FOUND A COMMON BACTERIA.

Dr. Bell in Lyndonville, NY sent lymph node biopsies of what, 40

children, and the CDC did nothing. In 1998 when they admitted to

misuse of funds at the CDC I asked where the biopsies were and could

they be tested now? The reply, " That is a good question. They are

around here somewhere in a refrigerator. Perhaps we could test them. "

Of course, mycoplasma would no longer show up after over ten years.

The CDC is supposedly now testing blood from the Wichita study cases.

I wonder what tests they are doing and if any of them are meaningful.

Somehow I seriously doubt it.

So what are you willing to test for? Where will you get the tests run?

Are you aware that there may be gene damage caused by bacteria? What

is the point of analysing a damaged gene, if this is what is

happening, when you could look for the bacteria? Please do a google

search for urnovitz and gene shuffling and let me know what you think.

I look forward to your reply.

a Carnes

>

> Dear a

> You have not understood the thrust of the research. This is NOT a

test to

> determine a virus, bacteria, or other pathogen. There are direct

tests and

> cultures for bacteria and viruses. Unfortunately over the past

fifty years since

> Ramsay, we have not isolated a specific pathogen.

> We understand that you would like to help other patients. But you

must

> understand the RNA test before you advise others, this is a test

of the RNA

> genome, defining the makeup of the cell.

> Joy

>

> In a message dated 1/4/2006 3:27:08 PM Eastern Standard Time,

pj7@c...

> writes:

> ....n, this also makes a lot of sense to me. I'm not

suggesting that

> RNA gene studies aren't useful. It just seems that if we could find

> infections and chemical problems NOW this would be easier to fix at

> this time. The gene studies may turn out to be helpful sometime in

> the future. I doubt I will still be around. LOL

> a

>

>

>

[Guest guest]

Exactly and very well put.

> >

> > Dear a

> > You have not understood the thrust of the research. This is NOT a

> test to

> > determine a virus, bacteria, or other pathogen. There are direct

> tests and

> > cultures for bacteria and viruses. Unfortunately over the past

> fifty years since

> > Ramsay, we have not isolated a specific pathogen.

> > We understand that you would like to help other patients. But you

> must

> > understand the RNA test before you advise others, this is a test

> of the RNA

> > genome, defining the makeup of the cell.

> > Joy

> >

> > In a message dated 1/4/2006 3:27:08 PM Eastern Standard Time,

> pj7@c...

> > writes:

> > ....n, this also makes a lot of sense to me. I'm not

> suggesting that

> > RNA gene studies aren't useful. It just seems that if we could find

> > infections and chemical problems NOW this would be easier to fix at

> > this time. The gene studies may turn out to be helpful sometime in

> > the future. I doubt I will still be around. LOL

> > a

> >

> >

> >

[Guest guest]

Good question, Gail. I wish we could ask the CDC. I'm not even sure

how long their study continued to get past 7 years of evaluation????

a

> It is interesting to me that some reports state that median duration

is

> 2-7 years. I have heard of very few cases of complete recovery so I

> don't understand this stat.

> Gail

>