RE: Was this retrovirus discovered in the early 90's.

[Guest guest]

If it had been discovered, perhaps I would have known, having CFS &

Fibromyalgia, that I should not breastfeed, and possibly not pass it on to my

children, resulting in autism and CFS in them. Who knows.  Children of HIV

positive moms can be born free of that virus with precautions.

Grrrrrr.  But while that thought keeps popping into my mind, I think I'll pass

on anger for now and just be thrilled and optimistic.

________________________________

From: Jill Boyer <sjillboyer@...>

nids <nids >

Sent: Fri, October 16, 2009 8:06:08 AM

Subject: Was this retrovirus discovered in the early 90's.

 

Wow. I was rereading Dr. Klimas's answers to questions posed to her in the

New York Times. Someone asked about Dr. Elaine Freitas's work in the early 90's

where she discovered a new retrovirus (closely related to HLV2) and the NIH and

CDC shut down her research because it didn't mesh with their views that CFS is

psychoneurosis. Dr. did not answer the question directly but stated that

Elaine should be happy today and congratulated the Whittemore 's

institute on their great finding. This really bothers me that so many people had

to be sick because the top scientists at both the CDC and the NIH are so meshed

in their own views. I am just dumbfounded that scientists (of all people) can be

so closed minded. Here is the link:

http://consults. blogs.nytimes. com/2009/ 10/15/readers- ask-a-virus- linked-to-

chronic-fatigue- syndrome/

Was a C.F.S. Virus Discovered Years Ago?

Q.

Back in the early 1990s, Dr. Elaine DeFreitas at the Wistar

Institute in Philadelphia discovered a novel human retrovirus (very

closely related to HTLV 2, with Spuma-viruslike aspects) in C.F.I.D.S.

patients. This was subsequently confirmed by two other prominent

researchers (and a commercial laboratory).

Dr. DeFreitas was almost done sequencing its genes and published a

meticulous paper in a top journal. Then the Centers for Disease Control

and Prevention and the National Institutes of Health intentionally

destroyed her reputation because it did not mesh with their vigorous

assertions that C.F.I.D.S. was psychoneurosis. No one else has followed

this up for fear that their career might likewise be destroyed. This

was all detailed in the amazing book “Osler’s Web.â€

Is this the same virus as the “novel†XMRV?

Reilly

A.

Dr. Klimas responds:

Dr. DeFreitas was doing exciting work and should be congratulated

for her early results suggesting retroviral infection in C.F.S. Since

that time, technology has advanced in a dramatic way, giving

investigators new tools to search for viruses that were yet to be

identified in 1990-92, including the XMRV virus.

New antiviral drugs have also been developed that could potentially

be effective in controlling this sort of infection. We also have a much

stronger understanding of these drugs’ toxicity and safe use.

I congratulate the Whittemore Institute researchers for

their diligent work. I am also very happy for Elaine today. I would

also ask patients to be patient a little bit longer so that researchers

can devise and perform the sort of clinical trials that will let us

know if this virus is the linchpin in continued illness.

[Guest guest]

Same here, . It may have saved us and our children a lot of heartache!

Robyn

________________________________

From: <thecolemans4@...>

Sent: Friday, October 16, 2009 6:27:49 AM

Subject: Re: Was this retrovirus discovered in the early 90's.

If it had been discovered, perhaps I would have known, having CFS &

Fibromyalgia, that I should not breastfeed, and possibly not pass it on to my

children, resulting in autism and CFS in them. Who knows. Children of HIV

positive moms can be born free of that virus with precautions.

Grrrrrr. But while that thought keeps popping into my mind, I think I'll pass

on anger for now and just be thrilled and optimistic.

____________ _________ _________ __

From: Jill Boyer <sjillboyer (DOT) com>

nids <nidsgroups (DOT) com>

Sent: Fri, October 16, 2009 8:06:08 AM

Subject: Was this retrovirus discovered in the early 90's.

Wow. I was rereading Dr. Klimas's answers to questions posed to her in the

New York Times. Someone asked about Dr. Elaine Freitas's work in the early 90's

where she discovered a new retrovirus (closely related to HLV2) and the NIH and

CDC shut down her research because it didn't mesh with their views that CFS is

psychoneurosis. Dr. did not answer the question directly but stated that

Elaine should be happy today and congratulated the Whittemore 's

institute on their great finding. This really bothers me that so many people had

to be sick because the top scientists at both the CDC and the NIH are so meshed

in their own views. I am just dumbfounded that scientists (of all people) can be

so closed minded. Here is the link:

http://consults. blogs.nytimes. com/2009/ 10/15/readers- ask-a-virus- linked-to-

chronic-fatigue- syndrome/

Was a C.F.S. Virus Discovered Years Ago?

Q.

Back in the early 1990s, Dr. Elaine DeFreitas at the Wistar

Institute in Philadelphia discovered a novel human retrovirus (very

closely related to HTLV 2, with Spuma-viruslike aspects) in C.F.I.D.S.

patients. This was subsequently confirmed by two other prominent

researchers (and a commercial laboratory).

Dr. DeFreitas was almost done sequencing its genes and published a

meticulous paper in a top journal. Then the Centers for Disease Control

and Prevention and the National Institutes of Health intentionally

destroyed her reputation because it did not mesh with their vigorous

assertions that C.F.I.D.S. was psychoneurosis. No one else has followed

this up for fear that their career might likewise be destroyed. This

was all detailed in the amazing book “Osler’s Web.â€

Is this the same virus as the “novel†XMRV?

Reilly

A.

Dr. Klimas responds:

Dr. DeFreitas was doing exciting work and should be congratulated

for her early results suggesting retroviral infection in C.F.S. Since

that time, technology has advanced in a dramatic way, giving

investigators new tools to search for viruses that were yet to be

identified in 1990-92, including the XMRV virus.

New antiviral drugs have also been developed that could potentially

be effective in controlling this sort of infection. We also have a much

stronger understanding of these drugs’ toxicity and safe use.

I congratulate the Whittemore Institute researchers for

their diligent work. I am also very happy for Elaine today. I would

also ask patients to be patient a little bit longer so that researchers

can devise and perform the sort of clinical trials that will let us

know if this virus is the linchpin in continued illness.

[Guest guest]

BTW - thought I might offend someone w/the previous comment about choosing to

not be angry.  Not gonna tell anyone else how to feel about it.  One of the

things that stand out to me in that TV interview was the comment that the stress

hormone cortisol makes this virus replicate quickly and stay activated.  I've

spent way too much of my life in a state of stress and anxiety and knew this

makes me more ill.  Right now, it has never been more clear exactly why I need

to continue working on managing my stress and anxiety.    

Didn't want anyone to react thinking I was trying to tell anyone else whether

they should feel angry or not.    Especially right now - with this coming

out, I suspect all of our buried anger and frustrations are going to pop out

over and over again as if they were just happening.

________________________________

From: <thecolemans4@...>

Sent: Fri, October 16, 2009 8:27:49 AM

Subject: Re: Was this retrovirus discovered in the early 90's.

 

If it had been discovered, perhaps I would have known, having CFS &

Fibromyalgia, that I should not breastfeed, and possibly not pass it on to my

children, resulting in autism and CFS in them. Who knows.  Children of HIV

positive moms can be born free of that virus with precautions.

Grrrrrr.  But while that thought keeps popping into my mind, I think I'll pass

on anger for now and just be thrilled and optimistic.

____________ _________ _________ __

From: Jill Boyer <sjillboyer (DOT) com>

nids <nidsgroups (DOT) com>

Sent: Fri, October 16, 2009 8:06:08 AM

Subject: Was this retrovirus discovered in the early 90's.

 

Wow. I was rereading Dr. Klimas's answers to questions posed to her in the

New York Times. Someone asked about Dr. Elaine Freitas's work in the early 90's

where she discovered a new retrovirus (closely related to HLV2) and the NIH and

CDC shut down her research because it didn't mesh with their views that CFS is

psychoneurosis. Dr. did not answer the question directly but stated that

Elaine should be happy today and congratulated the Whittemore 's

institute on their great finding. This really bothers me that so many people had

to be sick because the top scientists at both the CDC and the NIH are so meshed

in their own views. I am just dumbfounded that scientists (of all people) can be

so closed minded. Here is the link:

http://consults. blogs.nytimes. com/2009/ 10/15/readers- ask-a-virus- linked-to-

chronic-fatigue- syndrome/

Was a C.F.S. Virus Discovered Years Ago?

Q.

Back in the early 1990s, Dr. Elaine DeFreitas at the Wistar

Institute in Philadelphia discovered a novel human retrovirus (very

closely related to HTLV 2, with Spuma-viruslike aspects) in C.F.I.D.S.

patients. This was subsequently confirmed by two other prominent

researchers (and a commercial laboratory).

Dr. DeFreitas was almost done sequencing its genes and published a

meticulous paper in a top journal. Then the Centers for Disease Control

and Prevention and the National Institutes of Health intentionally

destroyed her reputation because it did not mesh with their vigorous

assertions that C.F.I.D.S. was psychoneurosis. No one else has followed

this up for fear that their career might likewise be destroyed. This

was all detailed in the amazing book “Osler’s Web.â€

Is this the same virus as the “novel†XMRV?

Reilly

A.

Dr. Klimas responds:

Dr. DeFreitas was doing exciting work and should be congratulated

for her early results suggesting retroviral infection in C.F.S. Since

that time, technology has advanced in a dramatic way, giving

investigators new tools to search for viruses that were yet to be

identified in 1990-92, including the XMRV virus.

New antiviral drugs have also been developed that could potentially

be effective in controlling this sort of infection. We also have a much

stronger understanding of these drugs’ toxicity and safe use.

I congratulate the Whittemore Institute researchers for

their diligent work. I am also very happy for Elaine today. I would

also ask patients to be patient a little bit longer so that researchers

can devise and perform the sort of clinical trials that will let us

know if this virus is the linchpin in continued illness.

[Guest guest]

Guys

I have had several discussions on this topic and do not aim this inward. It is

common knowledge that these viruses can and often do skip one or more

generations, similar to fragile X. These are just baby steps in the process but

what we are going to get is OVER Big Farm supported government denial. The ball

is rolling, getting bigger daily and gaining speed. It is all about the dollars

now!

Bill

From: <thecolemans4@...>

Subject: Re: Was this retrovirus discovered in the early 90's.

Date: Friday, October 16, 2009, 10:44 AM

 

BTW - thought I might offend someone w/the previous comment

about choosing to not be angry. Not gonna tell anyone else how to feel about

it. One of the things that stand out to me in that TV interview was the comment

that the stress hormone cortisol makes this virus replicate quickly and stay

activated. I've spent way too much of my life in a state of stress and anxiety

and knew this makes me more ill. Right now, it has never been more clear

exactly why I need to continue working on managing my stress and anxiety.

Didn't want anyone to react thinking I was trying to tell anyone else whether

they should feel angry or not. Especially right now - with this coming out,

I suspect all of our buried anger and frustrations are going to pop out over and

over again as if they were just happening.

____________ _________ _________ __

From: <thecolemans4>

groups (DOT) com

Sent: Fri, October 16, 2009 8:27:49 AM

Subject: Re: Was this retrovirus discovered in the early 90's.

If it had been discovered, perhaps I would have known, having CFS &

Fibromyalgia, that I should not breastfeed, and possibly not pass it on to my

children, resulting in autism and CFS in them. Who knows. Children of HIV

positive moms can be born free of that virus with precautions.

Grrrrrr. But while that thought keeps popping into my mind, I think I'll pass

on anger for now and just be thrilled and optimistic.

____________ _________ _________ __

From: Jill Boyer <sjillboyer@ . com>

nids <nidsgroups (DOT) com>

Sent: Fri, October 16, 2009 8:06:08 AM

Subject: Was this retrovirus discovered in the early 90's.

Wow. I was rereading Dr. Klimas's answers to questions posed to her in the

New York Times. Someone asked about Dr. Elaine Freitas's work in the early 90's

where she discovered a new retrovirus (closely related to HLV2) and the NIH and

CDC shut down her research because it didn't mesh with their views that CFS is

psychoneurosis. Dr. did not answer the question directly but stated that

Elaine should be happy today and congratulated the Whittemore 's

institute on their great finding. This really bothers me that so many people had

to be sick because the top scientists at both the CDC and the NIH are so meshed

in their own views. I am just dumbfounded that scientists (of all people) can be

so closed minded. Here is the link:

http://consults. blogs.nytimes. com/2009/ 10/15/readers- ask-a-virus- linked-to-

chronic-fatigue- syndrome/

Was a C.F.S. Virus Discovered Years Ago?

Q.

Back in the early 1990s, Dr. Elaine DeFreitas at the Wistar

Institute in Philadelphia discovered a novel human retrovirus (very

closely related to HTLV 2, with Spuma-viruslike aspects) in C.F.I.D.S.

patients. This was subsequently confirmed by two other prominent

researchers (and a commercial laboratory).

Dr. DeFreitas was almost done sequencing its genes and published a

meticulous paper in a top journal. Then the Centers for Disease Control

and Prevention and the National Institutes of Health intentionally

destroyed her reputation because it did not mesh with their vigorous

assertions that C.F.I.D.S. was psychoneurosis. No one else has followed

this up for fear that their career might likewise be destroyed. This

was all detailed in the amazing book “Osler’s Web.â€

Is this the same virus as the “novel†XMRV?

Reilly

A.

Dr. Klimas responds:

Dr. DeFreitas was doing exciting work and should be congratulated

for her early results suggesting retroviral infection in C.F.S. Since

that time, technology has advanced in a dramatic way, giving

investigators new tools to search for viruses that were yet to be

identified in 1990-92, including the XMRV virus.

New antiviral drugs have also been developed that could potentially

be effective in controlling this sort of infection. We also have a much

stronger understanding of these drugs’ toxicity and safe use.

I congratulate the Whittemore Institute researchers for

their diligent work. I am also very happy for Elaine today. I would

also ask patients to be patient a little bit longer so that researchers

can devise and perform the sort of clinical trials that will let us

know if this virus is the linchpin in continued illness.

[Guest guest]

Please disregard this it was meant to be private!!!

From: <thecolemans4>

Subject: Re: Was this retrovirus discovered in the early 90's.

groups (DOT) com

Date: Friday, October 16, 2009, 10:44 AM

BTW - thought I might offend someone w/the previous comment about choosing to

not be angry. Not gonna tell anyone else how to feel about it. One of the

things that stand out to me in that TV interview was the comment that the stress

hormone cortisol makes this virus replicate quickly and stay activated. I've

spent way too much of my life in a state of stress and anxiety and knew this

makes me more ill. Right now, it has never been more clear exactly why I need

to continue working on managing my stress and anxiety.

Didn't want anyone to react thinking I was trying to tell anyone else whether

they should feel angry or not. Especially right now - with this coming out,

I suspect all of our buried anger and frustrations are going to pop out over and

over again as if they were just happening.

____________ _________ _________ __

From: <thecolemans4>

groups (DOT) com

Sent: Fri, October 16, 2009 8:27:49 AM

Subject: Re: Was this retrovirus discovered in the early 90's.

If it had been discovered, perhaps I would have known, having CFS &

Fibromyalgia, that I should not breastfeed, and possibly not pass it on to my

children, resulting in autism and CFS in them. Who knows. Children of HIV

positive moms can be born free of that virus with precautions.

Grrrrrr. But while that thought keeps popping into my mind, I think I'll pass

on anger for now and just be thrilled and optimistic.

____________ _________ _________ __

From: Jill Boyer <sjillboyer@ . com>

nids <nidsgroups (DOT) com>

Sent: Fri, October 16, 2009 8:06:08 AM

Subject: Was this retrovirus discovered in the early 90's.

Wow. I was rereading Dr. Klimas's answers to questions posed to her in the

New York Times. Someone asked about Dr. Elaine Freitas's work in the early 90's

where she discovered a new retrovirus (closely related to HLV2) and the NIH and

CDC shut down her research because it didn't mesh with their views that CFS is

psychoneurosis. Dr. did not answer the question directly but stated that

Elaine should be happy today and congratulated the Whittemore 's

institute on their great finding. This really bothers me that so many people had

to be sick because the top scientists at both the CDC and the NIH are so meshed

in their own views. I am just dumbfounded that scientists (of all people) can be

so closed minded. Here is the link:

http://consults. blogs.nytimes. com/2009/ 10/15/readers- ask-a-virus- linked-to-

chronic-fatigue- syndrome/

Was a C.F.S. Virus Discovered Years Ago?

Q.

Back in the early 1990s, Dr. Elaine DeFreitas at the Wistar

Institute in Philadelphia discovered a novel human retrovirus (very

closely related to HTLV 2, with Spuma-viruslike aspects) in C.F.I.D.S.

patients. This was subsequently confirmed by two other prominent

researchers (and a commercial laboratory).

Dr. DeFreitas was almost done sequencing its genes and published a

meticulous paper in a top journal. Then the Centers for Disease Control

and Prevention and the National Institutes of Health intentionally

destroyed her reputation because it did not mesh with their vigorous

assertions that C.F.I.D.S. was psychoneurosis. No one else has followed

this up for fear that their career might likewise be destroyed. This

was all detailed in the amazing book “Osler’s Web.â€

Is this the same virus as the “novel†XMRV?

Reilly

A.

Dr. Klimas responds:

Dr. DeFreitas was doing exciting work and should be congratulated

for her early results suggesting retroviral infection in C.F.S. Since

that time, technology has advanced in a dramatic way, giving

investigators new tools to search for viruses that were yet to be

identified in 1990-92, including the XMRV virus.

New antiviral drugs have also been developed that could potentially

be effective in controlling this sort of infection. We also have a much

stronger understanding of these drugs’ toxicity and safe use.

I congratulate the Whittemore Institute researchers for

their diligent work. I am also very happy for Elaine today. I would

also ask patients to be patient a little bit longer so that researchers

can devise and perform the sort of clinical trials that will let us

know if this virus is the linchpin in continued illness.

[Guest guest]

EXCELLENT advice! I’m going to go book a massage right now. It’s medically

necessary, after all -)

Kristy

PS: When I read the research last week, I felt like we had received a new

diagnosis. It was exhausting and emotionally draining, and at the same time,

very exciting because of the possibilities.

From: [mailto: ] On Behalf Of

Sent: Friday, October 16, 2009 7:44 AM

Subject: Re: Was this retrovirus discovered in the early 90's.

BTW - thought I might offend someone w/the previous comment about choosing to

not be angry. Not gonna tell anyone else how to feel about it. One of the

things that stand out to me in that TV interview was the comment that the stress

hormone cortisol makes this virus replicate quickly and stay activated. I've

spent way too much of my life in a state of stress and anxiety and knew this

makes me more ill. Right now, it has never been more clear exactly why I need

to continue working on managing my stress and anxiety.

Didn't want anyone to react thinking I was trying to tell anyone else whether

they should feel angry or not. Especially right now - with this coming out,

I suspect all of our buried anger and frustrations are going to pop out over and

over again as if they were just happening.

________________________________

From: <thecolemans4@... <mailto:thecolemans4%40>

>

<mailto:%40>

Sent: Fri, October 16, 2009 8:27:49 AM

Subject: Re: Was this retrovirus discovered in the early 90's.

If it had been discovered, perhaps I would have known, having CFS &

Fibromyalgia, that I should not breastfeed, and possibly not pass it on to my

children, resulting in autism and CFS in them. Who knows. Children of HIV

positive moms can be born free of that virus with precautions.

Grrrrrr. But while that thought keeps popping into my mind, I think I'll pass

on anger for now and just be thrilled and optimistic.

____________ _________ _________ __

From: Jill Boyer <sjillboyer (DOT) com>

nids <nidsgroups (DOT) com>

Sent: Fri, October 16, 2009 8:06:08 AM

Subject: Was this retrovirus discovered in the early 90's.

Wow. I was rereading Dr. Klimas's answers to questions posed to her in the

New York Times. Someone asked about Dr. Elaine Freitas's work in the early 90's

where she discovered a new retrovirus (closely related to HLV2) and the NIH and

CDC shut down her research because it didn't mesh with their views that CFS is

psychoneurosis. Dr. did not answer the question directly but stated that

Elaine should be happy today and congratulated the Whittemore 's

institute on their great finding. This really bothers me that so many people had

to be sick because the top scientists at both the CDC and the NIH are so meshed

in their own views. I am just dumbfounded that scientists (of all people) can be

so closed minded. Here is the link:

http://consults. blogs.nytimes. com/2009/ 10/15/readers- ask-a-virus- linked-to-

chronic-fatigue- syndrome/

Was a C.F.S. Virus Discovered Years Ago?

Q.

Back in the early 1990s, Dr. Elaine DeFreitas at the Wistar

Institute in Philadelphia discovered a novel human retrovirus (very

closely related to HTLV 2, with Spuma-viruslike aspects) in C.F.I.D.S.

patients. This was subsequently confirmed by two other prominent

researchers (and a commercial laboratory).

Dr. DeFreitas was almost done sequencing its genes and published a

meticulous paper in a top journal. Then the Centers for Disease Control

and Prevention and the National Institutes of Health intentionally

destroyed her reputation because it did not mesh with their vigorous

assertions that C.F.I.D.S. was psychoneurosis. No one else has followed

this up for fear that their career might likewise be destroyed. This

was all detailed in the amazing book “Osler’s Web.â€

Is this the same virus as the “novel†XMRV?

Reilly

A.

Dr. Klimas responds:

Dr. DeFreitas was doing exciting work and should be congratulated

for her early results suggesting retroviral infection in C.F.S. Since

that time, technology has advanced in a dramatic way, giving

investigators new tools to search for viruses that were yet to be

identified in 1990-92, including the XMRV virus.

New antiviral drugs have also been developed that could potentially

be effective in controlling this sort of infection. We also have a much

stronger understanding of these drugs’ toxicity and safe use.

I congratulate the Whittemore Institute researchers for

their diligent work. I am also very happy for Elaine today. I would

also ask patients to be patient a little bit longer so that researchers

can devise and perform the sort of clinical trials that will let us

know if this virus is the linchpin in continued illness.

[Guest guest]

LOL I think all of us need to go book a massage. It is the least we deserve

for working as hard as we do it to give our kiddos a better chance in life.

JR

From: knardini@...

Date: Fri, 16 Oct 2009 09:40:27 -0700

Subject: RE: Was this retrovirus discovered in the early 90's.

EXCELLENT advice! I’m going to go book a massage right now. It’s medically

necessary, after all -)

Kristy

PS: When I read the research last week, I felt like we had received a new

diagnosis. It was exhausting and emotionally draining, and at the same time,

very exciting because of the possibilities.

From: [mailto: ] On Behalf Of

Sent: Friday, October 16, 2009 7:44 AM

Subject: Re: Was this retrovirus discovered in the early 90's.

BTW - thought I might offend someone w/the previous comment about choosing to

not be angry. Not gonna tell anyone else how to feel about it. One of the things

that stand out to me in that TV interview was the comment that the stress

hormone cortisol makes this virus replicate quickly and stay activated. I've

spent way too much of my life in a state of stress and anxiety and knew this

makes me more ill. Right now, it has never been more clear exactly why I need to

continue working on managing my stress and anxiety.

Didn't want anyone to react thinking I was trying to tell anyone else whether

they should feel angry or not. Especially right now - with this coming out, I

suspect all of our buried anger and frustrations are going to pop out over and

over again as if they were just happening.

________________________________

From: <thecolemans4@... <mailto:thecolemans4%40>

>

<mailto:%40>

Sent: Fri, October 16, 2009 8:27:49 AM

Subject: Re: Was this retrovirus discovered in the early 90's.

If it had been discovered, perhaps I would have known, having CFS &

Fibromyalgia, that I should not breastfeed, and possibly not pass it on to my

children, resulting in autism and CFS in them. Who knows. Children of HIV

positive moms can be born free of that virus with precautions.

Grrrrrr. But while that thought keeps popping into my mind, I think I'll pass on

anger for now and just be thrilled and optimistic.

____________ _________ _________ __

From: Jill Boyer <sjillboyer (DOT) com>

nids <nidsgroups (DOT) com>

Sent: Fri, October 16, 2009 8:06:08 AM

Subject: Was this retrovirus discovered in the early 90's.

Wow. I was rereading Dr. Klimas's answers to questions posed to her in the

New York Times. Someone asked about Dr. Elaine Freitas's work in the early 90's

where she discovered a new retrovirus (closely related to HLV2) and the NIH and

CDC shut down her research because it didn't mesh with their views that CFS is

psychoneurosis. Dr. did not answer the question directly but stated that

Elaine should be happy today and congratulated the Whittemore 's

institute on their great finding. This really bothers me that so many people had

to be sick because the top scientists at both the CDC and the NIH are so meshed

in their own views. I am just dumbfounded that scientists (of all people) can be

so closed minded. Here is the link:

http://consults. blogs.nytimes. com/2009/ 10/15/readers- ask-a-virus- linked-to-

chronic-fatigue- syndrome/

Was a C.F.S. Virus Discovered Years Ago?

Q.

Back in the early 1990s, Dr. Elaine DeFreitas at the Wistar

Institute in Philadelphia discovered a novel human retrovirus (very

closely related to HTLV 2, with Spuma-viruslike aspects) in C.F.I.D.S.

patients. This was subsequently confirmed by two other prominent

researchers (and a commercial laboratory).

Dr. DeFreitas was almost done sequencing its genes and published a

meticulous paper in a top journal. Then the Centers for Disease Control

and Prevention and the National Institutes of Health intentionally

destroyed her reputation because it did not mesh with their vigorous

assertions that C.F.I.D.S. was psychoneurosis. No one else has followed

this up for fear that their career might likewise be destroyed. This

was all detailed in the amazing book “Osler’s Web.”

Is this the same virus as the “novel” XMRV?

Reilly

A.

Dr. Klimas responds:

Dr. DeFreitas was doing exciting work and should be congratulated

for her early results suggesting retroviral infection in C.F.S. Since

that time, technology has advanced in a dramatic way, giving

investigators new tools to search for viruses that were yet to be

identified in 1990-92, including the XMRV virus.

New antiviral drugs have also been developed that could potentially

be effective in controlling this sort of infection. We also have a much

stronger understanding of these drugs’ toxicity and safe use.

I congratulate the Whittemore Institute researchers for

their diligent work. I am also very happy for Elaine today. I would

also ask patients to be patient a little bit longer so that researchers

can devise and perform the sort of clinical trials that will let us

know if this virus is the linchpin in continued illness.

[Guest guest]

Oh, I am so ready for that massage. However, we still have a lot of work cut out

for us. We should all contact the NIH and the CDC to urge them to start funding

this research and go full throttle on it. I have already written the CDC and

this was their response:

" Thank you for your inquiry to CDC-INFO.  In response to your request

for information on austim and retovirus link to CFS, we are pleased to

provide you with the following information. 

The CDC

is non-regulatory, non-enforcement federal agency related to disease

investigation. The Centers for Disease Control and Prevention (CDC) can

only provide assistance to state investigators at the formal request of

state health departments.  As such, the first level of response for your

concerns is to contact your local or state health department.

A directory of state health departments is available online at:

http://www.cdc.gov/mmwr/international/relres.html

Thank you for contacting CDC-INFO Contact Center. Please do not hesitate to call

1-800-CDC-INFO, e-mail cdcinfo@... or visit http://www.cdc.gov if you have

any additional questions.   

CDC-INFO is a service of the Centers for Disease Control and Prevention (CDC)

and the Agency for Toxic Substances and Disease Registry (ATSDR).  This service

is provided by Vangent, Inc. under contract to CDC and ATSDR. "

I have already written the Ohio Dept. of Health but no response as of yet. One

more note, I wrote Autism Speaks as well. They do have money allocated for

research but I have not heard back from them.

All the best,

Jill

From: <jrodrig6605@...>

Subject: RE: Was this retrovirus discovered in the early 90's.

nids

Date: Friday, October 16, 2009, 1:53 PM

LOL  I think all of us need to go book a massage.  It is the least we deserve

for working as hard as we do it to give our kiddos a better chance in life.

JR

From: knardini@...

Date: Fri, 16 Oct 2009 09:40:27 -0700

Subject: RE: Was this retrovirus discovered in the early 90's.

 

EXCELLENT advice! I’m going to go book a massage right now. It’s medically

necessary, after all -)

Kristy

PS: When I read the research last week, I felt like we had received a new

diagnosis. It was exhausting and emotionally draining, and at the same time,

very exciting because of the possibilities.

From: [mailto: ] On Behalf Of

Sent: Friday, October 16, 2009 7:44 AM

Subject: Re: Was this retrovirus discovered in the early 90's.

BTW - thought I might offend someone w/the previous comment about choosing to

not be angry. Not gonna tell anyone else how to feel about it. One of the things

that stand out to me in that TV interview was the comment that the stress

hormone cortisol makes this virus replicate quickly and stay activated. I've

spent way too much of my life in a state of stress and anxiety and knew this

makes me more ill. Right now, it has never been more clear exactly why I need to

continue working on managing my stress and anxiety.

Didn't want anyone to react thinking I was trying to tell anyone else whether

they should feel angry or not. Especially right now - with this coming out, I

suspect all of our buried anger and frustrations are going to pop out over and

over again as if they were just

happening.

________________________________

From: <thecolemans4@... <mailto:thecolemans4%40>

>

<mailto:%40>

Sent: Fri, October 16, 2009 8:27:49 AM

Subject: Re: Was this retrovirus discovered in the early 90's.

If it had been discovered, perhaps I would have known, having CFS &

Fibromyalgia, that I should not breastfeed, and possibly not pass it on to my

children, resulting in autism and CFS in them. Who knows. Children of HIV

positive moms can be born free of that virus with precautions.

Grrrrrr. But while that thought keeps popping into my mind, I think I'll pass on

anger for now and just be thrilled and

optimistic.

____________ _________ _________ __

From: Jill Boyer <sjillboyer (DOT) com>

nids <nidsgroups (DOT) com>

Sent: Fri, October 16, 2009 8:06:08 AM

Subject: Was this retrovirus discovered in the early 90's.

Wow. I was rereading Dr. Klimas's answers to questions posed to her in the

New York Times. Someone asked about Dr. Elaine Freitas's work in the early 90's

where she discovered a new retrovirus (closely related to HLV2) and the NIH and

CDC shut down her research because it didn't mesh with their views that CFS is

psychoneurosis. Dr. did not answer the question directly but stated that

Elaine should be happy today and congratulated the Whittemore 's

institute on their great finding. This really bothers me that so many people had

to be sick because the top scientists at both the CDC and the NIH are so meshed

in their own views. I am just dumbfounded that scientists

(of all people) can be so closed minded. Here is the link:

http://consults. blogs.nytimes. com/2009/ 10/15/readers- ask-a-virus- linked-to-

chronic-fatigue- syndrome/

Was a C.F.S. Virus Discovered Years Ago?

Q.

Back in the early 1990s, Dr. Elaine DeFreitas at the Wistar

Institute in Philadelphia discovered a novel human retrovirus (very

closely related to HTLV 2, with Spuma-viruslike aspects) in C.F.I.D.S.

patients. This was subsequently confirmed by two other prominent

researchers (and a commercial laboratory).

Dr. DeFreitas was almost done sequencing its genes and published a

meticulous paper in a top journal. Then the Centers for Disease Control

and Prevention and the National Institutes of Health intentionally

destroyed her reputation because it did not mesh with their vigorous

assertions that C.F.I.D.S. was psychoneurosis. No one else has followed

this

up for fear that their career might likewise be destroyed. This

was all detailed in the amazing book “Osler’s Web.â€

Is this the same virus as the “novel†XMRV?

Reilly

A.

Dr. Klimas responds:

Dr. DeFreitas was doing exciting work and should be congratulated

for her early results suggesting retroviral infection in C.F.S. Since

that time, technology has advanced in a dramatic way, giving

investigators new tools to search for viruses that were yet to be

identified in 1990-92, including the XMRV virus.

New antiviral drugs have also been developed that could potentially

be effective in controlling this sort of infection. We also have a much

stronger understanding of these drugs’ toxicity and safe use.

I congratulate the Whittemore Institute researchers for

their diligent work. I am also very happy for Elaine today. I would

also ask patients to be patient a little bit longer so

that researchers

can devise and perform the sort of clinical trials that will let us

know if this virus is the linchpin in continued illness.

[Guest guest]

Jill,

The link below was given to me by a lady that is very involved with Autism

Speaks.

http://www.autismspeaks.org/science/index.php

JR

From: sjillboyer@...

Date: Fri, 16 Oct 2009 14:50:00 -0700

Subject: RE: Was this retrovirus discovered in the early 90's.

Oh, I am so ready for that massage. However, we still have a lot of work cut out

for us. We should all contact the NIH and the CDC to urge them to start funding

this research and go full throttle on it. I have already written the CDC and

this was their response:

" Thank you for your inquiry to CDC-INFO. In response to your request

for information on austim and retovirus link to CFS, we are pleased to

provide you with the following information.

The CDC

is non-regulatory, non-enforcement federal agency related to disease

investigation. The Centers for Disease Control and Prevention (CDC) can

only provide assistance to state investigators at the formal request of

state health departments. As such, the first level of response for your

concerns is to contact your local or state health department.

A directory of state health departments is available online at:

http://www.cdc.gov/mmwr/international/relres.html

Thank you for contacting CDC-INFO Contact Center. Please do not hesitate to call

1-800-CDC-INFO, e-mail cdcinfo@... or visit http://www.cdc.gov if you have

any additional questions.

CDC-INFO is a service of the Centers for Disease Control and Prevention (CDC)

and the Agency for Toxic Substances and Disease Registry (ATSDR). This service

is provided by Vangent, Inc. under contract to CDC and ATSDR. "

I have already written the Ohio Dept. of Health but no response as of yet. One

more note, I wrote Autism Speaks as well. They do have money allocated for

research but I have not heard back from them.

All the best,

Jill

From: <jrodrig6605@...>

Subject: RE: Was this retrovirus discovered in the early 90's.

nids

Date: Friday, October 16, 2009, 1:53 PM

LOL I think all of us need to go book a massage. It is the least we deserve

for working as hard as we do it to give our kiddos a better chance in life.

JR

From: knardini@...

Date: Fri, 16 Oct 2009 09:40:27 -0700

Subject: RE: Was this retrovirus discovered in the early 90's.

EXCELLENT advice! I’m going to go book a massage right now. It’s medically

necessary, after all -)

Kristy

PS: When I read the research last week, I felt like we had received a new

diagnosis. It was exhausting and emotionally draining, and at the same time,

very exciting because of the possibilities.

From: [mailto: ] On Behalf Of

Sent: Friday, October 16, 2009 7:44 AM

Subject: Re: Was this retrovirus discovered in the early 90's.

BTW - thought I might offend someone w/the previous comment about choosing to

not be angry. Not gonna tell anyone else how to feel about it. One of the things

that stand out to me in that TV interview was the comment that the stress

hormone cortisol makes this virus replicate quickly and stay activated. I've

spent way too much of my life in a state of stress and anxiety and knew this

makes me more ill. Right now, it has never been more clear exactly why I need to

continue working on managing my stress and anxiety.

Didn't want anyone to react thinking I was trying to tell anyone else whether

they should feel angry or not. Especially right now - with this coming out, I

suspect all of our buried anger and frustrations are going to pop out over and

over again as if they were just

happening.

________________________________

From: <thecolemans4@... <mailto:thecolemans4%40>

>

<mailto:%40>

Sent: Fri, October 16, 2009 8:27:49 AM

Subject: Re: Was this retrovirus discovered in the early 90's.

If it had been discovered, perhaps I would have known, having CFS &

Fibromyalgia, that I should not breastfeed, and possibly not pass it on to my

children, resulting in autism and CFS in them. Who knows. Children of HIV

positive moms can be born free of that virus with precautions.

Grrrrrr. But while that thought keeps popping into my mind, I think I'll pass on

anger for now and just be thrilled and

optimistic.

____________ _________ _________ __

From: Jill Boyer <sjillboyer (DOT) com>

nids <nidsgroups (DOT) com>

Sent: Fri, October 16, 2009 8:06:08 AM

Subject: Was this retrovirus discovered in the early 90's.

Wow. I was rereading Dr. Klimas's answers to questions posed to her in the

New York Times. Someone asked about Dr. Elaine Freitas's work in the early 90's

where she discovered a new retrovirus (closely related to HLV2) and the NIH and

CDC shut down her research because it didn't mesh with their views that CFS is

psychoneurosis. Dr. did not answer the question directly but stated that

Elaine should be happy today and congratulated the Whittemore 's

institute on their great finding. This really bothers me that so many people had

to be sick because the top scientists at both the CDC and the NIH are so meshed

in their own views. I am just dumbfounded that scientists

(of all people) can be so closed minded. Here is the link:

http://consults. blogs.nytimes. com/2009/ 10/15/readers- ask-a-virus- linked-to-

chronic-fatigue- syndrome/

Was a C.F.S. Virus Discovered Years Ago?

Q.

Back in the early 1990s, Dr. Elaine DeFreitas at the Wistar

Institute in Philadelphia discovered a novel human retrovirus (very

closely related to HTLV 2, with Spuma-viruslike aspects) in C.F.I.D.S.

patients. This was subsequently confirmed by two other prominent

researchers (and a commercial laboratory).

Dr. DeFreitas was almost done sequencing its genes and published a

meticulous paper in a top journal. Then the Centers for Disease Control

and Prevention and the National Institutes of Health intentionally

destroyed her reputation because it did not mesh with their vigorous

assertions that C.F.I.D.S. was psychoneurosis. No one else has followed

this

up for fear that their career might likewise be destroyed. This

was all detailed in the amazing book “Osler’s Web.”

Is this the same virus as the “novel” XMRV?

Reilly

A.

Dr. Klimas responds:

Dr. DeFreitas was doing exciting work and should be congratulated

for her early results suggesting retroviral infection in C.F.S. Since

that time, technology has advanced in a dramatic way, giving

investigators new tools to search for viruses that were yet to be

identified in 1990-92, including the XMRV virus.

New antiviral drugs have also been developed that could potentially

be effective in controlling this sort of infection. We also have a much

stronger understanding of these drugs’ toxicity and safe use.

I congratulate the Whittemore Institute researchers for

their diligent work. I am also very happy for Elaine today. I would

also ask patients to be patient a little bit longer so

that researchers

can devise and perform the sort of clinical trials that will let us

know if this virus is the linchpin in continued illness.

[Guest guest]

They basically say nothing on that web site, unless I'm missing something.

Kristy

Was this retrovirus discovered in the early 90's.

Wow. I was rereading Dr. Klimas's answers to questions posed to her in

the New York Times. Someone asked about Dr. Elaine Freitas's work in the

early 90's where she discovered a new retrovirus (closely related to HLV2)

and the NIH and CDC shut down her research because it didn't mesh with their

views that CFS is psychoneurosis. Dr. did not answer the question

directly but stated that Elaine should be happy today and congratulated the

Whittemore 's institute on their great finding. This really bothers

me that so many people had to be sick because the top scientists at both the

CDC and the NIH are so meshed in their own views. I am just dumbfounded that

scientists

(of all people) can be so closed minded. Here is the link:

http://consults. blogs.nytimes. com/2009/ 10/15/readers- ask-a-virus-

linked-to- chronic-fatigue- syndrome/

Was a C.F.S. Virus Discovered Years Ago?

Q.

Back in the early 1990s, Dr. Elaine DeFreitas at the Wistar

Institute in Philadelphia discovered a novel human retrovirus (very

closely related to HTLV 2, with Spuma-viruslike aspects) in C.F.I.D.S.

patients. This was subsequently confirmed by two other prominent

researchers (and a commercial laboratory).

Dr. DeFreitas was almost done sequencing its genes and published a

meticulous paper in a top journal. Then the Centers for Disease Control

and Prevention and the National Institutes of Health intentionally

destroyed her reputation because it did not mesh with their vigorous

assertions that C.F.I.D.S. was psychoneurosis. No one else has followed

this

up for fear that their career might likewise be destroyed. This

was all detailed in the amazing book " Osler's Web. "

Is this the same virus as the " novel " XMRV?

Reilly

A.

Dr. Klimas responds:

Dr. DeFreitas was doing exciting work and should be congratulated

for her early results suggesting retroviral infection in C.F.S. Since

that time, technology has advanced in a dramatic way, giving

investigators new tools to search for viruses that were yet to be

identified in 1990-92, including the XMRV virus.

New antiviral drugs have also been developed that could potentially

be effective in controlling this sort of infection. We also have a much

stronger understanding of these drugs' toxicity and safe use.

I congratulate the Whittemore Institute researchers for

their diligent work. I am also very happy for Elaine today. I would

also ask patients to be patient a little bit longer so

that researchers

can devise and perform the sort of clinical trials that will let us

know if this virus is the linchpin in continued illness.

[Guest guest]

I sent an email to this email address: research@... on the 9 of

October and I have not even received a response. I have not seen anything on

their website regarding the XMRV virus.

I did write Safeminds yesterday and I received a response within 30 minutes from

Kilpatrick and she said " Thanks. We are keeping an eye on this " . I

know Safeminds is an autism group that concentrates on thimersol but I am sure

many of them have open minds. I have spoken to AGRE as well (Autism Research

Genomic Exchange) and they are also looking into the XMRV virus as well. They

have lots of blood samples for their DNA/RNA projects but they said they need

" fresh " blood to test for the retrovirus. I am in the process of writing Dr.

Eaton at s Hopkins. He just wrote a paper recently regarding the

higher rate of autoimmune disease in the mother leads to a higher rate of

autism. The article is here:

http://tinyurl.com/yh62d6b

All the best,

Jill

From: <jrodrig6605@ hotmail.com>

Subject: RE: Was this retrovirus discovered in the early 90's.

nidsgroups (DOT) com

Date: Friday, October 16, 2009, 1:53 PM

LOL I think all of us need to go book a massage. It is the least we

deserve for working as hard as we do it to give our kiddos a better chance

in life.

JR

groups (DOT) com

From: knardini@roadrunner .com

Date: Fri, 16 Oct 2009 09:40:27 -0700

Subject: RE: Was this retrovirus discovered in the early 90's.

EXCELLENT advice! I'm going to go book a massage right now. It's medically

necessary, after all -)

Kristy

PS: When I read the research last week, I felt like we had received a new

diagnosis. It was exhausting and emotionally draining, and at the same time,

very exciting because of the possibilities.

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Sent: Friday, October 16, 2009 7:44 AM

groups (DOT) com

Subject: Re: Was this retrovirus discovered in the early 90's.

BTW - thought I might offend someone w/the previous comment about choosing

to not be angry. Not gonna tell anyone else how to feel about it. One of the

things that stand out to me in that TV interview was the comment that the

stress hormone cortisol makes this virus replicate quickly and stay

activated. I've spent way too much of my life in a state of stress and

anxiety and knew this makes me more ill. Right now, it has never been more

clear exactly why I need to continue working on managing my stress and

anxiety.

Didn't want anyone to react thinking I was trying to tell anyone else

whether they should feel angry or not. Especially right now - with this

coming out, I suspect all of our buried anger and frustrations are going to

pop out over and over again as if they were just

happening.

____________ _________ _________ __

From: <thecolemans4

<mailto:thecolemans 4%40. com> >

groups (DOT) com <mailto:% 40groups. com>

Sent: Fri, October 16, 2009 8:27:49 AM

Subject: Re: Was this retrovirus discovered in the early 90's.

If it had been discovered, perhaps I would have known, having CFS &

Fibromyalgia, that I should not breastfeed, and possibly not pass it on to

my children, resulting in autism and CFS in them. Who knows. Children of HIV

positive moms can be born free of that virus with precautions.

Grrrrrr. But while that thought keeps popping into my mind, I think I'll

pass on anger for now and just be thrilled and

optimistic.

____________ _________ _________ __

From: Jill Boyer <sjillboyer@ . com>

nids <nidsgroups (DOT) com>

Sent: Fri, October 16, 2009 8:06:08 AM

Subject: Was this retrovirus discovered in the early 90's.

Wow. I was rereading Dr. Klimas's answers to questions posed to her in

the New York Times. Someone asked about Dr. Elaine Freitas's work in the

early 90's where she discovered a new retrovirus (closely related to HLV2)

and the NIH and CDC shut down her research because it didn't mesh with their

views that CFS is psychoneurosis. Dr. did not answer the question

directly but stated that Elaine should be happy today and congratulated the

Whittemore 's institute on their great finding. This really bothers

me that so many people had to be sick because the top scientists at both the

CDC and the NIH are so meshed in their own views. I am just dumbfounded that

scientists

(of all people) can be so closed minded. Here is the link:

http://consults. blogs.nytimes. com/2009/ 10/15/readers- ask-a-virus-

linked-to- chronic-fatigue- syndrome/

Was a C.F.S. Virus Discovered Years Ago?

Q.

Back in the early 1990s, Dr. Elaine DeFreitas at the Wistar

Institute in Philadelphia discovered a novel human retrovirus (very

closely related to HTLV 2, with Spuma-viruslike aspects) in C.F.I.D.S.

patients. This was subsequently confirmed by two other prominent

researchers (and a commercial laboratory).

Dr. DeFreitas was almost done sequencing its genes and published a

meticulous paper in a top journal. Then the Centers for Disease Control

and Prevention and the National Institutes of Health intentionally

destroyed her reputation because it did not mesh with their vigorous

assertions that C.F.I.D.S. was psychoneurosis. No one else has followed

this

up for fear that their career might likewise be destroyed. This

was all detailed in the amazing book " Osler's Web. "

Is this the same virus as the " novel " XMRV?

Reilly

A.

Dr. Klimas responds:

Dr. DeFreitas was doing exciting work and should be congratulated

for her early results suggesting retroviral infection in C.F.S. Since

that time, technology has advanced in a dramatic way, giving

investigators new tools to search for viruses that were yet to be

identified in 1990-92, including the XMRV virus.

New antiviral drugs have also been developed that could potentially

be effective in controlling this sort of infection. We also have a much

stronger understanding of these drugs' toxicity and safe use.

I congratulate the Whittemore Institute researchers for

their diligent work. I am also very happy for Elaine today. I would

also ask patients to be patient a little bit longer so

that researchers

can devise and perform the sort of clinical trials that will let us

know if this virus is the linchpin in continued illness.