XMRV

[Guest guest]

Lyme has already changed my DNA, heck it's a part of me. I am going to find out

about my options with XMRV anyway controversial (sp?) Or not.

My dad died of AIDS in 1986 when it was just controversial and he died. I have

been told that I am infected with both bacteria and viruses.

Eighteen years is too long. I don't just jump into things, I research and then

research again. This is why I feel that within the next couple of years I want

to heal, may not get cured - but will have quality of life.

Have a good day!

[ ] XMRV

>

> I'm hoping to offer myself as a lab rat for any clinical trials. They (people

infected with CFS) call XMRV the second HIV epidemic. Whittmore

Institute will have antivirals next year! That will help a lot of us who have

both.

you probably know that the XMRV /CFS link is controversial? And even if there is

a strong link, it will be difficult to prove if it is cause or effect.

P.S.: all the pathogenic Borrelia have a built-in 'prophage' than can transfer

into a virus (e.g. when using drugs like flagyl/metronidazole). The Bb prophage

has some properties that are similar to those from retroviruses, e.g. it could

accidentally change human DNA. I don't know if this prophage is a factor in Lyme

disease, but it could be.

[Guest guest]

What is XMRV? I am ignorant on this one. Maud

On Aug 20, 2010, at 4:12 AM, knot_weed wrote:

>

>

>

> >

>

> > I'm hoping to offer myself as a lab rat for any clinical trials. They

(people infected with CFS) call XMRV the second HIV epidemic. Whittmore

Institute will have antivirals next year! That will help a lot of us who have

both.

>

> you probably know that the XMRV /CFS link is controversial? And even if there

is a strong link, it will be difficult to prove if it is cause or effect.

>

> P.S.: all the pathogenic Borrelia have a built-in 'prophage' than can transfer

into a virus (e.g. when using drugs like flagyl/metronidazole). The Bb prophage

has some properties that are similar to those from retroviruses, e.g. it could

accidentally change human DNA. I don't know if this prophage is a factor in Lyme

disease, but it could be.

>

>

[Guest guest]

>

> What is XMRV? I am ignorant on this one. Maud

it is a retrovirus that is said to be associated with CFS. However, the link is

controversial (some research groups could not find XMRV in CFS patients).

And even if the link is proven by indenpendent reserach, it does not mean that

XMRV is the cause of CFS. It may well be that it is a virus that only thrives

in immune-compromised people, like those with CFS or Lymies. Because of this, it

would be interesting to test some proven Lyme patients for XMRV.

[Guest guest]

Hi,

XMRV was first discovered in advanced Prostate Cancer then it was discovered in

Chronic fatigue patients. The reason they (other labs in other counties) didn't

find it was because the controls were not followed.

The FDA will be publishing a paper on THEIR findings on XMRV since they did

replicate the XMRV retrovirus. A lot of people infected with CFS and Lyme refer

to this as a second HIV epidemic.

If you have CFS in Canada, Australia and New Zealand you are banned from

donating blood. That is what is going to move this disease to the for front.

I went to their grand opening yesterday at the only XMRV facility in the world

that are going to treat sick people. It is in Reno Nevada.

To see all those sick people, was sad. I was bedridden for seven years with

CFS/Fibro. Controversial or not, people sick with CFS will be able to get their

antivirals sometime next year!

Jeannie

Have a good day!

[ ] Re: XMRV

>

> What is XMRV? I am ignorant on this one. Maud

it is a retrovirus that is said to be associated with CFS. However, the link is

controversial (some research groups could not find XMRV in CFS patients).

And even if the link is proven by indenpendent reserach, it does not mean that

XMRV is the cause of CFS. It may well be that it is a virus that only thrives

in immune-compromised people, like those with CFS or Lymies. Because of this, it

would be interesting to test some proven Lyme patients for XMRV.

[Guest guest]

>

> The FDA will be publishing a paper on THEIR findings on XMRV since they did

replicate the XMRV retrovirus. A lot of people infected with CFS and Lyme refer

to this as a second HIV epidemic.

>

You probably know that this FDA study is controversial as well. I think it is

WAY too early to jump to conclusions regarding XMRV as the (single) cause of

CFS. We have had very similar stories (e.g. around EBV) with CFS in the past,

nothing came out of that.

[Guest guest]

Mr. Knot weed,

Yes it's controversial. But just because it is controversial doesn't mean that

we cannot hope for this to be our hope to heal.

The reason this is nothing like EBV which I have and is active is because EBV

won't be an issue with our blood supply.

XMRV is a danger to our blood supply! Since that is the case, this is much more

like HIV than EBV.

Whether it's controversial or not, it is exciting for those of us that are sick

with multitude of illnesses. Don't take away hope, by saying it's

controversial. That is all we have to hang onto. Hope.

I was bedridden for seven years with CFS/Lyme/Fibro. Was told to live with

" it " , no hope was given. Now we have hope. I spoke to researchers and doctors

at the Whittmore Institute and the president of the University of

Nevada, Reno. Took a tour of their labs and if you weren't there, there is no

way you would know what is coming in the way of treatment.

I suggest that anyone interested in this subject google it. Then decide how

controversial it is. I think it is good that there is controversy about this

because that means they are working on this horrible illness.

Have a good day!

[ ] Re: XMRV

>

> The FDA will be publishing a paper on THEIR findings on XMRV since they did

replicate the XMRV retrovirus. A lot of people infected with CFS and Lyme refer

to this as a second HIV epidemic.

>

You probably know that this FDA study is controversial as well. I think it is

WAY too early to jump to conclusions regarding XMRV as the (single) cause of

CFS. We have had very similar stories (e.g. around EBV) with CFS in the past,

nothing came out of that.

[Guest guest]

Regarding XMRV,

For anyone interested on this subject, here is a link for information regarding

the XMRV article that brought all this controversy about.

http://en.m.wikipedia.org/wiki/Whittemore__Institute?wasRedirected=true

Have a good day!

[Guest guest]

Jeannie,

I agree with you 1000%

Stick to your guns........

Jay

[ ] Re: XMRV

>

> The FDA will be publishing a paper on THEIR findings on XMRV since they did

replicate the XMRV retrovirus. A lot of people infected with CFS and Lyme refer

to this as a second HIV epidemic.

>

You probably know that this FDA study is controversial as well. I think it is

WAY too early to jump to conclusions regarding XMRV as the (single) cause of

CFS. We have had very similar stories (e.g. around EBV) with CFS in the past,

nothing came out of that.

[Guest guest]

Ok.....so how do we get tested and could it be sexually transmitted? I have not

been able to find literature that said anything convincing. Although there was

an article today in WSJ and NYT. I understand the threat to the blood supply.

Scary stuff. My CFS got worse 4 years ago after a blood transfusion. Always

thought that was weird.

Monty

Sent via BlackBerry by AT & T

Re: [ ] Re: XMRV

Jeannie,

I agree with you 1000%

Stick to your guns........

Jay

[ ] Re: XMRV

>

> The FDA will be publishing a paper on THEIR findings on XMRV since they did

replicate the XMRV retrovirus. A lot of people infected with CFS and Lyme refer

to this as a second HIV epidemic.

>

You probably know that this FDA study is controversial as well. I think it is

WAY too early to jump to conclusions regarding XMRV as the (single) cause of

CFS. We have had very similar stories (e.g. around EBV) with CFS in the past,

nothing came out of that.

[Guest guest]

Jay thank you, I needed that!

Jeannie

Have a good day!

Re: [ ] Re: XMRV

Jeannie,

I agree with you 1000%

Stick to your guns........

Jay

[ ] Re: XMRV

>

> The FDA will be publishing a paper on THEIR findings on XMRV since they did

replicate the XMRV retrovirus. A lot of people infected with CFS and Lyme refer

to this as a second HIV epidemic.

>

You probably know that this FDA study is controversial as well. I think it is

WAY too early to jump to conclusions regarding XMRV as the (single) cause of

CFS. We have had very similar stories (e.g. around EBV) with CFS in the past,

nothing came out of that.

[Guest guest]

Hi Monty,

I just emailed the WPI and asked them that question and how much it will cost.

As for this being sexually transmitted, it is just my opinion but I think that

part is it might be transmitted a lot like HIV.

Don't share razors, or utensils. Watch out for cuts. I am being extra careful

for the time being.

My dad died of AIDS, I learned a lot from that experience. When I get more

info, I will pass it on.

If you check out XMRV Global Action on Facebook - great info there. Also,

www.youtube.com has some videos that address this too.

It's so new and rapidly developing that it takes time to get it sorted out.

There is going to be a First Annual conference on XMRV on Sept. 7th with all the

agencies, researchers, scientists and doctors (forget the state think it's in

DC).

I believe we will know more towards the end of the year.

I also had issues when I had my surgery, that my CFS/Lyme/Fibro went crazy on me

and out of control, thus my seven years in bed. Weird!

Take care,

Jeannie

-------------------------------------------------------

Ok.....so how do we get tested and could it be sexually transmitted? I have not

been able to find literature that said anything convincing. Although there was

an article today in WSJ and NYT. I understand the threat to the blood supply.

Scary stuff. My CFS got worse 4 years ago after a blood transfusion. Always

thought that was weird.

Monty

Sent via BlackBerry by AT & T

Have a good day!

[Guest guest]

>

> Mr. Knot weed,

> XMRV is a danger to our blood supply! Since that is the case, this is much

more like HIV than EBV.

nobody knows if XMRV is a serious danger at this point.

> I spoke to researchers and doctors at the Whittmore Institute and the

president of the University of Nevada, Reno. Took a tour of their labs and if

you weren't there, there is no way you would know what is coming in the way of

treatment.

I follow all the scientific articles about the subject (don't just google

because you get lots of 'PR' type info, check PubMed for some more solid data).

I think this private institute is doing interesting work, seems they can move at

higher speed that most governmental/institutional research groups.

However, if you check all the scientific articles 'highly controversial' is a

good description.

[Guest guest]

I generally lurk on this list, but I have Lyme/fibro/CFS as well. This

retrovirus news is a huge step forward for us in many ways. I can best

illustrate what I mean by telling a story about schizophrenia. When I was a

young nurse working with psych patients, I saw lots of schizophrenics. At the

time, it was considered a purely mental illness NOT the severe neurological

illness we now know it is. But I knew as I watched patient after patient, with

different and unique delusions, yes, but who in many many other respects looked

so much alike, that these people were suffering from the same physiologically

based disorder. In my mind I was saying, " There's something much bigger than

'mother issues' going on here. "

It is the same for the invisible fatigue based illnesses. Yes, the blood tests,

the symptoms, the treatments that offer some relief are as unique as each

individual (thank God for andrographis), but I KNOW that all of this comes from

the same root problem. We have now moved from " yuppie disease " to " YIKES! This

could be serious. It's in the blood banks now. " That gives me hope that intense

attention will be paid to the illnesses that have stolen our lives and have

caused us so much heartache because we are looked upon like those schizophrenics

once were.

We are not crazy, there is a reason why we are sick--but it is very complicated.

We are dealing with the brain, after all. So listen to your heart and believe

that someone, somewhere will now have enough research money to find the

answer--and treatments that will work for ALL of us.

Leann Sweeney

www.leannsweeney.com

>

> Mr. Knot weed,

>

> Yes it's controversial. But just because it is controversial doesn't mean

that we cannot hope for this to be our hope to heal.

>

> The reason this is nothing like EBV which I have and is active is because EBV

won't be an issue with our blood supply.

>

> XMRV is a danger to our blood supply! Since that is the case, this is much

more like HIV than EBV.

>

> Whether it's controversial or not, it is exciting for those of us that are

sick with multitude of illnesses. Don't take away hope, by saying it's

controversial. That is all we have to hang onto. Hope.

>

> I was bedridden for seven years with CFS/Lyme/Fibro. Was told to live with

" it " , no hope was given. Now we have hope. I spoke to researchers and doctors

at the Whittmore Institute and the president of the University of

Nevada, Reno. Took a tour of their labs and if you weren't there, there is no

way you would know what is coming in the way of treatment.

>

> I suggest that anyone interested in this subject google it. Then decide how

controversial it is. I think it is good that there is controversy about this

because that means they are working on this horrible illness.

>

> Have a good day!

>

[Guest guest]

Mr. K,

Well this ought to put a feather in that cap of yours.... The FDA yesterday

released that there is a second mouse retrovirus that has been found in CFS

patients!

A second MOUSE virus... Now that's controversial!!! I wonder what " they " will

keep finding. Maybe a darn good reason why we are so sick and maybe some

antivirals to treat us with.

Keep watching... never know what else.......

J

Have a good day!

[ ] Re: XMRV

>

> Mr. Knot weed,

> XMRV is a danger to our blood supply! Since that is the case, this is much

more like HIV than EBV.

nobody knows if XMRV is a serious danger at this point.

> I spoke to researchers and doctors at the Whittmore Institute and the

president of the University of Nevada, Reno. Took a tour of their labs and if

you weren't there, there is no way you would know what is coming in the way of

treatment.

I follow all the scientific articles about the subject (don't just google

because you get lots of 'PR' type info, check PubMed for some more solid data).

I think this private institute is doing interesting work, seems they can move at

higher speed that most governmental/institutional research groups.

However, if you check all the scientific articles 'highly controversial' is a

good description.

[Guest guest]

Took a tour of their labs and if you weren't there, there is no way you would

know what is coming in the way of treatment.

Hi Jeannie;

What did you learn about upcoming treatments?

shannah

[Guest guest]

Hi Shannah,

The researchers at the WPI told me that with the conference taking place next

month on the 7th & 8th (first conference ever) that they feel by Christmas they

should all be on the same page.

The drug should be available next year is what one researcher said and that

Ampligen is one that is being considered as well as testing some existing HIV

drugs, although these are hard on the stomach of immune compromised patients.

Didn't have much time as the tour was moving through. I would just go to the

end of the line and try to talk privately to the doctors and researchers.

That is about it. Controversial or not I really feel that this facility is

going to move things along. Because this isn't just for CFS it's also for the

Gulf War Syndrome too.

Jeannie

Have a good day!

[ ] Re: XMRV

Took a tour of their labs and if you weren't there, there is no way you would

know what is coming in the way of treatment.

Hi Jeannie;

What did you learn about upcoming treatments?

shannah

[Guest guest]

>

> Mr. K,

>

> Well this ought to put a feather in that cap of yours.... The FDA yesterday

released that there is a second mouse retrovirus that has been found in CFS

patients!

I get the impression that you don't have any experience in the bio/medical

field... you are jumping to unfounded conclusions.

Just wondering, which of the two is causing CFS? Are they both causing CFS??

[Guest guest]

>

> We are not crazy, there is a reason why we are sick--but it is very

complicated.

yes, it IS complicated. It is definitely NOT just one virus that is causing all

these diseases. There are probably many factors involved.

There is NO proof at all that XMRV causes CFS, there is not even definite proof

that the two are associated.

[Guest guest]

Hi Leann,

Very well said!  Thank you for posting that and coming out of the shadow.  I

used to lurk, but have become my best health advocate. I have been sick for 18

years and at first it was so difficult (no internet to find out information),

but now with the internet there is no limit to what you can learn. 

I have lost my 20 year marriage, my job and a few times almost my life.  I am

here today because people like you show support and help others, either by your

views or advice or just by being there.  This is the most lonely illness that I

wouldn't wish on anyone.

I'm sorry you are sick, but maybe just maybe within a couple of years at most,

we will be feeling better.  I was told there was no healing or cure from this

illness, I never believed it and I never will - guess it's that gut feeling

again.

Well wishes to you Leann,

Jeannie

________________________________

From: Leann <leann_sweeney@...>

Sent: Tue, August 24, 2010 7:00:15 AM

Subject: [ ] Re: XMRV

 

I generally lurk on this list, but I have Lyme/fibro/CFS as well. This

retrovirus news is a huge step forward for us in many ways. I can best

illustrate what I mean by telling a story about schizophrenia. When I was a

young nurse working with psych patients, I saw lots of schizophrenics. At the

time, it was considered a purely mental illness NOT the severe neurological

illness we now know it is. But I knew as I watched patient after patient, with

different and unique delusions, yes, but who in many many other respects looked

so much alike, that these people were suffering from the same physiologically

based disorder. In my mind I was saying, " There's something much bigger than

'mother issues' going on here. "

It is the same for the invisible fatigue based illnesses. Yes, the blood tests,

the symptoms, the treatments that offer some relief are as unique as each

individual (thank God for andrographis), but I KNOW that all of this comes from

the same root problem. We have now moved from " yuppie disease " to " YIKES! This

could be serious. It's in the blood banks now. " That gives me hope that intense

attention will be paid to the illnesses that have stolen our lives and have

caused us so much heartache because we are looked upon like those schizophrenics

once were.

We are not crazy, there is a reason why we are sick--but it is very complicated.

We are dealing with the brain, after all. So listen to your heart and believe

that someone, somewhere will now have enough research money to find the

answer--and treatments that will work for ALL of us.

Leann Sweeney

www.leannsweeney.com

[Guest guest]

Mr. K,

You are right, I don't have ANY experience in those fields.  My experience

comes from living with this crappy illness for almost 20 years.  And because I

don't have that EXPERIENCE, how the heck do I a lay person know what causes

CFS - when the scientist themselves are sure?  If I would have know what

causes

CFS, I'd be a rich woman.

What is your beef?

Jeannie

________________________________

From: knot_weed <tek0nik@...>

Sent: Tue, August 24, 2010 10:31:14 AM

Subject: [ ] Re: XMRV

 

>

> Mr. K,

>

> Well this ought to put a feather in that cap of yours.... The FDA yesterday

>released that there is a second mouse retrovirus that has been found in CFS

>patients!

I get the impression that you don't have any experience in the bio/medical

field... you are jumping to unfounded conclusions.

Just wondering, which of the two is causing CFS? Are they both causing CFS??

[Guest guest]

XMRV....Front page of WALL STREET JOURNAL!!

Jay

[ ] Re: XMRV

>

> Mr. K,

>

> Well this ought to put a feather in that cap of yours.... The FDA yesterday

released that there is a second mouse retrovirus that has been found in CFS

patients!

I get the impression that you don't have any experience in the bio/medical

field... you are jumping to unfounded conclusions.

Just wondering, which of the two is causing CFS? Are they both causing CFS??

[Guest guest]

Hey Jay,

Thanks for posting that... Very interesting...

Jeannie

Have a good day!

Re: [ ] Re: XMRV

XMRV....Front page of WALL STREET JOURNAL!!

Jay

[ ] Re: XMRV

>

> Mr. K,

>

> Well this ought to put a feather in that cap of yours.... The FDA yesterday

released that there is a second mouse retrovirus that has been found in CFS

patients!

I get the impression that you don't have any experience in the bio/medical

field... you are jumping to unfounded conclusions.

Just wondering, which of the two is causing CFS? Are they both causing CFS??

[Guest guest]

> What is your beef?

apparently my message is not coming across so I'm repeating it here:

you are jumping to unfounded conclusions, in many ways.

The association between XMRV and CFS is NOT proven, there are just two US

studies that find some link (not very convincing IMHO), while several other

European studies found NO link.

No researcher can claim that XMRV causes CFS, there is ZERO proof of that.

Apparently the Institute is making some suggestions in that direction, but that

is skating on very thin ice, to say the least.

" Even if subsequent studies con & #64257;rm an association between MLV-like

viruses and CFS, that will not establish a causal role for these viruses in the

pathogenesis of this illness. "

There is a thread on Lymenet about the subject, with some good info (e.g. the

replies from Tincup; as usual there are also some replies that are total

scientific nonsense).

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/98216

Again, from all previous research about CFS is is HIGHLY UNLIKELY that there is

one single cause. And keep in mind that effective anti-retroviral drugs are

often dangerous; even if XMRV is part of the problem (not the same as 'the'

cause) in CFS, getting rid of it may be a challenge.

[Guest guest]

I am remaining optimistic even though, of course, the 'cause' of cfids may not

be XMRV. It is movement! After 17 years of the useless diagnosis of cifds, I was

finally diagnosed with lyme and company. Since treating for nearly 4 years, I've

improved a lot. But I'm still quite disabled, and had much less 'stamina' than

most even before I got really sick. So if another agent 'might' be associated

with my condition, I'm all for the research. Something is finally being

researched and that's good news for those of us who have waited for 20 years for

someone to pay attention. There might be herbals or other non-pharmalogical

agents that affect the virus. At least researchers are looking.

The European studies did not use the correct procedure. That is why their

results did not show the virus.

Early research - of course there will be controversy. But for those of us who

are sick, its good news!!! jo

>

> > What is your beef?

>

> apparently my message is not coming across so I'm repeating it here:

>

> you are jumping to unfounded conclusions, in many ways.

>

> The association between XMRV and CFS is NOT proven, there are just two US

studies that find some link (not very convincing IMHO), while several other

European studies found NO link.

>

> No researcher can claim that XMRV causes CFS, there is ZERO proof of that.

Apparently the Institute is making some suggestions in that direction, but that

is skating on very thin ice, to say the least.

>

> " Even if subsequent studies con & #64257;rm an association between MLV-like

viruses and CFS, that will not establish a causal role for these viruses in the

pathogenesis of this illness. "

>

> There is a thread on Lymenet about the subject, with some good info (e.g. the

replies from Tincup; as usual there are also some replies that are total

scientific nonsense).

> http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/98216

>

> Again, from all previous research about CFS is is HIGHLY UNLIKELY that there

is one single cause. And keep in mind that effective anti-retroviral drugs are

often dangerous; even if XMRV is part of the problem (not the same as 'the'

cause) in CFS, getting rid of it may be a challenge.

>

[Guest guest]

>

> I am remaining optimistic even though, of course, the 'cause' of cfids may not

be XMRV.

sure, it is good that there is finally some research momentum.

the research community now has to take the problem serious.

> The European studies did not use the correct procedure. That is why their

results did not show the virus.

dunno ... it is suspicious that the other US study did not find XMRV either, but

some similar viruses. To me this suggests that researchers may find different

viruses (or maybe other infectious organisms) depending on location, patient

group etc. But this issue should be relatively easy to sort out, within a year

or so.

Some scientists think that one of the problems is that the EU groups tested CFS

patients with different disease criteria ('CFS' in the US is not the same as it

is in Europe ...). Maybe there are different varieties of CFS, and the link with

XMRV occurs only in one or a few of them.