Re: Any thoughts? : 'Failure to find XMRV in new CFS study'

[Guest guest]

>

> great comment by a virologist re the study:

>  

>

> http://www.cfids.org/cfidslink/2010/010603.asp

>

>

> seems like methodology must have been completely flawed. Also worth noting

> that the lead author Weselley is a psychologist with an axe to grind ­

> something like Fombonne in autism (i.e. Falling over backwards to prove

> nothing to do with environment). Also Wesl could even get up being sued as

> some patients are questioning his past conducts, and has everything to lose if

> xmrv link to cfs is confirmed.

>

> publishing in Plos is shady as well, as editor has a Œhistory¹ with the lead

> author.

>

> many data is missing from the study, many things unclear...

>

> another strange point was that this study was not listed ANYWHERE as in the

> pipeline, it was conducted in secrecy, no standardisation methods used for PCR

> etc

>

>

>

>

>

> I wondered if any of you have any thoughts about the newest XMRV study just

> published out of the UK?

>

> Since a lot of you are in contact with Dr. Goldberg I was wondering if any of

> you would print off the full study and bring it into him to read.... I would

> like to know what his thoughts are.

>

> Is XMRV only found in the United States? If so, what is causing all these

> Neuroimmune problems around the world?

> Two papers about prostate cancer have come out of Europe failing to find any

> connection to prostate cancer and XMRV.

> Was the WPI just a fluke? Is it not looking as promising as it was before?

> What does Dr. Goldberg think; does this cast any doubt in his mind about this

> having such a strong connection? I mean out of 186 people, they found zero

> people infected. Not 95%, not 67%, but none, nadda, zip.

>

> So- I am just dying to see what Goldberg thinks. I would ask him myself but I

> am an adult and not a patient of his myself.

>

> -

>

> The link is here:

>

> http://www.plosone.org/article/info:doi/10.1371/journal.pone.0008519

>

>

>

>

>

[Guest guest]

Hello ,

Personally, I do not think Science would publish the results of the XMRV

retrovirus study if it was a fluke. I have communicated with CFS patients in the

UK and they have a definite ax to grind with Dr. Simon Wessely. Dr. Simon

Wessley is a psychologist that believes CFS is a disease that is mental, not

physical. Dr. Wessley would love to prove that CFS is all in the head and

patients would get better if they had the right attitude.

Not only do I have two children with so-called " autism " , I also have two

wonderful relatives that suffer from ME/CFS and trust me, they are very sick. It

has nothing to do with attitude.

I do not know but I believe that this UK study used flawed techniques as they

did in the Bochum study. The fact that they had 0 positive leads me to believe

that is has more to do with design flaw. Also, the XMRV retrovirus may be a

slight variant. I just do not know but I am sure they will get to the bottom of

this soon. On another note, regarding finding variants, here is an interesting

paper published out of Bochum in Sept of 2009. I have no idea what to make of

this. If any of you could interpret this paper in layman's term, I would be most

appreciative. Here is a link to that study:

http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1374672

Unintended spread of a biosafety level 2 recombinant retrovirus

abstract:

" Gene fragments for both viruses could be detected in a broad range of

permissive cell lines from multiple species. Furthermore, experimental

infections of cells negative for these viruses showed that both viruses

replicate rapidly to high loads. We decided to further analyze the genomic

sequence of the MuLV-like contaminant virus. Surprisingly it was neither

identical to MuLV nor to the novel xenotropic MuLV related retrovirus (XMRV)

but

showed 99% identity to a synthetic retrovirus which was engineered in the

1980s. "

All the best,

Jill

[Guest guest]

Could XMRV be a synthetic retrovirus engineered, scary stuff.

Kavita

From: Jill Boyer <sjillboyer@...>

Subject: Re: Any thoughts? : 'Failure to find XMRV in new CFS study'

Date: Wednesday, January 6, 2010, 4:08 PM

 

Hello ,

Personally, I do not think Science would publish the results of the XMRV

retrovirus study if it was a fluke. I have communicated with CFS patients in the

UK and they have a definite ax to grind with Dr. Simon Wessely. Dr. Simon

Wessley is a psychologist that believes CFS is a disease that is mental, not

physical. Dr. Wessley would love to prove that CFS is all in the head and

patients would get better if they had the right attitude.

Not only do I have two children with so-called " autism " , I also have two

wonderful relatives that suffer from ME/CFS and trust me, they are very sick. It

has nothing to do with attitude.

I do not know but I believe that this UK study used flawed techniques as they

did in the Bochum study. The fact that they had 0 positive leads me to believe

that is has more to do with design flaw. Also, the XMRV retrovirus may be a

slight variant. I just do not know but I am sure they will get to the bottom of

this soon. On another note, regarding finding variants, here is an interesting

paper published out of Bochum in Sept of 2009. I have no idea what to make of

this. If any of you could interpret this paper in layman's term, I would be most

appreciative. Here is a link to that study:

http://www.prohealt h.com/me- cfs/blog/ boardDetail. cfm?id=1374672

Unintended spread of a biosafety level 2 recombinant retrovirus

abstract:

" Gene fragments for both viruses could be detected in a broad range of

permissive cell lines from multiple species. Furthermore, experimental

infections of cells negative for these viruses showed that both viruses

replicate rapidly to high loads. We decided to further analyze the genomic

sequence of the MuLV-like contaminant virus. Surprisingly it was neither

identical to MuLV nor to the novel xenotropic MuLV related retrovirus (XMRV) but

showed 99% identity to a synthetic retrovirus which was engineered in the

1980s. "

All the best,

Jill

[Guest guest]

Jill

OK you suckered me in using the term " Layman's Terms " . I am definitively about

" Layman's Term " this stuff has been so confusing for the last ten years with all

of the jargon that is designed to miss-direct the reader.

Here you go.

The UK studies and German studies may or may not indicate a regional preferences

for CSF and XMRV. More likely they are a reflection of what happens in breaking

research. Scientific procedures vary greatly between protocols and individual

labs. We know this by the fact that in our food panels the Dr G requests/needs

the results to come from a singular source, this gives continuity.

The study of virology is exploding and exponentially now that a third

retro-virus has been discovered. Each researcher is using a variety of

procedures to ID the presence of a given virus. Some are effective and some are

less so. In the Reno study they looked a the virus from five different

perspectives. Not just using one procedure but multiple directions. Yes they

confirmed, reconfirmed and re-checked again. This is why it was published in

Science. I do not know what protocols or the size of the sample group used in

Europe but " THEY WERE NOT PUBLISHED IN SCIENCE " this indicates that their

results carried less credibility.

Of you look at the transcripts from Dr K's last talk she compared the science of

ID'ing an new retrovirus like XMRV to the historic work done on AIDS. She said

they had a some what viable test after 5 years. After 8 years they had a test

they could trust. After ten years they had a protocol that " STOPPED " the virus

from replicating. She personally lost 1000 patients over the decade that it took

to bring that epidemic under control.

We are not in that same environment. We are looking at a year or two. But we

need to be able to wait until this runs the gauntlet of " Quality Scientific

Studies " before we judge anything. It is happening as we speak but do not

embrace or negate anything until all of the data has been peer reviewed,

repeated and then we need to allow the researchers to develop, not only

consistent testing protocols but they are looking at - on the shelf- ready to go

medications that may well shut this bug down.

There is so much happening " RIGHT NOW " we should all be on the edge of our seat

waiting for applicable meds and break throughs. Until then we have tools to help

get and keep our kids on a path to improvement and development.

I spoke with a mom of a three year old that just embraced the neuro immune

connection last weekend. I told her I wish I was you! I hit this wall in 1999. I

had nothing to go on. I told her I believe she will see her son in first or

second grade and healthy. I fought for years to see fifth grade with a kid that

is still fighting the underlying virus daily. We are on the brink of seeing this

coming under control. I truly believe this!

Stay tuned. It is happening!

From: Jill Boyer <sjillboyer@...>

Subject: Re: Any thoughts? : 'Failure to find XMRV in new CFS study'

Date: Wednesday, January 6, 2010, 4:08 PM

 

Hello ,

Personally, I do not think Science would publish the results of the XMRV

retrovirus study if it was a fluke. I have communicated with CFS patients in the

UK and they have a definite ax to grind with Dr. Simon Wessely. Dr. Simon

Wessley is a psychologist that believes CFS is a disease that is mental, not

physical. Dr. Wessley would love to prove that CFS is all in the head and

patients would get better if they had the right attitude.

Not only do I have two children with so-called " autism " , I also have two

wonderful relatives that suffer from ME/CFS and trust me, they are very sick. It

has nothing to do with attitude.

I do not know but I believe that this UK study used flawed techniques as they

did in the Bochum study. The fact that they had 0 positive leads me to believe

that is has more to do with design flaw. Also, the XMRV retrovirus may be a

slight variant. I just do not know but I am sure they will get to the bottom of

this soon. On another note, regarding finding variants, here is an interesting

paper published out of Bochum in Sept of 2009. I have no idea what to make of

this. If any of you could interpret this paper in layman's term, I would be most

appreciative. Here is a link to that study:

http://www.prohealt h.com/me- cfs/blog/ boardDetail. cfm?id=1374672

Unintended spread of a biosafety level 2 recombinant retrovirus

abstract:

" Gene fragments for both viruses could be detected in a broad range of

permissive cell lines from multiple species. Furthermore, experimental

infections of cells negative for these viruses showed that both viruses

replicate rapidly to high loads. We decided to further analyze the genomic

sequence of the MuLV-like contaminant virus. Surprisingly it was neither

identical to MuLV nor to the novel xenotropic MuLV related retrovirus (XMRV)

but

showed 99% identity to a synthetic retrovirus which was engineered in the

1980s. "

All the best,

Jill

[Guest guest]

Oh wow! Thanks for the replies and yes those are all very great points, I am

very impressed.

I was not aware there was supposedly a connection with the people backing this

study and psychiatrists whom have an axe to grind. Very interesting.

What 'I' really got a kick out of was WPI response to the article. Wow, Ouch!

lol. They blasted the other research team in a very formal and appropriate

manner. I loved reading it.

I could almost detect the feelings of contempt they were feeling with what I now

realize and know was a quickly rushed study to seemingly try to curb the

enthusiasm of the XMRV interest. From what they wrote it does seem as though it

was truly 'half-a****' in their attempt to try to find the virus. Almost a

'been there done that, can we drop the whole retrovirus/viral talk now?'

attempt.

Good for them in standing their ground. I read some other articles from the

resarchers and I almost got this sense they were kind of jerks, lol! With

saying, " the detection test we used was extremely sensitive- if there was a

virus there we would have found it, but no one had the virus. " The type of talk

you do not often hear scientists talk in- the 'absolute and definite' type

discussion, since scientists try to be very careful and realize they can always

be wrong.

Aside from that I wanted to mention I KNOW this illness is not all in people's

minds because I have it. I had a NeuroSPECT scan done and have suffered greatly

for 8-10 years. I should have mentioned that in my first post.

Thanks for all of your valuable input!

-

>

> Jill

> OK you suckered me in using the term " Layman's Terms " . I am definitively about

" Layman's Term " this stuff has been so confusing for the last ten years with all

of the jargon that is designed to miss-direct the reader.

> Here you go.

>

> The UK studies and German studies may or may not indicate a regional

preferences

[Guest guest]

-You mention that you had a SPECTscan done for your chronic fatique. What

did it show-reduced blood flow to parts of the brain? Did you ever have another

one after using meds for treatment to see the effects and/or improvements? This

information would be helpful to parents. Thanks.

Re: Any thoughts? : 'Failure to find XMRV in new CFS study'

Oh wow! Thanks for the replies and yes those are all very great points, I am

very impressed.

I was not aware there was supposedly a connection with the people backing this

study and psychiatrists whom have an axe to grind. Very interesting.

What 'I' really got a kick out of was WPI response to the article. Wow, Ouch!

lol. They blasted the other research team in a very formal and appropriate

manner. I loved reading it.

I could almost detect the feelings of contempt they were feeling with what I now

realize and know was a quickly rushed study to seemingly try to curb the

enthusiasm of the XMRV interest. From what they wrote it does seem as though it

was truly 'half-a****' in their attempt to try to find the virus. Almost a 'been

there done that, can we drop the whole retrovirus/viral talk now?' attempt.

Good for them in standing their ground. I read some other articles from the

resarchers and I almost got this sense they were kind of jerks, lol! With

saying, " the detection test we used was extremely sensitive- if there was a

virus there we would have found it, but no one had the virus. " The type of talk

you do not often hear scientists talk in- the 'absolute and definite' type

discussion, since scientists try to be very careful and realize they can always

be wrong.

Aside from that I wanted to mention I KNOW this illness is not all in people's

minds because I have it. I had a NeuroSPECT scan done and have suffered greatly

for 8-10 years. I should have mentioned that in my first post.

Thanks for all of your valuable input!

-

>

> Jill

> OK you suckered me in using the term " Layman's Terms " . I am definitively about

" Layman's Term " this stuff has been so confusing for the last ten years with all

of the jargon that is designed to miss-direct the reader.

> Here you go.

>

> The UK studies and German studies may or may not indicate a regional

preferences