• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

CDC XMRV Retrovirology Study on CFS Published

Otis

Señor Mumbler
Messages
1,117
Location
USA
what people tend to forget (actually I haven't heard anyone notice/mention that) is that the person who replaced him DID publish with him a lot in the past - I forgot the lady's name but she has been working with, or under, reeves for decades it seems. apple+tree etc

Dr. Elizabeth Unger is acting in Slick Willy Reeve's old job. She did not impress at the latest CFSAC meeting.
 

muffin

Senior Member
Messages
940
The WSJ senses that the retrovirus is the cause... go on yahoo finance... wherever there is money , there is the WSJ... they've been debating the impact this will have on the pharm companies for a while... they seem excited. almost as much as us. go figure.

Great insight. So how do we "play" the pharms now?

Again, thank you for all your efforts on the petition. Great job. So glad you are on Team CFIDS!!!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Bob

We need cynism, skepticism, optimism and a whole lot of other things - including pessimism. Different points of view help us find a balance. They help us avoid becoming so depressed that a wave of mass suicides puts us permanently in the crazy camp (the survivors anyway). ;)

Optimism is good. So are most of the other -isms. We are trying to deal with something vastly complex, involving big money and power, and without most of the facts. The more bases we cover, the better prepared we will be to finally win the debate and get ourselves successfully treated. This is a time for action, we have never had a better time in the history of ME or CFS.

Besides, I appreciate reading optimistic points of view in between all the pessimism.:Retro smile:

Bye
Alex

There, I'm being optimistic again! Sorry, I can't help it, and I know that a healthy dose of cynicism is needed at times like these!
 

glenp

"and this too shall pass"
Messages
776
Location
Vancouver Canada suburbs
CDC is saying this study from 2 institutions is negative - I assume that means the 2 studies??? (switzer and alter) If that is the case? Are there any lawyers here?

On July 1, 2010,

CDC researchers and colleagues from two institutions reported results of a study in which they found no evidence of infection with xenotropic murine leukemia virus-related virus (XMRV) among patients with chronic fatigue syndrome

http://www.cdc.gov/ncidod/dhqp/bp_xmrv_overview.html#
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
CDC is saying this study from 2 institutions is negative - I assume that means the 2 studies??? (switzer and alter) If that is the case? Are there any lawyers here?

On July 1, 2010,

CDC researchers and colleagues from two institutions reported results of a study in which they found no evidence of infection with xenotropic murine leukemia virus-related virus (XMRV) among patients with chronic fatigue syndrome

http://www.cdc.gov/ncidod/dhqp/bp_xmrv_overview.html#

Sorry for the cross (double meaning there) posts but I though this should be posted here.

As discussed here, this is just the CDC declaring game over, no XMRV, end of story.

The original Alter paper needs to see the light of day or we may get strung along circa 1991.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
CDC is saying this study from 2 institutions is negative - I assume that means the 2 studies??? (switzer and alter) If that is the case? Are there any lawyers here?

On July 1, 2010,

CDC researchers and colleagues from two institutions reported results of a study in which they found no evidence of infection with xenotropic murine leukemia virus-related virus (XMRV) among patients with chronic fatigue syndrome

http://www.cdc.gov/ncidod/dhqp/bp_xmrv_overview.html#

Hi glen,

They are just referring to the one CDC study which has already been published...
I think that they mean that some of the named researchers involved in the study were from other institutions, other than the CDC.

Bob
 

Daffodil

Senior Member
Messages
5,875
isnt a drug company (GSK?) involved in a replication study? if they succeed and WPI is certainly on our side, does it really matter what the CDC think?
 

pollycbr125

Senior Member
Messages
353
Location
yorkshire
this is just the CDC declaring game over, no XMRV, end of story.

The original Alter paper needs to see the light of day or we may get strung along circa 1991.

I agree they really are trying to pass this off as done and dusted . that there is no xmrv in cfs patients .The thing is folk will believe this crap , the sooner the positive Alter study is out the better. if enrolling folk via telephone conversation who have never been diagnosed by a doctor is representative of cfs patients then I must have been Joan of Arc in a previous life and these pigs that keep flying past my window are getting really annoying now:Retro mad:
 

glenp

"and this too shall pass"
Messages
776
Location
Vancouver Canada suburbs
It matters if they interfere with having possitive studies published!! Alters study was possitive and it is included with switzerss study showing as negative. Unless Alter looses his job I do not think things are going to change We cannot expect others to loose their jobs
 

Sean

Senior Member
Messages
7,378
Exactly what extra work needs to be done? Sequence the virus? Use an extra method of detection? The most likely would be to include samples from people diagnosed by the CDC since "use of the CCC is only giving a result from a subset of CFS".

The outcome of that will be more negative cases of CFS. People with the revised definition of CFS are only likely to have XMRV at the control levels.

When included within the numbers it will dilute the association of XMRV and CFS. The closer the numbers get to the control level the easier it is to dismiss XMRV as a passenger virus not a disease causing one. Panic over.

Not necessarily. It might focus the debate on patient selection criteria even more, which is a good thing.
 

Lynn

Senior Member
Messages
366
CDC is saying this study from 2 institutions is negative - I assume that means the 2 studies??? (switzer and alter) If that is the case? Are there any lawyers here?

On July 1, 2010,

CDC researchers and colleagues from two institutions reported results of a study in which they found no evidence of infection with xenotropic murine leukemia virus-related virus (XMRV) among patients with chronic fatigue syndrome

http://www.cdc.gov/ncidod/dhqp/bp_xmrv_overview.html#

No, I don't think that they are talking about the NIH and FDA studies. The CDC study states in the first paragraph that the CDC used two other labs as well. "Blinded PCR and serologic testing were performed at the US Centers for Disease Control and Prevention (CDC) and at two additional laboratories."

Lynn
 

glenp

"and this too shall pass"
Messages
776
Location
Vancouver Canada suburbs
Sean focus need not be on their selection. The xmrv was found in alters study. The negative study is published - thats done
Its the possitive study that is being ignored but counted as negative to be included as 2 studies --- All studies need to be published so that scientists can begin to get to work on this

Lynn --- please post a link from where you have this information

glen
 
Messages
85
Reeves not the whole CDC team

"This has nothing to do whether the CDC had the correct cohort/mythology...they didn't want to find it....Bill Reeves name at the top of the page should emphasize that."

Disregard anything from the CDC on CFIDS, XMRV and everything else!

While I would never argue with Muffin, ;) this seems like a good time to make the following point. Dr. Reeves, not the retrovirology team at the CDC, chose the patient samples that were tested.

As noted by Dr. Vernon, the labs that did the testing were top labs just as the labs were in Lombardi et al. And they used standard testing, but not the exact same testing as done in Lombardi et al. So direct the anger appropriately.
 

dsdmom

Senior Member
Messages
397
While I would never argue with Muffin, ;) this seems like a good time to make the following point. Dr. Reeves, not the retrovirology team at the CDC, chose the patient samples that were tested.

As noted by Dr. Vernon, the labs that did the testing were top labs just as the labs were in Lombardi et al. And they used standard testing, but not the exact same testing as done in Lombardi et al. So direct the anger appropriately.

And yet they were unable to detect ANY xmrv - even in controls, correct? That would mean that there seems to be a bigger issue than just cohort selection.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Lynn --- please post a link from where you have this information

Glen, it's your own link... you've misread their text.
They are just talking about their own study which was published on July 1, 2010.

They are just referring to the one CDC study which has already been published...
I think that they mean that some of the named researchers involved in the study were from other institutions, other than the CDC.

On July 1, 2010, CDC researchers and colleagues from two institutions reported results of a study in which they found no evidence of infection with xenotropic murine leukemia virus-related virus (XMRV) among patients with chronic fatigue syndrome (CFS)

http://www.cdc.gov/ncidod/dhqp/bp_xmrv_overview.html#
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
I agree they really are trying to pass this off as done and dusted . that there is no xmrv in cfs patients .The thing is folk will believe this crap , the sooner the positive Alter study is out the better. if enrolling folk via telephone conversation who have never been diagnosed by a doctor is representative of cfs patients...

In a less serious moment I posted a mock phone interview here.

....then I must have been Joan of Arc in a previous life and these pigs that keep flying past my window are getting really annoying now:Retro mad:

:D

Yes, all that snorting keeps me awake at night - as if I needed any help with that.
 

muffin

Senior Member
Messages
940
Otis Said: "this is just the CDC declaring game over, no XMRV, end of story."

Oh my Dear no. This is NOT the end of the game. This is the very start of the war against the CDC and any other Fed health org that is playing games with science.

Kelly said: "As noted by Dr. Vernon, the labs that did the testing were top labs just as the labs were in Lombardi et al. And they used standard testing, but not the exact same testing as done in Lombardi et al. So direct the anger appropriately."
 

Sean

Senior Member
Messages
7,378
Sean focus need not be on their selection. The xmrv was found in alters study. The negative study is published - thats done
Its the possitive study that is being ignored but counted as negative to be included as 2 studies

We do not know that. Please stop jumping at shadows. It does not help our cause one bit.
 

judderwocky

Senior Member
Messages
328
Otis Said: "this is just the CDC declaring game over, no XMRV, end of story."

Oh my Dear no. This is NOT the end of the game. This is the very start of the war against the CDC and any other Fed health org that is playing games with science. As noted by Dr. Vernon, the labs that did the testing were top labs just as the labs were in Lombardi et al. And they used standard testing, but not the exact same testing as done in Lombardi et al. So direct the anger appropriately."

they are bracing for impact.... scientists are peeved at this.

nature put the words "strategic" in quotations for a reason .
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
On the CDC XMRV Update page they hide the fact that they are using Reeves Criteria and instead twice say they are using Fukuda!!! This goes beyond mere fudging. These are lies.

Patients from both groups had CFS that met the criteria of the 1994 International CFS Research Case Definition, which was established to help distinguish CFS from other illnesses that cause fatigue.

All CFS patients received a clinical assessment and had a diagnosis that met the criteria of the 1994 International CFS Research Case Definition. The use of specimens from two types of CFS study populations (population-based and physician referred) enabled the CDC study team to assess potentially different types of CFS illness. For example, the participants from population-based studies tend to have a more gradual onset of illness compared with physician-referred patients, who tend to have a more sudden onset of symptoms.

The study reported in Science tested samples from a repository containing specimens from CFS patients, but information about the repository and the CFS patients was insufficient to allow a meaningful comparison of groups evaluated by the two studies.