Article: The CDC XMRV Study: How Not to Find XMRV?

You can view the page at http://www.forums.aboutmecfs.org/content.php?180-The-CDC-XMRV-Study-How-Not-to-Find-XMRV

 

Well written, Cort. It's hard to believe that the CDC thinks they can keep up these shenanigans for long. They keep on scooping up those eggs and smearing them on their own faces. At least they got rid of Wm. Reeves. But it takes a while for corporate culture to change. I think this is truly a time for us squeaky wheels (literally) to make ourselves heard and help them out with that process. And public outcry is definitely called for on this one.

 

Well written, Cort. It's hard to believe that the CDC thinks they can keep up these shenanigans for long. They keep on scooping up those eggs and smearing them on their own faces. At least they got rid of Wm. Reeves. But it takes a while for corporate culture to change. I think this is truly a time for us squeaky wheels (literally) to make ourselves heard and help them out with that process. And public outcry is definitely called for on this one.

LOL... have you recently or do you watch glee???? there was a seen like that in the show a few weeks back.

 

My Anger Only Grows

Cort,
In reference to the CFS cohorts, ("The authors noted that 50% of the patients in their study had not consulted a physician and that 75% of them had a gradual onset.") Why, oh why would the CDC utilize patients who had not even consulted a physician?! These are CFS patients based on what, a hunch?
According to the CDC there are at least one million of us CFS patients, SURELY they could have found DIAGNOSED CFS patients, if for no other reason than they (the patients) could ACCURATELY be counted as having CFS...

 

I just heard back from CDC- it looks like they are lumping the 2 studies - Switzer and Alter together and only showing negative results of Switzer??? Isn't that what thery are saying???

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#

 

I just heard back from CDC- it looks like they are lumping the 2 studies - Switzer and Alter together and only showing negative results of Switzer??? Isn't that what thery are saying???

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#

ITs like they think if they keep saying it we're just going to go along with it.

 

I think this is referring to the "two additional laboratories" they listed in the paper.

 

Cort,
In reference to the CFS cohorts, ("The authors noted that 50% of the patients in their study had not consulted a physician and that 75% of them had a gradual onset.") Why, oh why would the CDC utilize patients who had not even consulted a physician?! These are CFS patients based on what, a hunch?
According to the CDC there are at least one million of us CFS patients, SURELY they could have found DIAGNOSED CFS patients, if for no other reason than they (the patients) could ACCURATELY be counted as having CFS...

That was a weird thing. They gathered those patients by doing random sampling via telephone. Whoever meet the definition was deemed to have CFS. What that really revealed was how weak the definition was. (Instead of strengthening it to ensure that most people were at least sick enough to have felt the need to see a doctor, the CDC (ironically) only ended up weakening it further with the empirical definition that followed). Anyway, it was a function of getting patients using random sampling rather than from doctors clinics as is usually done.

I do to give the authors some credit because they did state that rather damning fact right in the paper. I was surprise that they would do that. That group of patients also mostly had gradual onset which was different as well. I had gradual onset but as soon as my health started to tank I saw a Dr. immediately and continued to see Drs. as long as I had the money. This was a CFS Lite group for sure.

 

I just heard back from CDC- it looks like they are lumping the 2 studies - Switzer and Alter together and only showing negative results of Switzer??? Isn't that what thery are saying???

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#

I agree with Gracenote - that appears to refer to the two independent labs that they used to confirm their findings.

 

I just heard back from CDC- it looks like they are lumping the 2 studies - Switzer and Alter together and only showing negative results of Switzer??? Isn't that what thery are saying???

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#

Glen - I'm PEMed beyond belief so I may be overlooking something, but I believe they are strictly citing the Switzer (Retrovirology) paper and basically writing that entire page as if it's the absolute final word on the matter. "No XMRV in CFS, end of story. Nothing to see here, move along" Many people will read this crap and think the matter is settled once and for all which is exactly what the CDC would like people to believe.

This is why many of us don't have faith that truth will prevail unless strong pressure is applied. The original Alter paper needs to come out in it's original, unmodified form. Addendums can be added as needed.

I promise that's the only time I'll say that today. Well, at least for the few hours. I'm going to play with my new iPod and find some relaxing music.

 

I find it hard to accept too but, and I always know my brain isnt working right --- They state the negative results of 2 studies and do not count the possitive findings of the one study. What happened to Dr Alter? Does he still have his job? I guess if we hear no more then he still has his job. And there are not 500 signatures on the petition?? Maybe some brains are working less

Has anyone else got letters back from cdc?

glen

 

Glen - I'm PEMed beyond belief so I may be overlooking something, but I believe they are strictly citing the Switzer (Retrovirology) paper and basically writing that entire page as if it's the absolute final word on the matter. "No XMRV in CFS, end of story. Nothing to see here, move along" Many people will read this crap and think the matter is settled once and for all which is exactly what the CDC would like people to believe.

This is why many of us don't have faith that truth will prevail unless strong pressure is applied. The original Alter paper needs to come out in it's original, unmodified form. Addendums can be added as needed.

I promise that's the only time I'll say that today. Well, at least for the few hours. I'm going to play with my new iPod and find some relaxing music.

My impression is that they are basically implying that it's over. I think this is one reason Suzanne Vernon reacted so strongly. It's interesting that, besides the collection issue, that they used PBMC's for the PCR - something some experts believe should not be used; they should have used plasma, if I'm reading this right.

I think we should do a petition on getting a true replication study done.....Trying to get one together.

Enjoy the IPOD

 

I find it hard to accept too but, and I always know my brain isnt working right --- They state the negative results of 2 studies and do not count the possitive findings of the one study. What happened to Dr Alter? Does he still have his job? I guess if we hear no more then he still has his job. And there are not 500 signatures on the petition?? Maybe some brains are working less

Has anyone else got letters back from cdc?

glen

The CDC has never on their website presented the breadth of CFS research; they commonly leave other findings out plus they won't report on anything until its been published. I'm sure Dr. Alter is digging away at this right now trying to salvage his reputation as a careful scientist. Dr. Mikovits, Dr. Silverman and the Drs' Ruscetti, of course, have huge stakes in these issues.

 

My impression is that they are basically implying that it's over. I think this is one reason Suzanne Vernon reacted so strongly. It's interesting that, besides the collection issue, that they used PBMC's for the PCR - something some experts believe should not be used; they should have used plasma, if I'm reading this right.

I think we should do a petition on getting a true replication study done.....Trying to get one together.

Enjoy the IPOD

TY Cort big huggies and licks for you
If it has to be let me know----geez we may have to put money up ourselves---if we have to, count me in- I will not let DeFreitas repeat. We can't expect others to loose their jobs for us

glen
I feel like I must be wrong but I think that is going to be what has to happen

 

I don't see that they are saying game over.

These quotes from the CDC XMRV page actually sound to me like they are saying it definitely not game over.

Additional research will be necessary to learn more about XMRV and any association that might exist with poor health outcomes, including CFS.

The authors of the CDC paper raise several possible explanations, including technical differences in the assays used

One important consideration is that XMRV is a newly identified virus, first reported in 2006, and much remains to be learned about this and related viruses. As additional research is done on XMRV and similar viruses, it is possible that new findings might emerge that differ from those reported in the Retrovirology and Science papers.

Are additional studies on XMRV planned that might help clarify differences reported by various research groups?

Yes. One important next step is to establish testing methods that can be used consistently across XMRV studies. To pursue this objective, CDC, the Food and Drug Administration, the National Institutes of Health, and several non-federal laboratories are participating in an XMRV assay comparability study, which is being coordinated by a working group of the U.S. Department of Health and Human Services (HHS). When completed, the results of this process might help researchers to more precisely replicate past studies and further study a potential link between XMRV and adverse health outcomes, including CFS.

 

I don't see that they are saying game over.

I have to agree that i didn't quite read that into it either...

julius's quotes suggest that they are still actively looking at XMRV...

And they have a new leader now... Reeves isn't in charge any more... so this recent paper might be his final say in the matter. (I say in hope, not quite believing it myself).

What are the implications for public health practice?

Additional studies are needed to further evaluate if XMRV is associated with adverse health outcomes, including CFS.

Are additional studies on XMRV planned that might help clarify differences reported by various research groups?

Yes. One important next step is to establish testing methods that can be used consistently across XMRV studies. To pursue this objective, CDC, the Food and Drug Administration, the National Institutes of Health, and several non-federal laboratories are participating in an XMRV assay comparability study, which is being coordinated by a working group of the U.S. Department of Health and Human Services (HHS). When completed, the results of this process might help researchers to more precisely replicate past studies and further study a potential link between XMRV and adverse health outcomes, including CFS.

 

You make some good points. I had not seen their website. However, tenor of the website does contrast with the tenor of the paper. Every issue they raise about their paper - the assay differences, the cohorts - they basically negate. They call the assay differences minor stating that the discrepancies in the findings"cannot be explained by minor differences in assays used in each study" - an important statement given that it's hard otherwise to explain the differences.

They do leave open the question of regional differences in prevalence but that is hardly a central issue since we know that the WPI study participants came from across the US (if not from the South).

That statement does appear somewhat at odds with this statement on their website:

One important consideration is that XMRV is a newly identified virus, first reported in 2006, and much remains to be learned about this and related viruses. As additional research is done on XMRV and similar viruses, it is possible that new findings might emerge that differ from those reported in the Retrovirology and Science papers.

Given the fact that it is a newly identified virus I, as a laymen, wonder how they can be sure that "minor' differences in the assays do not make a larger than expected difference. Indeed the fact that this is a new virus seems to call out for a true replication study -something they suggest 'might' be necessary under unspecified circumstances - which they leave unclear. (see below).

To pursue this objective, CDC, the Food and Drug Administration, the National Institutes of Health, and several non-federal laboratories are participating in an XMRV assay comparability study....When completed, the results of this process might help researchers to more precisely replicate past studies and further study a potential link between XMRV and adverse health outcomes, including CFS.

It sounds like a great process and it's gratifying that so many important players are involved, but why the need to compare assays in order to precisely replicate past studies? Aren't the parameters for replication clearly stated in the original paper? I assume the study is taking place in order to determine if a replication study is warranted not to more precisely replicate the original study.

Anyway within the context of the paper itself they do not appear to leave much reason to study XMRV further.

It's good to see on the website that they are leaving the XMRV question at least somewhat open - as indeed they should since they are part of the DHHS team that is producing validated study instruments.

 

Excellent article. Thank you.

 

What bothers me the most is they neglected to include the possitive findings of Alters study but wrote the findings as of 2. We need all studies published, not, just negative ones. So that was not 2 as they say it was, it was one, they will mostly update that to change it after this

 

What bothers me the most is they neglected to include the possitive findings of Alters study but wrote the findings as of 2. We need all studies published, not, just negative ones. So that was not 2 as they say it was, it was one, they will mostly update that to change it after this

Two outside labs participated in the CDC study. That's the other two labs they are referring to. They haven't lumped the FDA study in with this one.