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CDC XMRV Retrovirology Study on CFS Published

Megan

Senior Member
Messages
233
Location
Australia
Why only 50 CFS patients?

I had heard that the CDC study was meant to be a large one? 50 patients doesn't sound very large to me (compared to the others that have come out).

I wonder are they doing other studies as well? Or are there more people in this study that have not been reported on for some reason?
 

Cort

Phoenix Rising Founder
Cort posted this on the email alter thread

Originally Posted by Cort
I think all we have are little drabs unfortunately.

I think Dr. Alter has very good personal reasons to get out his study. His name is all over the Internet in a not very complimentary way. His peers are surely wondering what's going on. He's apparently withdrawn his paper for publication...for his own sake he needs to be able to verify his work and come up with a positive result. I'm sure that he's sweating bullets right now - no researcher wants to be put in the position where his work is publicly disavowed by his own funder....He has a lot of good reasons to make this right.(post 20)

my comment
Cort a lot of folk are under the impression that this paper is witheld from publication not withdrawn . Are you saying that the paper has been withdrawn totally and if so can we have clarification of this ie via a link or something(post 23)

http://www.forums.aboutmecfs.org/showthread.php?6043-Email-Dr-Alter/page2

I assume that you are correct and that it is being withheld from publication - altho one of the comments suggests it was never about to be published - while another suggests it was....its hard to know whats really going on.
 

dsdmom

Senior Member
Messages
397
Folks please don't inundate Dr. Altair with emails. The man is most likely under an extreme amount of pressure. I'm pretty sure his statement about doing more tests was not his idea I have a feeling he's being pressured if not coerced into backtracking.


I'm sick of hearing the reprimands and the cautions against emailing Dr. Alter. Please....email if you want or don't email if you don't want. But we are adults - we don't need people telling us what we should and should not do. Plenty of people email the CDC, Wanda Jones, the NIH, the FDA...why is Alter immune? Because he authored a positive study? C'mon people...there's nothing wrong with sending an email to a government official. I'm not saying you HAVE to write to him, zero pressure to do so - but I think it's ridiculous that so many people are trying to get people NOT to email him. And it's up to you what you say in the email if you do send it.
 
Messages
74
Folks please don't inundate Dr. Altair with emails. The man is most likely under an extreme amount of pressure. I'm pretty sure his statement about doing more tests was not his idea I have a feeling he's being pressured if not coerced into backtracking. As an aside, I'd like to see an NIH press release rather than just the quote the CAA was apparently provided exclusively.

It's likely that he saw the handwriting on the wall and provided the initial leak to try to stop his research from being squashed - he's squarely in our corner - but I thing tons of emails from us would just add to his stress.

Perhaps someone would like to organize a letter of support from the group on another thread that we could virtually sign by adding our names to the thread. You can put me down!

I pretty much agree with this. We should thank him for the research and add that we hope his study can be released for publication as soon as possible. Right now we have no idea what is going on with his paper atm but the fact that he might be under a great deal of stress is certainly possible.
 

VillageLife

Senior Member
Messages
674
Location
United Kingdom
The CFIDS Association of America 22 mins ago.
As we have since the Lombardi study was published in October 2009, the CFIDS Association of America has actively promoted studies that seek to validate and confirm the association of XMRV in CFS. We are working with several investigators who have studies under way. Publication of study data in top-flight peer-reviewed journals is essential to ... See Moreadvancing our understanding of the role that XMRV plays in CFS, and we are actively advocating for publication of the study conducted by NIH/FDA as swiftly as possible. Circulating rumors and leaks have been a consistent problem, contributing to tension. We're trying to get verifiable information about the discrepant reports about the NIH/FDA study; please give us a little more time to do that.
 

Esther12

Senior Member
Messages
13,774
I'm sick of hearing the reprimands and the cautions against emailing Dr. Alter. Please....email if you want or don't email if you don't want. But we are adults - we don't need people telling us what we should and should not do. Plenty of people email the CDC, Wanda Jones, the NIH, the FDA...why is Alter immune? Because he authored a positive study? C'mon people...there's nothing wrong with sending an email to a government official. I'm not saying you HAVE to write to him, zero pressure to do so - but I think it's ridiculous that so many people are trying to get people NOT to email him. And it's up to you what you say in the email if you do send it.

Advising people against e-mailing Alter is no more patronising than advising people to e-mail alter. I don't think either imply that other member are not adults who should be free to make their own decisions.

Personally, I think that filling Alter's Inbox with mail from patients is likely to do more harm than good. If he suddenly starts getting loads of e-mails he's not going to have the time to read them and instead will just dismiss them as irritating spam. I don't see what good that will do anyone.
 

VillageLife

Senior Member
Messages
674
Location
United Kingdom
look there is no point us arguing over emailing dr Alter, I started the post and i'm sorry, I take responsibility for putting that post up. I was up set and frustrated and thought it seemed like a good idea. Im sorry.
 

LaurelW

Senior Member
Messages
643
Location
Utah
Who would it be most effective to e-mail? Ideas?

look there is no point us arguing over emailing dr Alter, I started the post and i'm sorry, I take responsibility for putting that post up. I was up set and frustrated and thought it seemed like a good idea. Im sorry.

I bet that Dr. Alter has an assistant read his e-mails anyway to filter them. But I would like to send out a bunch of e-mails today to put pressure on the DHHS, let them know that there will be big trouble if Dr. Alter's paper gets suppressed in any way, that there are many people out here that will act if the truth doesn't come out. So who knows the best places to send those e-mails? Thanks very much.
 

kurt

Senior Member
Messages
1,186
Location
USA
I had heard that the CDC study was meant to be a large one? 50 patients doesn't sound very large to me (compared to the others that have come out).

I wonder are they doing other studies as well? Or are there more people in this study that have not been reported on for some reason?

I have heard there are additional XMRV studies with CDC involvement. Hopefully they will all be reported soon.
 

Rrrr

Senior Member
Messages
1,591
one more thing that just came to my mind

dr. Hohn has now participated in at least 3 studies

1.)
"lack of evidence for xenotropic murine leukemia virus-related virus(xmrv) in german prostate cancer patients"
http://www.retrovirology.com/content/6/1/92

2.)
"xenotropic murine leukemia virus–related gammaretrovirus in respiratory tract"
http://www.cdc.gov/eid/content/16/6/1000.htm

3.)
"absence of evidence of xenotropic murine leukemia virus-related virus infection in persons with chronic fatigue syndrome and healthy controls in the united states"
http://www.retrovirology.com/content/7/1/57

in 1.) they were unable to find any evidence of xmrv. In 2.) they found it in ~ 2 - 10 % of people with rti and 3.2 % of their healthy controls. Now in 3.) they did not find any evidence at all.

This means that dr. Hohn knows how to find xmrv and that he is aware of the fact that it should be found in at least around 3% of all samples, unless xmrv only appears in geographical clusters.
It might be that 3.) was completed before 2.), so back then dr. Hohn did not know what he knows now.
But either way, 3.) has not been published until today.
So at least one of those authors (dr. Hohn) must be aware of the possibility of the conclusion of 3.) being wrong.
So why is it that study, that is being published now and not the one done by dr. Alter or none of them? There must be doubts about 3.)'s quality. If i were dr. Hohn i would want to test the people in 3.) with the methods used in 2.) before i say that they are xmrv negative.

Dr. Hohn works for the rki in berlin and i speak german. I might try to ask him about those studies, but it would take some time, i have a lot of things to do right now and if i do this i want to do it well.

yes, please try to talk with him soon!
 

glenp

"and this too shall pass"
Messages
776
Location
Vancouver Canada suburbs
I am not interested in additional studies done by CDC if they are using the same methods!!!! We need others away from the CDC and ones not afraid of losing their jobs. This seems to be a new way, a way that should have been followed up when Dr Freitas made the retrovirus discovery but, it wasn't. Lets not let them do this again.

Glen
 

Hope123

Senior Member
Messages
1,266
My impression from all this is that Dr. Alter was likely pressured to pull his paper.

As I said before, I am not a conspiracy theorist but I have seen pressure in research settings. Years ago, I remember a professor I was in contact with negotiating with a pharmaceutical company on a research contract in an area of medicine not even close to the level of controversy as CFS; part of the contract would ensure he could publish whatever results came out, negative or positive. Then you have multiple NY Times articles discussing how Dr. Steve Nissen at the Cleveland Clinic was threatened by pharma and academic pressures to not speak out on the failures of Avandia. Finally you have Dr. Alvin Poussaint being dismissed this week by his employer for speaking out against claims made by Baby Einstein products.

http://www.nytimes.com/2010/02/23/health/23niss.html?scp=1&sq=steve nissen&st=cse

The US government would have even more power than these groups to suppress information under rules like sovereign immunity, where you cannot sue the government unless under very specialized circumstances. I am not a lawyer but I know such rules exist. Allowing publication of the CDC article without the FDA/NIH publication looks very suspicious; I doubt huge mistakes were made by Alter and company as the article was already peer-reviewed and ready to be published. I hope the FDA/NIH article comes out.

On the article itself, I will have to take time to read it but the CDC cohort is definitely at issue. I have to backtrack to my notes but I remember one of these groups (?Wichita) having an average work week of 40 hours, which does not ring true to CFS at all where part of the pre-1994 CFS definition used to include the point that your function was reduced to at least 50%. Bananaman also made a point on a separate thread about 16% of these people having a diagnosis already of CFS and a large majority not seeing their fatigue as an issue big enough to bring up to their physician. I have also wondered about this; the past papers I have looked at by CDC using the same cohort have never clarified this point.
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
Bood from a Stone - Dr. Susan Vernon's take on the CDC study

From the CAA site: http://www.cfids.org/xmrv/070110study.asp


Blood from a Stone

Suzanne D. Vernon, PhD
Scientific Director
The CFIDS Association of America
July 1, 2010

Researchers at the U.S. Centers for Disease Control and Prevention (CDC), along with collaborators in California and Germany, published a paper in the journal Retrovirology titled, “Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States.” Blood samples from people with CFS, matched controls and 41 healthy blood donors were tested for antibodies to XMRV using a western blot assay and for XMRV DNA using a nested PCR assay. Three independent laboratories, including the retrovirus lab at CDC, Blood Systems Research Institute (BSRI) and the Robert Koch-Institute lab tested coded samples. There is no doubt of the technical competence of these laboratories to conduct these assays to detect XMRV antibodies and DNA. So why wasn’t XMRV detected?

If the rate of XMRV in the healthy blood supply is 0.1% (or 1 person out of 1000), then there is a slim chance of detecting XMRV DNA among 41 healthy blood donor samples. So, no surprise there.

What about the CFS cases and controls? First, I would like to make a request of all authors of scientific papers – please provide a table that describes the subject and sample cohort! Combing back and forth in a paper to figure out who is who and what is what is frustrating! From what I can decipher, the samples were drawn from 18 people identified through a Georgia registry who met criteria described in the paper that is different from 1994 international CFS criteria. Eleven CFS cases and matched controls were identified from the Wichita studies, although it is not clear if these samples came from the longitudinal studies or the clinical study, and 22 CFS cases and controls from the Georgia community-based study. There is little indication that these three cohorts are comparable in regard to CFS definition, as each cohort was selected using different definition. The authors strenuously object to application of the Canadian case definition in other studies, stating that, “physical findings in persons meeting the Canadian definition may signal the presence of a neurological condition considered exclusionary for CFS.” Yet the physical findings listed are those commonly experienced by CFS patients, and one (tender lymphadenopathy) is a case-defining symptom of the 1994 criteria.

Further, the samples from these three study cohorts were collected using different types of tubes, each of which has a distinct way of being processed. As if this weren’t bad enough, none of the blood tubes used were of the same type used in the Lombardi study. (They used tubes containing sodium heparin that are intended for use with virus isolation). The blood tubes from the 18 Georgia registry patients are designed to collect whole blood and preserve nucleic acid; it is not clear where the plasma came from for these subjects since plasma cannot be obtained using these blood tube types. So the explanation for not finding XMRV in these samples is simple – this was a study designed to not detect XMRV using a hodge-podge sample set.

Detecting XMRV is hard. Replication of the Science paper will be hard because of the exacting methods required and because of the heterogeneity and complexity of CFS. Regardless of the outcome of any single study, it is critical that a valid replication study be designed and implemented by multiple laboratories, using standard and optimized techniques and testing split samples collected appropriately from adequate numbers of well-characterized cases and controls. Studies such as this one from Switzer, et al., continue to absorb time, divert precious resources and fuel controversy instead of consensus.


References:

Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States. Switzer WM, Jia H, Hohn O, Zheng H, Tang S, Shankar A, Bannert N, Simmons G, Hendry RM, Falkenberg VR, Reeves WC, Heneine W. Retrovirology 1 July 2010.

Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Science 8 October 2009. 1179052.

For more information about the CDC’s cohorts from the Wichita, Georgia and registry studies visit: http://www.cdc.gov/cfs/publications/surveillance.htm
 

Greggory Blundell

Senior Member
Messages
109
Location
New Jersey, USA
What glenp said. What I do not understand is, why cannot someone from the WPI oversee - as an observer - the CDC perform a study, if only to ensure procedurally it has merits and cannot be questioned.
 

Rivotril

Senior Member
Messages
154
-frozen blood samples, no fresh blood
-CDC criteria instead of CCC
-no culturing
-Reeves telling they wouldn't find anything back in october

the only thing they have just replicated are their own 20 year old lies
 

bullybeef

Senior Member
Messages
488
Location
North West, England, UK
From the CAA site: http://www.cfids.org/xmrv/070110study.asp


Blood from a Stone

Suzanne D. Vernon, PhD
Scientific Director
The CFIDS Association of America
July 1, 2010

Researchers at the U.S. Centers for Disease Control and Prevention (CDC), along with collaborators in California and Germany, published a paper in the journal Retrovirology titled, Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States. Blood samples from people with CFS, matched controls and 41 healthy blood donors were tested for antibodies to XMRV using a western blot assay and for XMRV DNA using a nested PCR assay. Three independent laboratories, including the retrovirus lab at CDC, Blood Systems Research Institute (BSRI) and the Robert Koch-Institute lab tested coded samples. There is no doubt of the technical competence of these laboratories to conduct these assays to detect XMRV antibodies and DNA. So why wasnt XMRV detected?

If the rate of XMRV in the healthy blood supply is 0.1% (or 1 person out of 1000), then there is a slim chance of detecting XMRV DNA among 41 healthy blood donor samples. So, no surprise there.

What about the CFS cases and controls? First, I would like to make a request of all authors of scientific papers please provide a table that describes the subject and sample cohort! Combing back and forth in a paper to figure out who is who and what is what is frustrating! From what I can decipher, the samples were drawn from 18 people identified through a Georgia registry who met criteria described in the paper that is different from 1994 international CFS criteria. Eleven CFS cases and matched controls were identified from the Wichita studies, although it is not clear if these samples came from the longitudinal studies or the clinical study, and 22 CFS cases and controls from the Georgia community-based study. There is little indication that these three cohorts are comparable in regard to CFS definition, as each cohort was selected using different definition. The authors strenuously object to application of the Canadian case definition in other studies, stating that, physical findings in persons meeting the Canadian definition may signal the presence of a neurological condition considered exclusionary for CFS. Yet the physical findings listed are those commonly experienced by CFS patients, and one (tender lymphadenopathy) is a case-defining symptom of the 1994 criteria.

Further, the samples from these three study cohorts were collected using different types of tubes, each of which has a distinct way of being processed. As if this werent bad enough, none of the blood tubes used were of the same type used in the Lombardi study. (They used tubes containing sodium heparin that are intended for use with virus isolation). The blood tubes from the 18 Georgia registry patients are designed to collect whole blood and preserve nucleic acid; it is not clear where the plasma came from for these subjects since plasma cannot be obtained using these blood tube types. So the explanation for not finding XMRV in these samples is simple this was a study designed to not detect XMRV using a hodge-podge sample set.

Detecting XMRV is hard. Replication of the Science paper will be hard because of the exacting methods required and because of the heterogeneity and complexity of CFS. Regardless of the outcome of any single study, it is critical that a valid replication study be designed and implemented by multiple laboratories, using standard and optimized techniques and testing split samples collected appropriately from adequate numbers of well-characterized cases and controls. Studies such as this one from Switzer, et al., continue to absorb time, divert precious resources and fuel controversy instead of consensus.


References:

Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States. Switzer WM, Jia H, Hohn O, Zheng H, Tang S, Shankar A, Bannert N, Simmons G, Hendry RM, Falkenberg VR, Reeves WC, Heneine W. Retrovirology 1 July 2010.

Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Science 8 October 2009. 1179052.

For more information about the CDCs cohorts from the Wichita, Georgia and registry studies visit: http://www.cdc.gov/cfs/publications/surveillance.htm

AhhhI feel a little calmer after reading that, and if some like me is privy to information like this, then surely the powers that be are. Surely the digital age is going to prevent the CDC from attempting to bury evidence of a new human retrovirus again.
 

Navid

Senior Member
Messages
564
Further, the samples from these three study cohorts were collected using different types of tubes, each of which has a distinct way of being processed. As if this werent bad enough, none of the blood tubes used were of the same type used in the Lombardi study. (They used tubes containing sodium heparin that are intended for use with virus isolation). The blood tubes from the 18 Georgia registry patients are designed to collect whole blood and preserve nucleic acid; it is not clear where the plasma came from for these subjects since plasma cannot be obtained using these blood tube types. So the explanation for not finding XMRV in these samples is simple this was a study designed to not detect XMRV using a hodge-podge sample set.----susan vernon/blood from a stone.

thank you for this clear cut analysis of the cdc's ridiculously flawed study. the paragraph highlighted above makes my blood boil....why are they di_king around with these idiotic studies, instead performing a true replication.

we are sick, we want to know why, and be treated in order to recover our lives...it's simple, why do they (the cdc) continue to fu__ with us. we deserve the truth, the research and the treatment....end the BS!!!!!!:Retro mad::tear::Retro mad::tear::Retro mad:
 

glenp

"and this too shall pass"
Messages
776
Location
Vancouver Canada suburbs
I had read somewhere that De Freitas wanted to go and show them --seems to me I read that they did not want that, I do not know the accuracy of it. There have been a few posters that were told years ago that they had a new retrovirus, simple as that. We cannot let this continue. Its terrible that the private sector has to find it and then fight that it is there. Once in government jobs i think many learn to be quiet and just keep their jobs forever. To have a psychiatrist involved in infectious disease is ludicrous

glen