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CDC XMRV Retrovirology Study on CFS Published

Cort

Phoenix Rising Founder
as to put William Reeve's name on this document? It's a dead give away to all of us of what they are doing. So damn stupid. They really don't care and they really hate and area terrified of us.

Unfortunately I think it was inevitable. The person who supplies the patients is always on the document even if they didn't participate in the study itself. I assume that's what happened. I was surprised to see Heineine show up - I guess he's still in the Retro division of the CDC.
 

Cort

Phoenix Rising Founder
Well, I wasn't big on conspiracy theories but everything up to this last statement made me believe Dr. Alter was intent on publishing, that it was accepted.

Then we get a "hold" and then he backtracks.

If he's backtracking I honestly don't think he's doing this of his own accord.

I don't think he is - I think he's been convinced that there could be some holes in the study. His statement that the paper has not been accepted for publication, however, is at odds with this statement from the WSJ "
The paper was accepted for publication in the journal Proceedings of the National Academy of Sciences of the United States of America but is on hold, according to Ashley Truxon, media coordinator for the journal" Could it get any weirder?

He's a well published researcher, though - he's no lightweight. I imagine he's doing his best to back up his results. This has got to be extremely embarrassing for him.

Its also got to be embarrassing for PNAS as well. After all they approved the paper; their peer reviewers said it was a good paper - and now the DHHS is implying well, it needs more work....and now Dr. Alter is agreeing with that apparently. It makes their reviewers look a little amateurish. I imagine they would REALLY love to publish a positive paper now.
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
Unfortunately I think it was inevitable. The person who supplies the patients is always on the document even if they didn't participate in the study itself. I assume that's what happened. I was surprised to see Heineine show up - I guess he's still in the Retro division of the CDC.

WMS, WCR, RMH and WH conceived and designed the study. WCR and VRF provided
specimens and data on study population. HJ, HZ, ST, AS, GS, NB, and OH performed
specimen testing and data analysis with WMS and WH. WMS, WCR and WH wrote the
manuscript. All authors read and approved the final manuscript.

Hey Cort
I wanted to post this again. I think it is very significant. William C Reeves conceived and designed the study, he provided patient samples and he wrote the manuscript. This had to be done before his transfer. Dr. Elizibeth Unger's name is nowhere to be found on this and it would have to include her if she was dirctor of zoonotics and ID section at the time.
 

jspotila

Senior Member
Messages
1,099
I too have put a post on the CFIDS wall


http://www.facebook.com/CFIDSAssn

Sorry but this is turning into a farce posting little dribs and drabs on facebook is not good enough. We need official statements of substantial length to explain the exact situation as it stands at the moment from all parties involved . This is becoming extremely frustrating for patients and my worry is that this will make some patients relapse badly . Everything is up in the air with nobody really knowing what the hell is going on . this is not aimed at you personally please do not take it that way , but I am in contact with several patients and there are patients in floods of tears at this moment in time , patients becoming severly depressed , I am seriously concerned that the lack of information it is putting patients at risk.

Dribs and drabs is what we're getting right now. The Association is passing on information as it becomes available. I share your concern about the uncertainty and anguish this situation is creating in all of us.
 

acer2000

Senior Member
Messages
818
That statement from Dr. Alter was received directly from the NIH Office of Communication and Public Liaison. Authenticity of the message was confirmed by the same office and permission to publish was granted. That's a statement from Dr. Alter.

I suspect both studies will be released. I think we are doubting ourselves here. I am pretty sure what happened is DHHS caved to pressure from both us and other scientists and decided not to "meddle" and will be publishing both papers for the scientific community to review. This is the only thing that makes sense - since they claim to both be published today, and the CDC dropped theirs first by a couple hours.
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
If the Canadian Criteria group is different, then how is the research going into the cause of that illness, which no doubt many Americans have?

And what is it called? I want to ask my doctor if I have it. Is there any information about that illness on the CDC Web site?

Tina
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Hey Cort
I wanted to post this again. I think it is very significant. William C Reeves conceived and designed the study, he provided patient samples and he wrote the manuscript. This had to be done before his transfer. Dr. Elizibeth Unger's name is nowhere to be found on this and it would have to include her if she was dirctor of zoonotics and ID section at the time.

Yes, this study does seem to smack of the Reeves era, including the loaded wording which they used... Let's hope that things will start to change from this point forwards now that Reeves' influence in future CFS studies is diminished... well, we can always hope can't we!
Personally, I think that the patient samples are not important, nor are any alledged patient cohorts relevant... This is just a smokescreen. The CDC just failed to detect XMRV. Period.
Then they tried to use their failed study to claim that there is no link between XMRV and ME, when we already know that there is a link.
 

Levi

Senior Member
Messages
188
Consensus comes first . . .

It is understandable that the powers that be wish to "steer" published research on XMRV to a general consensus on the subject. Particularly research performed by U.S. government agencies. Science is political, and politics are in full play at the moment. I would suggest that folks just consider the NIH research to be quashed until further notice; probably indefinitely.


Dribs and drabs is what we're getting right now. The Association is passing on information as it becomes available. I share your concern about the uncertainty and anguish this situation is creating in all of us.
 
U

unkownviralinfection

Guest
health insurance

health insurance health insurance health insurance DID YOU REALLY THINK THEY WILL ALLOW FOR ANOTHER NEW HIV TYPE OF DISEASE TO TAKE THER PROFITS. It is not just the CDC there are higher powers at play here.
 

dsdmom

Senior Member
Messages
397
A third possibility is that they've found some problem with the two positive papers - or potential problem, and don't want to publish before checing it out.

I can't imagine that serious scientists who have published hundreds of studies (Atler and all those who reviewed it) have found something wrong with their study. What? Suddenly they realize they have mass contamination in their labs?

It just doesn't seem to add up.
 

jspotila

Senior Member
Messages
1,099
I'm not sure these are Alter's words's. It could be the press office or someone higher up has drafted them for him and he's been forced to endorse them. As to why it has appeared on the CFIDS facebook page and nowhere else, I can only think of two reasons:
1) They think they need to 'manage' us
2) They wish to 'manage us' in a way that attracts the least media attention (a smaller press release it could not have been)

If number two is true then I suggest tactically we should be hitting the media about this. I have already emailed the Wall street journalist about it, asking her to follow up the contradiction. Others could do the same, or try and get it to other media people.

The reason the Association published the statement on Facebook is because the NIH Office of Communications and Public Liaison sent it to us and we believe that patients deserve the information.
 

Megan

Senior Member
Messages
233
Location
Australia
Statement from Dr. Harvey Alter, transmitted by the NIH Office of Communication and Public Liaison: "Our paper has not yet been accepted for publication. My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete. Our goal is not speed, but scientific accuracy." Harvey A...lter, M.D

The other thing that concerns me about this quote is "my colleagues and I", I hope this doesn't mean it is being taken out of his hands?
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Silly question perhaps, but...

...Did anyone actually expect the CDC study would confirm the WPI's results?

I mean seriously -- Reeves said months ago they would not find it, and they didn't. This was to be expected, wasn't it? No doubt when reviewed by the WPI and others, they will find the same design flaws that were found in the other negative studies, and we'll move forward.

THE TRUTH WILL WIN OUT.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
I'm not angry
I'm not disappointed
I'm not surprised

me has had ME for a while now and me will wait for at least a while to see what happens

but - if people think that the powers that be give a damn about whats on one of millions of forums or blogs then they mights be wrong - after all who cares about the opinions of a load of mentally ill people wherever they are epressed - as far as they are concerned thats what we are - because they say so
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
THE TRUTH WILL WIN OUT.

I agree with that Danny... XMRV is a proven fact, and it's not going away... The facts and the science and the truth will win in the end...
This is how science works... Vested interests will always fight against the truth, but the truth will always win in the end!
 

VillageLife

Senior Member
Messages
674
Location
United Kingdom
I spotted this on virology blog,

QUOTE WSJ 30th June:
The paper was accepted for publication in the journal Proceedings of the National Academy of Sciences of the United States of America but is on hold, according to Ashley Truxon, media coordinator for the journal.

QUOTE DR ALTER 1st July:
"Our paper has not yet been accepted for publication. My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete. Our goal is not speed, but scientific accuracy." Harvey Alter, M.D
 

Megan

Senior Member
Messages
233
Location
Australia
The reason the Association published the statement on Facebook is because the NIH Office of Communications and Public Liaison sent it to us and we believe that patients deserve the information.

Thank you 'jspotila'. I must say that got a quick reaction!

Of course we deserve the information, that doesn't change the fact that the whole thing is just plain weird. I hope the association can be just as speedy in publicly condemning this situation. A statement to this effect at the time of release of the information would have been beneficial.

I still think patients should be hitting the media with this.