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CDC XMRV Retrovirology Study on CFS Published

VillageLife

Senior Member
Messages
674
Location
United Kingdom
And Andrea whittemore has just posted a message on the CFIDS Facebook page,

Annette Whittemore
Thank you Wilhelmina and everyone for saying exactly what I'm thinking ! This is ridiculous!!!
Andrea Whittemore -Goad
 

bullybeef

Senior Member
Messages
488
Location
North West, England, UK
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

Exactly, something has definitely been said. I would like to believe Alter has his hands behind his back. Hillary Johnson blogged that the CDC were putting pressure on Alter’s journal. Have they changed their mind then?
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
...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.

Yes, you don't find what you are certain not to. Not exactly SCIENCE, but what more can we possibly expect from someone like Reeves. He is definitely predictable.

The truth is getting a great big run around for now, but hopefully sooner than later, it will win out.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
is that defiance or optimism?


edit - sorry it appears me is angry after all - but not at you - it's just history doesnt support optimism in this case - so curiousity got the better of me - feel free to ignore....
 

Michelle

Decennial ME/CFS patient
Messages
172
Location
Portland, OR
Danny -

I too am unsurpised and mostly ambivalent about the CDC's finding. But there was a small part of me, after hearing -- mistakenly apparently -- that Reeves wouldn't be involved with this study -- that hoped this time it would be different. That just maybe we'd finally get some vindication from CDC. What makes this a bit more bitter to swallow is that it's published at the same time Alter is now appearing to back track. Granted, I didn't break out the champagne when I heard about Alter's paper because it wasn't published yet. Quite frankly I don't think I will until my doctor says to me "yes, you're positive for XMRV and here's a prescription for an antiretroviral." But yesterday was a bad day. The nurse for my clinic called to say that they are reducing the amount of narcotic medication I can take, despite a well-established pain management plan developed over years. I suspect budget cuts but am not sure exactly why (I'm on Medicaid). I'm tired of some bureaucrat deciding how much I will suffer, of some dickhead at the CDC deciding how valid my suffering is, of every two years the voters of my state deciding whether they will pay for someone to help me bathe or not, and most of all, this damn disease deciding every fucking last tiny detail of my life.

Most of the time I haven't really let the up and down of the scientific process of deciding whether or not we do or don't have XMRV bother me. Indeed intellectually I keep telling myself that the wording of this study was quite restrained compared to the Dutch and IC studies. That even they acknowlege they are limited by the fact we still do not have agreed upon positive and negative samples. And frankly, I've found it a bit disturbing at times just how bipolar people on this forum can be -- getting way too excited when they shouldn't and way too depressed when they don't have to.

But today is just...hard.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
And Andrea whittemore has just posted a message on the CFIDS Facebook page,

Annette Whittemore
Thank you Wilhelmina and everyone for saying exactly what I'm thinking ! This is ridiculous!!!
Andrea Whittemore -Goad

She also posted this: " I know everyone is wondering what the heck is going on . I can assure you WPI is working on this :) something should be on website "
 

glenp

"and this too shall pass"
Messages
776
Location
Vancouver Canada suburbs
ty for posting this link

I just emailed Dr. Alter and encourage you to do the same. it can't hurt.
harvey.alter@nih.gov

Let's at least show him that people are paying attention to this.

here's what I wrote (in 2 minutes - I'm sure it's not great)

Dear Dr. Alter:
It is my understanding that your study has been put on hold. Originally it was to build "consensus" among the government agencies, as the CDC was unable to detect XMRV in anybody (which seems odd in itself). And yet now the CDC has published their negative study and you are now claiming yours has not been accepted for publication. However, that statement in itself is untrue; PNAS itself confirms your study was accepted. Why the change?

It seems preposterous that 1) there is any hesitation to publish conflicting studies - this is done all the time and 2) that the negative study is considered the 'correct' one as it has been allowed to be published and 3) that you need to 'recheck' your data. That seems ridiculous for a seasoned scientist as yourself.

Please, please PLEASE do not be pressured into being quiet. There is far too much at stake. You are a scientist. There is no place for politics in science.

PLEASE publish your study.

Regards,
****

Ty for posting this, so much easier with the links here

I have also sent my letter off to Dr. Alter

harvey.alter@nih.gov
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
I understand Michelle...

Totally understand.

It's also important to remember that this was a very small group of patients -- as was the WPI's study -- so it will take some time to sort out. Always a good idea too not to put all of one's eggs in one basket. Many of us could turn out to be XMRV negative, yet are just as ill as the positives...
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
I don't know, this study is old. It was done before Dr. Reeves was moved and Dr. Unger was placed in charge. But I can't find the acceptance date in "Retrovirology", just the publication date. The whole thing is screwier than a kangaroo in Denmark.

The study itself is shade of the Kerr study. First they show XMRV positive but go back and run a different test on the positive sample which of course comes up negative. Looks like some 18 positive samples which then get retested in various ways and declared negative. It's a real tap dance.

Are the PTB's at DHHS trying to buy more time? Or are they really trying to suppress information. I'm usually very up beat but, releasing this old study now has me seriously confused.
 

hvs

Senior Member
Messages
292
Are the PTB's at DHHS trying to buy more time? Or are they really trying to suppress information. I'm usually very up beat but, releasing this old study now has me seriously confused.

Buying time until they have a good test for people and the blood supply.
Of course the strategy sucks, but they can honestly say that they were simply publishing all pertinent info, even if this isn't a stellar or revealing study. (And very very unfortunate that news media will report this as a "stunning blow" to xmrv theory and that it will slow funding...)
 

leelaplay

member
Messages
1,576
Hey George, a tap dance indeed - and who's underfoot?

Thanks as always for sharing your brains

This is what I found for the submission date (and here's the link to the pdf of the full article under construction)

ISSN 1742-4690
Article type Research
Submission date 26 March 2010
Acceptance date 1 July 2010
Publication date 1 July 2010
Article URL http://www.retrovirology.com/content/7/1/57
This peer-reviewed article was published immediately upon acceptance. It can be downloaded,
printed and distributed freely for any purposes (see copyright notice below).
Articles in Retrovirology are listed in PubMed and archived at PubMed Central.
 

pollycbr125

Senior Member
Messages
353
Location
yorkshire
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
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
I can always count on you to find the good stuff! Woof!

Submission date 26 March 2010
Acceptance date 1 July 2010
Publication date 1 July 2010

(scratch, scratch, scratch,scratch, scratch, scratch,scratch, scratch, scratch, hummm) Now my doggy reply to this is . . . lifting leg. . .ready. . .aim (big grins)
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
Is it possible to put a positive spin on the delay of Alter's paper? Might he take the opportunity to include a critique of the CDC / Reeves paper, now that it is published? I would assume that the man who said those things about the WPI and XMRV at a conference a few weeks ago has no particular love of the Reeves doctrine. Possible? OK, a long shot, but I am trying to wrest a bit of sanity out of this crazy situation, and not become 100% cynical about the US medical establishment. Chris
 

Megan

Senior Member
Messages
233
Location
Australia
Buying time until they have a good test for people and the blood supply.

hvs, I think you're probably right, I hope that's all it is. Only thing is I didn't know my time was for sale. We could be waiting a long time.
 

hvs

Senior Member
Messages
292
hvs, I think you're probably right, I hope that's all it is. Only thing is I didn't know my time was for sale. We could be waiting a long time.

In my humble opinion, one thing to consider in all of this is that most folks calling the shots about which paper comes out when, calling for delays until ducks are in a row, etc. etc. believe that so-called "cfs" amounts to a state of being kinda tired (like the folks pictured in a ll the clipart accompanying news articles or in "Fibro and Fatigue" web banners). They can be perfectly well-meaning doctors and officials thinking they're making decision in the best interest of the public at large, but they're acting without the knowledge that this is a progressive disease that, having wonked-out your immune system, leads to ruined careers and families and terrible physical damage to patients' bodies over the years. Why freak out when the consequences are a little fatigue? And hey, who ain't fatigued in this busy world?
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
Ty for posting this, so much easier with the links here

I have also sent my letter off to Dr. Alter

harvey.alter@nih.gov

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!