CDC XMRV Retrovirology Study on CFS Published

[Alexia]

Bob, I find your ideas interesting and it makes sense. I agree that it is an optimistic scenario but it could be true.

 

[judderwocky]

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!!!

You appeal to the pharmacies the same way you appeal to any thug drug dealer... you sweet talk them, and tell them how much you want to buy their wares.

 

[bullybeef]

My optimism has renewed vigour due to the CDC study not being reported on by any national news/media. It is clear to see the leak study has only added to the question mark regarding XMRV. If they did report on the CDC neg study, they would have to report on the NIH/FDA leaked study too and why that is was unpublished/delayed, and at that would be too balance a view were ME/XMRV is concerned.

 

[Cort]

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.

That's an interesting observation...it is possible that they met both - they had more samples than they used; its possible that they purposefully took samples that fulfilled both definitions. In fact I would imagine that this is what they would do since the empirical definition has turned out to be such a loser, and nobody trusted it. Why add that factor into the equation? I assume that they took samples from empirical definition patients who also fulfilled the Fukuda criteria.

What they didn't state was that Wichita samples probably came from people who fulfilled the Fukuda criteria several years before their blood was drawn but not when their blood was drawn. When they got around to drawing the blood of those people they found that many of them no longer met the Fukuda criteria. They were definitely a "CFS-Lite" group.

 

[Cort]

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

I like the different viewpoints as well. I know Dr. Reeves did not want to find that virus but I can't imagine that the retrovirologists in the HIV/AIDS division didn't want to find a virus or the virologists in a Robert Koch Institute. Of course they would want to find it. Actually I believe the CDC as a whole wants to find this virus. They know how to deal with viruses - they work on viruses all the time - they spend a lot of money working on viruses.....

On the other hand they don't know what to do about CFS... they do very little work on CFS but the subject gets a lot of heat....they spend very little money on CFS but its still a pain......CFS is a two decades long pain in their you know what. I think they would love to know what to do with it.

Does Dr Reeves have a stake in keeping CFS at status quo? Absolutely he does but I don't think the rest of the CDC does. They can't be blamed for not finding XMRV... it was only found in 2006. XMRV is the perfect scenario for them to turn the program around without admitting too much guilt. It would be easy to do.

There's a point in Osler's Web where the CDC response to the DeFreitas virus changes overnight. That's when Folks appears to be able to replicate her results. The Chief at the CDC says "this is what we do best" and the jokes stop and resources start pouring into Folks department. But Folks was never able to replicate the results again and it all starts up again and the resources fade. The point is that if the CDC feels there's an opportunity here - they will go after it; if they don't feel there's an opportunity they'll it shove into a corner and deprive it of resources. That's exactly what they've done with the CFS research program for a couple of decades..big disease that effects alot of people that gets hardly any funding.

Sure there are people in the CDC committed to the status quo but the CFS program in the CDC is a very small one. Dr. Reeves has been running a very small program in a backwater of the CDC for 10 years. He has no power. How could he have any power? His funding has been cut virtually every year. He's a small fish in the big CDC pond studying a weird subject. He doesn't have any power. The HIV/AIDS group - now they must have some power.

I don't think the CDC spends too much time thinking about us actually. Anyway I think their attitudes can change if they feel there's an opportunity - if they can fit us into normal ebb and flow of things. They can't even fit us into the right department. Right now we're in the viral diseases branch I think yet the CFS research team hasn't touched a pathogen something like 10 years. They're not even doing pathogen research on us and yet we're still in the pathogen branch! How crazy is that?

I think the big problem in CFS is that nobody knows what to do with us? Is it a brain disorder? An HPA axis problem? A circulatory problem? Or all of the above? We got kicked out of the immune Institute at NIH because researchers are finding so many other non-immune problems. But we didn't go to another Institute - we went to a nothing - an 'Office'...... that has, again, no money! Nobody knows what to do with CFS. Its not that people don't like CFS or there is some conspiracy going on against CFS - I think the main problem is that nobody knows what to do with us. If they decided CFS was a psychological problem we'd be getting tons of money...but they can't even decide that.

I think the CDC or NIH would love to be able to put CFS in a box and start working on it. Until they can do that they don't want any part of it - they consider it a waste of time (and career) but once they can do that I think they'll happy to work on it. The problem is nobody wants to spend the money to get to that place.

Thats my optimistic pie in the sky take.

I must say, though, that Dr. Vernon's critique is at odds with this idea I thought the study was well done except for those test tubes. I don't know how you can make that mistake....

 

[Sean]

Does Dr Reeves have a stake in keeping CFS at status quo? Absolutely he does but I don't think the rest of the CDC does. They can't be blamed for not finding XMRV... it was only found in 2006. Its the perfect scenario for them to turn the program around without admitting too much guilt. It would be easy to do.

[snip]

Sure there were people in the CDC committed to the status quo but the CFS program in the CDC is a very small one. Dr. Reeves has been running a very small program in a backwater of the CDC for 10 years. He has no power. How could he have any power? His funding has been cut virtually every year. He's a small fish in the big CDC pond studying a weird subject. He doesn't have any power. The HIV/AIDS group - now they must have some power. I don't think the CDC spends too much time thinking about us actually.

Anyway I think their attitudes can change if they feel there's an opportunity.

Agree with that.

 

[bullybeef]

Chronology of the NIH/FDA and CDC paper scandal

This is really worth keeping handy:

http://brc4mecfs.blogspot.com/2010/07/chronology-of-nihfda-and-cdc-paper.html

ORTHO contacted Dr. Harvey Alter today for a reaction. He did not want to comment, but confirmed that a paper is soon to be published.

June 22, 2010- Hillary Johnson, author of Oslers Web posts on her blog
I received a call today from an investigator at a major American university who is involved with XMRV research. He is the second reseacher-scientist to have advised me in as many weeks that a major research paper is about to be published in which the conclusions reached by the authors of the Science paper of October 9, 2009--which linked the gammaretrovirus XMRV to chronic fatigue syndrome and proved it was infectious--have been replicated. In addition, the new data may be even stronger. In other words, the positivity rate among chronic fatigue syndrome patients may be significantly higher. In addition, silent or latent infections in the general population may be, in this new data, as much as twice as high as originally reported in Science. http://oslersweb.com/blog.htm?post=714237

June 30, 2010- Wall Street Journal reports that the NIH/FDA paper are being held back from publication because the CDC was unable to find XMRV in their study http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html

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. She had no further comment.

Kuan-Teh Jeang, editor-in-chief of Retrovirology, said the Switzer paper went through peer review and was accepted for publication when he got a call from the authors earlier this month. They asked that the Retrovirology paper be held.

"My understanding was HHS [Department of Health and Human Services] wanted to get it straightened out. Both reports are from different branches of the government," Dr. Jeang said.

June 30, 2010 Science magazine confirms that the papers are on hold http://news.sciencemag.org/scienceinsider/2010/06/conflicting-papers-on-hold-as-xm.html

Science has learned that a paper describing the new findings, already accepted by the Proceedings of the National Academy of Sciences (PNAS), has been put on hold because it directly contradicts another as-yet-unpublished study by a third government agency, the U.S. Centers for Disease Control and Prevention (CDC). That paper, a retrovirus scientist says, has been submitted to Retrovirology and is also on hold; it fails to find a link between the xenotropic murine leukemia virus-related virus (XMRV) and CFS. The contradiction has caused "nervousness" both at PNAS and among senior officials within the Department of Health and Human Services, of which all three agencies are part, says one scientist with inside knowledge.

June 30, 2010 Dr. Vincent Racaniello writes in his blog that the papers must not be blocked http://www.virology.ws/2010/06/30/publication-of-xmrv-papers-should-not-be-blocked/

It is senseless to block publication because the two papers reach different conclusions. If both manuscripts were subjected to proper peer-review, and were deemed acceptable by the referees, then they should be published. The journal editorial offices must respect the opinions of the reviewers. By overriding their decisions, they have compromised the entire peer reviewer process.

July 1st, 2010 CDC paper published in Retrovirology http://www.retrovirology.com/content/7/1/57 The study finds no XMRV, however, it found its CFS patients through phone surveys rather through those diagnosed by a doctor. Unlike the WPI study, the Canadian Criteria for ME/CFS was not used to select patients.

July 1st, 2010 Wall street journal publishes article about CDC paper http://blogs.wsj.com/health/2010/07/01/cdc-teams-xmrv-chronic-fatigue-syndrome-paper-is-out/

John T. Burklow, a spokesman for NIH, says the FDA-NIH paper has been accepted for publication but that the authors decided to pull it back to conduct additional experiments. Publication will depend on how long it takes to fully address questions. Its a matter of getting it right, he says

July 1st, 2010 The CAA posts a message on their facebook fan page that conflicts with all other existing reports. The information reportedly came from the NIH,

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 Alter, M.D

The question remains why the NIH allowed the CAA to speak for it, when the NIH could have released Dr. Alters statement to the media through a press release to the media. This July 1st statement conflicts with all previous statements that the NIH/FDA paper had been accepted before the involvement of the DHHS and CDC.

July 2nd, 2010 CDC calls its holding back of paper a strategic pause http://www.nature.com/news/2010/100702/full/news.2010.332.html?s=news_rss

Monroe called the delay a "strategic pause", initiated after CDC officials learned of a contradictory study by the NIH and FDA team, reported at a meeting by NIH researcher Harvey Alter. Although a PNAS spokeswoman reportedly told The Wall Street Journal that the study had been accepted for publication, press officers at PNAS refused to comment on the matter today. One scientist familiar with the issue said that the journal's editor-in-chief, cell biologist Randy Schekman of the University of California, Berkeley, sent the paper out for further review after government agencies requested the publication delay. That review came back with requests for additional studies, the scientist says.

July 2nd, 2010 Press release from the WPI regarding the CDC paper

http://www.wpinstitute.org/news/docs/XMRV-CDC Statementrevisedawfinalawfinal.pdf

July 2nd, 2010 Science Magazine updates its story on the publication of the CDC paper
http://news.sciencemag.org/scienceinsider/2010/07/journal-publishes-cdc-paper.html?rss=1

UPDATE 2 July: The authors of the PNAS paper have decided it needs more work. Corresponding author Harvey Alter of the NIH Clinical Center, who is in Berlin this week, issued this statement on 30 June: "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." NIH spokesperson John Burklow explained to Insider that the paper had been accepted, but Alter and his co-authors decided to "pull it back" and revise it in response to questions raised by reviewers.

 

[CBS]

I think the big problem in CFS is that nobody knows what to do with us? Is it a brain disorder? An HPA axis problem? A circulatory problem? Or all of the above? We got kicked out of the immune Institute at NIH because researchers are finding so many other non-immune problems. But we didn't go to another Institute - we went to a nothing - an 'Office'...... that has, again, no money! Nobody knows what to do with CFS. Its not that people don't like CFS or there is some conspiracy going on against CFS - I think the main problem is that nobody knows what to do with us. If they decided CFS was a psychological problem we'd be getting tons of money...but they can't even decide that.

Cort,

This is where I get on my cohort soapbox. Who is 'US?' No wonder it is such a difficult subject.

We MUST stop comparing apples to kumquats! No wonder we're so confused, no one knows what they are studying. There is no shared language, no shared understanding. Patients, researchers and government agencies are still talking past each other - NO COMMUNICATION.

The research community has had 30 years to sort this out and we're still getting studies like the CDC XMRV debacle. When are we going to stop looking to the CDC to address this issue in a good faith manner?

Anything (past, present or future) short of the Canadian Consensus Dx criteria should be reclassified as a study of "persistent fatigue."

Better yet, reclassify everything that meets the CCDxC as a study of ME.

We can't wait for this to happen. It has to happen now. It needs to be THE top priority of both the IACFSME and the CAA.

 

[ahimsa]

bullybeef, thanks for that chronology of events (it's hard to keep track of what happened when).

I have a question about the patient sample used in the CDC study that could not find evidence of XMRV. Ignoring the other possible errors in that study (eg. wrong tubes used to collect blood?) I thought I read on one of the threads that of "CFS" patients used for that study only 50% had ever been to the doctor for their "CFS" symptoms and 75% of them had a gradual onset.

EDITED - I wish it were always true that the way to find information is to post that you can't find it, but that's what happened this time! I just found the information this article by Cort:

http://www.forums.aboutmecfs.org/content.php?180-The-CDC-XMRV-Study-How-Not-to-Find-XMRV

Cort called this "CFS-lite" but I really wonder how this can be any kind of CFS. Even patients with mild CFS symptoms generally have symptoms serious enough to check with a doctor. And serious CFS patients, even without insurance, would be going to the emergency room. Didn't even have symptoms serious enough to visit a physician? Hmmmm. It sounds pretty strange to me to call this any type of CFS.

Note - I believe that these people are really sick. I just wonder if they all have the same thing. Seems to me that sub-groups is a much better idea than trying to put patients with such a wide range of symptoms and disability into a single diagnostic label.

 

[MaryAnn]

Thanks bullybeef. This is a great list in chronological order, which clearly demonstrates irregular procedure and possible interference.

 

[alex3619]

HI Bob,

I hope you are right in post 386. I also suspect some of us who are xmrv- might turn out to have have one of the other MLVs Alter refers to.

Bye
Alex

 

[Mithriel]

That's an interesting observation...it is possible that they met both - they had more samples than they used; its possible that they purposefully took samples that fulfilled both definitions. In fact I would imagine that this is what they would do since the empirical definition has turned out to be such a loser, and nobody trusted it. Why add that factor into the equation? I assume that they took samples from empirical definition patients who also fulfilled the Fukuda criteria.

What they didn't state was that Wichita samples probably came from people who fulfilled the Fukuda criteria several years before their blood was drawn but not when their blood was drawn. When they got around to drawing the blood of those people they found that many of them no longer met the Fukuda criteria. They were definitely a "CFS-Lite" group.

Reading the paper, it looks as if they used the same samples that they have been using for all the papers about child abuse etc. I saw no evidence that they carefully chose people with the old Fukuda definition as well as the revised one. Assuming that they went back to the old one because the new one is "such a loser" is a leap of faith with no evidence. How would they find people who fulfilled both definitions? They have published lots of papers using this cohort already and show no signs of thinking there is anything wrong with the revised definition.

In fact by stating that anyone who has signs of disease, like the Canadian guideline patients, is actively excluded from having "CFS" they are coming out very strongly for the revised definition. Calling it the Fuduka definition and missing out revised is the usual ploy of using language to muddy the waters.

Mithriel

 

[Angela Kennedy]

Cort,

This is where I get on my cohort soapbox. Who is 'US?' No wonder it is such a difficult subject.

We MUST stop comparing apples to kumquats! No wonder we're so confused, no one knows what they are studying. There is no shared language, no shared understanding. Patients, researchers and government agencies are still talking past each other - NO COMMUNICATION.

The research community has had 30 years to sort this out and we're still getting studies like the CDC XMRV debacle. When are we going to stop looking to the CDC to address this issue in a good faith manner?

Anything (past, present or future) short of the Canadian Consensus Dx criteria should be reclassified as a study of "persistent fatigue."

Better yet, reclassify everything that meets the CCDxC as a study of ME.

We can't wait for this to happen. It has to happen now. It needs to be THE top priority of both the IACFSME and the CAA.

In the words of Father Dougal Maguire:

"He's right, you know. Ted."

 

[Angela Kennedy]

Yes, thanks very much indeed Bullybeef for this chronological record of events.

 

[John Leslie]

I have evidence in the form of an e-mail that at least one member of the CDC team who published the negative study received 20 XMRV positive samples from the WPI in September 2009. This was before the Science paper was published. The CDC, therefore, had 9 months to develop a clinically validated testing method to find XMRV when it was right in front of them. They instead used "the CDC" method that they used for the study and could not find ONE positive out of the 20 positives provided.

The CDC team then proceeded to use that failed testing methadology for the study.

Did all the research team know that this method did not work on the positive samples? Did all the senior officials of the CDC know this? Did the reviewers of the study know this fact? Why wasn't this disclosed in the paper? Will all the people who have the same e-mail at the CDC do the right thing and report that this is occuring. Is this conduct legal or ethical? Who can ask the authors why they did not disclose this fact? Will someone go to jail? Should someone go to jail? They KNEW they couldn't find XMRV and proved it to the world. Who would do this? We know that before Bill Reeves was reassigned he designed this study and worked on this study. What other questions should we ask and when? Who knew and when?

I am consulting with a lawyer on Tuesday. Thoughts?

 

[judderwocky]

Bob, what a comfort you are!

Irony comes across badly in forums, apparently. I'm glad to see some people caught it, at least.

for acknowledging that I did try hard to make amends and to ease the minds of those who were actually worried. I was starting to feel hopeless when it kept coming back up long after I'd removed all the traces I had any control over. It was like Frankenstein's monster.

I am feeling better today, as I mentioned in a post above. That's largely due to you and Esther12 and a couple of other people who PM'd me. Without you, I'd still be wondering if I'd crashed over some strange ME/CFS-edge and completely lost every scrap of social skills I have left, lol!

I screwed up, I did my best to fix it, and now I'm moving on.

Thanks so much, Bob! You really helped me get past this.

The petition has broke 400.... i really need people to post the link to other CFS blogs and groups if you can.... i'm having trouble getting into some of these other groups... people are naturally suspicious of outsiders.... if you are an insider anywhere... please encourage them to get the word out....

the only way we are going to be able to combat the CDC's awfulness is to make a strong show of collective/organized response...

if we can leverage just a bit more action and a bit more power... we can get more than the small 5 mil a year in research they throw at us.

 

[glenp]

John

I have evidence in the form of an e-mail that at least one member of the CDC team who published the negative study received 20 XMRV positive samples from the WPI in September 2009. This was before the Science paper was published. The CDC, therefore, had 9 months to develop a clinically validated testing method to find XMRV when it was right in front of them. They instead used "the CDC" method that they used for the study and could not find ONE positive out of the 20 positives provided.

The CDC team then proceeded to use that failed testing methadology for the study.

Did all the research team know that this method did not work on the positive samples? Did all the senior officials of the CDC know this? Did the reviewers of the study know this fact? Why wasn't this disclosed in the paper? Will all the people who have the same e-mail at the CDC do the right thing and report that this is occuring. Is this conduct legal or ethical? Who can ask the authors why they did not disclose this fact? Will someone go to jail? Should someone go to jail? They KNEW they couldn't find XMRV and proved it to the world. Who would do this? We know that before Bill Reeves was reassigned he designed this study and worked on this study. What other questions should we ask and when? Who knew and when?

I am consulting with a lawyer on Tuesday. Thoughts?

Thank you so much for stepping forward with this information

glen

 

[alex3619]

Hi judderwocky

I just posted your petition link to a very private group, I wont say who. Its up to them, but I think some will sign it.

Bye
Alex

.... if you are an insider anywhere... please encourage them to get the word out....

 

[glenp]

weeeeeeeeeeeee alex

I have been trying too --posted on the ME group and prohealth and my yahoo messenger friends

 

[Stone]

Along the subject line of not giving blood, I think we should make a public challenge to Reeves and his ilk to voluntarily put their money where their mouths are. I think we should ask them to sign a wallet card or advanced medical directive that they would be willing to receive blood from a patient diagnosed with CFS by a known CFS specialist. NOT that I'm proposing they would ever receive such blood (God forbid!), but I would love to hear what Reeves would say if he were on Oprah or 60 Minutes or something, and was asked if he would be willing to sign such a directive (which just happens to be on hand). I am NOT advocating any actual blood changing bodies, I would just like to see how he would respond to the challenge. I posted this before on another thread, but I think it would be much like that powerful scene in the movie, Erin Brokovich, when she tells the lawyers for the power company (who were denying that the community water was contaminated) that the very water they were drinking at that moment in the meeting had been brought in just for them from the area they falsely insist isn't contaminated. OF COURSE the water in the pitchers wasn't contaminated, but the looks on their faces was priceless. If you haven't seen the movie, I recommend it. Some of us can use a little pick me up like that right about now.