- One of the CDC slides from last week’s Blood Safety Advisory Committee meeting showed that the CDC tested 20 samples from Chronic Fatigue Syndrome (CFS) patients that the Whittemore Peterson Institute (WPI) found to be positive for the retrovirus XMRV. But, according to the slide, the CDC didn’t find any positives among those 20. WPI sent those samples last fall to the CDC, and the CDC tested the samples before submitting its paper to Retrovirology. Did Retrovirology know that the CDC had tested those WPI samples?
- If Retrovirology did know, why was that information omitted from the CDC’s XMRV CFS paper?
- If Retrovirology didn’t know, will the CDC’s XMRV CFS paper be amended to include that the CDC didn’t find any positives in those WPI samples?
- Given that the CDC couldn’t confirm any of the Whittemore Peterson Institute’s 20 positive samples, why did the CDC scientists or Retrovirology conclude that the CDC’s methods were accurate?
- When the CDC posted the slide at the Blood Safety Advisory Committee meeting, the CDC put quotation marks around the word “positive,” implying, perhaps, that the 20 samples the WPI sent to the CDC were contaminated. Was this belief something that the CDC scientists shared with Retrovirology?
- In the CDC XMRV study, it says: “The Lombardi et al. study specifies that samples were selected from patients fulfilling the 1994 international CFS case definition and the 2003 Canadian Consensus Criteria for CFS/ME…. Most notably, the Canadian Criteria include multiple abnormal physical findings such as spatial instability, ataxia, muscle weakness and fasciculation, restless leg syndrome, and tender lymphadenopathy. The physical findings in persons meeting the Canadian definition may signal the presence of a neurologic condition considered exclusionary for CFS and thus the XMRV positive persons in the Lombardi et al. study may represent a clinical subset of patients."
Dr. Jeang, not only the Canadian Consensus Criteria, but the 1994 Fukuda definition (AKA the 1994 International Case Definition of CFS), which is listed on the CDC’s website as the agency’s official definition for the disease (http://www.cdc.gov/cfs/general/symptoms/index.html) includes multiple physical findings. Indeed “tender lymph nodes” is listed as a diagnostic criterion for CFS on the CDC website. In addition, “difficulty maintaining upright position, dizziness, balance problems or fainting” are neurological findings listed as common CFS symptoms on the CDC website.
Is the CDC’s XMRV paper saying, then, that the patients who exhibit these physical and neurological symptoms may no longer meet the CDC’s very own case definition of Chronic Fatigue Syndrome?
Here is the reply from the press office:
"Sorry to take so long to get back to you. After reviewing these questions I feel it would be more appropriate for you to contact the NIAID [National Institute of Allergy and Infectious Disease] press office as these questions are more relevant for them than the journal. Details can be found here: http://www.niaid.nih.gov/news/mediainquiries/Pages/contactinformation.aspx
"However, Retrovirology, has issued this statement:
"Retrovirology always evaluates all materials submitted to the journal through a stringent peer-review process. The confidentiality clause prevents us from providing any details of the peer-reviews. Retrovirology is not responsible for content that is not submitted to the journal, nor can it comment on anything that is not submitted for consideration to the journal."
This article is copyright CFS Central 2010. All Rights Reserved. You may quote up to 150 words from this article as long as you indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is by Mindy Kitei for CFS Central. You may not reprint more than 150 words from this article on blogs, forums, websites or any other online or print venue. Instead, refer readers to this blog to read the article.
"However, Retrovirology, has issued this statement:
"Retrovirology always evaluates all materials submitted to the journal through a stringent peer-review process. The confidentiality clause prevents us from providing any details of the peer-reviews. Retrovirology is not responsible for content that is not submitted to the journal, nor can it comment on anything that is not submitted for consideration to the journal."
This article is copyright CFS Central 2010. All Rights Reserved. You may quote up to 150 words from this article as long as you indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is by Mindy Kitei for CFS Central. You may not reprint more than 150 words from this article on blogs, forums, websites or any other online or print venue. Instead, refer readers to this blog to read the article.
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More non-answers. Thank you, Mindy, for continuing to press the CDC and Retrovirology for answers. Their continuing evasiveness emphasizes their incompetence.
ReplyDeletePatricia Carter
www.mecfsforums.com
"Retrovirology is not responsible for content that is not submitted to the journal, nor can it comment on anything that is not submitted for consideration to the journal."
ReplyDeleteApparently Retrovirology isn't responsible for, nor can it comment on, anything that IS submitted to the journal, either.
I wonder why they feel it would be more appropriate for the National Institutes of Health (NIH) to respond to questions about the CDC article published by Retrovirology? There is nothing in the CDC study that indicates the NIH had anything whatsoever to do with it. And why would the NIH be the ones to answer questions about the CDC's (Fukuda) CFS case definition?
It's bad enough that Retrovirology would stonewall and give you the runaround, but to give you a runaround that makes no sense is just insulting, both to you and to the intelligence of your readers.
I suspect that Retrovirology may be damaging their own reputation by defending a "stringent" peer-review process that overlooks obvious flaws. I still have faith that science is self-correcting. I believe that it will show that the journals Science and PNAS have earned their good reputations for careful peer-review.
CORRECTION
ReplyDeleteMindy, an amusing error in your first sentence that you may want to correct asap:
"Retrovirology published the CDC XMRV study in Judy that didn't find any positives..."
Did you mean "July?"
I did enjoy the moment of levity and delight reading this... er... Freudian slip?
Cheers from all of us for your relentless pursuit of CDC and Retrovirology. Thank you so much. You have legions of ill but now-inspired patients cheering you on heartily!
Anonymous, Sometimes a cigar is just a cigar. And sometimes it isn't. I laughed as well, and amended the word. Thanks.
ReplyDeleteThanks as always Mindy for staying after these purveyors of double-speak. Sadly, I'm learning to read it. I speak jive. :)
ReplyDelete1) "Retrovirology always evaluates all materials submitted to the journal through a stringent peer-review process. The confidentiality clause prevents us from providing any details of the peer-reviews."
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We evaluate everything we see to our oh-so-exacting standards. Despite the fact that the CDC couldn't demonstrate that it could find XMRV in blood (at all), this was a perfectly valid study design. Our peer reviewers are actually out of work actors. Nothing to see here. Move along.
"Retrovirology is not responsible for content that is not submitted to the journal, nor can it comment on anything that is not submitted for consideration to the journal."
------------------------------------------------
The CDC never said anything about those WPI samples. That's our story and we're sticking to it.
I think everyone is just in protection mode now. They need to know we are watching and that they will be asked difficult questions when something looks "odd". And there are alot of "odd" things going on here. Thanks for pushing for those answers Mindy!
ReplyDeleteI agree with Frickly, now they know, with your expert penmanship, that you are watching and we, the patients that have been ill for decades, are watching as well.
ReplyDeleteThey are cornered. They need to do the right thing.
Kati
Continued stellar journalism.
ReplyDeleteI too wonder at Retrovirology's response. Why would they refer you to NAIAD? It is under the NIH, which is a fellow department to the CDC, both under HHS. I'm not sure about US government organization, but wouldn't that be like suggesting to ask a department of the CIA about something the FBI did (and didn't) do?
I read a comment lately (sorry - can't remember who to attribute it to) that I thought was perfect, something to the effect that looking at the CDC and ME/CFS is kafka meets catch-22.
Looks like we can add Retrovirology to that mix.
Why did CDC do this XMRV study in the first place? If you think about it - CDC says that testing for retroviruses is not diagnostic and meaningless and specifically say NOT to test for them. So why are they doing it - wasting time and (our) money? Reminds me of "stupid is as stupid does."
ReplyDeleteJill McLaughlin
"Mommy, I finally found out what I want to do with my life."
ReplyDelete"O honey, what is it?"
"I'm gonna be a press officer, just like uncle Matthew!"
"In that case: why didn't you take out the trash last night?"
"I feel it would be more appropiate for you to ask the trashbin mom, as this question is more relevant for him than me."
Or: Why does the bakery refer to the hardware-store for answers about bread?
Or: "Retrovirology is not responsible for content that is not submitted to the journal, nor can it comment on anything that is not submitted for consideration to the journal."
Or: CDC didn't tell us about no WPI samples and we didn't ask. Nor will we. Why should we? Who do you think you are woman? Stop bugging us!
CDC's CFS research group should be arrested for treason by the United States government and sent to jail for willful neglect and conspiracy to murder their own citizens.
ReplyDeleteIt is approaching 12 months since the WPI SCIENCE paper went public, and to this day nothing has changed from the CDC's media spin of 'no comment' regarding XMRV in CFS. Why?
Why are CFS patients so hated, marginalised and neglected? What have we done wrong? We are humans like everyone and demand to be treated equally.
An estimated 10 million Americans are infected with XMRV and the CDC are in total denial. XMRV has also been found in USA, UK, Germany, Belgium, Japan, Australia and other countries. It's obviously a global pandemic virus.
The CDC's job is to advise the public and treat this public health emergency and not to simply ignore it and suggest we move on as if nothing has been found.
CFS patients have on average the same disability as end stage AIDS with 1 in 4 people unable to leave the home. Despite this, CFS patients are to this day, denied basic medical care, health insurance and even recognition their disease exists!
One would have thought, logically, once XMRV was found in 98% of well defined CFS patients by the WPI, the CDC would have acted immediately to help these people by funding high quality research and making a public statement, but no. The CDC said XMRV does not exist *at all* in CFS patients and found a zero percent rate.
Meanwhile CFS patients are getting positive XMRV blood tests results back from WPI and VIPDX. Does this not mean something CDC?
Should the public just ignore their own tests results showing they are infected with the world's only 3rd human exogenous retrovirus when they already have a neuro immune disease called CFS?
It's the CDC's duty to protect the American public and they have failed utterly and continue to do so.
So Retrovirology has no knowledge of what it knew, how it interpreted what it knew, or whether they intend to follow up things they (presumably) did not know. Instead, they suggest that NAIAD could answer tell you these things. (Using what, a ouija board? Someone reading tea leaves?) I expected Retrovirology to stonewall, but their response is so random it's surreal.
ReplyDeleteLOL, Otis, re out-of-work actors. I'm an out-of-work actor myself. God, I miss my career. But now I know I can apply to evaluate scientific papers for Retrovirology from my bed, where I am confined due to ME/CFS. My brain fog and delirium (caused by high fever) should get me the job in no time! Life is good!
Peer reviewers at Retrovirology can only work with the manuscript as presented. If the CDC authors did not include information about the WPI samples peer reviewers do not generally have ESP.
ReplyDeleteThey could however have requested that the CDC run the tests again using positive controls. However there is no way to know if this request was made given Retrovirology's policies.
Not all journals provide pre-publication history. More information regarding policies specific to the journal are available on the journal website
It's interesting that the sharper and tougher your questions, more they seem to decompensate into meaningless babble.
ReplyDeleteI do believe that most of these people simply don't believe that CFS is a disease. At the very top, Fauci and Colllins, I think they know very well what CFS is but they've staked 20 years reputations on not acknowledging it.
btw, the Kafka meets Catch-22 phrase is mine.
michael a.
Mindy many patients don't know how to comment here. If patients don't have a Google Account, LiveJournal, WordPress, TypePad, AIM or OpenID, does Name/URL mean we can reply with a first name and our email address? I know you only print first names which is good.
ReplyDeleteAnonymous, I don't know the answer to your question, but getting a Google email address is pretty simple, so why don't readers just do that?
ReplyDeleteAs the previous message stated: "It's interesting
ReplyDeletethat the sharper and tougher your questions, more
they seem to decompensate into meaningless
babble," the same could be said of the CFIDS
Association of America (CAA).
All of the work and investigation that Mindy has
been doing, and with the numerous blogs and
newsgroup discussions, the CAA appears oblivious,
and when asked they stonewall, dissemble or give
completely meaningless, irrelevant responses
(non-answers). The CAA has shown no concern
or even awareness of the changes to the CDC
site and content or of the concerns with the CDC
XMRV paper or that the hold of the Alter/NIH
paper was anything out of the ordinary.
With all of the ongoing problems with the CDC,
remember that the CFIDS Association was working
closely with the CDC for many years up until a year
or so ago, and has received multi million dollar
contracts from them, so in fact they have been a
part of most of what has occurred. (Is the CAA is
still receiving contract money from CDC for that
awareness campaign?)
The CAA has been worse than incompetent but
has been an impediment. They trashed Osler's Web,
did not support investigations, they've repeatedly
failed to address important issues with the
name/definitions, direction of research and the
message and information that the gov't has put out
(and they actually helped distribute it), they've
repeatedly been obstructionist and stopped name
change efforts, and when there has been press
coverage they use nothing but PC/CDC talking
points to the media etc.
The CAA has been constantly out of touch with
the needs and concerns of the patient community
(as their plummeting membership base would
indicate). And now, they do NOT seem to realize
that there's a problem? And we wonder why there
has been no progress? The CAA emperor has no
clothes.
I'm not surprised by the answers, and I agree that as your tip of the truth spear becomes more dangerous, they become more evasive.
ReplyDeleteI would love to think that someday you can 'draw blood', but given its' history and how powerful the CDC and its' alliances are, I admit I am doubtful.
Gawd, I am hope I am wrong.
Thank you so much Mindy. Your spear is starting to touch their 'bad parts' and they are scared.
Thank you for continuing to press on for answers on our behalf.
ReplyDeleteThank you Mindy! http://vlgonvalcyte.wordpress.com/
ReplyDeleteWith a $170,000+ salary, I think the CAA empress can afford quite a bit of clothes!
ReplyDeleteAnd that's certainly a lot of cash for what little the CAA does for it's constituents.
Oh, I just love this - If we have to listen to one more line of his distortion about how great the CAA is - well honestly does he think no one knows the history of this horrible McCleary propaganda.
ReplyDeleteI hate to think anyone would criticize WPI/Mikovitz. They should be right in there fighting along with them.
But glad somebody told Cort to basically "shut up". Yes!!
http://cfschronicles.blogspot.com/2010/08/dear-cort-please-get-your-facts.html
http://www.cfscentral.com/2010/08/journal-retrovirology-responds.html
Sorry if this double posts; I think Blogger ate my original comment.
ReplyDeleteHow's this for a sharp and tough question: ask the guys at the CDC if they or their families have begun taking any anti-retroviral medications lately?
I wouldn't put it past them to deny publicly the significance of XMRV while simultaneously privately doing all they can to protect themselves and their families from it.
The anonymous poster above has it right about the CAA, if CDC wasn't bad enough CAA helped them do their job of branding the undiagnosable untestable unbelievable CFS. Now that I have read your timeline in Commotion in the blood and discovered that they knew ME was like AIDS and were searching for a retrovirus in 1987 it makes me even angrier about CDC calling it CFS in 1988.
ReplyDeleteTom Hennessy of RESCIND wrote about the early efforts he made to get the name changed back to ME. He was interviewed by Larry King, and you would think that kind of media clout would have been an asset to a patient organisation. CAA ignored him, and Marc Iverson eventually quit CAA, the name issue being one of the problems he had with them. CAA has a lot to answer for, and Mindy I think you should interview Tom to get the story.