1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
Discuss the article on the Forums.

ERV (Scienceblog.com)'s take on CDC's paper....and Alter's paper's review process...

Discussion in 'XMRV Research and Replication Studies' started by dean, Jul 1, 2010.

  1. dean

    dean

    Messages:
    80
    Likes:
    0
    Here is the link

    http://scienceblogs.com/erv/2010/07/xmrv_and_chronic_fatigue_syndr_15.php

    The big XMRV news last week was that the NIH had confirmed the original WPI paper regarding XMRV and CFS. Or, as sue so eloquently put it:

    http://www.mmdnewswire.com/xmrv-9040.html
    HA read it and weep you stupid cunt

    Unfortunately for the oh-so-civil sue, I wasnt entirely surprised at someone else in the US finding the XMRV-CFS connection (see my October 23, 2009 post on the topic). I am completely open to the idea that XMRV is endemic in the US, and is better able to infect certain immunocompromised citizens, which may or may not cause or perpetuate diseases of some kind. However, replicating the WPIs results in no way justifies the reasons I have written negatively about WPI in the past-- Judy accusing other researchers of fraud/collaborating with snake-oil salesmen/supporting anti-vaxers, Annettes shockinglyinappropriate behavior, or people randomly experimenting on themselves with antiretrovirals.

    So, okay, I was patiently waiting for this paper to come out... when Grant Jacobs, a blagger in New Zealand alerted me to some 'controversy'. Really? Controversy and stupid drama in XMRV research? Oh I just dont believe it!!!

    But the story wasn't as simple as that. 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of the National Academy of Sciences (PNAS), has been put on hold because it directly contradicts another as-yet-unpublished study by a third government agency, the U.S. Centers for Disease Control and Prevention (CDC).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.
    *rubstemples*

    *rubstemples*

    *headdesk*

    Sooooo... the 'positive' paper was submitted by Harvey Alter to PNAS. Harvey Alter is a NAS member, so this paper had, um, 'a different peer review history' than you all are accustomed to. Normally, you send a paper to a journal, and they send the paper out to three reviewers, and they give the journal editor a thumbs-up or thumbs-down. When you are a NAS member submitting to PNAS, you pick your own reviewers and send in your own reviews. So, you could, like Lynn Margulis, send a controversial paper out to seven people to get two 'good enough' reviews, and be accepted for publication.

    Just to be 100% clear, Alter isnt doing anything 'wrong', even if he sent it out to 50 people to get two good reviews. He wouldnt be doing anything 'sneaky' and its not 'cheating', thats just the way things work at PNAS. Which he must understand is a valid concern for Average Joe/Jane scientists who also know how PNAS works. And considering the crap PNAS got for publishing that insane 'caterpillars and butterflies are two different species!' weird ass paper for Margulis, I dont blame them at all for being 'nervous' about not looking-before-they-leap into this controversy.

    But I do think this is funny considering the holy hell that was raised over the first negative study at PLOS: "WARBLEGARBLE IZ NUT REVIEWEDED! PLOS SUX!"

    Anyway, now the 'held up' paper in Retrovirology from the CDC, was actually published this morning.

    And its fine.


    Western Blot-- They looked for antibodies to XMRV in 51 CFS patients and 53 matched controls, 121 random blood donors, and sera from 26 people infected with a retrovirus (HTLV, HIV-1, and/or HIV-2). Their positive control sera lit up the appropriate bands for Gag and Env. None of the other samples had any antibodies to XMRV.

    ELISA-- They also sent the CFS + matched samples off to another lab for blinded testing-- this other lab had no idea which samples were from CFS patients, and which were from the matched controls. With ELISAs, you put a LOT of the protein of interest (Gag, Env) into a well, instead of just a band in a gel in a Western, and look for reactivity. They found a couple weakly positive samples for Gag (not Env), one CFS, one control-- but those couldnt be confirmed with a different test. They were also sent positive and negative controls, which they were also blinded to, and they properly identified them.

    PCR-- They used the same damn PCR as WPI, and then a separate primer set they designed. They could see 10 copies of XMRV diluted in human genomic DNA for their controls. They couldnt find it in whole blood or PBMC from the CFS+matched set, or 41 totally different (not the ones used in the Western test) blood donors.

    They also sent their stuff to another lab for blinded testing, with blinded positive and negative controls. Positive were positive, negative were negative, and none of the experimental samples had any XMRV.

    They used the same definition of CFS (1994 CDC Fukuda Criteria) as the Science paper. They used the same PCR conditions. They had two different labs blindly double check their findings two different ways. They couldnt find XMRV in healthy blood donors to an appreciable degree, much like BigPharma (WPI also did not find antibodies to XMRV in healthy donors, but for some reason is sticking with their 3.7% PCR number).

    So what did this paper do 'wrong'?

    Whats the excuse now?

    And what did Alter do that was so magically different that his lab could replicate the Science paper?
  2. CBS

    CBS Senior Member

    Messages:
    1,354
    Likes:
    202
    Western US
    Please, I'll go to ERV's site if I care what she thinks.

    Is anyone here incapable of finding her site if they wanted to see it?

    Let's stop posting this inflammatory rubbish (edited).
  3. Mark

    Mark Acting CEO

    Messages:
    4,412
    Likes:
    1,718
    Sofa, UK
    Got to agree with CBS really, ERV's BS is not popular here. The quibble over numbers of reviewers is mildly interesting if true (which is always doubtful with ERV), but when compared to the PlosOne study-u-like I very much doubt it holds water as a comparison. But the rest of ERV's piece just the usual rubbish.

    Apart from anything else:
    Oh really, so the Science criteria was CDC Fukuda Criteria now was it? You see how far ERV's attention to detail and knowledge of the field extends now? Now what does "the same PCR" mean we wonder? Pure gibberish. Don't believe a word of it. End of.

    And neither do we need to publicise here her all-innocent complaint about someone using a word she's been happily bandying around herself for months now.
  4. dean

    dean

    Messages:
    80
    Likes:
    0


    Is CBS's reaction the consensus of the forums members? Should I really not post something about our disease because we allow ourselves to be intimidated???? Do we stop posting whatever we think might be important to finding an answer. Should we submit posts first to see if someone is going to tell us to stop posting......

    And who is ERV anyways that someone is so afraid of her ideas
  5. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    7
    Europe
    CBS may i ask you to watch your language. I'm not a moderator. I'm asking you as a fellow member to this community, thankyou.
  6. dean

    dean

    Messages:
    80
    Likes:
    0
    The issue is not the number of reviewers for members papers submitted to PNAS, but that you can choose your own reviewers..... This may or may not be important, but it was a fact.....

    http://www.pnas.org/site/misc/iforc.shtml#submission

    PS This where Duesberg published his paper saying that HIV did not cause AIDS....
  7. Rivotril

    Rivotril Senior Member

    Messages:
    154
    Likes:
    0
    I read for a few seconds, but I read:
    "They used the same definition of CFS (1994 CDC Fukuda Criteria) as the Science paper."

    so this blogger is totally not knowing where hes writing about, even the biggest newby in this business knows Lombardi didnt use this criteria

    what a CRAP
  8. dean

    dean

    Messages:
    80
    Likes:
    0
    The definition of of the cohort is one of the major stumbling blocks in every study of CFS and can be parsed indefinitely. What about the negative findings in everyone....
  9. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    103
    England
    erm....

    IMO

    no
    no
    no
    no
    no

    afraid? no, concerned

    we should be aware of other arguements, points of view, and misinformation - hers is afterall the majority view amongst the uninformed - we SHOULD pay attention to it - or would people suggest we ignore a hostile foriegn power building nukes because we dont like what they say about us - IMO it's important to know what people opposed to us are doing
  10. Rivotril

    Rivotril Senior Member

    Messages:
    154
    Likes:
    0
    i understand that but its not true to say that Lombardi /science also used these criteria...its just stupid and lack of knowledge of the facts
  11. ahimsa

    ahimsa Senior Member

    Messages:
    960
    Likes:
    705
    Oregon, USA
    There are millions of web sites out there. I prefer to read information, whether it's about ME/CFS or something else, that is presented without snark, mean-spirited comments, name calling, making fun of people (lulz), and lots of "yelling" at each other in the comments section (from ERV supporters and from the ME/CFS patients who hate her).

    To me, reading ERV's blog to find out information about ME/CFS (she called it "a cadre of non-specific mehs") is like listening to Rush Limbaugh to find out about Parkinson's disease (Re: his infamous imitation of having Parkinson's, shaking around in his chair, pretending to be Michael J Fox). It's entertaining for those who like making fun of people but has little substance or depth.

    I don't think it is wrong to post links to her blog (and I'm not a moderator so my view doesn't really matter anyway). But I do find it strange that people obsess over ERV (either wanting to attack her or wanting to support her). I read a few posts from her blog, figured out her style, and then stopped reading it. Many folks on this forum have a similar view.

    There's a huge difference between ignoring a blog and being afraid of it.

    Marjorie
  12. CBS

    CBS Senior Member

    Messages:
    1,354
    Likes:
    202
    Western US
    No throwing nukes here, just (inflammatory rubbish).
  13. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    103
    England
    I seriously doubt anyone reads her blogs to get information about ME - misinformation maybe - but not information

    edit - CBS

    fair enough - but sling enough and it sticks - especially if the people it's being slung at ignore it
  14. dean

    dean

    Messages:
    80
    Likes:
    0
    Keep your friends close and keep your enemies closer......

    with this in mind I do not think that people who have different ideas than me are enemies, and I thrive, (as much as I can these days) on people with different ideas, someone knowing something that I dont..........I just want to know the facts and to talk about them....all the facts....
  15. CBS

    CBS Senior Member

    Messages:
    1,354
    Likes:
    202
    Western US
    Dean,

    Your other thread seems to have been deleted along with my response ( I'll check again but at least that's how it looks).

    For those no privy to my comment on the other thread I'll repeat it here.

    She's a troll (who happens to have a site) who mixes some science (what ever fits her needs at the time) with a huge dose of bigotry (and she hides behind just trying to help those poor misguided souls with CFS - a subject upon which she is deliberately ignorant). She's been the topic of far too many long discussions on this site and the impact of her inflammatory language has not been constructive in this forum. Enough said.

    Please feel free to delete this thread as well.
  16. Min

    Min Senior Member

    Messages:
    946
    Likes:
    428
    UK

    I'd like the bad language to stop too please. There's no need for rudeness.
  17. dannybex

    dannybex Senior Member

    Messages:
    2,111
    Likes:
    477
    Seattle
    I don't understand it either...

    I don't understand why it's necessary or even helpful to post a link to a blog -- any blog -- where we KNOW the blogger is extremely hostile, completely disrespectful, and WANTS the attention. What good purpose at all does that serve by posting her nasty opinions?

    Sure, some will say, well, don't click on this thread, don't read it, etc..

    But people will do that, people perhaps unfamiliar with the blog, and it will make some people very upset, just as the CDC thread has, but in a completely different way.

    Also -- WE WILL NEVER, EVER BE ABLE TO CHANGE ERV'S MIND, NOR HER TONE. We cannot change what we cannot control -- which is her attitude, her mind. Our "energy" is better spent elsewhere.
  18. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    103
    England
    CBS

    hmmm.. remind you of anyone? reminds me of pretty much everyone official who deals with ME (at least in the UK and it seems the US as well) - hence the opposition - good idea to keep abreast of what they say? apparently not

    inflamitory language? yep - it's designed to wind people up - ignore it - well dont ignore it - but it's irrelevant and serves only to distract

    too many posts - you bet - but it's far from the only thing causing a lot of posts
  19. dean

    dean

    Messages:
    80
    Likes:
    0
    Thank you cbs....i will go back and read more of her blogs regarding both cfs and other subjects and make up my own mind......but dont tell others what to post and not to post... and I am very sensitive about this.... There are probably some people on this forum who would listen to you .... intimidation by anyone, especially a "senior" member isnt welcome....
  20. dannybex

    dannybex Senior Member

    Messages:
    2,111
    Likes:
    477
    Seattle
    I'm with CBS on this one. Posting her blog serves absolutely no purpose whatsover. I say please, delete this thread.

See more popular forum discussions.

Share This Page