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FDA/NIH study - links to information and articles

Discussion in 'XMRV Research and Replication Studies' started by Bob, Aug 29, 2010.

  1. Bob

    Bob

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    Useful links to information regarding the FDA/NIH study


    FDA paper published in PNAS:
    http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf html

    FDA paper - Supporting information to FDA paper (technical):
    http://www.pnas.org/content/suppl/2010/08/16/1006901107.DCSupplemental/pnas.201006901SI.pdf

    FDA paper (extract) - Diagram of phylogenetic tree of MLV-related virus gag gene sequences taken from blood samples of CFS patients and blood donors (diagram only):
    http://www.cfids.org/mlv/phylogenetic-tree.pdf

    FDA press release:
    http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm223277.htm

    FDA Questions and Answers:
    http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/ucm223232.htm

    PNAS editorial:
    http://www.pnas.org/content/early/2010/08/16/1012027107.full.pdf html

    PNAS commentary:
    http://www.pnas.org/content/early/2010/08/16/1007944107

    Q&A: PNAS editor - Why I delayed XMRV paper:
    http://www.the-scientist.com/blog/display/57628/

    FDA Telebriefing - Transcript of the FDA telebriefing:
    http://www.wpinstitute.org/news/docs/FDAbriefing_082310.pdf

    FDA Telebriefing - A few highlights from NIH/FDA telebriefing - Aug. 23, 2010
    http://www.forums.aboutmecfs.org/sh...n-NOW-5-pm-EST&p=114941&viewfull=1#post114941
    http://www.forums.aboutmecfs.org/sh...n-NOW-5-pm-EST&p=115144&viewfull=1#post115144

    FDA Telebriefing - Recordings of the FDA telebriefing:
    http://www.forums.aboutmecfs.org/sh...n-NOW-5-pm-EST&p=115179&viewfull=1#post115179
    http://www.forums.aboutmecfs.org/sh...n-NOW-5-pm-EST&p=115183&viewfull=1#post115183

    NIH - Research Matters:
    http://www.nih.gov/researchmatters/august2010/08302010chronicfatigue.htm

    The CFIDS Association of America
    Follow-Up FAQs to the Study by Lo, Alter et al.
    September 2010 CFIDSLink:
    http://www.cfids.org/cfidslink/2010/090104.pdf


    Blogs:

    Phoenix Rising forum (Cort Johnson):
    http://www.forums.aboutmecfs.org/content.php?213-Four-Viruses-The-Alter-XMRV-Paper-Arrives

    CFS Central (Mindy Kitei)
    http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

    Patient Advocate (Christopher Cairns)
    http://cfspatientadvocate.blogspot.com/2010/08/second-most-important-day-in-mecfs.html
    http://cfspatientadvocate.blogspot.com/2010/08/xmrv-mlv-like-variant.html

    CFIDS Association of America (CAA) (K. Kimberly McCleary):
    http://www.cfids.org/mlv/caa-response-082310.asp
    http://www.cfids.org/mlv/phylogenetic-tree.pdf (phylogenetic tree - diagram only)

    Health Central (Karen Lee Richards):
    http://www.healthcentral.com/chronic-pain/c/5949/118461/retrovirus


    Newspaper Articles:

    Amy Dockser Marcus's blogs and articles in the Wall Street Journal (in order of date, most recent first):
    http://blogs.wsj.com/health/2010/08/26/betting-on-x-as-in-xmrv-with-a-big-ticket-research-center/#
    http://blogs.wsj.com/health/2010/08...t-in-chronic-fatigue-syndrome/?forumid=331851
    http://blogs.wsj.com/health/2010/08...onic-fatigue-syndrome-link-has-its-own-story/
    http://online.wsj.com/article/SB10001424052748703846604575447744076968322.html?mod=googlenews_wsj
    http://blogs.wsj.com/health/2010/07...-fatigue-syndrome-link-not-easy-to-tease-out/
    http://blogs.wsj.com/health/2010/07/01/cdc-teams-xmrv-chronic-fatigue-syndrome-paper-is-out/
    http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html
    http://blogs.wsj.com/health/2010/06/23/further-evidence-of-an-xmrv-chronic-fatigue-connection/

    New York Times:
    http://www.nytimes.com/2010/08/24/health/research/24fatigue.html?_r=1

    The Washington Post:
    http://voices.washingtonpost.com/ch...nce_virus_may_cause_c.html?xid=rss-topstories

    Medscape Today:
    http://www.medscape.com/viewarticle/727496

    Los Angeles Times:
    http://www.latimes.com/health/la-sci-fatigue-virus-20100824,0,127566.story

    Scientific American:
    http://www.scientificamerican.com/blog/post.cfm?id=new-research-linking-chronic-fatigu-2010-08-23

    Science magazine:
    http://news.sciencemag.org/sciencenow/2010/08/second-paper-supports-viral-link.html

    Daily Mail:
    http://www.dailymail.co.uk/health/a...igue-syndrome-caused-mouse-related-virus.html

    The Guardian:
    http://www.guardian.co.uk/world/feedarticle/9237473

    New Scientist:
    http://www.newscientist.com/article/dn19361-virus-link-with-chronic-fatigue-syndrome-resurfaces.html


    YouTube Videos from the WPI:

    Judy Mikovits reacts to the Lo/Alter paper
    http://www.youtube.com/watch?v=9ZEwQUg7o6I&feature=channel&forumid=331851

    WPI congratulates Alter and Lo
    http://www.youtube.com/watch?v=ne7if7FKJFg&feature=channel



    Other Phoenix Rising discussion threads:

    There's another Phoenix Rising thread with a list of scientific and media links here:
    http://www.forums.aboutmecfs.org/sh...age-of-Dr.-Alters-NIH-paper-post-stories-here
     
  2. Bob

    Bob

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    Have I missed anything obvious?

    Please add any other useful links
     
  3. VillageLife

    VillageLife Senior Member

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    thanks very much Bob
     
  4. shannah

    shannah Senior Member

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  5. taniaaust1

    taniaaust1

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    crap.. we doubled up on the work there.. i spent all my energy today looking for links.. i did a list of sources which can be used in advocacy today which consisted of

    1st XMRV WPI study (Lombardi) http://www.sciencemag.org/cgi/content/abstract/1179052
    wall street journal on 1st XMRV study, XMRV and prostate cancer http://blogs.wsj.com/health/2009/10/...igue-syndrome/
    2nd XMRV/MLV study (Atler) http://www.pnas.org/content/early/20...01107.abstract
    3rd study (soon to come fully out)
    Aust. Redcross about blood ban http://www.donateblood.com.au/news-e...s-donor-policy
    Wall Street Journal ME/XMRV/MLV http://blogs.wsj.com/health/2010/08/...igue-syndrome/
    Wall Street Journal ME/XMRV/MLV http://online.wsj.com/article/SB1000...076968322.html
    FDA Questions and Answers on MLV. http://www.fda.gov/BiologicsBloodVac.../ucm223232.htm *
    Testing of MVL and XMRV, we havent yet got http://www.vipdx.com/docs/Test_Requisition.pdf
    "Findings by Reno Scienctists" talks about clinical trial etc http://www.rgj.com/article/20100816/NEWS/100816069/1321 (great article thou need to point out if using it.. that the FDA findings are now out and include that too)
    Corts Overview, Four Viruses, The Alter Paper Arrives http://www.forums.aboutmecfs.org/con...-Paper-Arrives
    Unofficial PR poll on prevalence in families http://www.forums.aboutmecfs.org/sho...e-Poll-Take-II
    "Second Study Supports Viral Link to CFS" http://news.sciencemag.org/scienceno...iral-link.html (good article to attach to any advocacy for more funding!)
    XMRV and prostate cancer http://www.plospathogens.org/article...l.ppat.0020025
    Article XMRV/CFS http://edition.cnn.com/2010/HEALTH/0...E2dQ&wom=false (very good article content to use for most things thou uses heading "chronic fatigue")
     
  6. highwaykind

    highwaykind

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    I'm a newbie here on the forums (post viral cfids, 10 years and counting, so no newbie in that regard) so I don't know if this has already been asked.
    Also sorry to break in and go slightly off topic.

    Has anyone already grouped/ organized all research articles/info into a Group in Zotero and/or Mendeley?

    Both free software to catalog research articles, add your own summary/comment. You can also add links to files and webpages etc. When you have a pubmed ID or doi numer it will auto-fetch the article/author etc for you.

    Zotero http://www.zotero.org/ works with Firefox, Mendeley http://www.mendeley.com/ is standalone and has plugins for several browsers. (Zotero optionally syncs to Mendeley). I have both installed, but only have been using them for a few days, I don't know which is 'best' yet - but it definitely beats having links bookmarked or in a row online :)

    There is so much to look through I don't know where to start! Having all articles with the option of a 'read/not read' mark and my own summary might help narrow things down a little.
     
  7. Bob

    Bob

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    Yes, I'm exactly the same Shannah... it's exactly 10 minutes isn't it, our memory span!
    I'm sure that there was one really important article, or editorial, that I read, but I just can't remember what it was or who it was written by, so I haven't been able to include it.

    Thanks shannah, I've added your links to my list to make it easier for people...
     
  8. Bob

    Bob

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    Great stuff Tania... a great set of links... you've got a whole set of useful links to the XMRV study there as well...
     
  9. Bob

    Bob

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    Hi highwaykind...
    A big welcome to the forum to you... You're amongst friends here... I hope you enjoy using the forum...
    I haven't heard of Zotero or Mendeley... I'll have a look at them.
    Enjoy the forum,
    Take care,
    Bob
     
  10. Gemini

    Gemini Senior Member

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    Bob,

    Thanks for all your work!

    It's "really" helpful to have everything in one place!

    Gemini
     
  11. Sean

    Sean Senior Member

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    There is a distinct and inexcusable lack of chocolate cake.

    :D



    Seriously, great lists (Bob & Tania). Very useful. Saves a whole lot of hunting around. Thanks.
     
  12. Bob

    Bob

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    Yes, that's a totally inexcusable oversight! I don't know what I was thinking about! Sorry, I'll sort it out ASAP! heehee... :D
     
  13. Bob

    Bob

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    Has anyone got any links to any UK newspaper articles? I've only come across the Daily Mail so far.
     
  14. Bob

    Bob

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    Does anyone know if there is an article or editorial from the FDA?

    I'm sure that I've missed out a useful article that I read, that I just can't find anywhere.

    I can't remember what it was.
     
  15. jace

    jace Off the fence

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    This is an interesting science based analysis, bit of a tough read, with a lucid comment on the implications drawn from the telebriefing with Alter and Lo:
    http://laikaspoetnik.wordpress.com/2010/08/30/does-the-nhifda-paper-confirm-xmrv-in-cfs-well-ditch-the-mr-and-scratch-the-x-and-youve-got-mlv/#comment-5693

    Might be valuable reading for certain forum owners.

    British press links:
    http://edinburghnews.scotsman.com/features/Health-Baby-Sophia-is-a.6498777.jp?articlepage=1 (Alter paper mention only)
    http://www.guardian.co.uk/world/feedarticle/9237473
    New Scientist with McClure :worried:
    BBC disability forum (and that's all folks :scared:)

    Other coverage - Iran!!
    Malta (not great, tiny mention) Hong Kong (reprint of NYT, and behind paywall..)

    Scan from Malta Today (article not online) below
     

    Attached Files:

  16. Bob

    Bob

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    Thanks for the info Jace :Retro smile:
     
  17. taniaaust1

    taniaaust1

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    I suggest to try their site. I think I may of read something on XMRV at the FDA site.
    ..................

    To everyone.. sorry about the links Ive posted if they didnt work, Im not sure what I did wrong but have just found out that apparently many of them arent working (I had just cut and pasted them off of the relevant pages, so assumed they were all working), so i'll check them out and fix hopefully in next few days.
     
  18. LJS

    LJS Insert Witty Comment Here

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