The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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List of links... research, news, info etc

Discussion in 'General ME/CFS News' started by Bob, Nov 5, 2010.

  1. Bob

    Bob

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    I have just compiled a long list of internet links, mainly to information about XMRV research, but also to all sorts of other info... I made the list for someone who was doing some research, and I thought I'd post them here too, in case any of them are helpful for anyone.


    Links to resources, information and articles


    ________________________________________

    Initial discovery of XMRV in prostate cancer patients

    XMRV was first discovered in 2006 in prostate cancer patients. Here is the published research paper...
    "Identification of a novel Gammaretrovirus in prostate tumors of patients homozygous for R462Q RNASEL variant." 31st March 2006. by Urisman A, Molinaro RJ, Fischer N, Plummer SJ, Casey G, Klein EA, Malathi K, Magi-Galluzzi C, Tubbs RR, Ganem D, Silverman RH, DeRisi JL.
    http://www.ncbi.nlm.nih.gov/pubmed/16609730?dopt=Abstract&holding=f1000,f1000m,isrctn

    ________________________________________

    WPI's Science paper was published in Oct 2009 (XMRV discovered in ME/CFS patients)

    The Paper published in Science:
    http://www.sciencemag.org/cgi/content/abstract/1179052


    Articles and information published soon after the WPI's Science paper was published in Oct 2009:

    http://www.cancer.gov/newscenter/pressreleases/CFSxmrv

    http://oslersweb.com/blog.htm?post=638469

    http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

    http://www.meresearch.org.uk/information/publications/xmrvfind.html

    http://aboutmecfs.org/blog/?p=920

    http://www.investinme.org/WPI-Research-01.htm


    ________________________________________

    WPI website, explaining XMRV (Judy Mikovits, working at the WPI, discovered XMRV in ME/CFS patients):

    http://wpinstitute.org/xmrv/xmrv_qa.html

    ________________________________________

    Information regarding the FDA/NIH study published in 2010 (PMRV’s discovered in ME/CFS patients):


    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/


    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 regarding the FDA discovery of PMRV’s in ME patients:

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

    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)


    Newspaper Articles regarding the FDA discovery of PMRV’s in ME patients:

    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/

    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

    ________________________________________

    Amy Dockser Marcus's XMRV blogs and articles in the Wall Street Journal (in order of date, most recent first):

    http://blogs.wsj.com/health/2010/11/04/whats-next-for-x-as-in-xmrv/

    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/


    ________________________________________

    European positive XMRV studies:


    Germany
    XMRV found in respiratory secretions in 3.2% of healthy control samples (study not carried out on ME patients).
    Respiratory samples taken from patients with respiratory tract infection and healthy persons.
    http://www.cdc.gov/EID/content/16/6/1000.htm
    http://www.cdc.gov/EID/content/16/6/1000-T.htm


    Norway
    62% of patients tested positive for XMRV at the Lillestrom Health Clinic, using the VIPdx lab.
    http://www.prohealth.com/library/showarticle.cfm?libid=15684

    The Lillestrom Health Clinic tested 80 patients and 50 were tested positive by either culture or serology test – a total of 62%. The tests were done in cooperation with VIPdx labs in the USA.

    More information about these results will be given on the 28th of November 2010 in Oslo at the XMRV/MLV seminar with Dr. Judy Mikovits...
    See this link for more details of the November Oslo XMRV seminar:
    http://esme-eu.com/home/xmrv-mlv-se...f-november-2010-oslo-norway-article423-6.html

    In November 2010, the Lillestrom Health Clinic will launch a large international research project on Human Gammaretrovirus and ME.


    Belgium
    Study led by Professor De Meirleir.
    Researchers at the Vrije Universiteit Brussel (VUB) and the Belgian company biotech RED Laboratories "are able to identify a new retrovirus in patients with chronic fatigue syndrome."
    http://translate.google.co.il/trans...la-fatigue-chronique&sl=fr&tl=en&hl=&ie=UTF-8
    http://www.forums.aboutmecfs.org/attachment.php?attachmentid=3848&d=1284150125
    http://www.forums.aboutmecfs.org/showthread.php?7124-Meirleir-confirms-XMRV-findings-in-Europe
    http://www.nieuws.be/nieuws/VUB-ond...chronisch_vermoeidheidssyndroom_6a743703.aspx
    http://regist2.virology-education.com/abstractbook/2010_8.pdf


    Spain
    Pilot study by J Blanco et al:
    http://regist2.virology-education.com/abstractbook/2010_8.pdf
    http://www.forums.aboutmecfs.org/sh...-Spanish-XMRV-studies&highlight=spanish study

    Spain (progress of study unknown to me)
    Hospital Vall d'Hebron in Barcelona:
    http://www.abc.es/agencias/noticia.asp?noticia=574407
    http://www.prohealth.com/library/showarticle.cfm?libid=15703

    [It's uncertain that the facts have been reported correctly in this case]

    ________________________________________

    Japanese positive XMRV study (Study of blood bank samples and prostate cancer patients, not ME patients)

    XMRV found in 1.7% of random donor samples from the blood supply in Japan, testing for antibodies only.
    http://www.diagnosesupport.com/heal...ted-virus-in&catid=132:xmrv-research&Itemid=8

    ________________________________________

    Dr Cheney and Dr Bell - unpublished studies

    Separate unpublished studies in the USA, using patients from Dr Cheney's and Dr Bell's clinics, have confirmed high rates of XMRV infection in ME patients.

    Dr Cheney:
    74.5% of consecutive ME patients, who went to the Cheney Clinic, tested positive for XMRV.
    http://www.cfids.org/xmrv/wrkshp-data-comparison.pdf

    Dr Bell:
    80% of 10 patients currently meeting Fukuda criteria tested positive for MLV-related sequences and 1% of healthy controls.
    http://www.cfids.org/xmrv/wrkshp-data-comparison.pdf
    http://www.cfids.org/xmrv/wrkshp-report.pdf

    ________________________________________

    Info about published, unpublished, proposed and ongoing research studies

    Details of all the published XMRV studies to date, including the two published positive USA studies, and all the negative published studies (A PDF chart, on the CFIDS Association of America's website):
    http://www.cfids.org/xmrv/data-comparison-082410.pdf

    Details of unpublished XMRV studies presented at the 1st International Conference on XMRV (A PDF chart, on the CFIDS Association of America's website):
    http://www.cfids.org/xmrv/wrkshp-data-comparison.pdf

    Abstract Book - 1st International Conference on XMRV
    Collated research papers presented at the 1st International Conference on XMRV (A PDF document):
    http://regist2.virology-education.com/abstractbook/2010_8.pdf

    And here's details (on Phoenix Rising website and forum) of proposed, upcoming, incomplete and unpublished research studies:
    http://www.forums.aboutmecfs.org/entry.php?595-What-s-Next-for-XMRV
    http://aboutmecfs.org/Rsrch/XMRVStudies.aspx

    ________________________________________

    1st International Conference on XMRV

    "Abstract Book" - Collated research papers presented at the 1st International Conference on XMRV (A PDF document):
    http://regist2.virology-education.com/abstractbook/2010_8.pdf

    Details of unpublished XMRV studies presented at the 1st International Conference on XMRV (A PDF chart, on the CFIDS Association of America's website):
    http://www.cfids.org/xmrv/wrkshp-data-comparison.pdf

    ________________________________________

    Recent articles regarding the state of play for XMRV research:

    ‘World Class Virus Hunter’ To Head Up the Latest XMRV Study.
    http://blogs.wsj.com/health/2010/09...atest-xmrv-study/?KEYWORDS=amy dockser marcus

    XMRV On Everyone’s Mind at a Chronic Fatigue Syndrome Meeting.
    http://blogs.wsj.com/health/2010/10...syndrome-meeting/?KEYWORDS=amy dockser marcus

    Recent news and progress:
    http://www.forums.aboutmecfs.org/co...-in-the-balance-A-Tale-of-Two-Conferences-CFS

    Ongoing and proposed XMRV research:
    http://www.forums.aboutmecfs.org/entry.php?595-What-s-Next-for-XMRV
    http://aboutmecfs.org/Rsrch/XMRVStudies.aspx

    ________________________________________


    List of some of the ongoing research:

    Harvey Alter (discovered the HEP C virus), working for the FDA investigating MLV-related viruses in ME/CFS patients. He is looking for antibodies, and will be isolating the virus, and sequencing the genome of the PMRV's which he found.

    W. Ian Lipkin (internationally recognized for his work with West Nile virus and SARS) working for US government health agencies to investigate XMRV in ME patients.
    http://blogs.wsj.com/health/2010/09...atest-xmrv-study/?KEYWORDS=amy dockser marcus

    Frank and Sandra Ruscetti, working at the NCI (National Cancer Institute) carrying out research into XMRV and its effect on the immune system.
    http://ccr.cancer.gov/staff/staff.asp?staffid=270

    Dr Singh, carrying out some complex studies on XMRV.
    http://www.forums.aboutmecfs.org/entry.php?585-Report-From-the-OFFER-2010-Conference

    Judy Mikovits (discovered XMRV in ME patients) looking at a link between immune abnormalities and XMRV, XMRV in autism and atypical MS. About to publish a UK study showing XMRV in about 80% of ME patients.
    http://www.cfids.org/xmrv/wrkshp-data-comparison.pdf
    http://www.forums.aboutmecfs.org/sh...CFS-Conference-Update-on-XMRV-by-Dr.-Mikovits

    The US Blood Working Group is working towards standardising the methodology for detecting XMRV, and then they will do larger scale studies looking for XMRV in the population.
    http://www.cfids.org/cfidslink/2009/120203.asp
    http://aboutmecfs.org/Rsrch/XMRVStudies.aspx
    http://blogs.wsj.com/health/2010/07...e-to-hear-about-xmrv-working-groups-research/
    More info about upcoming XMRV studies:
    http://www.forums.aboutmecfs.org/entry.php?595-What-s-Next-for-XMRV
    http://aboutmecfs.org/Rsrch/XMRVStudies.aspx


    ________________________________________

    Info on the WPI's UK study:

    Not yet published, but reported to be about 80% positive for XMRV, and 6-8% positive in the UK blood supply.
    See info from the CFIDS Association of America's website, here:
    http://www.cfids.org/xmrv/wrkshp-data-comparison.pdf
    http://www.forums.aboutmecfs.org/sh...CFS-Conference-Update-on-XMRV-by-Dr.-Mikovits

    ________________________________________

    ME patient UK blood donor ban controversy (Dr Shephard and UK government quotes on blood ban):
    http://www.meassociation.org.uk/?p=2511
    http://www.meassociation.org.uk/?p=2460
    http://www.meassociation.org.uk/?p=2324

    ________________________________________

    Osler's web - Hillary Johnson - US Author and Journalist following the ME/CFS story since the 1980's.
    http://oslersweb.com/

    ________________________________________

    CFIDS Association of America's comprehensive XMRV info webpage:
    http://www.cfids.org/xmrv/

    Cort Johnson's Phoenix Rising 'XMRV Buzz page':
    http://aboutmecfs.org/Rsrch/XMRVBuzz.aspx
    ________________________________________

    1980's US videos about ME and the Incline Village outbreak:

    Primetime:
    http://vimeo.com/13048135

    Documentary:
    http://vimeo.com/9714250

    ________________________________________

    What About ME? - New ME documentary being made

    documentary website:
    http://www.whataboutme.biz/

    documentary blog:
    http://whataboutmefilm.blogspot.com/

    documentary vimeo homepage (interactive social site):
    http://www.vimeo.com/groups/whataboutme
    ________________________________________

    Death of Sophia Mirza:
    http://www.timesonline.co.uk/tol/life_and_style/health/article7008987.ece

    Death of Lynn Gilderdale:
    http://www.guardian.co.uk/uk/2010/jan/25/mercy-killing-kay-gilderdale-cleared


    ________________________________________

    Simon Wessely - quotes, research, discussions and parliamentary speeches:

    Research paper by Simon Wessely, Trudy Chalder and T. Deale
    "Illness beliefs and treatment outcome in chronic fatigue syndrome"
    http://www.ncbi.nlm.nih.gov/pubmed/...ed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=11

    ________________________________________

    Countess of Mar speaking in the House of Lords about Simon Wessely.
    Controversy surrounding Simon Wessely and the psychological school of thought. Recommended reading!
    http://www.theyworkforyou.com/lords/?id=2002-04-16a.894.0&s=wessely speaker:12904#g894.1
    http://www.theyworkforyou.com/lords/?id=2004-01-22a.1180.2&s=wessely speaker:12904#g1180.3
    http://www.theyworkforyou.com/lords/?id=2006-12-07d.1248.6&s=wessely speaker:12904#g1280.2

    ________________________________________

    Earl Howe (aka Lord Howe, aka Frederick Curzon, aka Frederick Howe), speaking in the House of Lords.
    A very intelligent speech about about the nature of ME and about Simon Wessely. Recommended reading!
    http://forums.aboutmecfs.org/showth...lood-ban-8-Nov&p=136426&viewfull=1#post136426
    http://www.publications.parliament.uk/pa/ld200304/ldhansrd/vo040122/text/40122-13.htm

    ________________________________________
     
  2. George

    George waitin' fer rabbits

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    South Texas
    This is amazing Bob. It's like WOW, WOW, WOW amazing and it's really hard for me to bark like that! Thank you so much from the bottom of my most coveted food bowl. (grins)

    No seriously this is a fantastic resource. You have some really great organization skills.!!!!!!!
     
  3. Bob

    Bob

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    Aw, thank you Georgy... I didn't expect such an enthusiastic response... Thank you for such nice feedback... :hug:
     
  4. CBS

    CBS Senior Member

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    Wow, Wow, Wow!, is right!

    Bob, Thanks for sharing this!
     
  5. maryb

    maryb iherb code TAK122

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    UK
    Bob you are bl***y marvellous:D
    What a fantastic resource this is for everybody - THANK YOU
     
  6. Bob

    Bob

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    England (south coast)
    Thanks everyone, for all the positive feedback...
    It's really appreciated.

    I've just added some info and expanded some sections, so there's more information on the list now.

    I've also made a separate list of the European XMRV studies that I've got information on, with brief details of the studies and the results, on a separate thread, here:
    http://www.forums.aboutmecfs.org/sh...sitive-studies&p=134746&viewfull=1#post134746
     
  7. Francelle

    Francelle Senior Member

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    Victoria, Australia
    Fantastic Bob! Well done.

    The only link I have read so far is the first link to the Countess of Mar's speech in the UK Parliament in about 2002. (It's right at the end of the huge list Bob posted). What an amazing piece of oratory. If only this could have been published in a British newspaper!
     
  8. Enid

    Enid Senior Member

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    UK
    Thanks again Bob for keeping us up to date - all sorts of things going on in different "camps" so it has been difficult to see the big picture. Now we can. Just great.
     
  9. Merry

    Merry Senior Member

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    Columbus, Ohio, USA
    Bob, you are a Prince. Long live Bob!
     
  10. leela

    leela Slow But Hopeful

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    Couchland, USA
    I second all the WOWs and elevation to Princely status!
    This is *so* useful, and such an amazing feat of organizational brilliance!
    Thank you! :hug::hug:
     
  11. Berthe

    Berthe Senior Member

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    near Antwerp
  12. Bob

    Bob

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    England (south coast)
    Aw, you lovely people! :hug:

    I know I said I really appreciated all the positive feedback, but I'm getting a little embarassed at the level of praise now! :ashamed:

    But I'm glad it's helpful to people.

    Prince Bob :innocent1: heehee...
     
  13. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    WA, USA
    Great post, Bob! You've done a fabulous job compiling all of that! Well done.

    The Countess of Mar has ME herself. She's been fighting our battle a long time and could use some more support.

    Wow, with such a long post, I'm suprised I have anything to add, but I do know of a couple more blog posts which are really good.
    http://livingwithchronicfatiguesynd...or-myra-mcclure-about-xmrv-and-contamination/
    http://www.cfscentral.com/2010/08/sunday-monroe-5-am-final-final.html

    And the Countess commissioned this document:
    http://www.satori-5.co.uk/word_articles/me_cfs/prof_hooper_3.html
    THE MENTAL HEALTH MOVEMENT: PERSECUTION OF PATIENTS?
    Document prepared for the Countess of Mar by Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, in collaboration with members of the ME community, Department of Life Sciences, University of Sunderland
     
  14. Bob

    Bob

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    England (south coast)
    Thanks for the extra links Willow... I haven't read them yet, but I'm working on it! I've got them bookmarked.
     
  15. Bob

    Bob

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    Yes, the Countess of Mar's speeches are amazing aren't they Francelle... Really powerful, and scathing of Wessely...
    I think she's one of our best advocates... She really sticks her neck out for people with ME.
     
  16. Grape Funk

    Grape Funk Senior Member

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    Bob You're the man, 'priciate this!
     

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