1. Patients launch $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!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Reports from the "Invest in ME" conference--May 20th

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Sushi, May 20, 2011.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,584
    Likes:
    5,374
    Albuquerque
    Anyone! Please post any news here!

    Thanks,
    Sushi
  2. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Thanks Sushi - don't want to lose this one!
  3. Sasha

    Sasha Fine, thank you

    Messages:
    7,865
    Likes:
    6,262
    UK
    Here's what appears to be an interesting closing statement from Annette Whittemore on "Dr Speedy's" blog.
  4. Sasha

    Sasha Fine, thank you

    Messages:
    7,865
    Likes:
    6,262
    UK
    And here's a link to buy the conference DVDs from Invest in ME's site.
  5. Bob

    Bob

    Messages:
    7,955
    Likes:
    9,894
    England, UK
    Very nice words from Annette:

  6. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Great for starters - thanks Sasha (bought my DVD). Along with everything else - BMJ presence, Researchers/MPs meeting, likewise Hillary Johnson, should be pivotal. Also hear Iime are pursuing interdiscussions (sharing of knowledge) between all the major researchers regularly too from now on. Dare we think we are on the way on all fronts - yep and a very big thank you to one and all.
  7. ukme

    ukme Senior Member

    Messages:
    169
    Likes:
    8
    I too wish we could all get together, but in the meantime thanks to Annette for all she has achieved so far.
  8. Waverunner

    Waverunner Senior Member

    Messages:
    992
    Likes:
    836
    News about XMRV and CFS?
  9. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    404
    Upstate SC, USA
    This link doesn't work.
  10. Waverunner

    Waverunner Senior Member

    Messages:
    992
    Likes:
    836
    Seems it was deleted.
  11. Camilla

    Camilla

    Messages:
    30
    Likes:
    16
  12. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Thanks Camilla - it bears a second reading - WPI have really lit the the "torch".
  13. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    933
    Likes:
    102
    London, UK
  14. Waverunner

    Waverunner Senior Member

    Messages:
    992
    Likes:
    836
  15. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    773
  16. serendipitycat

    serendipitycat

    Messages:
    6
    Likes:
    12
    Message also found here

    CFS Patient Advocate: http://cfspatientadvocate.blogspot.com/2011/05/investinme-message-from-annette.html

    A message from Annette Whittemore:
    Hello Everyone,

    The Invest in ME Conference just ended a few hours ago. This conference brought new and exciting ressearch to ME that is soon to be published. Dr. David Bell discussed how the patients that he saw as children are now adults around 40 years old. Several have cancer, while others are still severly ill, but the majority are coping and say they are well but are actually still living with CFS. Dr. Demeirlier continues his important XMRV research, in Belgium and around the EU, finding many of the sickest patients positive for the retrovirus. Dr. Mikovits showed more footprints of XMRV infection from the patients immune system data and described how XMRV seems to act more like HTLV than HIV. Dr. Bieger, a delightful iimunologist from Germany, is doing exciting work with XMRV and EBV. The rest will have to wait until the conference DVD is completed.
  17. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    Before the conference i read somewhere that there will be an anouncement by EMEA. I don't remember regarding what, though. Does anyone have any info about that? What did EMEA anounce at the conference?
  18. Tuha

    Tuha Senior Member

    Messages:
    744
    Likes:
    815
  19. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Many thanks Tuha - we can certainly see the broad (and not so broad) picture now.
  20. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    773
    Hi, Im sorry it has taken me so long to get back to everyone, I have been recovering!

    There are some posts of mine which relate to the research on another thread - see #15.
    We got there very early, so we sat in the third row. I was just behind Annette Whittemore and Judy Mikovits, so I could see their responses. At one point, I heard JM say to Malcolm Hooper "I have no doubt" and I think he must have asked her about her research. She was VERY definite and looked completely confident. I spoke to AW. She is a lovely, friendly, warm woman. The atmosphere in the conference was happy and exhilarating, all the researchers were glad to be there, some were very excited. It was wonderful to be with people who loved their work and were excited by the research they were doing and the opportunity to meet other teams. I sat just behind the researchers who were all on the first row, so I could see thir reactions.

    I did not recognise Dr. Peterson at the conference, which I regret. From where I sat I could not see much of the audience who were all behind me at a neck-straining angle! The researchers were all respectful of each others work. JM never gave the impression she had any problems with the scientific response to her work, she treated it as what happens when you are in the process of getting new findings accepted and was respectful of her scientific colleagues. I think she realises it will take time and is a sensible, resiliant woman.
    I think we patients probably worry much more about these things because we have little informastion, so gossip goes round, and we are much more vulnerable and of course, ill.
    Judy Mikovits was very boyant and energetic and thoroughly HAPPY.

    As I said in my other post, my impression of JM is that she is an exceptionally clever scientist who understands her field in depth. She is not what her opponents try to make her out to be. I do not think she would make a mistake, particularly an elementary mistake to do with contamination, which she is accused of doing. This is all to buy time, because what she has found is so disturbing. We should support the WPI. Dont worry about negative papers, it is so much easier not to find this virus than to find it. You have to be good to isolate this virus, and JM is good. She knows what she is doing. If she were as incompetent as some try to suggest, do you seriously think the US government would spend the money it has trying to investigate her findings and clean up the blood supply?

    I did recognise Peter Spencer from AfME and Charles Shepherd from MEA in the audience.
    This was a very special event, for lots of reasons. I advise you to buy the IiME DVD of the conference.
    http://www.Investinme.org/infocentre Education Homepage.htm

See more popular forum discussions.

Share This Page