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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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5th Invest in ME/CFS Conference - Programme May 24 2010

Discussion in 'XMRV Research and Replication Studies' started by shrewsbury, May 23, 2010.

  1. shrewsbury

    shrewsbury member

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    The 5th Invest in ME International ME/CFS Conference 2010
    A New Era in ME/CFS Research


    [sb: May 24 is the new Oct 8. Look at the speakers and topics here. And next I'll post what's planned for Cold Harbour Retrovirus Meeting May 24 - 29, over 300 abstracts. Too bad they're on the same day. And too bad neither is webcasting.]

    CONFERENCE PROGRAMME

    Here is the provisional conference agenda

    Registration is from 07.45. The conference begins at 09.00 and finishes at 17.30.

    For conference delegates - please aim to be in your seat by 08:55

    Start Presenter Presentation

    07.45 Registration

    08.55 Invest in ME Welcome to the Conference

    09:05 Professor Leonard Jason PhD How Case Definitions Can Stigmatize: Implications for
    Epidemiology, Etiology, and Pathophysiology

    09:50 Professor Nora Chapman PhD Persistent Enteroviral Infections

    10:35 Dr John Chia MD Enteroviruses in ME/CFS, Diagnosis and Treatment

    11.15 Break

    11:35 Dr Paul Cheney MD, PhD Diastolic Dysfunction in ME/CFS: A Cardiac
    Manifestation of Cellular Defects in ME/CFS


    12:20 Dr. Jonathan Kerr MD, PhD Study of SNPs to determine subtype status in CFS patients

    12.50 Lunch

    13:40 Dr Nancy Klimas MD Immunological Biomarkers in ME/CFS

    14:25 Professor Brigitte Huber PhD Presence of Retrovirus as a Biomarker for ME/CFS

    15.10 Coffee/tea Break

    15:30 Mrs Annette Whittemore Future Pathways of Research into ME

    15:45 Dr. Judy Mikovits PhD Implications of XMRV Research for ME/CFS

    16:40 Professor Malcolm Hooper and Presenters Plenary Session

    17.30 Adjourn

    (Please note that the agenda, format and times are subject to change. We recommend that you look in Conference News to keep abreast of news relating to the conference)

    [sb: The format on the site, link below, is easier to read. Also on this link is a list of the speakers with good bios, including photos and areas of interest.]

    http://www.investinme.org/IIME Conference 2010/IIME 2010 International ME Conference Agenda.htm
     
  2. shrewsbury

    shrewsbury member

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    Here's some more info from the conference:

    May 2010 Seventeen countries are represented at the 5th Invest in ME International Conference 2010

    April 2010 We are pleased to announce that Dr. Daniel Peterson, co-founder of the Whittemore-Peterson institute, will be attending the conference

    April 2010 Discounted tickets for patient/carer and charity/organisation categories have now been sold out and we are operating a waiting list. Please apply to Invest in ME to be placed on the waiting list.

    April 2010 The General Medical Council have declined an invitation to speak on education of medical students about ME/CFS at the conference.

    April 2010 Alison Hunter Memorial Foundation become a sponsor of the 5th IiME International ME/CFS Conference

    March 2010 Invest in ME have invited the editor in chief of the British Medical Journal to attend the International ME/CFS Conference as a guest of IiME and to write an independent review of the research being presented. Accepted

    A
     
  3. shrewsbury

    shrewsbury member

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    I thought Dr McClure was going to be speaking. Am I mistaken?
     
  4. Kati

    Kati Patient in training

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    Not that I heard of Shrewsbury. The conference is starting in 45 minutes their time... I am thinking of all of them and hope that PWME will have the strength to be there the whole day!!! And hoping that when I wake up tomorrow we have a bit more info on how it went...
     
  5. parvofighter

    parvofighter Senior Member

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    WOW

    Thanks again for a great post shrewsbury! Couple of questions, and a comment:

    • Will conference presentations be taped and/or webcast at all? Will presentations (slides and/or video) be available online? If so, where and when?

    • WOW - about Fiona Godlee, Ed in Chief of the BMJ attending. Is this for real?
    Now THAT will be interesting to see whether (and at what point) she capitulates on the BMJ's scandalously biased coverage of XMRV research. Can't wait to see the tone of her "independent review". This will be a great test of just how strategic her instinct for self-preservation is. Make a clean breast of it, write a truly independent review, and catch up with the XMRV times? Or stick with the rats on the CBT/GET ship a little longer? Don't rule out the possiblity that Fiona Godlee could become a staunch supporter of biomedical redress, and swift XMRV diagnostics/clinical trials/treatment for patients with ME/CFS. She may be a survivor yet. Wow - just very interesting. And it's fascinating that she accepted in March, when the BMJ was riding high on their righteous crusade against "bad science" in ME/CFS/XRMV. Will she still show, now that the tides are turning?
     
  6. Cookie Monster

    Cookie Monster

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    No chance of that thank goodness :D. I think that a line in the sand so to speak has been unofficially drawn, McClure sticks to prostate cancer XMRV research and leaves CFS well alone.

    The conference where McClure is speaking about XMRV (prostate cancer), which you may be thinking of? is the Ist XMRV conference to be held in the states in September. http://www.virology-education.com/index.cfm/t/1st_International_Workshop_on_XMRV/vid/1FF10297-0DC4-5841-64634A68A3EC3EF1

    Invest in ME are one of the Uk's pioneering charities that campaign purely for biomedical research into our condition. They part-funded the WPI's uk study for us :thumbsup: . Importantly its a completely independent charity and they are truly aligned with patients needs :victory:

    They release a dvd each year of the conference (costs are 10-12 GBP depending on your location - nb, im unaware of production timeframe) http://www.facebook.com/#!/group.php?gid=5804522506&ref=ts

    Im not in anyway part of this charity but i would encourage facebook users to join their group to show some appreciation - they are very much leading the way for us over here.

    We really do hope Fiona Godlee gets some inspiration from this conference. She will certainly realise by the end of it exactly why she received so much critical correspondance in recent times.

    Conference takes place tomorrow, Monday 24th May.
     
  7. V99

    V99 *****

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    I'm going to the conference in London on Monday, so I should be able to post something when I get back home. This will be my first conference, and I have no science backgound, but thanks to many here I should be able to follow the jist of it. If anything significant is mentioned I'm sure I wont miss it.
     
  8. natasa778

    natasa778 Senior Member

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    Fiona Godlee??? IMO she should not be trusted with anything. If anything positive, or at least neutral :) comes from her I will eat my hat. Gonna go buy one now just in case.

    There is lots more to baaad science and BMJ than the anti-WPI rant they published.

    "Ad this isn't abstract corruption: children are dying and losing their minds. Godlee can take a bow for playing her part."
    http://www.ageofautism.com/2010/04/...ing-solves-mystery-of-enterocolitis.html#more
    http://www.ageofautism.com/2010/05/...ers-role-as-complainant-in-gmc-case.html#more
    http://www.ageofautism.com/2010/05/...estion-on-deers-competing-interests.html#more
     
  9. parvofighter

    parvofighter Senior Member

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    Not condoning God

    Natasa, you're totally right to bring up the topic of trust re: Fiona Godlee. The interesting thing though, is the issue of how some of these "leaders" make it to the top. Maybe call it the Cockroach Syndrome, or the ability to survive - and continue climbing - through humiliation and adversity. Bottom line, some folks that reach the level she has, achieve this through ruthless cultivation of relationships. And ruthless culling of same relationships when they are no longer advantageous. IF she does turn face on XMRV and ME/CFS, it could make things very interesting, and perhaps even begin the necessary process of redress. Does that make her a palatable character? Not at all.

    My personal belief is that her - and the BMJ's - capitulation on XMRV and ME/CFS is inevitable. And that the longer they put off the inevitable, the more the scientific community will censor them for their stone age "science".
     
  10. Alexia

    Alexia Senior Member

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    It will be only tomorrow Kati not today.

    Hi V99, it's great that you can go to the conference. We will be waiting for your news! Can't you take something to record the sound so you could record some talks? it would be easier for you to report later.
     
  11. V99

    V99 *****

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    Hi Alexia
    They wont allow recording devices, probably because of the DVD they make. Either way the full conference will eventually be available to all who can afford one. I will just have to make notes in my best scruffy handwriting. :Retro smile:
     
  12. Bob

    Bob

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  13. natasa778

    natasa778 Senior Member

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    I love it!

    I hope you are right Parvo, it does make sense that someone like her could have the instinctive feeling for the sinking ship ... this could be her climbing the mast to look for another ship to swim to :))))
     
  14. Alexia

    Alexia Senior Member

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    Thanks V99, I didn't know that. I can imagine it will be very tiring for you so take care with yourself tomorrow and good luck. I'm sure if there is something important you will not miss it!
     
  15. joyscobby

    joyscobby Senior Member

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    wwwwwwwwwwwwwww wwwwwwwwwwwww wwwwwwwwwwwwwwwwwwwwww
     
  16. V99

    V99 *****

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    I was hoping others would be there. Putting our memories together we shuld be able to sum up everything.
     
  17. ukxmrv

    ukxmrv Senior Member

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    Will be there as well and will try to make sensible notes for sharing here.
     
  18. Enid

    Enid Senior Member

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    Lovely to see Invest in ME Conference news here. They are marvellous people (suffers and parents of), working on for some years now and achieved the BMJ attendance this year with and only Doctors and Scientists at "the cutting edge". Those who know. As a ten yearer I can totally recognise all the biomedical findings myself in this illness. European and Internationally engaged too with the best. DVD to be produced again, can't wait.
     
  19. Kati

    Kati Patient in training

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    OMG I was so excited by IT being today, I was convinced it was being today... Shoot... one more sleep :eek::ashamed::(
     
  20. garcia

    garcia Aristocrat Extraordinaire

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    Ha, ha Kati! Too funny! :tear:

    You got one more sleep to go! (Possibly 2 before you get some kind of write up from forum members attending).

    BTW in case anyone was wondering:

    I'll be there!
     

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