Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Jen Brea interviewing Prof Jonathan Edwards today, Tues 9 Sept - what should she ask?

Discussion in 'Action Alerts and Advocacy' started by Sasha, Sep 9, 2014.

  1. Sasha

    Sasha Fine, thank you

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    Jen Brea is interviewing Prof Edwards for her upcoming ME/CFS documentary Canary in a Coalmine and posted the message below on FB ten minutes ago.

    I have no reason to think that she reads PR so if you want her to ask your question you need to contact her via FB or her website, not here (unless someone is willing to repost - posting a link to this thread and alerting her to the discussion would presumably do the job).

    https://www.facebook.com/canaryfilm/posts/454892201315185

    Interviewing Professor Jonathan Edwards, who is advising Invest in ME on its community-funded Rituximab trial, today. What questions should I ask him?

    http://phoenixrising.me/archives/18701

    [​IMG]
    Interview: Professor Jonathan Edwards on the UK Rituximab trial
    Good luck with the interview, @Jonathan Edwards!
     
    Last edited: Sep 9, 2014
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  2. A.B.

    A.B. Senior Member

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    I don't have a facebook account so I'm posting some questions here. These should be appropriate for a documentary meant to educate.

    Why is Rituximab being studied as treatment for ME/CFS? Many people will not know about Rituximab and the story of the Norwegian patients.

    Does this mean that ME/CFS is an autoimmune illness? This leads to discussion about ME/CFS most likely being a label for several different illnesses.
     
    Last edited: Sep 9, 2014
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  3. Sasha

    Sasha Fine, thank you

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    There's no guarantee that Jen will see them if you do that - I'd recommend that you go to her website and send a message via her contact form.

    Can anyone here who uses FB post a link on Jen's FB post to this thread?
     
  4. Sasha

    Sasha Fine, thank you

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    BTW, Jen seems to be doing a whole UK stint at the moment (as a remote shoot) - yesterday she interviewed Jane Colby of the Tymes Trust. Looks like her FB page will be especially worth UK people keeping an eye on for a few days.
     
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  5. Snow Leopard

    Snow Leopard Hibernating

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    I'm not a member of Facebook, it would be great if someone could post a link (on FB) to let Jen know that this question is being asked here.

    My question is along the lines of what motivated him to choose research on ME and what does he think will encourage other researchers to join the field?
     
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  6. ahmo

    ahmo Senior Member

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    ha ha...looks like I'm not the only FB intolerant person here.:D
     
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  7. A.B.

    A.B. Senior Member

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    :thumbsup:
     
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  8. Sasha

    Sasha Fine, thank you

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    Excellent question and I'd also suggest to you to send that question via her website - the clock's ticking and I don't know what time she's interviewing Prof E. She's in NY (5 hours behind the UK).
     
  9. DanME

    DanME Senior Member

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    Hi, I just posted all your questions on her Facebook thread! :)

    By the way, why do people still think Rx is extremely dangerous and we should try natural supplements instead? I don't get it...
     
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  10. DanME

    DanME Senior Member

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    And I don't get why some people don't see, that at least two patients (Maria Gjerpe and the girl, who did the kayaking) are in complete remission now. Rx can have a total impact, the question is not if it works, but how and for whom.
     
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  11. Sasha

    Sasha Fine, thank you

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    Thanks, that was kind of you!
     
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  12. Sasha

    Sasha Fine, thank you

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    An hour ago, Jen posted:

    Thanks everyone for all of your ideas! Prof. Edwards was absolutely lovely. I incorporated a lot of your feedback and got some interesting answers to the EBV & b cell question. I am in the midst of a bad flare, so I can't for the life of me remember what was said but can't wait to read the transcripts ​

    Thank you, @Jonathan Edwards! Looking forward to seeing your bit in the film. We're all hoping that this film (and Ryan Prior's) is going to do big things for us.
     
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  13. barbc56

    barbc56 Senior Member

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    When is the scheduled release date for the film?

    Barb
     
  14. Sasha

    Sasha Fine, thank you

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    Good question - I don't know!
     
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  15. DanME

    DanME Senior Member

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    I think, she mentioned end of 2015 once.
     
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  16. Sasha

    Sasha Fine, thank you

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    On Monday Jen posted:

     
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