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What questions would you like Ryan Prior to ask Dr Kogelnik for his documentary?

Discussion in 'General ME/CFS News' started by Sasha, Jul 16, 2013.

  1. Sasha

    Sasha Fine, thank you

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    On his Facebook page for his Blue Ribbon ME/CFS documentary, Ryan wrote:

    We will fly to California on Friday. Our first big interview is with Dr. Andy Kogelnik at the Open Medicine Institute. What should we ask him?

    To make sure that he sees your question, post on that Facebook page:

    https://www.facebook.com/CFSDocumentary/posts/601335593230633
     
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  2. Firestormm

    Firestormm Guest

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    Why are you treating people with Rituximab outside of any clinical trial? :)

    I'd like to know what he tests for prior to treatment. If he thinks some are suitable or not or if he treats anyone turning up and willing to pay for it.

    Really, I'd like to hear an explanation. Not nastily. But I think one is overdue. It could even be asked along the lines of 'The Norwegian authors in PlosOne said that they wouldn't recommend treatment outside of a clinical trial - and yet we hear from your patients that you are clearly treating them with this drug. Can you explain why?'

    Or something. Reposted on Ryan's Facebook page. Thanks Sash :)
     
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  3. Sasha

    Sasha Fine, thank you

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    Interesting question - I've been thinking more about that general issue after the FDA workshop where people on Ampligen were saying that the FDA should approve Ampligen for use in CFS and let patients make the decisions about risk.

    Any more questions for Dr Kogelnik via Ryan, folks? He runs the Open Medicine Institute with the OMI-MERIT list of 10 priority projects, of course, and they've got their OpenMedNet 'big data' project coming up in a few months (in which patients can upload their data so we form a mass data pool for analysis).
     
  4. user9876

    user9876 Senior Member

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    I think that is an interesting question to ask but no necessarily within the documentary. I say that partly as it could become a dated question. However, a more general question framed around trying experimental treatments with patients outside the realms of clinical trials would be good, perhaps referring to Rituximab as an example. Lots of people are desparate and want to try anything they think shows promise and given there is no current treatment it is an important question to ask when is a treatment sufficiently established and safe enough for a doctor to give to a patient outside of a trial.
     
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  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    a cure??? :lol:

    What about sleep treatments and maybe xyrem or something similar being approved for cfs/me.
     
  6. Sasha

    Sasha Fine, thank you

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    Good point - I think this is a general issue in medicine and a particularly pointed one for us, given that there are no FDA (or NHS) approved drug therapies aimed at the disease process itself.

    Have you put that on Facebook?

    I'm Facebook-clueless but if there's someone who can transfer questions over there for people who can't post themselves - or could post a message there pointing Ryan back to this thread - that would be great.
     

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