Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Rituximab Trial - SMC Expert Opinion?

Discussion in 'General ME/CFS Discussion' started by Marco, Oct 15, 2017.

  1. Marco

    Marco Grrrrrrr!

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    I'm half joking/half serious here.

    I've been pondering this for the last few weeks given that Fluge/Mella were due to 'crack the codes' on the Ritux trial this month.

    Assuming that the trial results are positive I was wondering who the Science Media Centre would approach for an 'expert comment' (assuming they report it).

    My suggestions :

    Emeritus Professor UCL Jonathan Edwards (pioneered use of Rituximab in treatment of RA; former board member PR);

    Esther Crawley (fragrant lady, expert of this parish);

    Father Dougal ("Ted". "Yes Dougal". Ya know those weird diseases ya hear about sometimes where yer own body starts attacking you for no reason?". "Yes Dougal". "And where if you give them some drugs their immune system dies and they get well again?". "Yes Dougal". "Well you don't really believe all that do ya Ted?").

    Any suggestions?
     
    Last edited: Oct 15, 2017
  2. Hip

    Hip Senior Member

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    Is it this month (October 2017)? Do you think that information will become public straight away, or will we have to wait a while, until the study is published?
     
    Last edited: Oct 15, 2017
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  3. sarah darwins

    sarah darwins I told you I was ill

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    Go on, I can't resist.

    Maybe popular science writer and media tart Suzanne ‘It’s all in Your Head’ O’Sullivan? “It’s evidently a powerful placebo effect, enhanced by Rituximab having an X in the name. X is a strong letter which may well have therapeutic potential. Xanax, Ofloxacin or Clorox would probably work equally well. The placebo effect is an amazing thing and we should be no less awed by it for its being … All in Your Head. Ta-da! Am I getting paid for this interview?”
     
  4. Marc_NL

    Marc_NL Senior Member

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  5. Marco

    Marco Grrrrrrr!

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    That I don't know. Just from previous reports I believe Oct 2017 was the unblinding but whether or not any results would be made public before publication (sic)?
     
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  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Why not get Stanley Unwin. He could explain nicely how the tuximabbers goes trickly how down to the bumblybees, and all a popping goes!! And if he is dead, which I think he is, Dr De Meirleir could probably do a Belgian version of much the same thing, with some help from that Beiger chap.
     
  7. Marco

    Marco Grrrrrrr!

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  8. Esther12

    Esther12 Senior Member

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    "Of course I'd be happy to give a quote Fiona: It is important that all journalists realise that the SMC is not a trustworthy source on issues related to ME/CFS. End."
     
  9. msf

    msf Senior Member

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    Prof. Edwards, I'm glad you're back, especially with the Rituximab trial being published soon, but could you please explain why you seem to give KDM a harder time than Esther Crawley. Since you have already told me it has nothing to do with collegiate feeling, then I'm sure you have a perfectly logical reason for castigating someone doing biomedical research rather than someone who believes in and practices BPS bullshit.

    Since you do not seem to think much of Prof. Davis either, I would suggest that KDM is in rather good company, especially when you fail to include BPsers in your diatribes.
     
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  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Er, did you not see a paper in Journal of Health Psychology? Did you not see my post, of which I am a little ashamed, using the word desquilinium (look up Latin) in relation to PACE? One of the reasons I am looking forward to the new forum is the selective memory of some people here.

    Oh for a forum with a sense of humour. Bring it on, bring it on. Let the phoenix truly rise again.
     
  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    And sorry, no I am not back. I am just taking the opportunity to be as irritating as possible while the embers die down.
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    Is this a "real" word that has been used before and I missed it?! In either case, I love the word and am proud to be a "tuximabber" and look forward to the official results of Fluge & Mella's work being published (whenever that may be).
     
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  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    And that quote of Mcenroe comes to mind 'You cannot be serious' (implying that you obviously are).
     
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  14. msf

    msf Senior Member

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    Haha, I would say the same about the sense of humour (look up humour).
     
  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Oh my oh my, Gingergrrl. Look up Professor Stanley Unwin on the net. There must be some old tracks of him and his babble. Not everyone may find him funny, but in the 1960s we used to fall about laughing.

    Stanley Unwin On Parkinson - Oh Follock! Deep Joy! Unwinese ...
     
  16. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and I have never heard of him before. I just wanted to add, for whatever it is worth, that in a few threads it seemed like people were making the issues on PR into "US vs. UK" and I truly do not believe that this is the case and it is another red herring to distract members from what is really going on. It is not an issue for me, it never was, and it never will be. I wanted to bring this up before everyone moves over to the new board b/c it was bothering me and I do not believe it is true, and certainly is not true for me. I feel having so many countries and cultures represented on PR is what made it so strong, unique, and beautiful.
     
  17. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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  18. A.B.

    A.B. Senior Member

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    I think a number of us were shocked at some point and said some dumb things.
     
  19. Quilp

    Quilp Senior Member

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    Just woke up to see if the flames have been put out yet......

    Were the trials to change the ME landscape forever, this particular peasant might put down his pitchfork, wash his hands, polish his head and get ready for the backlash.

    How about White making a cameo appearance and declaring the results down to ''chance''. Phil Parker will barge in there telling everyone the result confirms ''what he has believed all along''. Esther Crawley will complain of harrassment. Simon Wessely will do an interview with The Times in which, ''these results have very little relevance to the vast majority of ME's in the Uk''.

    There will be some mention of ME and yuppy flu. AFME will ''whilst we welcome any research into this debilitating illness we will exact a modicum of caution until GET cures us''.

    NICE will probably sh*t themselves.

    More than anything the Wessely narratives will hang the facts and torture the truth. They will come mob handed and kick the hell out of it. If that doesn't work they will drag it into the river Thames and try to drown it. They will poison it, chop it into pieces, dissolve it in acid and.........

    I'm going back to bed.

    Oh and JE, please be as irritating as possible. As Lord Ally once said It's better to have been irritating and lost than to have never irritated at all.
    We need you.
     
  20. TrixieStix

    TrixieStix Senior Member

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    I've heard it said that it will likely be around June of next year when the results will be published.
     
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