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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Should advocates be trying now to get a US rituximab trial started?

Discussion in 'Advocacy Projects' started by Sasha, Jul 7, 2015.

  1. BurnA

    BurnA Senior Member

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    OK. Yes its good to have the theory but it might only be valid for 50-60%. So some other drugs while maybe not as specific as RTX they could open the doors to other theories. Theories have to start somewhere, its easier to start a theory when you have an effective drug I imagine. Presumably if a theory is proven or at least established then it might encourage more trials ?
    Just from a patients perspective the more trials the better is how I would view it even if that is simplistic. I dont like to think that there could be other drugs on the market that may be of benefit but aren't being trialled due to lack of resources. So, my original question was really to get a feel for what are the chances there may be other effective drugs out there, regardless of whether they fit the B cell theory. I'll admit thats impossible to know !
     
  2. BurnA

    BurnA Senior Member

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    @charles shepherd are you aware of any traction on this ? Apart from Iime and ucl work, is there any other interest in a trial ?
     
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  3. charles shepherd

    charles shepherd Senior Member

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    I don't want to name any names in relation to a Rituximab trial but there are encouraging signs that major medical research funding bodies here in the UK - in addition to the MRC - are starting to take a serious interest in both research into the underlying cause of ME/CFS and pharmacological approaches to management.

    You may have seen that the Wellcome Trust and Arthritis Research UK have now joined the Research Collaborative and that this has included a significant financial contribution:

    http://www.meassociation.org.uk/201...arch-conference-newcastle-13-14-october-2015/

    And there is at least one major pharmaceutical company taking an interest in what we are doing.

    You may have also seen from the RC Board Meeting Minutes that I raised the need to start looking at whether we could interest one of these major funders in getting involved in funding a phase 3 clinical trial of Rituximab here in the UK at the last RC Board meeting

    A phase 3 RCT of Rituximab in ME/CFS would be VERY expensive - but without this type of robust information from phase 3 trials on safety and efficacy of Rituximab in ME/CFS there is no way that this drug is going to receive a product license for use in ME/CFS here in the UK and a positive recommendation from NICE
     
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  4. Michelle

    Michelle Decennial ME/CFS patient

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    Portland, OR
    @charles shepherd @Jonathan Edwards This might be a stupid questions, and I know you said that it's best to keep Genentech out of Rituxan trials for the time being, but what about getting them to provide Rituxan for free or at cost, especially since they stand to benefit if it proves to be a good treatment? Or is the drug not the expensive part of the trial?
     
  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The cost of drug is not the major cost or the major issue in organising a trial. In the UK it would be Roche rather than Genentech because Roche has the European rights on rituximab. I personally would want to keep away from any involvement of a company in a trial because it can end up with patients getting the wrong dose when the license comes and all sorts of similar issues. Companies want patients to use as much drug as possible. Doctors want patients to use as little as possible.
     
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