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Pushing for Rituximab Pilots in the UK

Discussion in 'Action Alerts and Advocacy' started by kafkaboots, Jun 22, 2012.

  1. kafkaboots

    kafkaboots

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    Brighton UK
    I am new enough here to realise you may have dealt with this enough - I did find a relevant thread but I've lost it again. I had a real breakthrough with my (young) GP yesterday, armed with the latest IiME newsletter and the NS piece on Rituximab. I could almost see the possibility of a paradigm shifting in his eyes. He said that no one in the NHS would prescribe it - that it's a small study etc which is true of course, but he would write supporting letters if I found anyone willing to run a pilot. I am seeing Dr Weir in a few weeks and will talk about it to him.
    I feel that even a successful pilot in this country could have enormous potential for change. I would be really interested to understand the nuts and bolts of what it would take. On one level it just takes two infusions of an £800 drug. On another level it takes a Dr to stick their head over the parapet and question a powerful consensus.
  2. Snow Leopard

    Snow Leopard Senior Member

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    It takes a group of qualified people to commit to a study and apply for funding...
  3. ukxmrv

    ukxmrv Senior Member

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    Kakfa, I think that Dr Shepherd from the MEA has an interest in Rituximab and somewhere said that a study would cost around £200,000 and that their fund didn't have enough money for this right now. Wouldn't be surprised if he has already been trying to interest UK parties in a trial.

    The obvious person to run the trial would have been Dr Kerr who is lost to use now. He had to leave his job and lab.
    Someone pointed out on another thread that £200,000 would only be a drop in the bucket and probably a small pilot study of course.

    There is a big meeting in the USA shortly on Rix (I think?)and I read on the MEA facebook page that Dr Shepherd would be going abroad shortly. Would be great if he was at that meeting or something connected to Rix. Probably wrong and he is away on holiday instead!

    I'd start off there and see how far he has got and see what he thinks is needed to getting a trial and what barriers (apart from the obvious money) we face. Oviously the whole money thing makes my blood boil when I consider that PACE costs millions.
  4. kafkaboots

    kafkaboots

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    Hi Snow Leopard - thanks, yes. I was wondering specifically about pilots. And in the UK especially, what qualified people we might have on our side. We have regional ME centres and London departments whose psychosocial model relies largely on the absence of effective medical treatment. I think it perhaps takes a group of sufferers first to find 'a group of qualified people to commit to a study and apply for funding' or find one person to commit to do a pilot. This has certainly been the case for IiME. It isn't a lack of qualified people that has hampered biomedical research in the UK.
  5. kafkaboots

    kafkaboots

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    Thanks UXMR - you've answered my unspoken (unformulated?) question - if people in the UK want to see progress should we push through the ME Association (and maybe IiME?) or do we need to join forces in some other way. I think your advice is spot on - Charles Shepherd first! Thanks.
  6. ukxmrv

    ukxmrv Senior Member

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    We may need to join forces in some other way. However I'd like to see what the MEA is planning first.
  7. kafkaboots

    kafkaboots

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    Brighton UK
    Yes - Charles Shepherd did say before he left that the subject of Rituximab would be coming up while he was in America, but I can't remember in what context. He is not answering questions on FB until he gets back.

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