August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
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UK Rituximab Research Update

Discussion in 'Other Health News and Research' started by Jo Best, Nov 17, 2016.

  1. Jo Best

    Jo Best Senior Member

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    Hello everyone, this is my first post on the forum, so please bear with and I expect someone may beat me to it.

    Update by UK charity Invest in ME Research on their Rituximab Research (B-cell studies and UK clinical trial).

    Full statement here - http://future.cofeforme.eu/IIME-Newslet-1611-03.shtml

    Extracts -

    Source - Invest in ME Research Centre of Excellence for ME - http://future.cofeforme.eu/IIME-Newslet-1611-03.shtml
     
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  2. Jo Best

    Jo Best Senior Member

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    More news today -

    Fluge Norwich.jpg
     
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  3. justy

    justy Senior Member

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    U.K
    Thanks so much for the update @Jo Best - I had been wondering what had happened to the UK Rituximab study - discussion about it on the forums had gone quiet - or else I've just missed it!

    Just wondering how the fundraising is going - who will be the lead clinician and when is it expected to go ahead. Oh and where will patients be recruited from?
     
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  4. Jo Best

    Jo Best Senior Member

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    Hi @justy - thanks for replying! I wasn't sure whether updates had been posted here on PR. I had a look but my eyes and brain don't work so well together these days, so I thought I'd go for it and post in the hope that someone would point me in the right direction if the info is elsewhere on the forum.

    Donations and pledges for the IiMER Rituximab Research so far amount to £500k of the current £520k target and enabled the preliminary B-cell study to get underway without delay and to progress to next phases. So the fundraising is going well and hopefully that will continue so that the research can progress unhindered.

    I only know what IiMER have put in the public domain and they haven't given details yet about the lead clinician, patient recruitment, or when the trial is expected to begin, and I expect this will be discussed when the UK team meet again with the Haukeland team in Norwich in January. I've no doubt the charity will publish news or updates as soon as they are able. This is the news page on their Rituximab Research microsite - http://www.ukrituximabtrial.org/IIMEUKRT News.htm
    I expect you are signed up to receive their free e-newsletter but here is the link in case not -
    http://future.cofeforme.eu/newsletter.shtml

    Thanks again for your reply. :)
     
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  5. Battery Muncher

    Battery Muncher Senior Member

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    Thank you for your very helpful update Jo Best.

    I wasn't aware of the issue with UCL and the CTU - I was wondering if you could provide more information on what happened? Also, who are the researchers at Norwich who are taking on this project?

    Thanks!
     
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  6. Jo Best

    Jo Best Senior Member

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    Thanks @Battery Muncher :) I only know what's in the IiMER statement (that there was an internal reorganisation and downsizing in the CTU at UCL). Fortunately, that hasn't affected the B-cell research at UCL.

    I don't think they've announced which researchers at Norwich will be taking on the trial. The links at Norwich Research Park are well established as it's the base for the IiMER Centre of Excellence for ME and there is ongoing collaboration between the UK researchers and their colleagues in other countries,

    Professor Simon Carding (leader of the IiMER gut microbiota in ME research) mentioned a rituximab trial in his presentation at IIMEC11 in June on the European ME Research Group (EMERG).

     
  7. Jo Best

    Jo Best Senior Member

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    Fane Mensah (IiMER-funded PhD student working on the B-cel research at UCL with Dr. Jo Cambridge) is currently in Bergen, Norway, having been invited to be there in the rituximab trial status meeting.

    Fane will be presenting there as part of the collaboration with the Norwegian team.
    IiMER hope to have an article on the visit later.
    Meanwhile they are planning for the January meetings in Norwich,
    This is an article written by Fane in 2015 -

    Through The Eyes of a Young Researcher -
    http://www.ukrituximabtrial.org/Rituximab news-Jan15 01.htm
    Lay Summary of the first B-cell paper -
    http://www.ukrituximabtrial.org/Rituximab news-Mar16 01.htm

    IiMER are also funding an additional student at UCL to assist with the project "B cell function in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Investigations of metabolic function during B cell maturation and differentiation". The aim is to investigate potential differences in B cell maturation, differentiation and metabolism between patients with ME/CFS and healthy controls.

    The charity will underpin the extra work with a grant of £9000 to cover the student who will work until early 2017 assisting existing PhD student Fane Mensah and Dr Jo Cambridge.
    The team hope to identify whether potential differences are due to alterations in signalling or metabolism in B cells from ME/CFS patients and the additional student resource will hopefully accelerate Fane's project.
     
    Last edited by a moderator: Nov 25, 2016
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  8. Jo Best

    Jo Best Senior Member

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    The UCL team are among the first to benefit by the Solve ME/CFS Ramsay Award Program -
    http://solvecfs.org/metabolic-analy...ic-encephalomyelitischronic-fatigue-syndrome/

    2016 Ramsay Award Program Results -
    http://solvecfs.org/2016-ramsay-award-program-results/
     

    Attached Files:

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  9. Jo Best

    Jo Best Senior Member

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    Just saw this tweet. I love the informal photos :)
     
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  10. Jo Best

    Jo Best Senior Member

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  11. Jo Best

    Jo Best Senior Member

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  12. Jo Best

    Jo Best Senior Member

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  13. Jo Best

    Jo Best Senior Member

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  14. Jo Best

    Jo Best Senior Member

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  15. Jo Best

    Jo Best Senior Member

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    Studio interview with Prof Simon Carding in the late evening news of 26th January -
     
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  16. Jo Best

    Jo Best Senior Member

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    ME/CFS talks held in Norwich - http://www.ifr.ac.uk/news/latest-news/2017/02/mecfs-talks-held-norwich/ Article includes link to talks now on IFR YouTube.

    ME/CFS talks held in Norwich
    Date 7 February 2017

    [​IMG]

    An event held in Norwich in January 2017 gave the public a chance to hear about some of the biomedical research being undertaken on the debilitating condition ME (Myalgic Encephalomyelitis).

    The event was hosted by IFR and Invest in ME Research, a charity promoting biomedical research and education into ME, which is aiming to establish a UK centre of excellence, to improve ME diagnosis and coordinate research into treatments and cures.


    The talks were introduced by Dr Ian Gibson, former MP for Norwich North and from the Invest in ME Research Advisory Board.

    Speakers (click to jump to their talks)
    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease causing long-term health problems, characterised by severe exhaustion, as well as pain and dysfunction of the brain, gut and immune system. ME/CFS has no effective treatments, and its causes still remain unknown

    Tackling ME, and bringing hope of relief to the estimated 250,000 sufferers in the UK needs high quality biomedical research and international collaboration.

    Dr Øystein Fluge, a senior consultant and oncologist at Haukeland University Hospital in Norway spoke about ground-breaking research he is leading on Rituximab. This drug has been used to treat leukaemia and lymphoma, as it targets B-cells, a type of blood cell. In 2004, Dr Fluge noticed that ME patients being treated for lymphoma with Rituximab also saw substantial improvements in their ME symptoms. Subsequently pilot studies and a randomised, blinded, placebo controlled study also showed positive results, with a large, multi-site Phase III clinical study now running.

    [​IMG]

    Dr Fluge was visiting Norwich to discuss future collaborations over another Rituximab trial being carried out on the Norwich Research Park with Professor Simon Carding from the Institute of Food Research (IFR) and University of East Anglia. Professor Carding also introduced the audience to research in his own group, who are looking for causes and treatments for ME in the gut and its microbial communities. The Norwich Research Park is establishing itself as a hub for biomedical research into ME, in the UK and Europe and through international collaborations.

    More information
    For more information, please follow Invest in ME Research and our own websites and social media channels. Whilst we are working closely with the group of Dr Oystein Fluge in Bergen, Norway to help with the development and planning of a trial in Norwich similar to the ones currently underway in Norway, if the results from the Norway trial are positive. The outcome of this trial is critical to determining what we would plan to do in Norwich. Until this is known, and we have consulted with clinical colleagues, it is impossible to say what a future Norwich trial will consist of, or what the recruitment process will be.
     
    Last edited: Feb 13, 2017
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  17. Jo Best

    Jo Best Senior Member

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  18. Jo Best

    Jo Best Senior Member

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    From Invest in ME Research newsletter 12th February 2017 -

     
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