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  • Doug Carpenter
    replied
    Today there was a teleconference of the COMMEND Trial Steering Committee, of which I’m a lay member.

    The project being set up is a randomised control trial to see if acceptance and commitment therapy (ACT), which is proven to help in some other instances of terminal or life limiting illnesses, can benefit MND patients.

    The meeting was very positive in terms of progress against targets. Recruitment of therapists is well underway, as is selection of participants at 10-12 MND centres.

    I’ve made the point to the Chief Investigator that it is important to remember that many MND sufferers have to communicate in various ways other than speech. The project allows for this.

    It will probably be 2020 before data begin to emerge, but I am hopeful that this therapy could be helpful for some of the thoughts many of us have from time to time and which we see expressed on this forum.

    Every little helps!

    Doug

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  • Doug Carpenter
    replied
    The COMMEND team are now actively recruiting therapists and MND patients.

    The project (http://www.ucl.ac.uk/psychiatry/acce...y-motor-neuron) is being partly funded by the MNDA, but they now also have a Just Giving page (http://www.ucl.ac.uk/psychiatry/acce...ron/Support_Us) that people can use to make individual donations to enable MND patients to benefit from this study.

    Doug

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  • Newbie17
    replied
    I too found the meeting very interesting and I would urge anyone invited to take part in the project to do so.
    I agree Barry, disappointing that Nottingham MND patients won't be able to acccess the therapy. Hopefully the trials will be successful and the therapy will be rolled out nationwide in the future.

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  • Barry52
    replied
    It was good to meet you yesterday Doug and like you I found the meeting informative. Another forum member, Helen (aka Newbie17) from our Nottingham branch was also taking part via the online link. Of all the MND care centres involved in this project, I am disappointed that the Nottingham care centre at QMC is not included. The Nottingham MNDA branch is one of the best supported groups in the country and I’m convinced the study would have had no difficulty in recruiting candidates to take part.

    Barry

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  • Terry
    replied
    Thanks for the info and representing us Doug;

    Love Terry

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  • Doug Carpenter
    started a topic The COMMEND project

    The COMMEND project

    Yesterday I attended a meeting of the COMMEND Patient/Caregiver Advisory group at the Division of Psychiatry, University College London.

    The aim of the COMMEND project, led by Dr Rebecca Gould, is to adapt Acceptance and Commitment Therapy (ACT) specifically to the needs of MND patients and to train therapists in its delivery.

    Information about the project can be found here:

    https://www.ucl.ac.uk/psychiatry/acc...y-motor-neuron

    Doug
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