1. Guest, the 'News in Brief' for the week beginning 16th November 2020 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice
  3. Guest, NICE have published their draft guideline for ME/CFS, click here to read about it.
    Dismiss Notice

Petition for increased research funding in the UK

Discussion in 'Petitions' started by Adrian, Nov 2, 2017.

  1. Adrian

    Adrian Administrator Staff Member

    Messages:
    4,822
    Likes Received:
    24,459
    Location:
    UK
    I noticed this on twitter (UK only)

    https://petition.parliament.uk/petitions/203140
     
  2. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    Messages:
    1,918
    Likes Received:
    13,960
    Signed

    1431 signatures so far
     
    Invisible Woman, MeSci and Andy like this.
  3. Moosie

    Moosie Established Member (Voting Rights)

    Messages:
    30
    Likes Received:
    258
    Signed
     
    Invisible Woman, MeSci and Andy like this.
  4. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    4,173
    Likes Received:
    31,020
    Location:
    UK
    signed 1436

    and, to me, it is about the next generation of suffers, it being a tad late for some of us ;)
     
    Invisible Woman, MeSci, Jan and 2 others like this.
  5. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,806
    Likes Received:
    31,179
    tbh, I'm wary of signing anything which could lead to more funding for Crawley.

    This is such a ridiculous situation... I should be able to sign that petition, but I just don't trust the UK medical research Establishment at all.
     
  6. markiemark

    markiemark Senior Member (Voting Rights)

    Messages:
    136
    Likes Received:
    1,024
    Location:
    Scotland
    signed! :)

    edit: I definitely understand @Esther12's concerns though. More funding is not the complete picture. Research into where we prioritise research and research standards need to be addressed too.
     
  7. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    2,441
    Likes Received:
    14,539
    Location:
    Cornwall, UK
    Signed
     
    Awol, Invisible Woman and Andy like this.
  8. Graham

    Graham Senior Member (Voting Rights)

    Messages:
    2,880
    Likes Received:
    25,204
    I agree about us not needing more funding for the psychs, but, to be fair, when MPs did get involved with an Early Day Motion back in 2010 it was to push the MRC into funding biomedical research. OK, it was the third attempt by parliament to get things moving, and the MRC only responded in 2011 as a one-off, but I do not think that MPs are happy that money is being spent on CBT etc.

    The other point is that the spending on ME is utterly pitiful. Squabbling over the relative crumbs doled out to the psychs instead of demanding equivalent funding to comparative medical conditions just wastes our energies.
     
    Invisible Woman, Andy, Awol and 2 others like this.
  9. Awol

    Awol Senior Member (Voting Rights)

    Messages:
    219
    Likes Received:
    1,627
    Interestingly, the petition was created by Sharon Anne Tiday, mother of 10 year old Shannon Tiday, whose instant response on video to the media hype about Esther Crawley's SMILE trial of the Lightning Process was itself reported in local/regional media.

    So although I completely agree with your comment, this time the petition comes with that bit of background publicity attached.

    The journalist Geoff Baker, had previously written this article inspired by Shannon's video:
    https://www.indyonline.co.uk/indy-column/please-take-vile-illness-seriously/

    Here's the link to her video for ref.



    Sharon Tiday is linking the petition with a campaign she calls 'Listen to ME'.

    She had already been proactive in raising disability awareness and this is her campaign profile on Twitter..

     
  10. Awol

    Awol Senior Member (Voting Rights)

    Messages:
    219
    Likes Received:
    1,627
  11. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    4,032
    Likes Received:
    18,741
    I think what we are missing is a coordinated campaign off the back of unrest. The media profile has been raised, we need to capitalise on this. If national coverage is difficult perhaps it has a local base to build from ( similar to Bristol Cable articles).
    In New Year i will look at getting unrest into my daughter's school ( trying very hard to get virtual educational provision established) and combine this push with other chronic illnesses. We have no support group locally, although 25 group is nearby, so it would be interesting to see how many pwme there are locally.
     
    Valentijn and Indigophoton like this.

Share This Page