Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

MEA - End of Amazon Ed's huge adventure

Discussion in 'General ME/CFS News' started by V99, Aug 9, 2010.

  1. V99

    V99

    Messages:
    1,471
    Likes:
    5
    UK
    http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=1366:eek:n-gmtv-on-monday-morning-august-9-the-end-of-amazon-eds-huge-adventure&catid=30:news&Itemid=161

     
  2. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    959
    Likes:
    179
    UK
    Anyone else noticed that although they raised about 40,000 for Cancer Research, the ME Association and rainforest charities (why anyone would waste their time raising money for the mega-charity Cancer research is beyond me, but anyway), the total expedition cost 63,000 to mount. Might as well have stayed at home and just donated the money to charity!
     
  3. V99

    V99

    Messages:
    1,471
    Likes:
    5
    UK
    Have you seen the news coverage? All they mention is the rainforest, nothing about ME. V. disappointing coverage.
     
  4. Sasha

    Sasha Fine, thank you

    Messages:
    15,193
    Likes:
    36,916
    UK
    Yeah, just heard a news item on the 7pm Radio 4 news and not a word about the charities he was supporting. What a shame.
     
  5. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    7
    Europe
    There is a UK BBC News website link here (today - Monday) that mentions the ME Association (quite a way down).

    His father died from cancer - hence the cancer research.

    http://www.bbc.co.uk/news/uk-10852783

    (Not sure if this link will be available after today).
     
  6. V99

    V99

    Messages:
    1,471
    Likes:
    5
    UK
    Thanks for the link pictureofhealth. It's so weird that they are covering this story but keeping the charities hidden.
     
  7. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    959
    Likes:
    179
    UK
    I think its a failure on the part of the ME charities in general to advertise who they are and/or more importantly what ME is. I'm sure most people are clueless as to what ME is.
     
  8. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    7
    Europe
    One of the charities he was raising money for was the UK ME Association and specifically to help fund the set up of a Brain & Tissue Bank for study of post mortem samples in ME patients in the UK.

    Dr Shepherd reports (in a previous edition of their magazine ME Essential) that some feasibility and cost studies have already been undertaken to see whether it would be practical to have a stand alone ME Brain & Tissue Bank, or whether to have the ME tissue samples included as part of a central/national Brain and Tissue bank for many other illnesses too such as MS, (I think the Medical Research Council runs/funds the main one?).

    I think you're right Garcia, a bit more publicity from the ME charities outside their usual arenas wouldn't go amiss. It may be that UK funds are really tight of course - there are far fewer of us than contribute to the big American charities.

    But also probably each news story tends to have 1 main theme/focus - and walking the entire length of the Amazon is a HUGE achievement worthy of coverage in its own right probaby a film - definitely a book. The Brazilians wouldn't even help Ed as they thought it couldn't be done (the song 'Mad Dogs and Englishmen) comes to mind!

    Really glad to see Sir Ranulph Fiennes backing him.

    Re ME publicity - It would be great to see some giant posters going up in London in the middle of the night right in front of the MRC and Kings College for eg - "ME - devastating neuroimmune illness leading to death - no funding by the UK government" - then picture of a grave. (Ok I'll think this through and come up with something better!)
     
  9. V99

    V99

    Messages:
    1,471
    Likes:
    5
    UK
    Sounds good to me.
     
  10. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    959
    Likes:
    179
    UK
    Awesome idea! All we would need is 1 strategically placed poster. Wonder how much that would cost?
     

See more popular forum discussions.

Share This Page