1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Fable known as The PACE Trial
Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...
Discuss the article on the Forums.

Llewellyn King interviews Dr. Chia (Part 4): ME/CFS Alert Episode 41

Discussion in 'General ME/CFS News' started by Ember, Feb 19, 2013.

  1. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,779
  2. ballard

    ballard

    Messages:
    64
    Likes:
    48
    Llewellyn King should be nominated for a humanitarian award. Thanks to him and all that he does for us. :balloons:
    Radio, merylg, maryb and 3 others like this.
  3. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,779
    Chris Cairns (CFS Patient Advocate) asks:
    merylg likes this.
  4. SOC

    SOC Moderator and Senior Member

    Messages:
    5,280
    Likes:
    6,233
    USA
    My best guess is that it's a funding issue. They have very limited funds, so they research what they can get funding for. They are most likely to get funding for research in the area of expertise of the principle investigators, which is not, at present, enteroviruses. We need to get an high level enterovirus researcher interested and on one of those teams.
    vli, merylg and SpecialK82 like this.
  5. Gemini

    Gemini Senior Member

    Messages:
    383
    Likes:
    230
    Yes an enterovirus researcher collaborating with research gastroenterologists who perform endoscopies and have tissue banks available for testing. I agree with Dr. Chia that his research needs to be replicated, and hopefully the advocates working on the FDA's upcoming meeting will put Dr. Chia's request for enterovirus antivirials from drug companies high on their priority list.
    Ember and merylg like this.
  6. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,779
    Or Dr. Ian Lipkin? Chris writes, "The most likely person to pursue the enteroviral connection in ME/CFS is Ian Lipkin at Columbia. Lipkin has an inquisitive nature. I would be surprised if he is doing tissue biopsies, which seems the way to go."
    vli likes this.
  7. Guido den Broeder

    Guido den Broeder *****

    Messages:
    278
    Likes:
    178
    Rotterdam, The Netherlands
    A lot of important research into ME was done before the invention of CFS.
  8. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,779
    Is this what you're referring to?

    “Myalgic encephalomyelitis – a persistent enteroviral infection?” (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429637/pdf/postmedj00163-0031.pdf)
  9. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,330
    Likes:
    1,762
    London
    Dr Mowbray at St Mary's released a entroviral test onto the NHS in the UK for ME patients. I'm not sure who he was working with then. There was a group called the persistant entroviral research group (or something like that). I had the test in the late 80's. At that time the only treatment they had was Amantadine.
    Sadly, in the UK no one would finance this work and it dried up. Most of the doctors are dead or retired now.
  10. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,779
    A warning was sounded in 1989: S. Wessely, "Myalgic encephalomyelitis - a warning: discussion paper" (http://www.simonwessely.com/Downloads/Publications/CFS/2.pdf). Interesting read!

    Here's a bit of history (1987):
  11. vli

    vli

    Messages:
    1,732
    Likes:
    1,788
    CA
    Yeah. Frankly, I would've preferred the $1m anon donation that Mt Sinai received be used on investigating enteroviruses rather than PEM.
  12. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    447
    Likes:
    228
    West Coast USA
    I watched all four segments, excellent information. Very thought provoking. So many potential facets to this condition.

See more popular forum discussions.

Share This Page