1. Patients launch a $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!
No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

Exercise & ME/CFS event at Bristol Watershed.

Discussion in 'General ME/CFS Discussion' started by justy, Apr 11, 2014.

  1. justy

    justy Senior Member

    Messages:
    2,352
    Likes:
    1,985
    U.K
    I haven't seen this anywhere - not sure if this is the right place to post it

    From February 2014, includes a series of video presentations by Mark Van Ness, Nigel Speight and Erina Bowman after a showing of a short version of 'voices from the shadows'

    http://voicesfromtheshadowsfilm.co.uk/exercise-mecfs-event/
    Countrygirl likes this.
  2. justy

    justy Senior Member

    Messages:
    2,352
    Likes:
    1,985
    U.K
    Just watching Mark Van Ness's talk - its really clear and informative on exercise testing (pacific fatigue lab).
    I like the term Post Exertional Amplification - PEA- that they have come up with to discuss not just feeling bad after exercise but feeling worse over a period of up to 7 days, with in fact some symptoms worsening the further away you get from the exercise test.

    Really great stuff! Now how to force everyone in the world to watch this...

    sorry I cant work out how to put the video directly on here - tried a few things, but cant work it out - can anyone do this?
    rosie26, Sidereal and SOC like this.
  3. Sidereal

    Sidereal

    Messages:
    65
    Likes:
    180
    Mij and justy like this.
  4. Countrygirl

    Countrygirl Senior Member

    Messages:
    765
    Likes:
    411
    UK
    I haven't seen these posted on PR, so apologies if I have duplicated a post.

    It is the videos of the talks by Prof VanNess, Dr Speight and E. Bowman at Bristol, UK on February 5th 2014, following a showing of Voices from the Shadows.

    Enjoy!



    http://voicesfromtheshadowsfilm.co.uk/exercise-mecfs-event/





    [​IMG]
    [​IMG]
    justy likes this.
  5. justy

    justy Senior Member

    Messages:
    2,352
    Likes:
    1,985
    U.K
    Next talk of the day - Nigel Speight
    Sidereal likes this.
  6. Countrygirl

    Countrygirl Senior Member

    Messages:
    765
    Likes:
    411
    UK
    Last edited by a moderator: Apr 11, 2014
    justy likes this.
  7. lnester7

    lnester7 Seven

    Messages:
    1,144
    Likes:
    1,004
    USA
    If we make a campaign to bring machine and train personal to all excellence centers for ME, we will move forward much faster.
  8. SOC

    SOC Moderator and Senior Member

    Messages:
    5,034
    Likes:
    5,649
    USA
    What excellence centers for ME? o_O
  9. Sidereal

    Sidereal

    Messages:
    65
    Likes:
    180
    The "specialist" ME clinics in places like the UK and the Netherlands where people are prescribed CBT brainwashing to ignore worsening symptoms and engage in harmful aerobic exercise therapies? They could do with this machine, although as the speaker pointed out, these machines are common equipment. It's the people who know how to use them correctly in ME that are uncommon. :woot:
    maryb, SOC and justy like this.
  10. justy

    justy Senior Member

    Messages:
    2,352
    Likes:
    1,985
    U.K
    the final video - with thanks to @Sidereal for teaching me how to embed them here

  11. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,860
    Scotland
    The exact definition of a "Centre of Excellence" is the number of qualified folk employed by the centre.

    I don't know what the number is, but once it has been reached, it becomes a "Centre of Excellence".

    Far from what the name suggests, it is no indication of quality or of excellence, just the number of staff.
    biophile and Countrygirl like this.
  12. SOC

    SOC Moderator and Senior Member

    Messages:
    5,034
    Likes:
    5,649
    USA
    As if those centers would be willing to do CPET testing even if the equipment and staff was donated. :rolleyes: Actual data about the reality of exercise in ME/CFS would destroy their belief-based system, and they wouldn't have that. Sheesh.
    peggy-sue, biophile and ukxmrv like this.

See more popular forum discussions.

Share This Page