The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Girl with chronic fatigue syndrome ME at age of EIGHT battles against both illness and ignorance

Discussion in 'General ME/CFS News' started by Ecoclimber, Nov 7, 2015.

  1. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    989
    Likes:
    2,440
    Girl with chronic fatigue syndrome ME at age of EIGHT battles against both illness and ignorance
    • By Grace Macaskill
    Simple tasks like changing her clothes or just drawing can leave Kaylah Davies totally worn out and she also suffers flu-like symptoms, painful joints, dizziness and nausea

    Like any other little girl, eight-year-old Kaylah Davies would love to go to a birthday party or a sleepover.
    But these days she is too ill to join in. even just chatting on the phone to her friends can tire her so much she collapses with exhaustion.

    Kaylah is one of Britain’s youngest victims of chronic fatigue syndrome – also known as ME or even myalgic encephalopathy – after being diagnosed at the age of just six.

    The most simple of tasks, such as changing her clothes or just drawing, can leave Kaylah totally worn out.

    At least some UK media can do a nice write up on ME/CFS patients. This would be a great opportunity for the patient community to thank the author and to make comments on our behalf.

    No intention to sound preachy, but as a side note and way of explanation, part of our battle is to turn the tide of the UK media for us instead of against us. We can accomplish this by winning over the journalists through our appreciation on their fair reporting and by winning over the public by generating readers to this column with our comments. We have the momentum and momentum is critical, let's not lose it!

    Another way is signing the petition @Sasha
    http://my.meaction.net/petitions/pace-trial-needs-review-now

    Social media advantage is important and every tool we can use in our fight is important. If every patient who signs into PR each time would copy and pace the articles links cited below - (given the fluid nature of this discussion, there may be others) - I posted on a continual basis into Google seach and then click Google, it would rank these articles to the first page and bury the opposition to the lower rank pages.

    People googling on chronic fatigue syndrome or the PACE trial usually only go so far as to the 1-3 pages. It only takes a few seconds and benefits not only you but the authors' websites as well !

    blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/

    virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/

    keithsneuroblog.blogspot.co.uk/2015/11/pace-thoughts-about-holes.html


    Thx
     
    Last edited: Nov 7, 2015

See more popular forum discussions.

Share This Page