This Video Could Save your Life

Share on facebook
Share on twitter
Share on email

The Use of Patient Blogs as a Care Resource


Thanks to Greg Crowhurst for his incredibly kind review of my presentation on his blog and for giving permission for me to share his review on the #MEAction site:
“My heart goes out to anyone newly diagnosed with “ME”, Myalgic Encephalomyelitis, for you are instantly thrown into a wilderness; a barren, terrifying land populated by rogues, charlatans, scoundrels and tricksters, who will do you enormous harm, if you let them.
Their clamoring nonsense, to exercise, to take brisk walks, to push yourself through the illness and so on, or pay for their great “cure” are almost guaranteed to make you much worse, they could even confine you to bed, with multiple symptoms, for decades.
To save you from disaster, you need wise advice and quickly. I can think of no better resource than Sally Burch’s excellent video presentation; it could, literally save your life.
As Sally explains, the advice that you need, right here, right now,  is most likely to come from fellow patients, rather than from the medical profession.
I have been caring for my wife with very Severe ME, for more than two decades. I have to say that it took me at least eight years to even begin to unravel the hostile situation we found ourselves in. If only we had had access to Sally’s presentation back then : but that was in the days  before the internet existed.
It takes great discipline, maturity and enormous focus, not just to rant, but to convey the reality of ME in a professional, balanced, intelligent way; one that will speak as much to professionals as it will to patients; Sally’s video achieves that on all counts – it is extraordinarily clear and so easy to follow.
As she writes on her blog: it is as if people with ME “have been swept into some dark corner labelled “Beyond Help”!! In a bold, innovative and confident way Sally Burch has done a great deal in this video to highlight the role of patients as a much needed resource.”
— Greg Crowhurst
You can find links to all the referenced material in my blog post Just ME: “The Use of Patient Blogs as a Care Resource”

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

1 thought on “This Video Could Save your Life”

  1. I second everything you’ve said Greg, I wish Sally’s presentation had been available when I first went down with ME in 1999.
    The first time I watched the content, I kept missing bits because I was cheering out loud!
    Finally, someone had taken everything that needs to be said, especially at illness onset, and condensed it into a very easy listening and easily understood twenty minute visual and sound recording.
    ‘This video could save your life’ hits the spot exactly!

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Kristine Nilsen Oma featured in a Norwegian newspaper

Dance with ME: Show up virtually to support an artist with ME!

KRISTINE NILSEN OMA   Kristine Nilsen Oma is a dancer and choreographer living in Norway. She has ME, and though it has been difficult, she has found innovative ways to continue to perform her art. Now that the world understands creating art on Zoom or Youtube Live in ways that they did not in the

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe