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”