Excellent guest-post on Jennie Spotila's blog today, some of which seems to have arisen from a discussion here on PR:
http://www.occupycfs.com/2015/05/05/awareness-reboot/
If your blood pressure can stand it, more on the blog on the problem and the solution...
http://www.occupycfs.com/2015/05/05/awareness-reboot/
Occupy CFS said:
Occupy CFS said:The release of the Institute of Medicine report resulted in an unprecedented amount of media coverage and public discussion. As has long been the case, not all comments and discussion have been constructive. In fact, the nastiness of many attitudes held by the public and healthcare providers makes the case for a large-scale awareness campaign to correct misinformed views about patients and this disease.
In his post Alone in the Woods, Joe Landson aptly points out that we all have at least one “dear” friend who knows all about the simple way to overcome our disabilities. These people bubble over with bad advice. But in the 10 weeks since the release of the IOM report, I have seen scores of disparaging and demeaning comments, so many that it was quite difficult to cull just a few.
For example, there are published comments such as this, on an article in The New York Times:
me not frugal
California 25 February 2015
Those claiming to be suffering from CFS are often their own worst enemies. Even the writer uses the loaded word “ignorant” in reference to physicians who did not agree with her self-diagnosis. In my many years of dealing with chronic migraine and nerve pain issues — researching treatments, reading blogs, visiting the neurologist and other caregivers — I have come across innumerable self-diagnosed CFS martyrs, both in person and online. They tend to be people who rant, accuse, judge, whine, compete for who hurts the most, and hold on for dear life to that one thing that makes them feel special and deserving of sympathy. Chronic Fatigue Syndrome. The bald-faced truth is that CFS, whether it is a real medical condition or a compilation of malaise and unhappiness, is the life ring of attention seekers. [...]
If your blood pressure can stand it, more on the blog on the problem and the solution...