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Showing posts from May, 2011

A survey about patient bloggers - for the ICIE's 4th anniversary

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I started the ICIE blog on May 19, 2007.  I was recently told I was an " early adopter " in this respect (by Meredith Gould in the comments to her post Fibromyalgia Awareness Day and Why I Give A Hoot ), and  I was wondering what kind of post to do to celebrate my blog's creation when I read about the Tufts University Medical School Patient Blogging Survey on Trish Torrey's about.com Patient Empowerment blog in the post Are you a patient?  Do you blog?  Survey Sez...  (Of course that's bloggers who are medical patients, as opposed to bloggers who are cool, calm and collected.) I took the survey, thought it was short and very interesting, and am looking forward to reading about the results. The more respondents they have the more accurate the results.  If you have a patient blog please think about taking a few minutes to complete the survey: "Lisa Gualtieri teaches health communications at Tufts University. She and her colleagues have put together a

Fibromyalgia Awareness Day Guest Post by Toni Marshall of The Northern Virginia (NOVA) CFS/ME, FMS, & OI Support Group: Awareness Benefits Me

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Blogger was down yesterday and most of today so this is one day late.   Toni and I met at the National Fibromyalgia Association's Leaders Against Pain conference in August of 2008.  She's an active member of the very active and long standing Northern Virginia (NOVA) CFS/ME, FMS & OI (Orthostatic Intolerance) support group ( http://cfsnova.com ).  Toni is a prolific writer and I'm really happy and grateful to be able to share her observations on Awareness Day with you today.  She is always very generous about sharing her experiences in helpful and non-judgmental ways.  (If you are interested in a little more background information about the history of the May 12th Awareness Day, check out the blog post I did in 2009, "Today is International Awareness Day, and there are an unprecedented number of ways to participate without ever leaving home.") Without further adieu, here is Toni's article.  Awareness Benefits Me I am grateful to know of Florence Nig