Links & Resources
I haven’t yet found a good way to organize these links yet, but want to post some of them anyhow; I’ve created information sections for now, with some brief excerpts.
Links specifically for CRPS/RSD are at the bottom of the Rare disease section.
Patient Engagement: 14/02/2013; by Julia James; Health Policy Briefs
“People actively involved in their health and health care tend to have better outcomes – and, some evidence suggests, lower costs…
shared decision making involves several essential elements. First, providers and patients must recognize that a decision is required. Next, they must have at their disposal, and understand, the best available evidence. Finally, they must incorporate the patient’s preferences into treatment decisions”
How to See What the Internet Knows About You (And How to Stop It): 03/07/2017: by Tim Herrera; The New York Times
“Let’s go down this rabbit hole. Start with this neat and medium-scary site, which our friends at Gizmodo flagged, that shows you everything your browser knows about you the second you open it. Here’s another one.”
How to read and understand a scientific paper: A guide for non-scientists: 25/08/2013; by Jennifer Raff (PhD in Anthropology and Genetics); her blog
“to help people become more scientifically literate, so I wrote this guide for how a layperson can approach reading and understanding a scientific research paper. It’s appropriate for someone who has no background whatsoever in science or medicine”
What happens when patients know more than their doctors?: 13/11/2013; By Rosamund Snow, Charlotte Humphrey & Jane Sandal; BMJ Open
“Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field”
Physical activity, even in small amounts, benefits both physical and psychological well-being: 2017 (undated); University of Cambridge
“researchers found that modest levels of physical activity – even if it couldn’t be classified as exercise – can increase a person’s reported emotional well-being, regardless of their baseline level of happiness. They also found that people reported being happier when they were physically active”
Complex regional pain syndrome: a long overlooked condition: 10/02/2017; by Swathikan Chidambaram; BioMed Central Ltd.
“Over the years, the complex nature of CRPS has proved an enormous challenge for clinicians and researchers alike…”
Proposed New Diagnostic Criteria for Complex Regional Pain Syndrome. By Harden RN, Bruehl S, Stanton-Hicks M, Wilson PR. Pain Medicine, Vol 8 (4), 326-331. 1 May 2007 (Published: 12 Feb 2007). Web: https://doi.org/10.1111/j.1526-4637.2006.00169.x
“After much debate in the literature and at scientific meetings, the name was ultimately changed to complex regional pain syndrome (CRPS) at a consensus workshop in Orlando, Florida, in 1994, with the new name and diagnostic criteria codified by the International Association for the Study of Pain (IASP) task force on taxonomy”
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Coming soon! International Rare Disease Day (21.02.2018)
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