Wednesday, February 20, 2013

PLoS and Open Access: Research is finally getting sexy

open access logo
ripped off from PLoS ONE, Open Access, and the Futureof Scholarly Publishing

Just assuming that CRPS was more of an orphan disease this year than last, I had not noticed that my MedWorm feed results were no longer arriving. Either MedWorm has gone kaput or they're renovating, but there's been nary a word of CRPS happenings since very early in January.

So while they sort that out, I'll just do the oh-so-hard work of plugging in a few terms into the Entrez cross-database search engine at NCBI. Excuse me while I wipe the sweat from my brow.

And puh-leeze, if you're tech savvy enough to search out blogs 'n such, you're plenty capable of sorting through a couple of hundred articles and thousands of abstracts to find *exactly* that aspect of CRPS you're researching.

So here is a link, an exciting one, to PMC's (that's PubMed Central, part of the US National Library of Medicine, National Institutes of Health) current listing of 719 articles "about" CRPS that are available FREE, online.  You know how I feel about FREE!

----->> PubMed Central: free, full text journal articles -- and please note that I did a simple, one-item search.  You'll be richly rewarded the more you hone your search terms, though it does help to "go large," and then narrow down.

Just to share a bit of what you can expect as a reward, the first article that pops up is titled "Complex Interaction of Sensory and Motor Signs and Symptoms in Chronic CRPS," and its introduction is very layperson friendly:

Complex Regional Pain Syndrome (CRPS), mostly regarded as a neuropathic pain disorder, is typically evolving after a minor trauma of the limb . Besides pain, CRPS displays a multifaceted clinical pattern consisting of vaso- and sudomotor changes, as well as trophic and motor disturbances, edema and somatosensory changes . In consequence, many patients sustain impairments of hand function persisting even many years after the initial trauma . The clinical presentation, and therefore the criteria leading to the diagnosis of CRPS, are mostly applied to patients with recently emerging, “acute” CRPS . Much less is known about the occurrence of the respective signs and symptoms when the initial phase of the disease subsides. Furthermore, the underlying pathophysiology of CRPS is still under debate . Some authors stress the role of peripheral pathomechanisms, namely peripheral neurogenic inflammation and small fiber axonal degeneration . In addition, autoimmune dysfunction seems to be involved in CRPS pathomechanisms . Contrariwise, a distinguished body of literature supports the involvement of the central nervous system in terms of sensory as well as motor adaptive changes. More generally, the level of accompanying chronic stress and depression might also account for somatosensory changes and the level of ongoing or evoked pain particularly in chronic pain patients. However, the degree of stress and depression in patients with chronic CRPS is not well characterized. Recently, it has been suggested that the pathophysiological mechanisms of CRPS follow a distinct time course, with a preponderance of peripheral inflammation and beginning of small fiber degeneration in the acute phase, and progression of small fiber degeneration as well as central pathomechanisms dominating the chronic phase of the disease . It is still unclear to which degree the underlying pathophysiological mechanisms predict the clinical presentation of CRPS and the resulting outcome of the disease, although recent studies suggest an interdependency between the clinical presentation, the underlying pathophysiology and possible consequences in terms of resulting impairments. Namely, differences in skin temperature might facilitate the discrimination between an ongoing peripheral or central pathophysiology. . So far, many clinical studies focused on the characterization of different specific aspects of the disease, for example the degree of neurological changes or the description of motor impairments . Furthermore, many studies mixed patients with short duration of the disease with those suffering from chronic CRPS. Up to now, a comprehensive survey linking quantitative sensory changes to CRPS symptomatology and the degree of resulting impairment is still unavailable for patients with chronic CRPS. In order to expand the knowledge of clinical characteristics of chronic CRPS and the level of concomitant stress and depression, as well as to characterize the degree of resulting hand impairment and disability, this study was performed.
Published by PLoS ONE, the entire text is there.

And now a word about PLoS ONE, and why these things get me so excited, and if you are a citizen trying to advocate for yourself or a loved one, trying to help your health care professionals out when dealing with an obscure disease, or at least, a non-sexy and underfunded one, why you should be supportive of them and excited, too!

Posted on  by David Knutson  
PLOS applauds the efforts of legislation sponsors Sens. Cornyn (R-TX), and Wyden (D-OR) and Rep. Doyle (D-PA), Yoder (R-KS) and Lofgren (D-CA) with the introduction of bipartisan and bicameral legislation that will maximize the impact of federally funded research. The Fair Access to Science and Technology Research act (FASTR) act states: 
”The US has a substantial interest in maximizing the impact and utility of the research it funds by enabling a wide range of reuses of the peer-reviewed literature that reports the results of such research, including by enabling computational analysis by state-of-art technology. 
The Federal Government funds basic and applied research with the expectation that new ideas and discoveries that result from the research, if shared and effectively disseminated, will advance science and improve the lives and welfare of people in the US and around the world.  The internet makes it possible for this information to be promptly available to every scientist, physician, educator and citizens at home, in school, or in a library” 
Increasing access to research outputs delivers benefits for the economy, for medical patients, for innovators and for the general public. In Tuesday’s State of the Union Speech President Barack Obama referenced the Human Genome Project, which has generated both good science and $141 dollars returned for every dollar spent. In addition, one of President Obama’s distinguished guests was Jack Andraka, a high school sophomore, who won the 2012 Intel International Science and Engineering Fair for his creation of a new method to detect early-stage pancreatic cancer. His discovery was made possible by using the research outputs he could access freely online. 
We are seeing a proliferation of increased access, from new journals to new guidelines and legislation. In the UK, PLOS strongly supports the efforts of the UK Government and Research Councils to increase access to publicly funded research. We applaud the development and implementation of policies in Ireland, Denmark, Argentina, Australia and in the European Union. We stand firmly alongside any organization or initiative that attempts to eliminate unnecessary barriers to the immediate availability, access and use of research, and we look forward to working with them in the journey towards full Open Access. 
We invite you to join us in the PLOS mission to lead a transformation in research communication for the benefit of all. We urge you to call, write or email your congressional representative and express your support for FASTR. Click here to read the Fair Access to Science and Technology Research Act.

Bipartisan, bicameral legislation, oh, excusez-moi, I've got the shivers!  If you have CRPS or any other underfunded, under-researched, and terribly depressing disease that makes you search for help and hope online at 3 AM, then support this legislation, and work to free up information.  Take a measure of control back!

Strike a blow for Quality of Life!  QOL!  ADL!  PDQ!  ASAP!  QID!  NPO!  Download and print a copy of the legislation and use it as the basis for some incredibly painful but life-affirming bit of physical therapy.  I dunno, practice turning the pages, one by one.  Lift it over your head.  Drop it and pick it up.  Throw it at some lazy, whiny person! {::ducking::} Woo hoo, life is grand!

Well, it probably shows -- I'm feeling rotten and pretending it just ain't so.  As in, seriously rotten, should probably head for the hospital rotten.  But I'm trying, also, to stick to The Plan -- minimal interventions, just putting out the 3-alarm fires, and letting this bleeping infection in my bones and the CRPS take their course.  It's a hard habit to break, wanting to call for help for every crisis.  

This is where my well-known zen-like, calm and centered self comes into play.

Oh, shut up.  I can try!

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