Wednesday, January 21, 2015

Jim Says, "Follow the Consumer Pain Advocacy Task Force!"

Jim Broatch, that is --

James W. Broatch, MSW
Executive Vice President and Director, RSDSA...

Jim Broatch is the name I associate with the wonderful organization, upon which I rely, as a person now nearly 13 years into her CRPS journey: RSDSA.  I wish to goodness they'd change their name to eliminate the deceiving and [mostly] scientifically inaccurate "RSD," but since so many out-of-the-loop health care providers continue to feed newly diagnosed patients the pablum, easy to digest, of "RSD," the organization must want to maintain its availability to everyone...

Even many of the most talented and experienced medicos maintain that it really makes no difference -- call it "RSD" or call it "CRPS" -- because the treatments (such as they are!) and means of diagnosis are the same.
Sorry, but I call "foul" on the play!  

Just as we've seen an explosion of good, solid science on CRPS, Types 1 and 2, and have watched the whole tenor of the discussion around this sucky pain syndrome evolve, so will we watch the distinction widen between emphasizing run-away circuitry within the sympathetic nervous system (the simplistic "RSD" explanation) and the complexities of neuro-inflammatory and immunologic bases being proven in labs and in well-founded studies of CRPS. [ADDENDUM: Here's one of my first attempts to make this point, long, long ago!]


Jim sent me and several thousands of his closest friends a challenging invitation to support the work of the newly formed Consumer Pain Advocacy Task Force.  The "war on [prescription] drugs" is having an unintentional negative impact on people in severe pain due to physical illnesses like CRPS. He invited each of us to share a flyer promoting CPATF... and that, of course, is what this post aims to do.

I just have to work my way through the provenance of everything here writ.  It is something I do, and rather than change my obsessional impulses, I try to provide a small explanation.  Either you'll wade your way through the genealogies of this blog, or you'll learn to scroll down the page to what you think really matters.
(Mes chers lecteurs! "Whose blog is it, anyway?")


When Jim Broatch becomes involved in something, it's often my lazy way to enlightenment, and I tag along to see what's up.  Rarely am I disappointed.  Usually, I am taught a thing or two.

Read on, Macduffs!

Dear Marlinspike Hall Occupants and Belovèd Readers of elle est belle la seine la seine elle est belle :
RSDSA has joined the newly formed Consumer Pain Advocacy Task Force (CPATF)
In March 2014, 16 organizations formed the CPATF to unite around one goal - to work collectively to promote, support and monitor the implementation of the National Pain Strategy (NPS).  Learn more about the NPS and how you can be involved by clicking here. RSDSA  will keep you informed along the way and ask for your involvement at critical moments. Stay tuned and be ready to take action.  We expect the NPS Report to be released for an open public comment period soon and will send you an action alert at the right time so you can join thousands of others living with pain to speak out in response.

The following beliefs guide our collective work:
  • Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions
  • Chronic pain is an unrecognized and under resourced public health crisis with devastating personal and economic impact
  • Effective pain care requires access to a wide range of treatment options
  • Allowing people to suffer with unmanaged pain is immoral and unethical
****In the meantime, please read and share this information sheet with others-your family, friends, healthcare providers and community.****


James W. Broach

James W. Broatch, MSW
Executive Vice President and Director

So click on the INFORMATION SHEET!  Print copies!  Dance, prance, stroll, or roll through your own belovèd communities and thrust, or gently place, the info into waiting hands!  Okay, it would also be wonderful if you emailed it to some quietly hurting friend or an activist with time on her waiting hands. It would even be sufficiently wonderful if you download the file to your own device and take on the cause as a private thing.  Sniff.

Image source:  Rabble Rouse the World Books Banner

© 2015 L. Ryan

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