Spring 2015
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Advocacy Update

Fibromyalgia & Chronic Pain LIFE 
2015 Spring Edition
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The Low Dose Naltrexone Research Trust's free Health App (myLDN) is a very useful tool to help people with chronic health conditions track their medical info all in one place. It encourages people to try and improve their quality of life one day at a time, which is monitored with graphs. The LDN Research Trust  offers help and support. No one is on their own which is very important when managing a chronic condition.  To know more, please click here

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Did you miss the  FB Chat with sleep expert Dr. Victor Rosenberg?   Transcribed  highlights are available to read and print by clicking here.. 
Dr. Victor Rosenfeld
Thanks Dr. Rosenfeld  and Pain Pathways Magazine!
URGENT Response Requested  
We are at a crucial time in history for people with pain. The very first national strategic plan to advance pain research, education and treatment--The National Pain Strategy (NPS)--has been released for public comment for a short period of time. We need your voice NOW to make sure that the NPS is changed from words on a page to a reality. Please take 5 minutes to help by sending a letter to HHS- we've done most of the work for you!  Read more...   

Preliminary Results from "Hydrocodone 
Rescheduling: The First 100 Days Survey"    
March 20, 2015 - Logan, Utah - Preliminary analysis of an online pain patient survey conducted by the National Fibromyalgia & Chronic Pain Association (NFMCPA) was presented as a scientific poster at the American Academy of Pain Medicine's 31st annual meeting in National Harbor, Maryland. The survey responses point to unintended consequences in patient suffering are caused by reduced access to prescription medications. Responses to the questionnaire highlight the dilemmas encountered by people suffering from unrelenting chronic pain who are being denied hydrocodone medications in the wake of stricter federal regulations enacted on October 6, 2014. Read more...

The NFMCPA is excited to announce: 
New conference format for health professionals and patients to learn the latest science side by side. 
More information coming soon! To receive updates about registration, please click here. 

Staying Updated is Now Easy! 
If you would like to receive notice of future surveys and advocacy legislative issues in your state and nationally, an email alert can be sent to you.  For surveys, you will then have the option of participating or not.  No identifying information is collected in the survey so that participation is anonymous. 
Please click here to register for an email alert about future surveys and state or national legislation/policy. 

Microglia - Part II of Glia Articles 
What is microglia?  How does it protect the central nervous system?  This is Part II, Section 1 of a series of glia articles published in the NFMCPA Advocate Voice Newsletter.   
Microglia represents the endogenous brain defense and immune system, which is responsible for the central nervous system (CNS) protection against different types of pathogenic infiltrations.  In post natal development in rats, the microglia cells immigrate into the brain until post natal day 10. After invading the CNS, the microglia precursors travel throughout the neural tissue acquiring a specific phenotype (biochemical characteristics of an organism), which specifically identifies them as being different from the precursor blood monocytes.  Read more...

Is Fibromyalgia a Mitochondrial Disorder?
Reprinted with permission from Cort Johnson 
We tend to think of fibromyalgia as a central nervous system disease but that focus has tended to obscure the growing evidence of problems in the body. We don't tend to think of fibromyalgia as an inflammatory disorder. It's true that overt signs of inflammation are rarely found in people with FM, but some studies suggest inflammatory factors may play a role. then there are the mitochondria. Mitochondria dysfunction is thought of as a real possibility in chronic fatigue syndrome, but I've rarely associated it with fibromyalgia pain. It turns out, however, that multiple studies -- most of them small - suggest that mitochondria dysfunction could indeed play a significant role in fibromyalgia. Read more...

Low Dose Naltrexone for Treatment of FM and Other Chronic Pain Conditions

Low dose naltrexone (LDN) for the treatment of fibromyalgia and other chronic pain disorders is a low cost, low side affects therapy that has been shown effective in multiple studies. A low dose naltrexone study in reducing fibromyalgia pain was done at Stanford University by Jared Younger and Sean Mackey and published in 2009 in Pain Medicine which demonstrated effective reduction of pain in study participants.  Then in 2013 results from a second Stanford LDN study by members of the same team was published in Arthritis & Rheumatism. The conclusion of the study documented preliminary evidence showing that low-dose naltrexone has a specific and clinically beneficial impact on fibromyalgia pain. The medication is widely available, inexpensive, safe and well-tolerated.  Read more...
New 5-Minute Survey:  Do You Want More        Access to Research Results?
What is your perspective on pain research?  For an upcoming  presentation to scientists at the NIH Pain Consortium meeting your anonymous input is needed on: 1) what patients are experiencing in regards to research study participation; 2) accessing information on available studies and locating study findings; and 3) what research personally means to them when thinking about their future health and well-being. The overall goal of the presentation will be to really challenge and encourage pain researchers (from students all the way up to the level of senior faculty and federal health agency staff) to start thinking about widespread translation of their research findings to patients and health professionals.  This survey aims to spur NIH to improve clinician education, patient education, and most importantly, improved pain care and quality of life for patients. Thank you for your support.  YOUR VOICE MATTERS. Please go to:  https://www.surveymonkey.com/s/FZ8YRD9 

New Documentary on Chronic Pain

Do you know of a physician willing to be interviewed for a documentary about the effect the new DEA Rescheduling of Hydrocodones has had on their practice?  Do they no longer prescribe opioid medications or Controlled Schedule II drugs?  Dr. Lynn Webster is preparing a public documentary about the unintended consequences of the new rules for access to pain medications.  Please contact him at http://www.lynnwebstermd.com.  

Is Housework Overwhelming?
Break it Down
When you think about cleaning your house, do you feel overwhelmed? Occupational therapist expert Barbara Kornblau understands that cleaning your house or apartment can be an overwhelming task if you have fibromyalgia.  She also lives with fibromyalglia and understands when someone says, "Sometimes the mere thought of cleaning the house makes me tired and sore." After teaching adaptation skills  at the university level, Barbara offers many of those tips to us.   Read more...
Clarissa Shephard:  Fellow Traveler
It can take many tries until we find the correct physicians, therapies, medication, supplements, etc.   It is no different in finding the right support group. I joined a lonClarissa Shephardg list of groups before I found the right fit. The group name, about section and rules may sound good; but until you have read posts, comments and read the admin's responses you will not know the true atmosphere of the group.  If you are lucky, you have someone you trust that will give you that perfect reference.   Read more...
You officially rock!!  Thank you for caring and sharing.  Together we reached almost 3/4 of 1 million people - 741,120!  Hooray for the great team work!

"Can't there be a national opioid addiction problem and a national epidemic of under treated pain at the same time?
Drs. Sean Mackey and Anna Lubke debate the issue at the April 2015 Stanford University Health Policy Forum.  The debate over prescription painkillers is explained.  

Jan Chambers, NFMCPA Pres interviewed for documentary 
A documentary in the making featuring the challenges and reality of living with fibromyalgia and invisible illness.  The NFMCPA is proud to be a part of this documentary featuring participants from the very successful Caterpillar Walk in New York City on May 9th.   

Looking for a good fibromyalgia or chronic pain awareness t-shirt that's well made? 
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Disclaimer:  Please consult with your physician for medical care and treatment. The information in this newsletter and website is not a substitute for professional medical advice. 
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