Your voice matters, and you can make a difference!

People making decisions that significantly affect your quality of life (federal officials, legislators and policy makers) need to hear from you. Joining the #ISpeakForPain and telling your story can affect their policy decisions and new areas of research, as well as making chronic pain visible. The National Fibromyalgia & Chronic Pain Association and pain patient organizations were recently asked to reach out to people with pain and their families directly to ask about their experiences. Your voice matters in making a difference. 

The NFMCPA is also raising support of the National Pain Strategy and chronic pain as a major national health issue. On June 22nd, we will launch 10 days of the #ISpeakForPain blitz, and we've designed simple, free ways YOU can be heard. 

You will learn how to participate in this campaign effectively, how to blitz the Internet with the voices of chronic pain, and how to advocate for yourself and chronic pain patients across the country in incredibly easy, accessible ways. A full schedule of events is available below. A new activity will go live with working links each day. Make sure to use #ISpeakForPain in all of your social media posts related to the campaign to signal that you're speaking up for more research and improved healthcare for pain.

Save the date! On July 13th, a Twitter Storm of chronic pain voices is happening, and we need YOU to be a part of it and/or help promote it. The drive for 100,000 signatures on the White House Petition to support the National Pain Strategy will be launched then.

The 6 goals of the #ISpeakForPain are:

  1. Increase awareness and education of pain
  2. Give chronic pain patients a way to share their story about how chronic pain affects their lives
  3. Unify advocacy efforts of people living with pain to reduce stigma associated with chronic pain
  4. 100,000 signatures on the White House Petition supporting the National Pain Strategy (being launched July 13, 2016)
  5. Gather information to present to lawmakers in a portfolio format along with letters from their constituents
  6. Get the National Pain Strategy implemented and funded for more research and improved healthcare for pain

Together, we speak for pain! #ISpeakForPain


Day #1

Activity: Learn about the #ISpeakForPain Campaign!

Take Action!

Day #2

Activity: Learn about the National Pain Strategy

Take Action!

  • Learn even more about the National Pain Strategy
  • Click here to download and share the National Pain Strategy Infographic
  • Click here to sign up for legislative e-alerts on the White House Petition and NPS Congressional Letters

Day #3

Activity: Create your #ISpeakForPain sign and post a selfie on your social channels! Tag the NFMCPA.

Take Action!

  • Click here for examples of signs and photos.
  • Be sure to put #ISpeakForPain in your caption and tag the NFMCPA!
  • Follow the NFMCPA on Twitter.
  • Follow the NFMCPA on Instagram.
  • Follow the NFMCPA on Facebook.

Day #4

Activity: Sign your support on letters to the Senate and the House asking them to support the National Pain Strategy.

Take Action!

  • Click here to read and sign the letter to the Senate.
  • Click here to read and sign the letter to the House.

Day #5

Activity: Prepare for the July 13th #ISpeakForPain Twitter Flare!

Take Action!

  • Click here to for Twitter tips and training.
  • Click here to follow @FibroAndPain and we'll follow you back!
  • Click here to share your Twitter handle in a Facebook comment and follow each other.
  • Click here to join the Twitter Thuderclap.
  • Mark July 13th on your calendar to participate in the #ISpeakForPain Twitter Flare - When we all speak on the same day, our voices are amplified.

Day #6

Activity: Share a video of why you speak for pain with #ISpeakForPain on Facebook, Twitter, Instagram and/or YouTube.

Take Action!

  • Click here to follow the National Fibromyalgia & Chronic Pain Association on YouTube.
  • Click here to see #ISpeakForPain videos.

Day #7

Activity: Get social and speak for pain on Facebook!

Take Action!

  • Take a selfie the the #ISpeakForPain poster and share on social media with #ISpeakForPain
  • Click here to download the #ISpeakForPain Cover Photo
  • Record a video of why you speak for pain on your phone and share on social media with #ISpeakForPain.
  • Click here to submit your video to the NFMCPA. 
    Click here to see the #ISpeakForPain videos you are sharing!

Day #8

Activity: Tell your story!

Take Action!

  • Click here to tell your story to your legislators on yourvoicematters.info
  • Write a blog post about why you speak for pain.
  • Click here to find #ISpeakForPain blog posts and comment.
  • Tweet links to your favorite #ISpeakForPain blog posts

Day #9

Activity: Arts and Crafts Therapy

Take Action!

  • Share your art on social media with #ISpeakForPain - photographs, coloring pages, thread arts, t-shirts, or anything that inspires you.
  • Click here to download the #ISpeakForPain coloring page.
  • Click here to submit your #ISpeakForPain coloring page to the NFMCPA.

Day #10

Activity: #ISpeakForPain Round-Up

Take Action!

  • Click here to review photos, artwork, selfies, stories and posts with #ISpeakForPain. See how many voices made a difference!
  • Mark your calendars for July 13 #ISpeakForPain Twitter Flare to launch the White House petition.

New Survey: Hydrocodone Rescheduling: The First Year

 

surveymonkeyThe NFMCPA survey Hydrocodone Rescheduling: The First 100 Days was pivotal in collecting data to advise about the unintended consequences of the October 6, 2014, change in government regulations. The paper developed from the first survey (First 100 Days) was recently accepted for publication in the Pain Medicine Journal. 7,900 people participated in the first survey. If you have been prescribed hydrocodone during the last two years (October 6, 2013 and before), please consider participating in the second survey, Hydrocodone Rescheduling: The First Year. If you participated in the first survey, we would like to hear more from you regarding the entire first year and how the new regulations have impacted your quality of chronic pain management. If this is your first experience with the hydrocodone questionnaire, please share your experiences to help better gauge the relevance of this regulation during the past year for individuals suffering with fibromyalgia and other chronic pain conditions. The anonymous information collected from this survey will be used to compare the results of the first survey to better evaluate unintended consequences of this regulation. We hope you will participate and share your voice about this important issue that affects so many people with these conditions.

 

https://www.surveymonkey.com/r/hydrocodone1year

Share this link with others, including any veterans, you might know who suffer with fibromyalgia and other chronic pain conditions.

People with fibromyalgia and chronic pain can play an important role as advocates for better diagnosis, treatment, outcomes, and quality of life by getting involved in the Patient-Centered Outcomes Research Institute (PCORI). Created by the Patient Protection and Affordable Care Act, PCORI was established to insure patients’ and caregivers’ voices are included in developing and carrying out research. PCORI’s mission states that it “helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community.”

            Patient centered outcomes research “helps people and their caregivers communicate and make informed health care decisions, allowing their voices to be heard in assessing the value of health care options.” According to PCORI, this kind of research answers questions like, “Given my personal characteristics, conditions and preferences, what should I expect will happen to me?” and “What can I do to improve the outcomes that are most important to me?” 

            When applied to fibromyalgia and chronic pain, this means ‘patients’ with fibromyalgia and chronic pain and their caregivers have an opportunity to set research agendas that address their needs and the things that are important to them. In the patient role, that means letting researchers know what is important to people with fibromyalgia and chronic pain:  What is the patient’s experience, and what do people with fibromyalgia and chronic pain want and need?

            “Patient” with fibromyalgia and chronic pain can get involved in PCORI in several ways. PCORI holds public meetings on different health or research related topics, called workshops and roundtables, that anyone can attend via webinar or teleconference. These are good opportunities to learn and contribute to the discussion. Opportunities for public comments are available at most of these meetings.  Keep in mind that PCORI wants to hear the patient’s voice and experience so the comments can be simple expressions of how you feel or what you think. 

            PCORI also encourages people to suggest topics that it should study and fund for research. For example, did you ever wonder what you can do to improve your sleep as a person who experiences chronic pain? You can go on PCORI’s website under “Get Involved” and suggest that PCORI study which factors can improve the sleep of people with chronic pain. And you can ask 10 of your friends, who can ask 10 of their friends to suggest it, also.

            Another important function for patients is to become a reviewer – someone who reads research proposals and helps decide which one PCORI should fund. While it may seem a bit overwhelming, PCORI provides a lot of training and support for patients to fill this role.  Plus, researchers who submit these proposals must include patients in their research, so as a patient, you are evaluating how the patient’s voice counts in the research. In other words, you are advocating for people like you. If you would like to be a reviewer, you can sign up athttp://www.pcori.org/get-involved/reviewers/prospective-reviewers.

You can learn more about PCORI by watching the video PCORI 101 online athttp://www.pcori.org/assets/articulate_uploads/PCORI_1018/story.html You can sign up for PCROI’s email list at http://www.pcori.org/home/signup so you can stay on top of what PCROI is doing and how you can get involved to advocate for people with fibromyalgia and chronic pain by expressing the patient’s voice.

FBprof teal burgGrab a pair of walking shoes, roll up your sleeves, and meet others who want to make a difference.  It’s time to make fibromyalgia (FM) visible in your community! The NFMCPA has joined forces with passionate Leaders Against Pain and local organizations across the U.S. to launch TOGETHER WALKS in 2016 to raise FM awareness and research funding.  Passionate Leaders Against Pain have already taken the lead for 2016 in Richmond, Portland, Louisville, Central Florida, Coral Springs, and a Virtual Online Walk. Register for a Together Walk near you at crowdrise.com/togetherwalks or learn more at togetherwalks.org.

Your voice matters in changing how fibromyalgia is perceived, treated, and researched.  Simply invite your family, friends, neighbors, colleagues, along with health and elected officials to come stroll, walk, learn, meet others, and support funding for fibromyalgia research at the Together Walks.

Experienced Leaders Against Pain or local representatives partner with the NFMCPA to organize, promote and carry out the details of each Together Walk.  Volunteers  from local FM and chronic pain support groups, together with churches, schools, colleges, and other nonprofit organizations will work together to implement a successful and educational event. Interested in volunteering for a local Together Walk? Visit http://togetherwalks.org/volunteer-now to get involved!

How do you answer a 13-year old’s questions about his hopes for the future after being diagnosed with FM?  What happens in the homes of parents with FM who cannot participate in taking care of their family?  When will better treatments and a cure for this disabling disorder be found?

Through research/innovation seed funding raised at Together Walks, new exploration in areas such as small fiber neuropathy, cervical cord compression, and myofascial release may bring promising new treatments.

The walks will feature live music, health vendor expos and educational and inspirational FM programs. Participants will receive an event t-shirt and educational materials about FM.

TOGETHER WE MAKE A DIFFERENCE!  Come stroll or walk 1K/5K with us! Do what you can, and be creative if you are unable to walk. Together, we can drive awareness, advance research into FM by raising funds, and create a world where people have access to the treatment they need. Your Voice Matters.

Join the fun and help make chronic pain illnesses visible today! Visit crowdrise.com/togetherwalks to register or start a fundraising team. We can’t wait to walk with you!

Can you imagine what can be done together when there is a walk in every state and across the globe?

If you are interested in hosting a Together Walk in 2017, please contact the NFMCPA at This email address is being protected from spambots. You need JavaScript enabled to view it..

cannabis-250With stricter FDA and DEA pain prescription guidelines constantly changing and increasing, more people with chronic pain are left suffering with no adequate answer about what treatments should take the place of opioid medications. Many experienced pain doctors and researchers are taking a hard look at cannabis – marijuana – as a possible adjunct to other treatments. 

Although there have not been a lot of studies on marijuana and its affect on chronic pain, several have been published, including one in the Canadian Medical Association Journal in August, 2010. This study by a group of researchers including Mark Ware, MD, an Assistant Professor of Anesthesia and Family Medicine at McGill University in Montreal revealed that cannabis may help some patients who are struggling with inadequately treated chronic pain. In the study, three puffs marijuana daily helped people with chronic nerve pain due to injury or surgery feel less pain and sleep better. 

Jon Berner, MD, PhD, a psychiatrist and pain specialist in Seattle, had a research poster at the International MYOPAIN meeting titled, “Marijuana Use in Chronic Pain Patients Inversely Correlates with Density of Comorbid Autistic Traits.” In a discussion at the meeting, he expressed an interest in surveying fibromyalgia patients in order to measure the number of people using marijuana for their symptoms and potential interest in medical marijuana as a treatment possibility by others. 

A new survey regarding marijuana as an FM and chronic pain therapy was collaboratively created by Dr. Brener and Rae Marie Gleason, Medical Education & Research Director for the NFMCPA. If you are interested in participating please follow this link to the “Marijuana-Cannabis Survey” on Survey Monkey. No identifying or personal information is collected in this survey.  Your anonymous answers to the survey questions may prompt further interest by FM researchers to study marijuana in the treatment of fibromyalgia and other chronic pain conditions.  Your anonymous answers to the survey questions may prompt further interest by FM researchers to study marijuana in the treatment of fibromyalgia and other chronic pain conditions.

Page 1 of 2

Newsletter

Join our newsletter to stay updated on breaking research, advocacy and relationship news in the FM Community!

captcha 

 
 

Test Subscribe

captcha 
 
 
 
EV SSL