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Category: Media & Social Media Advocacy

Your voice matters, and you can make a difference!

On July 13th, the White House Petition to implement and fund the National Pain Strategy (NPS) was mass-shared on Twitter, Facebook and Tumblr by supporters at a specific time via Thunderclap, so it rose above the noise of social networks. White House Petitions are only open for 30 days and must receive 100,000 signatures to gain the attention of the United States President with a request to respond. Sign the White House Petition today and invite others to support the White House Petition by sharing this link widely with your friends, family, and co-workers. We need your help to gather 100,000 signatures on the White House Petition by August 12. Learn more...

Sign the White House Petition!

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 policy decisions and new areas of research. 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. 

Send your letters to Members of Congress

The NFMCPA launched the #ISpeakForPain campaign with simple, free ways YOU can be heard over 10 days. Learn how to effectively advocate for yourself and other chronic pain patients in incredibly easy, accessible ways.  Make sure to use #ISpeakForPain in all of your social media posts.

The 2 goals of the #ISpeakForPain are:

1. Ask people affected by chronic pain to share their story in letters to their U.S. Senators and Representatives.
   
2. 100,000 signatures on the White House Petition supporting the National Pain Strategy

Together, we speak for pain! #ISpeakForPain

Day #1

Activity: Learn about the #ISpeakForPain Campaign!

Take Action!

• Watch the #ISpeakForPain campaign video.

• Learn more about the National Pain Strategy
• Sign up for e-alerts on the White House Petition and NPS Congressional Letters

Day #2

Activity: Learn about the National Pain Strategy

Take Action!

• Learn even more about the Naitonal Pain Strategy
• Download and share the National Pain Strategy Infographic

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!

• Follow @FibroAndPain and we'll follow you back!
• Participate in the #ISpeakForPain Thunderclap on July 13th for the White House Petition Launch!  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.
• Watch #ISpeakForPain videos.

Day #7

Activity: Get social and speak for pain on Facebook!

Take Action!

• Take a selfie and share on social media with #ISpeakForPain
• Set your selfie as your profile photo! 
• Record a video of why you speak for pain on your phone and share on social media with #ISpeakForPain.

Day #8

Activity: Tell your story!

Take Action!

• Tell your story to your legislators on yourvoicematters.info
• Write a blog post about why you speak for pain.
• 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.
• Download the #ISpeakForPain coloring page.

Day #10

Activity: #ISpeakForPain Round-Up

Take Action!

• Review photos, artwork, selfies, stories and posts with #ISpeakForPain. See how many voices made a difference!
• Join the July 13 #ISpeakForPain Thunderclap to launch the White House petition.

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Category: Media & Social Media Advocacy

Social media is a broad term used to describe Internet-based communication that allows users to publish information, thoughts, and ideas on the Internet with the intention of engaging other users in conversation. Companies, politicians, and your neighbors are using social media to connect in the online world to form relationships for personal and business purposes.

Social media is distinct from the traditional types of media, such as newspaper, television and radio, in that anyone can publish material. Social media has the ability to reach a very targeted audience (e.g., “hyper-local”) who are interested in the topic being discussed, and information can be posted or modified immediately. Because of the nature of social media, keep in mind that, unlike traditional media outlets, editors are usually not overseeing accuracy or content. Blogs are a common form of social media, where you can read, write, or edit a shared online journal. Several people with pain have found blogging about their experience to be a powerful outlet, and their readers have found inspiration, hope and current information. You can also share your blog link with media. When developing stories, reporters read information from all sources, including blogs. Why not serve as a source?

Consider reaching out to writers (bloggers) in the social media space with your pain advocacy efforts and joining online discussions. Favorite bloggers can be followed through sites like Tumblr.
Lastly, keep in mind boundaries and professionalism when engaging in social media.  If you are associated with a professional or consumer advocacy organization, check to see if they have developed social media guidelines or rules of engagement. 

Privacy Settings. Be sure to check, set and understand what these mean for ALL of the social media tools that you use.

Facebook:

Facebook has taken the Social Media world by storm. With approximately 1.4 billion active users, it can be a great place to share your story with many people. A wide majority of organizations and businesses use Facebook as a way to connect with their audience and promote their services. Here are some great ways you can share your story on Facebook:

• Write a compelling status sharing the key message of your story. Strive to keep it brief, or it may get overlooked.
• Share a photo that captures the message you want to share. Include a brief caption to bring the photo full circle.
• Post a video on Facebook of yourself sharing your story. Once again, briefness is key. Aim to keep the video under 5 minutes.

The Humans of New York Facebook page is a great example to look at for ideas on how you can share your story, and keep it compelling.

Also check out the NFMCPA Facebook page.

Instagram:

Instagram is begining to take off in the advocacy world. Several brands and organizations are forming Instagram accounts to help personify what they do. A great example of an organization on Instagram is the American Cancer Society. Sharing a photo on your Instagram account that captures your message, along with a compelling caption, is a great way to share your story. You can also post a 15-second video clip in an effort to spread your message.

Twitter:

Twitter is one of the largest used social networks. Users post updates (tweets) throughout the day that are limited to 140 characters. Tweets can link to different websites, include photos, or even videos. A great example of a successful advocate on Twitter is Senator Cory Booker of New Jersey. Keep your tweets personal, and to the point, to capture the attention of others. Use of hashtags (#) is also helpful. Hashtags are Twitter's way of categorizing subject content of tweets. You can reach people who are interested in fibromyalgia or chronic pain by including terms such as #fibromyalgia or #chronic pain in your tweet. See the NFMCPA's twitter account for examples. Consider seeking out or including hashtags as you become more engaged with Twitter.

Instagram and Facebook also implement the use of hashtags.

YouTube:

One of the best ways to share your story is through video. Keeping your video under 10 minutes will help promote more viewers. A great example of a shared story through Youtube is by Brook Shaden of Promoting Passion. Click here to view her story on fibromyalgia awareness. Your YouTube video can be shared on each of the aforementioned social media sites to help further the reach.

Blog:

Blogging is a great way to share your story. Some common blogging platforms are Blogger and Wordpress. These plattforms give you the chance to tell your story without having to be overly brief. Many bloggers like to break up their stories into several different parts. This strategy helps encourage more readers. A great example of a fibromyalgia blogger is Leader Against Pain Melissa Swanson. Click here to view her blog, "Fibro Warriors ~ Living Life."

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Category: Media & Social Media Advocacy

Advocates are often dismayed to find unbalanced or inaccurate reports that reinforce negative stereotypes about people with pain. Reaching out to reporters with your perspective can be a powerful way to advocate for yourself and others in pain.

• Proactive vs. reactive. Depending upon your situation, you may be engaging in either proactive or reactive media relations. If reporters in your area are familiar with you as a medical expert or patient advocate, they may contact you ahead of time to comment on a story (reactive). When you are reaching out to media in an attempt to get your story covered, this is called proactive media relations. Whether you are proactively approaching the media or reacting to questions, preparation is essential for an effective media relations effort. Take the time to get your information together.
• Know your media. Visit the newspaper, radio or television station’s website to see who is covering health topics. E-mail addresses and phone numbers are often listed at the end of articles or in the “contact us” section. Make sure that you read articles or view television segments that the reporter has worked on recently. If you are a health care professional, you can position yourself as a medical resource to reporters who are developing stories on pain management. If you are a person with pain or a caregiver advocate, you can work with reporters to tell your individual story. Most reporters prefer e-mail. In-person visits are not recommended.
• Know your media format. Are you reaching out to print, radio, television, or digital media reporters?  Think about how these formats differ. You will have a better chance of successfully placing a television story if you can utilize a great visual and team up with a patient or health care professional to provide a more emotional interview.
• Develop your “pitch.” When you reach out to a reporter proactively, it is important to have your “pitch,” or story, thought through. Most news reporters develop stories structured as an “inverted pyramid.” This means that the news is delivered in the first section of the story, followed by the supporting details. This makes an editor’s job easier, since often the smaller details can be cut off the end of a story without affecting the core of the article. Keep this in mind when you are contacting the media – deliver your key messages up front, and be prepared to offer supporting details.
• Keep a media log. To avoid missing an important media opportunity, whenever you contact a reporter (and whenever they call back), you should keep good notes. Remember to call journalists back to maintain rapport after they have covered their first story on your message. It is much easier to re-sell a new “angle,” or aspect, of your story to such reporters than to start a whole new media relationship from scratch.
• Be respectful of deadlines. These differ depending on the news outlet. For instance, most daily newspapers’ deadlines are around 4:00 p.m. each day – clearly, this is not the optimal time to reach out to these reporters. Do not call during broadcast time. If the news in your area airs 6:00 a.m., 12:00 noon and 6:00 p.m., do not call at that time. Also do not call one hour before and after the newscast. Before a newscast, the producer is preparing for the upcoming news program and one hour after the newscast, production meetings are convened to have members of the staff discuss what went right and/or wrong during the newscast. Ask your contacts when is the best time to call. Deadlines for television news programs vary according to the time of the show. If a reporter contacts you for a reaction, make sure to ask what the deadline is so that you can determine if you have enough time to assess the material that you’re being asked to comment on.
• Build your credibility. Reporters seek out resources that are accessible, quotable, and provide accurate information. Your status as a health care professional or a pain management advocate provides you with the perspective of an authority on health topics – pain management in particular – from either the professional or personal angle.