When most people hear "public relations," they automatically think "media relations," or getting a client or event featured in the newspaper, tv or radio. While that is very important to many of us in public relations, it's not the only thing.  Especially given the downsizing of many traditional media outlets. Not only has media placements become that much more challenging, but readership of these media outlets has also significantly decreased.

Now, I'm not saying this as an excuse for not getting a media placement. As PR professionals, we are constantly updating our media lists and connecting with reporters, working to send them stories or pitches that would interest them. The media has played (and continues to play) a very important role in creating awareness of chronic pain illnesses, especially supposedly 'misunderstood' or 'controversial' disorders like fibromyalgia and chronic fatigue syndrome.

Updated and quality media contacts and lists are very important, but it takes time, sometimes a lot of time before you can pique a reporter's interest. And, even then, it's not always guaranteed that you will like what the reporter writes.

Therefore, equally important (and to me, sometimes more important) are your organization's own targeted lists. By "targeted lists" I mean the following (but not limited to):

• everyone on your email distribution lists (members, friends, supporters, anyone who has contacted your organization)
• sponsors, donors
• social media (Facebook fans, Twitter followers, LinkedIn groups)
• Support groups

If you're organizing an event that you know will be of interest or targeted to nurse practitioners, sleep experts, or rheumatologist, etc., then do a search for those groups in your area, find the contact information and create a customized list.

When you send your messages to these targeted groups, you are the one who controls your message. Your message goes directly to people who are specifically interested in your news (via an opt-in option when they sign up for your newsletters.)

It may not be as 'sexy' as being on the front page of the New York Times, but it can be very effective.

        

To jump start your media relations resolutions for 2010, one of the first things to do is to update your media list. Or, for some, create one!

Some tips to create and maintain your database of media contacts:

• Scan your local newspaper for the name of the reporter that covers health issues
• Do an online search of her other articles - familiarize yourself with these  past articles
• Reporters like it when you reference one of their articles - everyone likes to be read!
• Create a spreadsheet on Excel or ACT! (I live by my ACT! database) that includes the reporter's name, telephone, email, blog link, Twitter link, links to past articles. ACT! is also great for being able to make notations, such as date of last contact, and when to follow up as needed
• Newspapers and the rest of the media industry may have downsized drastically in the past year, but don't forget to include bloggers to your database.
• Follow them on Twitter. Many journalists have Twitter accounts where they post news updates. I don't recommend following them on Facebook - that's more for personal contacts and posts.
• Some bloggers I follow also publish weekly e-newsletters. Subscribe to them! One of my favorites is Adrienne Dellwo, a writer for "About.com: Fibromyalgia & Chronic Fatigue Syndrome Guide"

        

So, your organization has just been featured in the local newspaper or TV news broadcast. Or, your Letter to the Editor got printed, andemails have been pouring in.

Or...maybe not. At least, not yet.

Another way to get publicity for your organization, while at the same time position yourselves as a leading, front line responder to your cause is by issuing a "statement."

A statement outlines your organization's position or opinion on a particular issue. Usually, the statement is in reaction to a current news event or topic that is relevant to your own cause or issue. Many chronic pain organizations take the opportunity to issue a statement when a celebrity or high profile individual is suddenly diagnosed with a life-threatening or chronic pain illness, or involved in a social issue that is also relevant to that organization's own cause.

Take for example the statement issued recently from P.A.N.D.O.R.A.  and the Lanford Foundation-Lifelyme about the documentary film "Under Our Skin" which made the Oscars short list for "Best Documentary Feature."  Although neither organization was involved in producing the film, its subject matter relates very closely to their own respective causes.

Click on the image to read the full statement issued by P.A.N.D.O.R.A. and Lanford Foundation-Lifelyme.

        

I received this tweet from @cinderkeys in early November  (Eons ago in Twitter time! My apologies for the late response.)

"@fibropr101 Any advice on how to get media to dig deeper when psychiatrists make bogus claims about #MECFS or fibro being psychosomatic?"

While she didn't reference any particular news item or broadcast, I'll take a guess that @cinderkeys is most likely referring to claims that many people with fibromyalgia and/or Chronic Fatigue Syndrome are often told their illness or symptoms are "all in your heads," a psychosomatic condition, not a physical one, and therefore treatable by psychiatrists or psychologists. Many FM and CFS patients say they feel dismissed and very misunderstood when they are referred by their physicians to the mental health professionals.

A recent article on Chronic Fatigue Syndrome published in Pyschology Today ("Awakening to the Reality of Chronic Fatigue Syndrome" drew a lot of irate reader comments, just by the very fact that the article was in this publication.

So, going back to the question: how can we get media to dig deeper about 'bogus claims' on these chronic pain illnesses being psychosomatic?

Here are two ways:

1. Give the reporter science-based evidence to the contrary
2. Give the reporter a peer-to-peer response. In other words, an opposing response from one psychiatrist (or other medical professional0 to another might prove more credible to the reporter.

To expand on #1, look at the reader comments to the above article. Many of the responses talked about the newest scientific evidence on CFS, including this post from Carlos Rodriguez:

"I can´t hardly believe that anyone can post an article of CFS todaywithout even mentioning the brand new research published in ScienceMagazine last October were they already conclude that a new humanpathogen, the XMRV retrovirus, is present in most of CFS patients inthe study, while only in 3,7% of healthy population. This alreadyimplies a main role of this retrovirus in CFS patients. There are only3 human pathogen retroviruses known so far: HIV, Leukemia and now XMRV,also linked to prostate cancer.
This is already reason enough to leave psychology or psychiatry out of the treatments of this illness."

For #2, if there is a medical professional on your organization's board of directors, ask her to write a response or letter to the reporter. There are also many other medical professionals out there who are very knowledgeable about FM and CFS, and understand the issues of their patients. Cite their works to the reporter. Offer them as a "future resource" for other related stories on the subject. It might take a long while for a follow-up article, but the wait will be worth it.

Thanks for bringing up this important topic, @cinderkeys!

        

"In the early 1990s, Bob Deering of Scripps Ranch worked as a shipwright.

One day, while building a deck for a client at their residence,Deering was informed that if he had any questions, the man of the housewould be coming home to nap that afternoon: he had chronic fatiguesyndrome.

“I made disparaging remarks in my own head,” Deering said. “Chronic fatigue. Right. He’s just lazy.”

Little did he know, however, that it would be a day he wouldn’t soon forget.

“That image popped up again 10 years later when I was diagnosed with CFS,” he said."

****

Do you want to keep reading? Most of us probably would, because most of us like personal 'stories,' or what the media calls "human interest." What happened next to Bob Deering? What happened to his life?

This is an excerpt from an article that appeared November 14, 2009 in the San Diego News Network, "Chronic Fatigue patients fight 'lazy' label, support awareness.

        

The November 13 print edition of the New York Times ran an article on chronic fatigue syndrome: "A Big Splash from an Upstart Medical Center," by Denise Grady. (It first appeared online on 11/12.). It was a very positive article for the CFS patient community, citing a medical study that "pointed to a physical cause for an illness that the medical establishment had often snidely dismissed as psychosomatic." Truly, a breakthrough for the millions of people with this illness who have been told "it's all in your head." The fact that it was the New York Times, one of the world's most prestigious media outlets, also carries much weight in establishing the story's legitimacy and content itself.

But, the story itself is only a beginning.

One of the main things we'll be doing with "FibroPR 101" is learning how to work with the media and getting your patient stories published or on the air. But, what you say and do after the story has run can be just as important.

A Letter to the Editor is one of those powerful tools when working with the media. The benefits of writing a Letter to the Editor include:

• Letters to the Editor can bring further recognition for your cause and organization when your letter is published;
  
• Letters to the editor are great advocacy tools - you are showing the public, your community and members that you are well informed on the issues that affect their health and lives, especially if you are writing to correct information in the article.
  
• Editors and reporters love getting responses to their stories. Especially in this age of media cutbacks, they like knowning someone is actually reading their stuff!

Tips on writing Letters to the Editor:

Be sure to include your name, title and organization name.

• Fax the letter using your organization's letterhead, or email your letter from your organization's email and website address. By providing legitimate, accurate contact information, you are also offering yourself as a resource for future related stories.
  
• Make your letter short and to the point.
  
• Read the paper's submission guidelines, including word count and to whom the letter should be sent.
  
• Most important of all, submit your letter immediately after the article has been published - no later than a day or two. It's cold and old news to the editors after that. An exception might be the weekly publications.

        

I was recently a guest on PRWorks Radio Show  talking about the NFA's Facebook campaign to get10,000 fans. It was a lot of fun being the one in the 'limelight' for a change,but I much prefer putting my clients there instead!

Click on image to listen to the podcast.

        

Walson Communications recently completed a campaign on Facebook for one of our clients, the National Fibromyalgia Association. We were able to reach the NFA's goal of getting 10,000 fans in less than 3 weeks for the campaign called "10,000 for 10 million."

Jon Lansner of the Orange County Register featured the campaign in his blog, “Social Sunday.”

Here is our complete text of “Best Practices and Lessons Learned”for other nonprofits who wish to connect with their audiences viaFacebook.

1. Select internal Facebook Team, preferably 3-4 staff members who are already familiar with using Facebook.
2. Explain up front what you hope to accomplish when you meet your goals of the campaign
3. Develop timeline for key updates and posts.
4. Place Facebook logo prominently on your home page, and every page on your website.
5. Cross-promote Facebook page in e-newsletters, e-alerts, brochures,with key support group leaders nationwide, and send announcements ofyour campaign to media contacts
6. Don’t ask fans for anything except for them to share their stories – this creates a “voice” for their community
7. Mix it up: don’t just post articles from your website. Some days we posted links to podcasts, YouTube videos and news articles;
8. Be Personal. One day we posted an informal video of the presidentof the NFA with a message specifically addressing the campaign andthanking the Facebook fans. Another day, we posted photos and bio’s ofstaff members.
9. Posts keep the communication going: make them new and interesting to the fans.
10. Answer the questions that are directed to your organization; point them to your website, if they need additional information.

Lessons Learned:

One of the biggest learning curves of managing a Facebook Fans pageis not just knowing WHAT to post, but WHEN and HOW MANY. Some fanspages send out one post a day, others two to five posts a day, everyfew days or even longer. Fan “reaction” can vary with each frequency.There’s no hard and fast rule on this.

The NFA made 1 to 3 posts per day, spaced evenly throughout the day.Gauge your fans. Gauge the “mood” of the page, then post (or don’tpost) accordingly.

Another lesson the team learned by being fans of other pages ison’t keep reminding your fans to help you get more fans. The pages whodo this come across as whiny, needy, ungrateful and, well, annoying.Post good content, and they will come!

Remember, the page really belongs to the fans, not just to your organization.

        

[NOTE: Walson Communications was the agency of record for the NFA's "10,000 for 10 million" campaign.]

National Fibromyalgia Association reaches goal of 10,000 Facebook Fans in record time

ANAHEIM, Calif.(Aug. 24, 2009) – It began as the NationalFibromyalgia Association’s (NFA) first major social media campaign: get10,000 ‘fans’ on its Facebook page by October 1, 2009 to help raiseawareness on behalf of the estimated 10 million people withfibromyalgia and to inform the public about the NFA-the largest U.S.nonprofit organization serving people with fibromyalgia.

Less than four weeks after the launch of its “10,000 for 10 million”campaign, the NFA not only reached its goal-well over a month ahead ofits deadline-but its fans page became one of the few online and offlineplaces where many people with fibromyalgia are finding support for andunderstanding of their often debilitating, chronic pain disorder.

As one of the first “fans” put it: Finally, a place where we all cancome together and share and help one another. What a blessing this willbe.”

For the complete press release, go to: http://www.fmaware.org

        

The day that Phyllis Talarico was interviewed for a TV news segment on fibromyalgia, she told me that she wasn't feeling very well. In fact, the 62 year-old mother and grandmother who was diagnosed with fibromyalgia in the early 1990s was in quite a bit of pain that morning.

As I watched the camera man set up his numerous pieces of video equipment in Phyllis's living room, I asked her if she still wanted to do the interview. I knew this story was probably going to be picked up by news stations around the country, but the first and foremost concern for me--and for any PR professional in this situation, I hope---is for the well being of the patient.

But, Phyllis, like many FM patients I've met over the years, was very passionate about raising awareness about this illness. She was just afraid that she "wouldn't do well" on camera and not be the kind of representative for the National Fibromyalgia Association and the fibromyalgia cause that she wanted to be.

Having known Phyllis for a few years now, I knew she wouldn't have this problem.

And, I told her, if it's any consolation, most of these TV interviews are taped, not live. That means you don't have to be perfect the first, second or even third takes. But, you do have very little time to make the kind of impression you want to make. Meaning, you want to come across as sincere because you want viewers to believe you. If they believe you, then chances are they will like you and remember your message.

"It's ok, Phyllis," I told her.  "This is what fibromylagia is and does to a person, and this is what people need to see. Tell them how you feel. Tell them what it's like. Just be yourself."

And Phyllis did just that.

Her taped story, along with interviews of NFA president, Lynne Matallana and Dr. Patrick Wood, has been aired numerous times around the country these past few weeks.

Fibromyalgia is real. And, so are people like Phyllis.

Interview with Phyllis Talarico, Lynne Matallana and Dr. Patrick Wood