I was thrilled to get the opportunity to meet Lynne Matallana, founder of the NFA. We share a passion to support, educate, and raise Fibromyalgia awareness. I have looked to her example many times over the course of the last several months since beginning my blog and support group. Meeting her in person did not disappoint, and only fueled my desire to make a difference in our community as she has.

Dr. Andrew Blumenfeld of The Neurology Center was the featured speaker. He focused on Fibromyalgia as a disease of the central nervous system and gave an exceptional presentation. He faced a hungry audience with the grace of a man confident in his understanding of our complicated disease – and he does classify Fibromyalgia as a disease – not a syndrome, disorder, condition,.etc. In his estimation, a medical condition that produces disability is a disease. Then Fibromyalgia most certainly is a disease.

I have long been convinced that Fibromyalgia is a neurological disorder, and the newest research supports that it is. I asked Dr. Blumenfeld if there would eventually be some form of brain imaging test for a definitive diagnosis of Fibromyalgia, and he believes there will be. In fact the main reason he gave for there not being one currently is the cost involved. It is encouraging to know that one day – maybe soon – there will be a direct route to a diagnosis, not the “process of elimination” route we all had to take to get our diagnosis.

The evening was a great success. I received so many comments of appreciation from the audience. It reinforced my belief that we do not take our diagnosis in stride; that we are all looking for answers; that we want to feel supported and understood; and that we want to be well. I appreciate the NFA asking me to take part in their Fibro Focus series and am very excited to be able to share with you the information on the next six Fibro Focus events scheduled around the country.

Fibro Focus Colorado

Date: September 19, 2009, 5:00PM.

Contact: Lannette Johnson, lannette@colofibro.org, 303.847.3421

Location: Pinaacle Events Center, 1001 W 84th Ave, Federal Heights, CO

Fibro Focus Illinois

Date: September 22, 2009, 7:00PM

Contact: Diane, dabulls@gmail.com, 847.895.9596

Location: Schaumburg Township Building, 1 Illinois Blvd., Hoffman Estates (Chicago), IL

Fibro Focus New York

Date: October, 1 2009, 6:30PM

Contact: Kathy Zabliski, kzabliski@verizon.net, 315.946.4498

Location: Thompson Hospital Simulator Room, 350 Parrish St., Canadaigua, NY

Fibro Focus Pennsylvania

Date: October 6, 2009, 7:00PM

Contact: Tennille Morrow, paws_rule@comcast.net

Location: Lancaster General Health Campus, 3rd Floor Conference Room, 2100 Harrisburg Pike, Lancaster, PA

Fibro Focus North Carolina

Date: October 19, 2009 – time TBD

Contact: Cathy McCarthy, Triangle Positive Energy Fibromyalgia Group, csuspect@mindspring.com, 919.489.5316

Location: Triangle Region, North Carolina

Fibro Focus Michigan

Date: November 12, 2009, 1:00PM

Contact: Ruthann Bruce, arubobb@wideopenwest.com, 734.981.2519

Location: Merriman Rd Baptist Church, 2055 Merriman Rd., Garden City, MI

Are any of these events near you? I hope so. It will be well worth the investment of your time to attend. You will be amongst friends, find people who understand, and learn from a Fibromyalgia literate doctor from your community.

I would like to give special thanks to Megan at the NFA for all her behind the scene organizing of the event, and for the photos you see above. And also to Pfizer’s marketing team, Liz and Katie from Weiss Comm, for all the hard work they did. It was a joy working with all of you. Best of luck on your future Fibro Focus events.

Today I want to share with you this very important video of a presentation Lynne gave in 2007 at a patients conference. It is important to note that she is speaking to patients here. This is not an intro to Fibromyalgia. She is speaking to her peers, to all of us.

The video is an hour in length, so keep that in mind when you prepare to view it, but please do watch it. It will give you comfort to know that the most recognizable Fibromyalgia leader understands and is actively working to better our lives and provide us hope for our future.

Here are some highlights Lynne covers in the presentation:

• We are all different
• You can get better
• There is no magic bullet
• What you are experiencing is real
• You can take back control of your life
• Listen to your intuition
• Give yourself permission to take care of you
• You are a person first, a patient second
• This is our journey

On this journey you are going to learn not only the things that are going to help make you feel better, but maybe even help make you a better person. I think I am much more compassionate. I think I am much more sensitive. I think I am much more aware. Lynne Matallana

videoplay?docid=6512742079926657347#

In my previous posts I listed the main social networking sites (part 1) and group forums (part 2) available if you are looking to join an online community for support, encouragement, camaraderie, or just to have a place to vent. My inspiration for putting these posts together is to help alleviate the potential for isolation if you are living with Fibromyalgia or most any chronic illness. For this post I am going to focus on general resources available, like blogs and websites. Again, this is just a partial list of what is out there, so feel free to leave recommendations in the comments if you know of a forum or support group I did not cover.

Blogs

If you are reading this post then you are clearly already a reader of blogs and quite possibly have several you read and may even maintain one of your own. Blogs are a great way to share information and ideas. Fibromyalgia Haven has become my favorite place to go everyday. I have the chance to express myself here like I can nowhere else. My mental and emotional outlook is vastly improved since I began writing here, and I am constantly researching for new things to write about and share so my knowledge and understanding of Fibromyalgia has increased tremendously. I am proud to call myself a blogger!

I could not begin to list the multitude of Fibromyalgia blogs out there. I think I find a new one each day. But I will list several great sites which contain blog directories and make it easier for you to search a specific blog category. Here are links to the ones I am most familiar with followed by a description taken from their own site:

Alltop – Alltop is an “online magazine rack” of popular topics. We update the stories every hour. Pick a topic by searching, news category, or name, and we’ll deliver it to you 24 x 7. All the topics, all the time.  (P.S. – Have you noticed my Alltop “best of the best” badge I proudly display on my sidebar? Cool, huh!)

Blog Catalog – BlogCatalog is more than just a social community for bloggers; we are one of the largest blog directories on the internet. Whether you are looking to search blogs, connect with bloggers, learn more about blogging, or promote your own blog, BlogCatalog is for you.

BlogHer – The community for women who blog.

Bloglines – We track your favorite news, blogs, weather, and classifieds so that you don’t have to.

Delicious – The tastiest bookmarks on the web.

Digg – Digg is a place for people to discover and share content from anywhere on the web.

Google Blog Search – (Google needs no description.)

Networked Blogs – Blogs are social networks. Are you networked yet?

WordPress Blogs – Just Another WordPress Weblog

Yahoo 360 – A place that’s all about you to share with friends and family.

General Resources for Education and Information

Many of these sites have monthly newsletters you can sign up to have their top news e-mailed directly to you. It is a great way to stay on top of current events and news in the ever-changing Fibromyalgia community. 

National Fibromyalgia Association -The National Fibromyalgia Association is a 501(c) 3 nonprofit organization whose mission is: To develop and execute programs dedicated to improving the quality of life for people with fibromyalgia.

Fibromyalgia Network – We’ll keep you current on fibromyalgia treatments, coping tips, and research to enrich your life.

Fibro Center – A community of education, support, and understanding for people with Fibromyalgia. (I hesitated to list this site as it is sponsored by Pfizer, but if even one person finds it useful then it is worth putting my personal bias against Lyrica aside.)

Fibro and Fatigue Centers – Whether you have been diagnosed or misdiagnosed, whether you have been searching for years to get your life back to “normal” or you are just starting to feel it slip away – there is help and hope!

Fibro 360 – A community of Hope and Understanding for People suffering from Fibromyalgia

FibroTalk – Online Community Support

We Are Fibro – The Social Support Network for those Living with Fibromyalgia

Please feel free to add your blog or favorite site in the comments.

27/30

 

To the AP editors:

The recent Associated Press story on fibromyalgia hardly qualifies as news; it merely regurgitates the same arguments that have been published in the past and offers the opinions of the same two men who have built careers out of drawing attention away from the hundreds of scientists who continue to make amazing scientific strides toward understanding the underlying cause(s) and pathophysiology of what fibromyalgia patients experience. By perpetuating this message, the article implies that it is more acceptable to debate names or labels for this “set of symptoms” and to point fingers at the usual “villains” (i.e.: pharma and the nonprofits who accept money from them), than to focus on the millions of desperate, patients who deserve to have a voice in the discussion. The fact is that credible medical institutions and organizations recognize fibromyalgia as a life-altering disease; the fact is that patients who suffer with FM depend on the medical system (including pharmaceutical companies) to help them inform the public that this is a very real illness and that they need treatments, including pharmaceutical agents, to help them get through each day—and to look forward to some sort of quality of life in the future.

This article misinforms readers in a way that undermines and victimizes innocent people. By telling only selective parts of the story the author is perpetuating misperceptions and making it difficult, if not impossible, for readers to grasp what is truly important: that we need to stop debating and pointing fingers and start asking why it is perceived as acceptable to stigmatize a patient population just because medical research hasn’t yet provided us with all the information needed to understand that particular illness. Every illness seems to go through a stage of having to prove its legitimacy, but why should the patients be suspect during that phase of research?

Why would AP print information that is simply not true—i.e.: people with fibromyalgia are “more likely to have a history of mental illness and are economically disadvantaged?” That is totally false, as is the writer’s statement that the National Fibromyalgia Research Association received pharma money to fund Dr. Clauw’s functional MRI study. The money for all of the NFRA’s funded research came from the founder (the husband of a fibromyalgia patient), general donations, and revenue generated from a nonprofit bingo game. (Yes, the FM community has had to rely on bingo games to fund our research!)

How can we allow the system to fail millions of people whose only “fault” is to have developed a devastating illness? Along with the rest of the fibromyalgia patient community, I look forward to the day when society (including the medical community, the media, and our government agencies) accepts the responsibility of treating fibromyalgia patients like any other group of chronically ill patients; when it is a given that fibromyalgia will be further studied, that treatments will be developed and made accessible to patients, that the media presents the facts rather than perpetuating threadbare controversies.

Now that would be news worth printing.

Sincerely,

Lynne Matallana
President, National Fibromyalgia Association

 

For more information on The National Fibromyalgia Association and President Lynne Matallana please visit the NFA website.

In January of this year they began a campaign called Pledge to Care. The Pledge to Care is a way for family members, friends, and healthcare providers to show their support to persons with Fibromyalgia by making a simple pledge.

“Fibromyalgia is a chronic pain  disorder that affects 6 to 10 million Americans, however recent health care reform legislation and biased attitudes towards people with fibromyalgia, continue to prevent them from receiving adequate and appropriate access to medical care,” said Lynne Matallana, president and founder of the National Fibromyalgia Association. “Family members and other caregivers play an important role in the treatment of the person with fibromyalgia, yet many are still not well informed or know how best to care for their loved one. The ‘Fibromyalgia Pledge to Care’ is designed to help raise awareness for fibromyalgia, and provide a tool which will encourage others to join us in our national efforts to insure fibromyalgia patients access to better medical care.”

 

By going to NFA’s website and filling out a simple form, you can join a long list of family members and friends who have already made this pledge. Fibromyalgia is still known as “the invisible illness.”  It is invisible not just because it does not show up on an x-ray or blood test, but it is invisible because it is easy to dismiss or ignore what is not understood. The NFA has made it their mission to develop and execute programs to educate and inform, because with understanding comes compassion, and with compassion there can be progress.

I hope you will all go to the NFA website and complete the Pledge to Care form in support of someone you love who suffers from Fibromyalgia. If it is you that suffers from Fibromyalgia, take the time to direct someone you love to the NFA site and ask them to make this pledge for you. It could be a good step towards educating them about Fibromyalgia and the very real challenges you face every day.

For my family and friends, I would appreciate very much if you took the time to make a pledge for me.  I am very lucky to have such a loving and compassionate support system, but I know that I too could do more to help you understand the realities of Fibromyalgia.  This blog has been a big step for me in that direction.  Now I am taking it a little further and asking you to make a Pledge to Care. If you do make a pledge I would love if you came back here and posted a comment to let me know, or send me an e-mail if you prefer.  Thank you!

UPDATE:

Coincidence! On the same day I wrote a post about The National Fibromyalgia Association, my friend over at The Girl From the Ghetto did the same. Great minds! Check out her comment and then click the link to read her post.

thegirlfromtheghetto

You have got to read my latest post. You can shop @ amazon.com & This organization gets 15% of your sales!!! Feel free to borrow my post and put it here on your site.

http://thegirlfromtheghetto.wordpress.com/2008/12/11/going-to-online-shop-you-can-give-the-national-fibromyalgia-association-15-of-your-sales/