New ME/CFS Awareness Video…Please Watch

ME/CFS & Fibromyalgia International Awareness Day – How It All Began

May 12th was designated as ME/CFS & Fibromyalgia International Awareness day back in 1993, 16 years ago today.  The particular date of May 12th was chosen to honor the birthdate of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Florence Nightingale became chronically ill in her mid-thirties with an illness like ME/CFS (and who knows – maybe it was!) and she spent the remainder of her life (over 50 years) practically bedridden.

Even though Florence was suffering from a debilitating illness, she still managed to become the founder of the world’s first School of Nursing. Since then much has happened in the way of progress to help the millions of ME/CFS and Fibromyalgia sufferers, but there is still much more that needs to be done.

ME/CFS & Fibromyalgia Awareness Day activities are designed to increase public awareness of ME/CFS and Fibromyalgia, as well as to assist patients and organizations in educating the general public, healthcare professionals, government officials, and legislative bodies.

Cort Johnson from Phoenix Rising added the following comment on ME/CFS & Fibromyalgia Awareness Day & how it all began…

I would note that Tom Hennessey – a very articulate advocate and former advertising executive and the leader of RESCIND – was responsible for coming up with that day. Unfortunately Tom has been disabled for the 15 years with a horrendous case of ME/CFS. It’s so sad how little progress we’ve made in this disease.

CFS State of the Union Podcast

Dr. Jacob Teitelbaum, well-known for his work with ME/CFS & FM patients and author of From Fatigued to Fantastic, will be featuring a podcast tomorrow for National CFS Awareness Day.  In Dr. Teitelbaum’s “CFS State of the Union Podcast”, he will be discussing all of the latest news and medical developments in ME/CFS. 

There are two parts to Dr. Teitelbaum’s podcast that you will be able to view tomorrow, May 12th.  There is a Powerpoint slide presentation that you will be able to download and you can listen to Dr. T. and his “CFS State of the Union Podcast”. 

Here is a rundown of what will be included in Dr. Teitelbaum’s podcast:

• The latest U.S. & global news on ME/CFS & Fibromyalgia.
• Current and future research and findings.
• New treatments.
• CDC CFS Awareness Campaign.
• Offers hope and a positive outlook for ME/CFS sufferers.
• Where to find support groups, help & resources.

To download and listen to Dr. Teitelbaum’s podcast, please visit his End Fatigue website on May 12th.

25 Random Things About CFS (Courtesy of CFIDS Association)

For those of you who belong to Facebook (click HERE to see my page & to become my friend!), you have probably seen or been a part of the widely popular “25 Things About Me” that everyone is doing.  The CFIDS Association President, Kimberly McCleary, saw this as a great opportunity to help raise awareness for ME/CFS & to let others know what we go through.   She has posted the “25 Random Things About CFS” on the CFIDS Association’s Facebook page & she is encouraging ME/CFS sufferers to put this list on their Facebook pages & pass it on to others.   So feel free to print this list out, email it, post it on your blog, and share with your family, friends & co-workers.   If you put it on your Facebook page, make sure you send the list to all of your friends.

25 Random Things About CFS (provided courtesy of the CFIDS Association of America)

1. Don’t be fooled by the name. CFS is more than just being tired at the end of a busy day or week. The impact of the illness has been shown in research studies to be equal to that of cancer, COPD and end-stage AIDS.

2. In addition to severe fatigue that’s not relieved by rest, the 8 “official” symptoms of CFS are unrefreshing sleep, muscle pain, joint pain, headache, sore throat, swollen lymph nodes, cognitive impairment (trouble thinking clearly) and postexertional relapse. You have to have 4 of these 8 symptoms for six months or more to meet the research definition for CFS. There are many other symptoms that are common to CFS. You can find them on our website at www.cfids.org/about-cfids/symptoms.asp.

3. As many as 4 million people in the United States have CFS. Chances are you know one or more of them. They often don’t look sick when they’re out in public, and when they’re not out in public, they’re probably at home recovering from their last trip into the world.

4. Women are more likely to get CFS than men, and adults are more likely to get it than kids. But make no mistake, it affects people of all ages, races and socioeconomic status. It occurs around the world in urban, metropolitan and rural areas. We still don’t have a complete answer as to why.

5. While there is no simple diagnostic test, CFS can be diagnosed and treated. It takes some persistence on the part of the patient and the clinician, because other causes have to be ruled out, but it’s quite possible to do. If you get diagnosed and your doctor tells you, “I think you have CFS and that means there’s nothing I can do for you,” it’s time to find another doctor.

6. Managing the symptoms of CFS—usually beginning with treating sleep problems and pain—requires partnership with a health care professional. It takes some trial and error to find the combination of medications, supportive therapies and lifestyle adjustments to improve function and quality of life.

7. The most profound and often best way to distinguish CFS from other conditions with similar symptoms is what’s known as “postexertional relapse” or “postexertional malaise.” This refers to a return of all symptoms after even minimal physical or mental exertion. Helping a child with homework, making a trip to the post office, preparing a simple dinner for the family are all things that can send CFS patients back to bed for hours, days or even weeks. This is often a huge contrast to their pre-illness capacity for activity.

8. If you haven’t done so already, I highly recommend you read Laura Hillenbrand’s moving personal account of CFS that was published in the New Yorker on July 7, 2003, “A Sudden Illness.” We won’t run afoul of copyright laws by posting it here, but it’s pretty easy to find online using any web-wide search engine.

9. The CFIDS Association of America was established in 1987. Since then it has grown to be the largest and most active organization dedicated to conquering CFS. Learn about the Association’s work at www. cfids.org.

10. There are a lot of smart, dedicated people working to make progress in the understanding of CFS. I’m fortunate to work with hundreds of them through the CFIDS Association. There are also caring people working in lots of sectors, including government, who want to help. The Association helps facilitate those efforts too.

11. CFS is complex. It has defied complete explanation for more than 20 years since it was first defined. It will likely take a multidisciplinary group of researchers, using cutting edge technologies and techniques to unlock its cause, treatment and cure. But I believe it can be done.

12. One of the worst aspects of CFS doesn’t show up on any list of symptoms or reports of research findings. It’s the isolation that’s a consequence of having a chronic illness that no one fully understands yet. Having to alter plans for the future, adjust your aspirations and set vastly different expectations is a constant challenge to patients and their family members.

13. There are nearly 5,000 articles in the peer-reviewed medical literature about CFS. Every body system studied has revealed subtle abnormalities, although not every defect is present in every patient. As CFS science advances, critical insight is likely to emerge. It reminds me of a point in the history of MS in the 1970s, when it was called “hysterical paralysis,” just before MRI technology detected demyelination of the spinal cord.

14. If you want a quick synopsis of the 10 most important research findings about CFS, read Harvard Medical School expert Dr. Anthony Komaroff’s summary at www.cfids.org/about/10-discoveries.pdf. You might recognize Dr. Komaroff’s name; in addition to other distinctions, he’s a regular contributing editor to Newsweek.

15. If you don’t have any idea what it feels like to have CFS, think of the worst flu you’ve ever had. Think about feeling that bad every day. Every day for a month. Every month for a year and so on. The average duration of illness is 10 years, but recovery is tough to define and most people report lifelong limitations of some degree.

16. Oprah has given CFS some attention by including it in a show about “hard to diagnose conditions.” Wilhelmina Jenkins and her daughter, Kamilah, were guests on the show and shared their experience as patients. That was in June 1998. Wilhelmina is still recovering from that trip to Chicago.

17. The New York Times has validated CFS too. Times writer David Tuller wrote an article about CFS on July 18, 2007, that quite dramatically changed how CFS is treated by other reporters. You can read more about that at www.cfids.org/cfidslink/2007/100301.asp.

18. I would not wish CFS on my worst enemy. I want to see all the people who have CFS return to healthy, productive lives. Our world will be much richer when we have them back to full capacity.

19. There are researchers all over the world who are studying CFS. The Japanese government has taken a serious interest in severe fatigue and supports a very well-organized team of investigators to study it. During a visit to their facility in April 2008, it was breathtaking to see how leadership, coordination and diverse scientific skill sets can create synergy. It’s our model for what we want the Association’s research program to be.

20. There is a United States federal committee for CFS, the DHHS CFS Advisory Committee, that meets twice a year. It gives us a vehicle to engage federal agency representatives and to hold them accountable for what they’re doing (or not doing) in research and education. Although working with the government has its share of frustrating moments, it is an important partner to involve in the effort to conquer CFS.

21. CFS is definitely not the same as depression. Sometimes they occur together, but they are quite different even though some of the symptoms overlap. In CFS, levels of the hormone cortisol are typically lower than normal; in depression they are higher. When you have CFS, you want desperately to get back to the activities of your life. Depressed patients often withdraw from their lives, even if they push themselves to appear normal.

22. CFS costs the United States a lot of money. Every single year, CFS costs the U.S. economy about $25 billion in lost productivity, direct medical expenses, disability payments and other costs. The U.S. government spends about $10 million looking for better diagnostics and treatments. Too bad CFS isn’t a bank or automaker; it would be much easier to make the case for a “CFS stimulus package.”

23. If what you’ve read about CFS sounds like something you, a friend or family member might be dealing with, seek medical care from the professional who knows you best. There are tools to help educate medical professionals about CFS. Check out info about our online Medscape course at www.cfids.org/cfidslink/2009/010704.asp. Take your doctor a copy of the Toolkit for Health Care Professionals at www.cfids.org/sparkcfs/2008/toolkit4.pdf. But start somewhere. The longer you go without appropriate symptomatic care, the longer you risk staying ill.

24. There’s a lot of information about CFS available on the world wide web. Always verify the source of the information and look for two sources that make the same statement. Especially when it comes to treatment, there are a lot of dubious claims made about products that haven’t been adequately evaluated. Take care!

25. There is hope. Research is converging on answers and more scientists and doctors are getting involved in the search for better diagnostics and treatments. We can accelerate the momentum with your engagement and support! Visit www.cfids.org to learn more about CFS and to help conquer this illness.

Thanks for reading my “25 Random Things About CFS.” See the CFIDS Association’s Facebook page or web site to learn more about CFS and the Association’s work. Access this list online at www.cfids.org/cfidslink/2009/040109.pdf.

P.A.N.D.O.R.A – Inspiring Hope Through Awareness

P.A.N.D.O.R.A. is busy this month with awareness activities and last week they released a press release on their upcoming “Walk In My Shoes” Marathon.  P.A.N.D.O.R.A. rasies awareness for illnesses like ME/CFS, Fibromyalgia, Lyme Disease, Gulf War Illness, Environmental Illnesses, & Multiple Chemical Sensitivities.  Please read P.A.N.D.O.R.A.’s press release below and the contact information is included if you would like to donate time or money to the organization. 

FOR IMMEDIATE RELEASE

Contact: Marly Silverman, Founder

April 20, 2009

Cell phone: 954-629-0976 – Volunteer Help Line: 954-783-6771

www.pandoranet.info

P.A.N.D.O.R.A., Inc. to Host First Annual 5K Walk

Fundraiser aims to give supporters a chance to “Walk in the Shoes” of a loved one with Chronic Fatigue Syndrome, Fibromyalgia and other Chronic Pain Illnesses.

CORAL GABLES, Fla.—(April 20, 2009)—For anyone who has ever felt helpless watching a loved one suffering from chronic fatigue syndrome, fibromyalgia, Gulf War illness, multiple chemical sensitivities, environmental illnesses, and chronic Lyme disease, “Walk in My Shoes™” is a chance to make a difference.
Hosted by P.A.N.D.O.R.A. (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc.) a non -profit charitable organization founded in 2002 to create awareness and address the needs of persons in the U.S. diagnosed with the above mentioned illnesses, “Walk in My Shoes™” will be held on May 23 at the C.B. Smith Park in Pembroke Pines.

The fundraiser is P.A.N.D.O.R.A.’s first hosted walk, and aims to attract participants who will make the 5K walk on behalf of friends, co-workers and family members with chronic illnesses.

“Acknowledging and understanding the real pain of a loved one suffering with these chronic illnesses is one of the most important things that friends and family members can do to show their support,” said P.A.N.D.O.R.A. founder Marly Silverman, who was diagnosed with chronic fatigue syndrome (CFS) and fibromyalgia in 1998. “’Walk in My Shoes™’ also recognizes the important role that caregivers play in the lives of those with these debilitating illnesses.”
“Healthy persons may never be able to truly understand the debilitating body wide pain and fatigue, brain fog/cognitive impairment and flu like symptoms experienced on a daily basis by people with CFS, fibromyalgia and other chronic pain illnesses, however, helping raise much needed funds to continue the work of advocacy groups like P.A.N.D.O.R.A. brings us another step closer to finding a cure,” Silverman added.

WALK REGISTRATION

Check-in for “Walk in My Shoes™” begins at 7:30 am to 8:30 am. The walk starts promptly at 9:00 am. The C.B. Smith Park is located at 900 N. Flamingo Road in Pembroke Pines. For more information, including how to register as a walker or team, go to the event’s website link at www.pandoranet.info.

About P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy

P.A.N.D.O.R.A. was founded on July 1, 2002 by Marly C. Silverman, a Chronic Fatigue Syndrome and fibromyalgia patient. Our mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, Gulf War illness, multiple chemical sensitivities, environmental illnesses, and chronic Lyme disease and advocate on quality of life issues. P.A.N.D.O.R.A. is Built on Hope – Strong on Advocacy – Finding a Cure through Research.

Blue Ribbon Campaign for ME/CFS

The Blue Ribbon Campaign for ME/CFS website is doing great things for ME/CFS awareness.  I found out about this website and campaign through Twitter and I have been having a ball helping to raise awareness & entering the Tweet Contest Giveaway.  A little about the contest…

I am having a contest give away because I want YOU to get more involved. I am going to give away Three prizes May 20th for the top tweeters in the Blue Ribbon Campaign. I am doing this because I want the Blue Ribbon Campaign to become a top tweet and our url to become a top tweet as well.

The Prizes are :

1. $50 USD amazon/or paypal
2. $25 USD amazon/or paypal
3. $10 USD amazon/or paypal

The top three winners and links to their businesses, blogs et cetera will also have a chance to be featured prominently on this website!

Entering the contest is simple and the rules are easy to follow.  You may enter as many times as you wish.  Here’s what you have to do in order to be a part of the Blue Ribbon Campaign Tweet Giveaway:

Each entry must have three elements. Each tweet must contain three things

1. #blueribboncampaign, #brcampaign, #brc4ME (all we be accepted in our tally)
2. ME/CFS
3. http://tinyurl.com/bluerib

If the tweet is missing any of these things it will not count. This means that you can RT someone else’s vote, and it will count as your vote as it’s coming from your account. All that matters is that three elements make it into a tweet from your account to make it count as a vote. 

The vote begins when this page goes live, and ends at Midnight EST on May 17th, 2009 when this years ME/CFS Blue Ribbon Campaign for Awareness ends.

For examples on some of the ways you can tweet using the above guidelines, visit the Tweet Contest Giveaway page.

The Blue Ribbon Campaign is also working hard elsewhere on the Internet and you can:

• Join the Facebook Cause & invite others.
• Join the Facebook Group.
• Join the Myspace Cause & invite others.
• Join the LiveJournal Community & tell how you are raising awareness for the Blue Ribbon Campaign. 
• Become a member of the Blue Ribbon Army. 

ME/CFS Awareness: What You Can Do

Each year, May 12th is designated as International CFS Awareness Day and that date is quickly approaching.  Last year I wrote a post with a list of things that can be done to help raise awareness.  I wanted to republish that post since there were several good ideas we all can use. 

There are many other things that you or a CFS support group can do to help raise awareness, thanks to the CFIDS Association.  Their Grassroots Center has some ideas that I would like to share with you:

• Support groups can designate one person for the Grassroots Action Center Listserv (GAC) program to receive the latest advocacy information on CFS and share it with other group members.
• Either have your support group or several other people you know with CFS send an advocacy letter to your state’s two senators and Congress representative.
• Don’t forget to include the CFIDS Fact Sheet.
• Contact your local radio stations, newspapers, television stations, and magazines about CFS.
• Try to educate at least three people about CFS and the impact it has on daily living.
• Create a simple public service announcement (PSA) and send it to local publications and radio stations. You may be able to find a local graphic designer willing to creatively format your text at no charge.  The CFIDS Association can provide you with sample PSAs.
• Distribute fact sheets or brochures on CFS to local libraries, pharmacies, grocery stores, churches, health food stores, and medical facilities.
• Give presentations on CFS to local women’s groups, church groups, civic groups and schools.
• Ask health care providers to display information about CFIDS. Don’t forget other health care professionals such as your dentist, optometrist and massage therapist.
• Send your personal story to newspapers, radio stations – anyone who will be willing to interview you on your illness.

Please also check out the ME/CFS Awareness website - lots of great information on Awareness Day & Awareness Week events!

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