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.

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.

NFA Fibromyalgia Awareness Day Activities

The National Fibromyalgia Association has been very busy getting events and activities lined up for Fibromyalgia Awareness Day on May 12th.  As a member of the Fibromyalgia community, it is our duty to take part in doing whatever we can to raise awareness.  Here’s what is going on!

Purchase and wear your Walk of FAME t-shirt.

Develop and/or take part in an Awareness Day activity:

• NFA’s weekly live podcasts
• Annual Walk of FAME
• Virtual Walker Opportunity
• Walk of FAME Drawing
• Media & Community Outreach – Sample press releases can be found HERE. 
• Candlelight Observance – “Lights Of Hope”
• Proclamation Program
• “Fibromyalgia Affects Everyone” Events
• Pledge to Care Program
• More Awareness Day events taking place.

Contact your local media sources:  newspapers, radio, etc.  Click HERE for a sample press release you can use.

ME/CFS & Fibromyalgia Awareness Day Events – Please Email Me!

If you are participating in any upcoming ME/CFS and Fibromyalgia Awareness Day activities or campaigns, please email me your information and I will post it on Fighting Fatigue!

May 12th is quickly approaching and we want to spread awareness news as much as possible!

American Pain Foundation Fibromyalgia Awareness Day Campaign

The American Pain Foundation is helping our cause on National Fibromyalgia Awarness Day by having their own online activities and events.  Visit the American Pain Foundation website for their:

• new Fibromyalgia Toolkit
• new Fibromyalgia Assessment Tool – Is Fibro the Cause?
• new Fibromyalgia & Creativity page – highlighting art and words of people with FM
• PainAid Online Community all-day chat
• Fibromyalgia Materials and Talking Points

You can also watch the American Pain Foundation’s You Tube video, “Fibro is Real”, and forward it on to anyone you want to know and understand more about Fibromyalgia.

Awareness: “Five Hundred Miles for Fibromyalgia”

It’s almost that time of year again – National Fibromyalgia Awareness Day is approaching quickly on May 12th.  The National Fibromyalgia Association is working hard yet again this year to promote Fibromyalgia and they have something new up their sleeve this year!  The National Fibromyalgia Association presents their first patient and support group road trip, “Five Hundred Miles for Fibromyalgia”.  The road trip will begin in Anaheim, CA at the NFA headquarters and will end in Sacremento, CA with stops along the way.

Once the road trip gets to Sacremento, the state capital, the participants will be meeting with Fibromyalgia patients and support group members to celebrate National Fibromyalgia Awareness Day with a candlelight observance.  Members of the media and public officials will be invited to attend.   The road trip will be publicized on several media outlets such as Facebook, MySpace, YouTube, and Blog Talk Radio. 

The NFA says:

This will be the first Fibromyalgia Awareness Day campaign engaging a broad national and international “grassroots” audience using the Internet’s various social media tools simultaneously. If you’re interested in joining the road trip, either as a driver or passenger, please contact Corin Walson at cwalson@fmaware.org or 714-921-0150.

P.A.N.D.O.R.A. Announces “Walk In My Shoes” Walkathon

Walk with P.A.N.D.O.R.A to benefit children, men and women stricken with Neuroendocrineimmune Disorders such as: chronic fatigue syndrome/ME (CFS/ME), fibromyalgia (FM), Gulf War illnesses (GWI), multiple chemical sensitivities (MCS) or environmental illnesses (EI) and chronic Lyme disease (CLD). Your participation supports research that can lead to scientific breakthroughs, physician training, scholarships for the chronically ill, quality of life outreach programs and advocacy initiatives.

The “Walk In My Shoes” walkathon will be held:

Saturday, May 23, 2009, 7:30 AM
CB Smith Park
900 N. Flamingo Rd.
Pembroke Pines, FL 33028

Check -in:  7:30 to 8:30 am
Walk begins:  9:00 am sharp

To register for the walkathon, click HERE.  To donate to the walkathon, click HERE.

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