Pain is Real Blog
Perspectives on life-altering pain. Current issues, purposes and consequences of pain relief policies, guidelines, and laws affecting the accessibility of safe, effective, and affordable health care.

Pain is Real Blog
28 September 2016 In Remembrance Tributes

The Memorial Wall offers the opportunity to honor a loved one with fibromyalgia or other chronic pain condition who has passed away. Everyone has a life story. The NFMCPA gives families and friends the ability to pay tribute to the life of the deceased person by telling her/his story and honoring her/his memory on the Memorial Wall. To contribute to the Memorial Wall, please donate here.

In Memory of..

April Zink
Arlene Gendzwil Eddy
Bea E .Magie
Betty Jean Biles
Betty Joann Snyder
Briana Halpin
Burton J. Rab
Carmen Gloria Torres
Carrie Thomas
Clara Romano
Claudia Stine
Florence Oelker

Jaime C. Herbert
Judy Ornstein
Juliet Borges
Kanani Donahue
Laura Scalla
Lauren Keppenberger
Laurie Fessler
LuAnn Nail Swymer
Lynne Caswell
Madeline C. Martin
Margaret Mroz Swayhoover
Marla K. Taylor
Mary Elizabeth Lieber DiJorio
Mary K. Castner

Michael Corriere
Michele James
Muriel Rothenberg
Nicholas R. Albers
Scott M. Henderson
Sharon Clarkson
Sheetal Patel
Peigi Swayhoover
Regina L Hamilton
Theodore Albert Rees
Thomas Hennessy Jr.
Valerie Lynn Carter Thiele
Vivian Cooper

28 September 2016 In 2013
Marla K. Taylor (October 19, 1946 - March 18, 2013)

Marla suffered from fibromyalgia long before it was officially diagnosed. Eventually, she had to leave her secretarial job and take disability, but she refused to quit working until she absolutely had to. She was a very gifted crafter and artist, but again, fibro forced her to give up those hobbies. She only did activities that were "worth the pain." Mostly she refused to give up her grandson's school programs and special events in my life. Never once did she whine or say "Why me?" Even when she was diagnosed with two types of cancer which eventually took her life, she lived ... and died... with courage and dignity. And in the end, she asked that her memorial money go to the National Fibromyalgia & Chronic Pain Association so that others might not have to suffer like she did. Written by Marla's sister, Mary C. Taylor

28 September 2016 In 2014

“Tom,” as many of us knew him, once had a thriving career in sales before he was struck down with what is known by many as chronic fatigue syndrome and chronic Lyme’s disease. However, Tom never stopped his tireless advocacy for those suffering from invisible illnesses that cause disability and hardship. So it is only fitting that we give tribute to a great advocate. Tom was a go getter, a blunt speaker, but proficient. He used his voice, time and talent to raise awareness even though he suffered and struggled like so many of his peers in the world of chronic illness. He fought for recognition of chronic immunological and neurological diseases including, myalgic encephalomyelitis/CFS, fibromyalgia, multiple chemical sensitivity, Lyme’s disease, Gulf War Syndrome and other overlapping disorders he felt deserved awareness. Tom was not only proficient, he was highly intelligent, and never missed a beat. Some might call him crass, but all would agree he was effective. He chose his battles well and used his disdain for the way people were treated. He used his anger regarding the ignorance and complacency of many as fuel for his mind, even when his body was failing him. When he could, he used his unique and colorful public speaking skills to bring awareness, and he was adamant about a name change for “chronic fatigue syndrome.” Tom was the founder of international awareness day for Invisible Illness, May 12th. In an interview with Cort Johnson (2008) Tom said, “After reading Byron Hyde’s great book on the history of Myalgic Encephalomyelitis, I decided to use his Birthday, and lo and behold, May 12th [thought to be] was Florence Nightingale’s birthday.” How fitting. It doesn’t stop there; Tom was also the founder of R.E.S.C.I.N.D. (Repeal Existing Stereotypes for Chronic Immunological and Neurological Disorders.) This author signed a petition initiated by R.E.S.C.I.N.D. some 13 years ago along with thousands upon thousands of others. The stories with those signatures are heart wrenching, and Tom did all he could do to spread our voice. Little did this writer know that we would meet again in the virtual world, and that we would exchange personal emails on various advocacy issues. Tom always supported other advocates. He was always concerned that the ball would be dropped on raising awareness for ME/CFS, FM, GWS, Lyme’s and other clustering invisible illnesses. He knew only too well how these illnesses can take a person with strength of character and a thriving career and grind their human dignity into the ground. Therefore, he seized yet more opportunities by making contributions to the NIH committee Chronic Fatigue Syndrome Action Committee, CFSAC, even when he was so ill he could hardly hold up his head. At one point he took on the CDC, and no doubt he made his points clear. Tom was never one to mince words, he made this writer laugh on many occasions with his bold and powerful statements, but he also made people think. Today, the movement continues for a name change. It’s here, it is recognized by the CFSAC that chronic fatigue syndrome will be called myalgic encephalomyelitis/chronic fatigue syndrome. But the work isn’t done; now the “label” must be embraced by every healthcare provider and researcher. You did this Tom! Tom was an advocate who spoke brilliantly on the Larry King show adding his special flavor for a battle from which he would never back down. He would describe himself as a mover and shaker and that was apparent in his vibrant way of speaking. When he spoke, you were never left wondering where he stood with his advocacy. On his Linked-In profile (always connected), he said he loves fast cars, beautiful women, great jazz, charity concerts, travel, great food and wine! That should come as no surprise, and I have seen pictures to prove it. Tom was a true advocate; he inspired many, and he never stopped despite many obstacles sent his way. Tom made a difference for many patients, some of which he never knew. The legacy is to never give up. Help Tom live on by continuing the work to raise awareness. Honor this great advocate’s legacy by putting action into your words. Use your time and talent, you have them. There could be no better tribute to this man called friend by many


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