Johns Hopkins And National Fibromyalgia Association Launch Fibromyalgia Educational Initiative To Bridge Chasm In Diagnosis And Care
Main Category: FibromyalgiaAlso Included In: Pain / Anesthetics
Article Date: 27 Oct 2008 - 2:00 PDT
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The Johns Hopkins University School of Medicine, The Institute for Johns Hopkins Nursing and the National Fibromyalgia Association announced today the launch of the Fibromyalgia Circle of Care Initiative at the ACR/ARHP Annual Scientific Meeting, October 24-29, 2008 in San Francisco. The outcomes-based educational initiative will educate providers about the disease state and the latest therapeutic options; thus, driving accurate and early diagnosis of fibromyalgia for the ten million U.S. citizens impacted by this disorder.
The multi-interventional series of educational activities is open to primary care physicians (PCPs), rheumatologists, psychiatrists, pain management specialists, nurses (RNs), nurse practitioners (NPs) and physician assistants (PAs). The program is designed to educate providers on disease state awareness, diagnosis, impact of early diagnosis and referral, and multidisciplinary care. Additionally, the initiative will share the latest therapeutic options and strategies, as well as review clinical trials that assess newer therapies for fibromyalgia.
"Many fibromyalgia patients see an average of four physicians-over a duration of five to eight years after the onset of the disease-before an accurate diagnosis of fibromyalgia is achieved. This represents five to eight years of underdiagnosis, misdiagnosis and inappropriate treatment of the patient," said Victor Marrow, Ph.D., Executive Director, Office of Funded Programs/CME Johns Hopkins School of Medicine. "The Fibromyalgia Circle of Care Initiative will result in improved patient care by minimizing the lack of awareness among physicians which has been responsible for the inability or reluctance to accurately diagnose, contributing to the fragmentation of care."
The Johns Hopkins University School of Medicine, The Institute for Johns Hopkins Nursing and the National Fibromyalgia Association are collaborating on this unique program to improve fibromyalgia patient outcomes. The integrated educational activities will deliver:
- Practical and interactive case-related content
- Summaries of clinical data and recommendations on how to implement management strategies into the provider's practice
- Updates on clinical practice guidelines and recommendations
- Evidence-based outcomes
- Patient communication content and materials
- Treatment adherence and compliance strategies
"The Fibromyalgia Circle of Care Initiative is unique in its collaboration among healthcare organizations and leaders to raise awareness of the disease state through an interactive program that effectively drives provider participation and implementation of evidence-based lessons within their own practice," said Lynne Matallana, President and Founder, National Fibromyalgia Association. "After completion of this program, participants will be fully prepared to use the tools and lessons learned to positively and tangibly impact the quality of life of these patients."
With fibromyalgia affecting up to ten million people in the United States, or up to six percent of patients seen in general medical practices, the impact to the U.S. economy is significant. According to a 2003 study by I. Jon Russell, et al., healthcare costs range from $12-$14 billion per year and account for a loss of one to two percent of the nation's overall productivity. The study also found that total annual costs for fibromyalgia claimants were more than twice as high as the costs for the typical insurance beneficiary. Furthermore, the prevalence of disability among employees with fibromyalgia was twice as high as compared to all employees. Lastly, for every dollar spent on fibromyalgia-specific claims, employers spent approximately $50-$100 on additional direct and indirect costs.
For more information or to register to participate in the Fibromyalgia Circle of Care Initiative, e-mail info@circleofcare.md.
About The Johns Hopkins University School Of Medicine
In July 2008, U.S. News & World Report ranked the Johns Hopkins Hospital #1 among American hospitals for the 18th consecutive year. In 2006, the Johns Hopkins Office of CME received "Accreditation with Commendation" for six years, the highest ranking issued by the ACCME. Hopkins CME has been recognized as a center for "Best Practices" and as a resource to ACCME-accredited providers. For more information, please visit http://www.hopkinscme.edu.NURSING
The Institute for Johns Hopkins Nursing designs and delivers leading-edge continuing education for nurses. The Institute accesses the expertise of faculty and nurses from both the Johns Hopkins University School of Nursing and Johns Hopkins Hospital, including over 2,500 highly skilled clinicians in 10 clinical and countless subspecialty areas who are also world-renowned researchers and educators. For more information please visit http://www.ijhn.jhmi.edu.
About The National Fibromyalgia Association
The National Fibromyalgia Association (NFA) is a nonprofit 501(c)(3) organization whose mission is to develop and execute programs dedicated to improving the quality of life for people affected by fibromyalgia. The NFA publishes a quarterly magazine, Fibromyalgia AWARE, and hosts an award-winning website at http://www.FMaware.org.
National Fibromyalgia Association
Visit our fibromyalgia section for the latest news on this subject.
MLA
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APA
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Visitor Opinions In Chronological Order (4)
Thank you
posted by Annie Gourieux on 28 Oct 2008 at 2:02 amFinally, a system is being put in place to get the treatment necessary for all the millions of fibromyalgia sufferers.
What?
posted by Kathy on 18 Sep 2011 at 8:54 pmI don't see how this article impacts those of us who
have suffered for so long. I was diagnosed l4 yrs
ago and every doctor I've been to since has rolled
their eyes at the diagnosis! I do not feel heard
and no treatment has been offered - since I'm
already on SSRI's, they say there's nothing else
to be done. Mine began when I was diagnosed with
PTSD and I began to notice a constellation of
symptoms but the primary was unrelenting pain
and tendernes and stiffness. I was told I was
find by a couple of rheumatologist and could not
even get admitted to a hospital until I fell
unconscious in the ER for 3 days....I was still
not referred to a rheumotologist but insisted on'
seeing a neurologist and after her input was
immediately taken off all meds and released after
two weeks - no explanation, no copies of tests,
nothing and I was only treated by psychiatrists
because of the meds I was on. I'm encouraged to
see that Fibro is taken more seriously now and
I'm determined to find some help....thanks for the
info but I don't feel like I have yet the knowledge
to begin my quest for recovery....
i feel 4 those who suffer too!!!!
posted by scott oconnor on 20 Sep 2011 at 10:02 ami,m posting to the ladies post above,** i wentthru the same kaotic turmoils,and was getting even more upset w/ the drs rolling there eyes bit, as alot think your after pain pills!! as there is bad eppidemic for that, but thats our fault that drug atticts ruin it for others who, seriously need help like myself this lady and millions more i,m sure, i been suffering (understaement) for like 12 yrs now and its a mess this health care (noncare!!) as i get a lot run arounds and test tests more tests and more more bills w/ no avail? i was told oi have the exact symptoms of fibro about 9 or so yrs back, then they put me on some antidepression meds(usa kickbacks 2 docts for writingthis crap!) made me feel worse alot th emeds they give me,anxiety ,stomach troubles,feeling strange??)oh that will go away w/ time?? so will my life!!that i want back,to all that suffer i feel and pray 4 us!!as i have bad degenarated discs and joint issues and sciatic problems,i excersise,eat diet thats supposed beter 4 me n my condition,still i feel lythargic/pain tender spots and joint issues,and its worse w/damp and cold weather??but i dont have rheumatoid arth a swas tested for that and my mas has lupus badly and i tested neg for that thank god,but still have very similar pains and symptoms of lupus hence the fibro is kinda the same in ways of symptoms,i been doin research and reading alot books from library,and its very strange disease or what ever they classify this as??its a disabilitating issue w/the way it makes you feel like you have abad flu!!aches in joints and bones.and feel low low energy and i,m not over weight or do drugs ,alchol ect i,m clean so to speak and i have these very strange symptoms that pop up one day feel good somedays i,m literally laid up??anyone share and id like to feel i,m not alone,50 yr old this problem or symptoms from this in similar ways??i,m not best typer or pc person so ,please try to read my writing best you can..as i stae i still use the library!!and paper n pencil as i do make mistakes i,m human..any replies wouldbe grateful. very strange illness..god bless us all and hope the lord to give us strength and to not be trapped in a failing medical system that profits from tests tests and still no answers??or even sometimes a cold caring staff of people that shouldnt be dr,s!!!!its a scarey pathetic situation,if you are stuck in it!! others dont know the hell ya go through trying to get the caring persons i know still excist some where? when did drs stop having a heart???very rude anymore and that really makes you leave there adding insult to injury!!!!!!!thanks to all that do care sincerley mr oconnor...have great day!!!try!! the 1st step!! its not easy w/ this as alot fall into deep depression feeling noone cares and understands i do know!!as i been there,they are quick to whip the book out to write anti depressionmeds!!!** which drs and health care providers get kick back s $$$ from writing these meds and getting them out there in /on the public..$$$ corruption any one??hate to be negative but i see it all the time!the drug reps w/ there cute lil carts and smiles to drop the bomb on the non knowing public!!!!!doesnt drs never talk about alternative care ,herbs,diet,excersise is huge big _+++ w/ this disease.dont sit around as it will kill you!!force your self to move and take a gimp (walk) slow is fine!!!thank you all for listen to my li babble and experiencce email if so...thanks so much mr oc........
fibro misunderstood or they dont care?
posted by scott oconnor on 9 Jan 2012 at 1:02 pmi just wanted to post my 2 cents here,im a 50+ male and been having alot strange symptoms w/muscle pains and jounts,and flu like issues w/out flu?rash9redness on my face ,only flares up when i get the bad flu like and aches pains very strange indeed and i dont think doctors anymore are even into helping people more than,they are w/ there status! ,my humble opinion,i have chronic pain for years and this stuff really messes w/ your mind,lack sleep,joint pains,and alot strange symptoms ,so they diagnosed w/ w fibro and they keep coming up w/ lyme disease antibodies in my blood work?my moms had lupus for long time ands wearing her thin now,and she said her blood work comes up as lyme disease anti bodies?/any one knoww what the heck is goin on?i also have mris and they found a growth or a cyst?? noones done anything and i,m in literal agony ,anyone have any ideas,i,m in new mexico and is terrible health care here ,1 hospital i wouldnt let treat and cut!!! any one w/any help or replies id be grateful,alot eye rollin and what ya want me to do attitudes,very unprofessional and non catring eccept what insurance you have??sound familiar?..i,m in a near desperate situation on keeping this pain at bay and living my life,its just plain,terrible,as is now,i take pain meds and all but still have pains and they always wanna pop ya on anti depressants for anything? thats okay,to give to anyone,kickbacks from big drug $$$$$ and all these politicians are and do own stock in these major companies,can any one say,cooked and cruel people.i wouldnt even wish this pain and symptomson anyone!! not even a dirty lying official!! god bless all going thru this mayhem and neglect..its a horrible thing indeed.any one wanting to email and or chat id be honered to help or have some backing help..iv,e become a literal hermit as i dont wanna be around people feeling like this,lack sleep,bad appetite ect..i feel your pain..for real i,m no dr or care giver but have taken to my self for knowledge and looking into **how i feel and i know my body,i dont smoke do drugs or alcohol ect ,and still feel like deaths knocking sometimes,rundown to low energy n lack of sleep and alot very strange symptoms as stated..anyone in this boat and need a xtra oar to go foward drop me a line or post,sorry 4 the ramblin but this is part of the symptoms is get ,frantic feelings from lack sleep proper diet and terrible health care,why call it care any more,seems like the only care i see is the care if they get paid first!!!!!!!!!!!!!!!* i wish all seeking help may you find it,i been desperatly looking or long time and hear the same old same old, systems busted,dr,s arent taking patieants AND SO FOURTH??IS THIS HAITI OR OTHER 3RD WORLD COUNTRY?? I THOUGHT IUS WAS THE USA WHERE I WAS PROUD TO GROW UP AND BORN HERE W/ PRIDE??WHATS GONE ON?.HOW MUCH $ DO THESE GREEDY PEOPLE NEED? OR HOW IMPORTANT DO YA NEED BE? THATS WHAT I SEE IT BOILING DOWN TO ANMY MORE SAD BUT TRUE..THE MIGHTY BUCKS GONNA PUT US IN THE POOR HOUSE,I,M ALREADY THERE..
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