Following is a letter I wrote to the American College of
Rheumatology, as promised in my blog
Fibromyalgianess—Patient Harm:
The Facts and the Effects of
Fibromyalgia Diagnostic Criteria
You can find the blog/article HERE.
On Sharecare HERE.
Praeludium - Prelude
Having a well-researched, unbiased tool for diagnosing
fibromyalgia is imperative to change the way fibromyalgia is judged and treated
physically, emotionally, and socially. The correct diagnosis of patients
participating in clinical trials is crucial to study results and the ability to
secure further research funding. The right research can make a difference in the lives of an estimated five million adult Americans (NIAMS) and of hundreds of millions of fibromyalgia patients worldwide.
November 3, 2014
American College of Rheumatology
acr@rheumatology.org
arhp@rheumatology.org
foundation@rheumatology.org
Marian T. Hannan Editor, Arthritis Care & Research DSc,
MPH
hannan@hsl.harvard.edu
To whom it may concern:
I am an RN and pain advocate as part of the Pain Action
Alliance to Implement a National Strategy (http://PainsProject.org). I once
wrote continuing education programs for the Missouri State Board of Nursing,
and I practiced as a legal nurse consultant holding a degree in paralegal
studies. I am presently a fibromyalgia expert on Sharecare.com, and I am a
published author of several recognized chronic pain self-help books. I am a
guest columnist for Kansas City Nursing News. I am also a person living with
chronic pain.
I sit in angst because the healthcare industry, of which I
have spent most of my adult life, is entertaining the demeaning label of
“fibromyalgianess.” I ask, how are we ever to change the way pain is perceived,
judged, and treated as set forth in the Institute of Medicine Report,
“Relieving Pain in America” if such disingenuous labeling gains general acceptance?
This term was coined by Dr. Frederick Wolfe et al. As I am very concerned
regarding Dr. Wolfe’s capricious attitude in his published papers on
fibromyalgia, I would like to to know if the ACR has formally adopted the Wolf
2010 criteria for diagnosing fibromyalgia.
If we are to move to a biopsychosocial model of healthcare
delivery, one cannot use labels that harm patients and their ability to cope.
When we enter a physician’s office with hope and leave in tears, our needs are
hijacked. Such neglect delays appropriate treatment and assessment of comorbid
conditions.
I await a timely response to my request from the American
College of Rheumatology on the formal acceptance of the Wolfe , et al. 2010
criteria. Thank you for your time and your consideration in the effort to
promote the unbiased reporting of rheumatology research studies.
Sincerely, Celeste Cooper, RN, BSN, Diploma in Paralegal
Studies
EMail: Celeste@TheseThree.com
Website: http://TheseThree.com Update http://CelesteCooper.com (April 2015)
cc:
National Institute of Arthritis and Musculoskeletal and Skin
Diseases
National Institute of Health – Pain Consortium
CDC, Office of Science Quality
Jan Chambers, President, National Fibromyalgia and Chronic
Pain Association
Karen Lee Richards, Fibromyalgia Editor, Pro Health, and Chronic
Pain Health Guide, Health Central (Co-Founder National Fibromyalgia
Association)
Robert Twillman, PhD, American Academy of Pain Management
Kim Kimminau, PhD, Associate Professor; Director, Center for
Community Health Improvement, Kansas University School of Medicine (KUMC)
Myra J. Christopher, Kathleen M. Foley Chair in Pain and
Palliative Care at the Center for Practical Bioethics and Principal
Investigator of the Pain Action Alliance to Implement a National Strategy
(PAINSproject.org)
Cindy Leyland, Project Director, Pain Action Alliance to
Implement a National Strategy (PAINSproject.org).
Pat Anson, National Pain Report
American Chronic Pain Association
National Patient Advocate Foundation
The State Pain Policy Advocacy Network
US Pain Foundation
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