Wednesday, November 5, 2014
To whom it may concern—American College of Rheumatology… Criteria for Diagnosing Fibromyalgia, by Celeste Cooper
Following is a letter I wrote to the American College of Rheumatology, as promised in my blog
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
Marian T. Hannan Editor, Arthritis Care & Research DSc, MPH
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
Website: http://TheseThree.com Update http://CelesteCooper.com (April 2015)
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