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

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


11 comments:

Kristina Schwende said...

Well said Celeste. I look forward to reading their reply.

Celeste Cooper said...

You know I will. In healing and hope, Celeste

dogkisses said...

Dear Celeste,

I wanted to thank you again for this post and the letter you have written. I too look forward to a reply.

You would be a great guest on NPR. This topic would be a great topic as well. I'm not sure who suggests or decides on the topics they choose, but I wish you could be on one of their talk shows because many people (including doctors) listen.

Thank you again for your work!


Rosemary Lee said...

I, too, was stunned by Dr. Wolfe's
use of the word, "Fibromyalginess."
It wasn't stated in a positive light
and I don't think we misunderstood
the intent. I look forward to learning
of their reply.

Great letter Celeste

Rosemary Lee
Seeking Equilibrium

Beatriz Canzian said...

Love your letter! Thank you for being an advocate for all of us suffering everyday from Fibromyalgia!

Celeste Cooper said...

Thank you to everyone for taking the time to read the letter and post a comment. To date, I have not received a reply, but you can bet I will post it if I do.

Good said...

Celeste, it is really great that the fibro community has someone with your background to look out for and advocate for it. Thank you so much for keeping on top of these things. much appreciated.

Maureen Mark DiOrio said...

Thank you, Celeste, for advocating for all of us again. You are a tireless leader and your words brought tears to my eyes.
With so much gratitude....

Lisa Rees said...

Thank you Celeste! #FibromyalgiaAwareness

Ursula Metselaar said...

Thank you Celeste. I live in the UK and I have been patronised and talked down to, during consultations, where I was told in no uncertain terms, that I was wasting the consultant's time..
I also have post concussion syndrome and chronic fatigue syndrome/ME.etc, etc...
Ursula Metselaar

Celeste Cooper said...

You are certainly welcome. The stigmatic "opinions" associated with FM and ME/CFS are nothing short of global ignorance.

More research than not points to FM as a biological problem. The U.S. National Institute of Health is finally supporting research to help the ravages of ME/CFS.

Future research will provide a different landscape for understanding and treatment of FM and ME/CFS.

In healing, Celeste http://CelesteCooper.com

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