Editor’s comment: In early November 2014, we told you about a letter Celeste Cooper, RN sent to the American College of Rheumatology expressing her concerns about the term “fibromyalgianess” and the Wolfe 2010 fibromyalgia diagnostic criteria. (See “Patient Harm: The Facts and Effects of Fibromyalgia Diagnostic Criteria”) Six weeks later, after sending a second letter asking why they had not responded to her first letter, Celeste finally received a response from the ACR. (See below)
Reprinted with the kind permission of Celeste Cooper and These Three.
The ACR Response to My Inquiry on the Fibromyalgia Diagnostic Criteria – Should I Scream or Cry?
Finally, we have a response from the American College of Rheumatology (ACR) regarding my letter which was spirited by my blog “FIBROMYALGIANESS—Patient Harm: The Facts and the Effects of Fibromyalgia Diagnostic Criteria.”
While this was not the response I was hoping for (because I favor the Bennett 2013 Alternative Criteria, which you can view here), it is an answer and I am thankful to Jocelyn Givens.
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Could it be the ACR is distancing itself from fibromyalgia, fibromyalgianess, and the controversy? With some research suggesting that fibromyalgia is immune mediated and other research suggesting it is a problem within the brain, could fibromyalgia be adopted by immunology or neurology? If research suggests fibromyalgia is indeed an autoimmune disease similar to lupus (SLE), shouldn’t it stay right where it is, under the umbrella of rheumatology? Are we back to square one? What kind of research can we expect in the future, and investigated by who? Who will set the criteria for making sure patients in studies do, in fact, have fibromyalgia? Don’t clinicians currently look to the ACR for guidance, like they would look to the American College of Neurology for diagnostic criteria for MS? Surely I am not alone in my concerns.
“Sometimes described as an ‘orphan’ disorder, FM is much like an unclaimed waif. Finding its closest molecular relative will determine its scientific classification.”
Following is the ACR Response:
Good Morning, Celeste.
Thank you for your interest in the ACR’s efforts related to criteria. I reached out to our Senior Director of Quality regarding your inquiry and received the following information that I hope you will find helpful.
At the time of publication, the ACR did provide provisional endorsement of the 2010 FM diagnostic criteria authored by Dr. Wolfe, et al. What this means is that the ACR reviewers agreed that the drafted criteria were a reasonable first step to developing new criteria in this area, but the criteria were not yet validated in an external dataset so full endorsement could not yet be given. The purpose of ACR provisional endorsement of criteria is to encourage investigators in the field to do the necessary validation work to confirm if the criteria are actually as promising as they look during the initial review. Once this external validation work has been done, investigators can then come back to the ACR for consideration for full approval.
In the case of the Wolfe criteria, however, even if good external validation work is done, they will not receive full ACR endorsement because the ACR has since 2010 established a policy that it will no longer endorse diagnostic criteria. The main reason for this is because ACR endorsement of diagnostic criteria can negatively impact access to care and appropriate treatment for patients with that condition, which is clearly not our goal.
The ACR believes there is value in diagnostic criteria, because they are helpful as guidance to clinicians and patients as they make decisions about care, but we maintain that the final decision about any patient care should remain between the physician and patient, i.e, we recognize that there will be exceptions to any standard criteria that are developed. Because our endorsement of diagnostic criteria may imply that this is not the case, the ACR has chosen not to endorse newly developed or validated diagnostic criteria now or in the future.
Again, thank you for your interest, and I hope we have been able to address your concerns.
American College of Rheumatology
About the author: Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body, Wounded Spirit, Balancing the See Saw of Chronic Pain, Fall Devotions devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy. You can read more educational information and about her books on her website, TheseThree.com.