Monday, April 4, 2016
As many of you know, I wrote a letter to the American College of Rheumatology (ACR). You can find my letter at Criteria for Fibromyalgia on My Radar AGAIN!
Following is the reply from the senior director of quality at the ACR and my response to her is after that.
Reply from ACR Senior Director:
Thanks for your inquiry. My apologies for the delay in getting back to you this week; I am away and trying to catch up on email responses.
As you and Jocelyn have correctly noted, the ACR did provide preliminary endorsement of the Wolfe et al criteria in 2010. This endorsement was published and cannot be “undone,” so readers can and will continue to see that endorsement online and in print. However, since that endorsement was made, the ACR has decided to no longer endorse diagnostic criteria for any disease, for reasons Jocelyn explained. So readers won’t see a new or updated endorsement from the ACR online or in print.
For every criteria the ACR endorses, science continues to progress after the endorsed publication, and different things are published over time. This means readers can always find more recent information than something published 6 years ago – and that is the case here. An evaluation of the newer publications and whether they are better than the older ones should be done by readers and experts in the field, but at this time, the ACR does not plan to do it, given the ACR’s decision to no longer review diagnostic criteria for ACR endorsement.
I hope this helps clarify things.
Thank you so much for answering in such a timely manner. I am eager to share with my colleagues and fellow patients.
I am sure those at the ACR understand my concerns that many rheumatologists (and general practitioners) are unaware of the ACR position on the fibromyalgia diagnostic criteria. Many articles come across my desk that suggest clinicians embrace the Preliminary Proposed Criteria, even though the ACR has not endorsed it.
In light of newer research, as you say, the criteria are a dinosaur. Yet, because of the strong emphasis on somatic complaints without probable cause, fibromyalgia is now becoming a catchall diagnosis again. I have had more than one patient tell me their physician now says fibromyalgia is a psychosomatic illness. I am certain you would agree that this is a travesty for the some five million Americans with this painful and disorienting syndrome. My some 5,000+ contacts report they do have another pain disorder, such as CRPS, EDS, Migraine, spinal disease, chronic pelvic pain, or other rheumatic conditions. I am sure the ACR is aware of the autonomic effects that have been studied by many different groups of researchers with consistent results, in particular heart rate variability. I appreciate that the ACR does recognize that FM often co-occurs with other rheumatic disorders, thumbs up! I would take it a step further and say it co-occurs with other pain conditions, as stated in the Alternative Criteria led by Dr. Robert Bennett.
I truly appreciate that the American College of Rheumatology has decided not to take a position on diagnostic criteria at this time. I appreciate that we need a biomarker such as the FM/a test, or loss of heart rate variability. But in the meantime, I have concerns that patients will not receive the appropriate treatments because their complaints will be dismissed as just, more fibromyalgia. And when other conditions have been ruled out, clinicians should understand that there are objective tests to investigate the common complaints of fibromyalgia. Those include surface EMG for muscle spasticity and muscle tension or thermal changes in the periphery. Ultrasound to locate and treat myofascial trigger points which cause peripheral pain in many chronic pain disorders , a sleep study to evaluate sleep competency, a neurocognitive exam to evaluate cognitive disturbances, and a nocturnal EKG, which can be done with a sleep study to evaluate heart rate variability. These are all things that may be contributing factors to fibromyalgia and can be addressed and treated appropriately.
Once again, thank you for your time and consideration.
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"Adversity is only an obstacle if we fail to see opportunity."
Celeste Cooper, RN
Celeste’s Website: http://CelesteCooper.com
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All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.