Thursday, January 8, 2015

Hey! American College of Rheumatology, What’s the Deal? by Celeste Cooper

I have concerns regarding the response I received from the American College of Rheumatology (ACR) regarding fibromyalgia diagnostics. You can read my inquiry letter here and the ACR response to that letter hereCould it be the ACR is distancing itself from the fibromyalgia the controversy? 

My concerns as follows:

  • Some studies show immune dysfunction in fibromyalgia, so could fibromyalgia be treated by immunologists in the future?
  • Studies show the brain of the fibromyalgia patient is structurally affected, so should neurologists study and treat fibromyalgia?
  • Other research suggests fibromyalgia is indeed an autoimmune disease similar to lupus (SLE). If this is the case, knowing a hallmark symptom is indeed overwhelming muscle and soft tissue pain and anomalies, shouldn't it stay right where it is—under the umbrella of rheumatology?
  • What kind of research can we expect in the future, and investigated by whom?
  • If the ACR will not endorse any criteria, who will?
  • Don't clinicians currently look to the ACR for guidance, as they would look to the American College of Neurology for diagnostic criteria for MS?
  • Can we expect consistency if so many are being misdiagnosed with fibromyalgia as we are seeing with the Wolfe, et al criteria? How will a tainted study participant pool yield accurate results?
  • Exactly who should be responsible for amending and updating the criteria for diagnosing fibromyalgia to reflect research findings moving forward?

Can we expect research funded by outside sources to be based solely on their intent to prove their product to boost their bottom line? Are we to be okay with having half the participant pool misdiagnosed with fibromyalgia when they actually have a mental health disorder? See the following excerpt from a blog I posted in April 2013, Fibromyalgianess is ALL in Our Head? My Correspondence with DrFrederick Wolfe.

Celeste Cooper (Me): I also have grave concerns over the non-specific disease related symptoms being seen as somatic complaints, in the [Preliminary Proposed Diagnostic Criteria for Fibromyalgia] PPDCFM when they can be linked to specific comorbid disorders and treated appropriately. Marla Silverman and I co-wrote an ADVOCACY PIECE over a year ago regarding our concerns for CFS/ME and FM in the new DSM-5, and now our concerns are born out. I fear it is because the PPDCFM specifically identifies somatic complaints associated with FM without tying them to the comorbid disorders other than IBS and hypothyroidism and that 40% of FM patients (as you report) fall into this DSM-5. This is significant.

 Dr Wolfe’s email response: I don't share that concern or agree with you. However, the physician can certainly chose to exclude symptoms of known diseases if she chooses. That's why we ask physicians to analyze the symptoms and make a judgment.

I am surprised that Arthritis Care and Research would allow the ACR to be named in titles if they indeed want to distance themselves from any criteria, ie. New American College of Rheumatology Criteria for Fibromyalgia: A Twenty-Year Journey by Frederick Wolfe, published in Arthritis Care and Research, May, 2010. This is just one of many examples. Folks are referring to these unapproved criteria as the new ACR criteria in their papers.

Is It Just Me?

Is it just me, or does the ACR letter seem ambiguous? Following are excerpts that factored into my conclusion.

… the ACR did provide provisional endorsement of the 2010 FM diagnostic criteria authored by Dr. Wolfe, et al… but the criteria were not yet validated in an external dataset so full endorsement could not yet be given… Once this external validation work has been done, investigators can then come back to the ACR for consideration for full approval.  
… the ACR has since 2010 established a policy that it will no longer endorse diagnostic criteria. …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. [So why are the suggesting that once it is validated by an outside source, it is to be resubmitted for consideration of full approval. CC]

You can read the full letter here.

And what about the Bennett, et. al criteria? No mention, even though it was published in the September, 2014 Arthritis Care and Research?

By the Seat of Their Pants—Post Exfacto

I believe the ACR is flying by the seat of their pants on this one, post exfacto (after the fact). The Wolfe criteria have been criticized for the same reasons I am concerned. The criteria under-performs and identifies patients with FM at a much greater rate than the 1990 criteria. It doesn't take a rocket scientist to figure out this is because they are diagnosing fibromyalgia in patients with somatic symptoms disorder (pdf here). 

A direct quote from the DSM-5:
 "...while medically unexplained symptoms were a key feature for many of the disorders in DSM-IV, an SSD diagnosis does not require that the somatic symptoms are medically unexplained."

Is it starting to make sense as to why some physicians now see fibromyalgianess as a label for psychosomatic illness? 

What can we do?

  • Talk to your physician about what criteria he or she used to make your diagnosis.
  • Make your providers aware of the stance the ACR has taken.
  • Educate your provider on the Bennett Alternative Criteria. (See my blog, which was over-viewed by Dr. Bennett.
  • Share this blog with your doctor or his/her nurse. Ask about their opinion and write about it. We all need to hear encouraging words. I am thankful to say, there are those who strongly disagree that fibromyalgia is a psychosomatic illness.
  • Write to the American College of Rheumatology, here and to the editor of Arthritis Care and Research, here
  • Support the researchers with your gratitude for what they do. (You can usually find an email address for the lead investigator in the abstract on PubMed, here. 
  • Use the helpful links on my website, here.

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Update 2015

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain Pro Advocate
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Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

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