Thursday, December 18, 2014

The ACR Responds to My Inquiry on the Fibromyalgia Diagnostic Criteria - Should I Scream or Cry? by Celeste Cooper

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.

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.
 Excerpt from Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain…


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.

Jocelyn Givens
Senior Specialist, Public Relations

American College of Rheumatology

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Update as of April 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.


dogkisses said...

I'm a bit confused. It takes me a while to process information, so I'll come back to this. What do they mean by saying they do not intend on using diagnostic criteria now or in the future?

The Pained Ink Slayer said...

+dogkisses that is a very good question. I am working on a blog to follow this one up and will try to have it ready by January.

Unknown said...

It sounds like a bunch of double speak to keep you confused without actually giving an answer. IMO

The Pained Ink Slayer said...

Theresa this was my sentiments as well. More to follow.

dogkisses said...

I recently saw a neurologist. I've had shingles on and off since age 17. I'm fifty one now. I know nerve pain! He said I didn't have nerve related issues and that I was a person, "who gets out and about," which he said was his reason for not suspecting problems, after I couldn't walk on my foot (from nerve pain) for almost three months! Every moment of my days and nights, it felt like a knife was stabbing into the bottom of my foot and like my toenails were being pulled off. Every night, every hour, I'd wake up from the pain, literally screaming out (which woke me up!).

He certainly never mentioned fibromyalgia (unless he thinks that is simply all in the mind!). I must say I've had a terrible time since I fell in December and I fell b/c of a nerve related problem.

Terrible times Celeste.

Unknown said...

I am wanting to know the same thing is it brain related or autoimmune disease? What really gets me is some drs don't even believe that it'd a true painful condition that causes other things to such as skin problems headaches etc...thank you for all your research. I have learned more from you than any doctor I have seen.1000 thanks!!

The Pained Ink Slayer said...

Sherrie, I am always grateful to hear what I share is helpful. Research indicates that FM does have a strong central nervous system component, hence centralization and wind up. We now know that immune system involvement is also orchestrated by the brain, something we didn't know before. These things help explain the overlapping conditions. You might be interested in my blogs on the FM/a test.

Blood Test for Fibromyalgia: FM/a Test ® Is Real, Q&A

FM/a® Blood Test – “How To” and My Results

Thank you so much for the positive feedback. In healing, Celeste

Unknown said...

Sounds like a bunch of gobbly-gook to me! The was a time when the ACR claimed FM as its own. Just like the Arthritis Foundation claimed FM as its own. So it just seems silly to me that the ACR would be so wishy-washy about it now. I was diagnosed in 1988. It's ridiculous that we are still fighting some of the same battles we fought back then!

To answer your question Celeste: Scream and keep screaming! And we will scream with you!

The Pained Ink Slayer said...

I am in great hopes that they will quit all the political posturing ( who is right, who is wrong, how many suscriptions can we sell, how many advertisers can we get) and work to support research that looks at the problem, not the consequences. Yes, my mom always told me to speak up, because it's the squeaky wheel that gets the grease! ;-)

The Pained Ink Slayer said...

The mighty oak was once a little nut that stood its ground.

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