Saturday, May 10, 2014
Making Our Way to May 12th: New reports - FIBROMYALGIA, a neuro-immune disorder, a biomarker, and the NFMCPA goes to bat by Celeste Cooper
Jan Chambers and Rae Marie Gleason (Medical Education & Research Director for the NFMCPA) met with the National Institute of Health (NIAMS) in Bethesda, Maryland on March 27, 2014. Ms. Gleason discussed the fact that "there is now the FM/a blood test developed by Dr. Bruce Gillis (EpicGenetics) . Ms. Gleason also informed the NIAMS group that a second FM/a scientific blood biomarker study was presented at the American College of Rheumatology (ACR) meeting this past October (2103), which has been submitted for publication. Ms. Gleason drew attention to the fact that "the FM/a blood test is also being used in an NIH funded study to differentiate fibromyalgia patients from control patients." (Here).
Jan Chambers, President of the National Fibromyalgia and Chronic Pain Association (NFMCPA), has shared her concern of having up to four fibromyalgia diagnostic criteria. She believes, and rightly so, that having the FM/a blood test will provide a differential diagnosis. In light of the different criteria that may be misunderstood by those diagnosing fibromyalgia having a biomarker is important. My concern has always been that when rheumatologists don't agree, how is the general practitioner going to decide which one to use. A huge thank you to Jan Chambers and Rae Gleason for also discussing this at the FDA Fibromyalgia Public Patient-Focused Meeting held on March 26, 2014. You can read more about the meeting here.
The"polysymptomatolgy" (many unexplained symptoms or "fibromyalgianess") in the Wolfe, et al. criteria (2010) has posed a problem for me. Understanding the comorbidities to FM helps the diagnostician, your physician, determine if your symptoms warrant further investigation beyond the primary symptoms of disordered sleep, fatigue, cognitive disturbance, and body-wide pain. Having a reliable biomarker will make certain that research is specifically targeting people with fibromyalgia in light of diagnostic criteria conundrum.
Dr. Robert Bennett has been a leading expert, clinician, and researcher regarding fibromyalgia for many decades, and he and others (2104) believed a study to validate the Wolfe, et al. 2011 criteria was in order. The ACR is paying attention and you can view the updated information here.
Other studies, those on large and small polyfiber neuropathy from fibromyalgia skin biopsies, also suggest there is an immune factor involved. (Caro and Winter, 2014). I wondered about an immune connection at the time of the Albrecht, et al. study (2013). It is possible that our future could hold immune-globulin in our future, but more studies are necessary. One thing we can feel more comfortable about is that if study participants are screened with the FM/a test (93% accuracy) there will be no room for a guessing game.
I believe there is a central reason for why certain diseases cluster with fibromyalgia. In light of the evidence presented here, and the effects they could have on the sympathetic nervous system, fibromyalgia could be reclassified as a neuro-immune disorder.
My personal thoughts until otherwise contradicted is that fibromyalgia is not equal to centralization of pain. If this were true, every low back patient would also have some of the comorbid disorders of FM, which has not been evidenced. More research is needed, but the NIH is FINALLY headed in the right direction.
Showing my support
I have worked with Jan Chambers and the NFMCPA, including our shared participation in the PAINSproject. Jan is not a person to boast about what she and her organization do. So let me give you a sample.
Jan travels from coast to coast. In this past year, she attended the MYOPAIN conference, the Pain Action Alliance to Implement a National Strategy (PAINS) meeting in Washington DC, [You can read the report on my website here, the ACR meeting, the FDA meeting on Drugs and Treatments for fibromyalgia (twice, the first was canceled after she got there due to weather), and she met with the NIH. Not an easy feat for a fibromyalgia patient that headquarters in Utah. Jan sponsors awareness programs across the nation, she implemented the Leadership program for advocates, she has spoken to Utah legislators and has been instrumental in legislation to benefit Medicaid patients with fibromyalgia. She, through the NFMCPA, publishes Fibromyalgia & Chronic Pain LIFE magazine, a newsletter you can get directly delivered to your email, and she gives countless speeches to raise awareness. She not only speaks directly to patients through various forums, she also networks directly with physicians, fellow advocates, and other change agents. This is my shortlist. I am grateful to call her our friend and I encourage you to donate $12 to the NFMCPA, here, so she can continue the important work she does.
“Knowing is not enough, we must apply. Willing is not enough, we must do.”
-- Johann Wolfgang von Goethe
You can self-advocate by sharing the information presented here with your team of healthcare providers and your peers. You may have an underlying condition diagnosed that is treatable. In our current healthcare delivery model, it is imperative that we use our voice, not only for ourselves, but also for future generations. I have found over-and-over again, we don't know how far our voice reaches, but one thing is certain, if we don't speak—no one will listen.
Albrecht PJ, Hou Q, Argoff CE, Storey JR, Wymer JP, Rice FL. Excessive Peptidergic Sensory Innervation of Cutaneous Arteriole-Venule Shunts (AVS) in the Palmar Glabrous Skin of Fibromyalgia Patients: Implications for Widespread Deep Tissue Pain and Fatigue. Pain Med. 2013 May 20. doi: 10.1111/pme.12139. [Epub ahead of print]
Behm FG, Gavin IM, Karpenko O, Lindgren V, Gaitonde S, Gashkoff PA, Gillis BS. Unique immunologic patterns in fibromyalgia. BMC Clin Pathol. 2012 Dec 17;12(1):25. doi: 10.1186/1472-6890-12-25.
Bennett R, Friend R, Marcus D, Bernstein C, Han BK, Yachoui R, Deodar A, Kaell A, Bonafede P, Chino A, Jones K. Criteria for the diagnosis of fibromyalgia: Validation of the modified 2010 preliminary ACR criteria and the development of alternative criteria. Arthritis Care Res (Hoboken). 2014 Feb 4. doi: 10.1002/acr.22301. [Epub ahead of print]
Read more here.
Caro XJ, Winter EF. Evidence of abnormal epidermal nerve fiber density in fibromyalgia: Clinical and immunologic implications. Arthritis Rheumatol. 2014 Apr 9. doi: 10.1002/art.38662. [Epub ahead of print]
Fernandez-de-Las-Penas C, Penacoba-Puente C, Cigaran-Mendez M et al. Has catechol-O-methyltransferase genotype (Val158Met) an influence on endocrine, sympathetic nervous and humoral immune systems in women with fibromyalgia syndrome? Clin J Pain. 2014.30(3):199-204.
New Diagnostic Criteria Pinpoints Fibromyalgia CME by Diedtra Henderson, here.
Martínez-Martínez LA1, Mora T, Vargas A, Fuentes-Iniestra M, Martínez-Lavín M. Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis: a review of case-control studies. J Clin Rheumatol. 2014 Apr;20(3):146-50.
Wolfe F, Brähler E, Hinz A, Häuser W..Fibromyalgia prevalence, somatic symptom reporting, and the dimensionality of polysymptomatic distress: Results from a survey of the general population. Arthritis Care Res (Hoboken) 2013 Feb 19. doi: 10.1002/acr.21931. [Epub ahead of print]
Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB: Fibromyalgia Criteria and Severity Scales for Clinical and Epidemiological Studies: A Modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia. J Rheumatol. 2011 Jun;38(6):1113-22. doi: 10.3899/jrheum.100594. Epub 2011 Feb 1.
Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB, Yunus MB. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken). 2010 May;62(5):600-10.
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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.
Celeste Cooper is a retired RN, educator, fibromyalgia patient, and author of books related to chronic pain and illness. You can read more about Celeste and her work on her Amazon Author Profile, here , or look to the right of this blog for direct links to her work.
Celeste is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com