* CDC & NIH Fibromyalgia Advocacy Petition 2021 *

As an Army Veteran living with Fibromyalgia, this petition was created on behalf of the Fibromyalgia Community, to advocate the Centers for Disease Control (CDC) and National Institutes of Health (NIH) update their websites pertaining to information related to Fibromyalgia. Both organizations are a guiding tool of medical information for medical professionals and patients alike. In light of the Corona Virus Pandemic, it has spotlighted how integral these organizations are in relaying medical and scientific information in a timely manner. However, both organizational websites are sorely antiquated and outdated pertaining to information on Fibromyalgia.

Effective October of 2015, Fibromyalgia was reclassified as a Central Nervous System Disorder, with the designated diagnostic billing medical code ICD-10-CM CODE M79.7. Research shows Fibromyalgia afflicts 2% - 4% of the world’s population (Source: “Fibromyalgia - A Clinical Review”  by Dr. Daniel J. Claw, April 16, 2014), and upwards of 14 million people in the United States live with Fibromyalgia. Additionally, Fibromyalgia is often cited as being prevalent amongst women. However, ongoing research and statistical patient surveys found approximately 40% of Fibromyalgia sufferers are men. (Research Source: “Fibromyalgia diagnosis and biased assessment: Sex, prevalence and bias”  Wolfe et al. published September 13th, 2018. (Research Source: “Understanding the Impact of Fibromyalgia on Men: Findings From a Nationwide Survey”  Heidari, Afshari, & Moosazadeh, published 2017). It has been identified between 1-2% of children and adolescents have Fibromyalgia. (Research Source: “Fibromyalgia in children and adolescents: a clinical manifestations and diagnosis”  Buskila D, Press J et al. published 1994, Research Source: “Prevalence of Fibromyalgia in Children: A clinical Study Mexican Children”  Clark P, Burgos-Vargas R, et al. published 1998/2009). Moreover, we are seeing an uptick of Military Veterans being diagnosed with Fibromyalgia as well. In addition, in 2010 the American College of Rheumatology did away with the Fibromyalgia “Tender Point Test” and brought forth new diagnostic criteria, introducing the Widespread Pain and Symptom Severity Index (WPI/SS) as the standard for diagnosing and assessing severity of an Individuals Fibromyalgia. In 2012, the Social Security Administration deemed Fibromyalgia as a lifelong chronic condition which meets the criteria for disability benefits. In 2013 a blood test came available called FM/a Blood test by Epigenetics. This blood test to detect and diagnose Fibromyalgia successfully passed clinical trials in the United States and received FDA Approval. Since its’ introduction in the United States, the FM/a Blood Test has also come available in several other countries including Canada, Puerto Rico, Mexico, Central and South America, Turkey, Australia, New Zealand, Hong Kong, and many parts throughout Europe. Further, the FM/a Blood Test is covered by several health insurance plans along with Medicaid and Medicare HMO’s. Finally, while the root cause of Fibromyalgia is unknown, research has identified 4 triggers which increase the likelihood of developing Fibromyalgia:

1. Biological: Fibromyalgia tends to run in families which can lead to increased risk of developing Fibromyalgia
2. Serious/Repetitive Physical Injuries, Sports Injuries, Surgery, Physical Trauma, Car Accidents
3. Serious Physical Illnesses i.e. Autoimmune Disorders, Serious Virus Infections like Epstein–Barr virus (EBV) Chronic Fatigue Syndrome, Cancer, Gulf War Illness
4. Emotional Trauma such as victims of domestic violence, sexual assault, military combat service, Post-Traumatic Stress Disorder

Despite the research and diagnostic tools outlined above, the CDC and NIH have negated to update their websites regarding Fibromyalgia. This is a disservice to both medical providers and patients living with Fibromyalgia. Medical providers reference the CDC and NIH to better understand and treat Fibromyalgia. People living with Fibromyalgia defer to the CDC and NIH to better understand their illness and symptoms. Further, the out-of-date Fibromyalgia information on both sites leads to a peril of medical providers dismissing the severity of Fibromyalgia, refusing to treat individuals diagnosed with Fibromyalgia or deferring patients with this specialized chronic illness to their Primary Care Physician for treatment of Fibromyalgia. This creates an emotional and economic burden for patients as they endure the cycle of “exclusionary testing” to receive an appropriate diagnosis of fibromyalgia, it induces “medical anxiety” for patients when exclusionary testing comes back negative, and this often leads to people with Fibromyalgia feeling invalidated, hopeless, and increases risk of suicide. (Research Source: “Mortality in a cohort of Danish patients with fibromyalgia: Increased frequency of suicide”  Dr. Lene Dreyer et al. published June 2010). By updating their websites, the CDC and NIH can circumvent this vicious cycle, keep medical providers properly informed on the most up to date information on Fibromyalgia, which leads to improved, proper treatment for those living with Fibromyalgia.

With that said, I am advocating on behalf of those living with Fibromyalgia, imploring the CDC and NIH update their websites pertaining to Fibromyalgia information which will promote better understanding of Fibromyalgia, improve continuity of care for patients with Fibromyalgia, improve medical providers understanding of Fibromyalgia, reduce the length of time (average 2-5 years) a person waits to receive an appropriate diagnosis of Fibromyalgia, and help promote better outcomes for those living with Fibromyalgia.

I also want to express my humbled and sincere gratitude to the following Organizations and Advocates who support this advocacy initiative:

The Fibromyalgia Pain Chronicles, Veteran Voices For Fibromyalgia, BetterDays, Chief UnCut: Whole Energy Now, Cleveland American Veterans Association, Fibromyalgia Care Society of America, Inc., International Pain Foundation, Looms4Lupus, Men With Fibromyalgia, My Several Worlds, National Alliance of Fibromyalgia Advocates, Power Beyond Psoriasis, Rally Around Tally, Rare Candace, ITP: Patient Driven Research Initiative, Support Fibromyalgia Network, Syndio Health, Topricin and Topricin Fibro Cream. 

A Total Of 100,000 Signatures Will Be Needed. Thank you to everyone who read, signed, and shared this petition to help reach our 100,000 signature goal! By signing this petition, you help support the Fibromyalgia Community and Amplifies Our Voices!

Peace, Love and Light,
Kristal Kent – Fibromyalgia Patient and Advocate