To: The U.S. Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and the Social Security Administration (SSA)

From: The Fibromyalgia Community

Fibromyalgia affects an estimated 4–10 million people in the United States. For decades, it has been classified as a non-progressive chronic pain condition implying it does not worsen over time.

But the reality lived by millions of patients tells a different story. Many experience increasing pain, fatigue, cognitive fog, and mobility limitations that gradually strip away independence and quality of life. Yet the medical system still treats fibromyalgia as static, often dismissing patients’ experiences or labeling them as psychosomatic.

We are calling on national health and disability agencies to take urgent action to recognize fibromyalgia for what it truly is a legitimate and potentially progressive medical condition that deserves research, resources, and respect.

We, the undersigned, urge:

 1. The CDC and NIH to fund new long-term research on the progression of fibromyalgia, including potential neurological and autoimmune mechanisms.

 2. The American College of Rheumatology to review and update diagnostic criteria to reflect symptom progression and functional decline.

 3. The Social Security Administration to consider symptom progression and flare frequency when evaluating disability claims.

 4. Professional and regulatory bodies to hold clinicians accountable when they willfully deny or spread demonstrably false information about fibromyalgia in ways that harm patients. This includes:

 • State medical boards reviewing complaints of intentional misinformation.

 • Major medical associations issuing clear guidance affirming fibromyalgia as a legitimate medical condition.

 • Medical schools and continuing education programs requiring accurate, evidence-based training about fibromyalgia.

These steps will protect patients, reduce harmful misinformation, and improve care across the nation.

Fibromyalgia may not destroy organs or joints, but it destroys careers, families, and mental health when dismissed. Recognition is the first step toward healing and hope.

We are not asking for sympathy  we are demanding recognition, research, and reform. 💜

#FibromyalgiaAwareness #FibroWarrior #FibroIsProgressive #InvisibleIllness #SunshinelightCares

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🪶 Short Summary

Millions with fibromyalgia experience worsening pain, fatigue, and cognitive decline over time, yet it’s still labeled as non-progressive. We demand recognition, research, and accountability to ensure fibromyalgia is treated as the real, progressive disease it is.