Fibromyalgia and ME/CFS Spinal Resource Center

The idea that craniocervical instability (CCI)/atlantoaxial instability (AAI) (and allied issues) might be causing all the symptoms in some people with chronic fatigue syndrome (ME/CFS) sprang to life in 2018 when Jeff Woods charted his own harrowing but ultimately successful journey back to health following spinal surgery. Since then several well known ME/CFS patients (Jennifer Brea, Julie Rehmeyer) and others have been diagnosed with CCI/AAI and some have had surgery.

Other studies and case reports indicate that other spinal issues such as spinal stenosis, intracranial hypertension and cerebral spinal fluid leaks may all play a significant role in some patients. One study found intracranial hypertension present in most people with ME/CFS.

Blogs

Craniocervical Instability, Tethered Cord Syndrome, etc.

• Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia & POTS? The Spinal Series – Pt. I
• Jennifer Brea’s Amazing ME/CFS Recovering Story: the Spinal Series – Pt. II
• Cervicocranial Instability, Neurosurgery and M.E.: Just the Facts Please – A Editorial from Jeff Wood

Other Spinal Issues

• Could Myalgic Encephalomyelitis be a Chronic, Ongoing Traumatic Brain and Spinal Cord Injury – That is Exacerbated by Exertion? – Jeff Wood
• Spinal Stenosis, Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: The Spinal Series #3
• Under Pressure: Large Spinal Study Finds Intracranial Hypertension Common in ME/CFS
• Pressure Building? Study Suggests Cerebral Spinal Fluid Pressure May Be Causing Problems in Chronic Fatigue Syndrome
• The 2018 Dysautonomia Conference Pt. II: Could You Have a Spinal Fluid Leak? An ME/CFS, POTS, FM Perspective
• Through the Looking Glass: Cerebral Spinal Fluid Leaks & Ehlers Danlos Syndrome – an Alternate Reality to ME/CFS?

Survey

• Chronic Fatigue Syndrome (ME/CFS) & Fibromyalgia Spinal MRI Results Survey

Other Sites

MechanicalBasis.org – Jeff Woods shows how structural problems in the spine can produce the symptoms of ME/CFS and provides advice for those exploring this complex issue.  Plus check out Jeff’s amazing story. Jeff also provides a consulting service.

Jennifer Brea’s Medium site – , Jennifer Brea, the creator of Unrest and the cofounder of ME Action, details her craniocervical instability (plus) story – plus provides reviews of spinal study findings that could apply to ME/CFS.

Phoenix Rising Forums 

• A 100 page plus thread exploring craniocervical and other spinal issues in ME/CFS.
• A thread tracking CCI/AAI and other spinal issue treatment outcomes