Large study of ME patients finds high rates of hypermobility, fibromyalgia, signs of intracranial hypertension and Chiari — I just wanted to share with you a very important new study for anyone with myalgic encephalomyelitis (ME), hypermobile EDS (hEDS), or fibromyalgia. In my view, this publication has brought us closer to finding the cause of ME symptoms for a significant subset of patients than anything I have ever…

How could post-infectious ME result from pathologies like CCI or cervical stenosis? There are precedents. Here are three examples from elsewhere in the medical literature of how infection can damage the cervical spine and cause brainstem compression — My last two pieces explored the possible relationship between brainstem compression and dysautonomia, and how compression, stretch, or deformation of nerve tissue can cause ischemia (low blood flow) to the brain and spinal cord. This ischemia in turn results in a host of downstream metabolic consequences like low oxygen, a…

How I think brainstem compression and tension on my spinal cord caused my symptoms of post-exertional malaise — In 2016, Dr. Peter Rowe at the Johns Hopkins Pediatric Chronic Fatigue Center published a study in PLOS One that went mostly unnoticed. …

How craniocervical instability and brainstem compression might have caused my ME symptoms — TL:DR? Here’s a brief summary: If you squish the brainstem from the front or the back, it could plausibly cause symptoms of dizziness, vertigo, sound sensitivity, GI dysfunction, immune dysfunction, POTS, sleep disturbance, facial numbness, chronic inflammation and a bunch of other symptoms. …

Continued from: Onset: Part II (Mold damage) I’ve previously written about how a bad mold exposure and my acute, viral onset of myalgic encephalomyelitis (ME) could have directly and indirectly damaged my connective tissue, including the ligaments in my neck, causing craniocervical instability (CCI). …

A few weeks ago, I had the chance to visit Whitney again. This time, he was going to the hospital to have his jejunostomy tube (“J-Tube”) replaced. …

Continued from Onset: Part I (Viral onset) It was 2008. I was living in Beijing. I’d just changed house, moving into a room that had opened up in an apartment a friend was renting. Because I’d been in Africa for two months, I moved in sight unseen. It was a…

It started with a high fever. Of that much I am sure. Like 80% of people with Myalgic Encephalomyelitis (ME), I can remember an infection, and a very clear before and after. Everything else is a mystery. …

The Stanford Chronic Fatigue Syndrome Research Center would love the participation of patients with diagnoses of both Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Craniocervical Instability (CCI) in an ongoing ME/CFS research study. They are looking for patients who: Have been diagnosed with ME/CFS Have been diagnosed with craniocervical instability (CCI) Are pre-surgery, post-surgery, or not planning to have surgery