In October 2017, at the Q&A following the London theatrical premiere of Unrest, a woman stood up and asked, “Why aren’t you talking about recovery?” She claimed to have gotten well from Myalgic Encephalomyelitis (ME) after a combination of what I can only describe as Lightning Process-like “cognitive training” and group dancing.

I’ve always hated recovery stories. Not because I am not thrilled for the person who managed to find their way to better health — I am. Rather, I hate the way these stories can distract from the essential truth: there is no scientifically validated path out of this…


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 read. I know that is a bold statement. I hope the research to follow will help us better understand if that is indeed true and if so, what we can do about it.

A group of clinicians in Sweden collected preliminary data from 234 #MECFS patients meeting the Canadian Consensus…


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 switch to anaerobic metabolism, increased lactate, and inflammation. I hypothesized that these metabolic consequences could actually constitute (be one in the same as) post-exertional malaise (PEM). …


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. In it, he took sixty patients with chronic fatigue syndrome diagnoses and twenty healthy controls, laid them flat, then raised one of their legs for fifteen minutes to see what would happen.

If I had read this piece in 2016, before any of the things I’ve experienced in the last year, I would have found the study bizarre. What could this possibly have to do with my metabolic, inflammatory disease? …


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. If you can relieve that pressure, it is plausible that it can help improve or resolve those symptoms.

In the last set of articles in my CCI + tethered cord series, “Onset,” I examined how a severe mold exposure along with a viral infection could have weakened the ligaments in my neck, causing craniocervical instability (CCI). …


Continued from: Onset: Part II (Mold damage)

Collagen fibils

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 key mediator of that damage might have been mast cell activation and collagen-degrading enzymes.

The coup de grâce (and it really was, oddly, a “stroke of grace”) was the thyroid surgery that took a “mild,” purely biochemical case of CCI and turned it into a symptom complex clear and severe enough to be diagnosed.

I…


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. Whitney can no longer eat via his mouth, esophagus and stomach; but his J-Tube allows him to ingest liquid foods delivered directly to his small intestine.

To tolerate the trip to the hospital and the procedure itself, Whitney is administered IV Ativan, a drug that temporarily opens up what is otherwise a keyhole of an existence. He can take it only but rarely. Otherwise, he would habituate. …


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 very old building in a very old hutong. In that neighborhood was a rhythm of life that was rapidly disappearing and probably now gone entirely. I loved it. Moving to that apartment, however, would turn out to be the most serious mistake I have ever made in my life.

The…


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. Even though I can point to the trigger that seemingly started this all, I will never, can never, know exactly why or how I got sick.

What I do know with a high degree of certainty is that the mechanism underlying most of my ME symptoms was craniocervical instability. For more than seven years, my head was sinking on my spinal column due…


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

The aim is to compare how ME/CFS patients with CCI are similar to or differ from other ME/CFS patients and healthy controls, and to measure changes (if any) in patients pre — and post — surgery.

If you are interested in participating, email Anna Okumu at aokumu@stanford.edu. Please put “CCI” in the subject line.

Jennifer Brea

Maker of @unrestfilm. Plotter of revolution @MEActNet. Wife of @owasow. http://jenniferbrea.com

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