Encephalo...what?

ME/CFS 101: The most disabling disease you've never heard of.

So, you want to help but you’re feeling a bit unsure about your ME/CFS knowledge. No problem! I’ll try to cover some basics here, but the “what, how and why” of ME will be a common thread running through the blog. The past 20 years, or so, of biomedical research has cracked open a lot of the mystery behind this disease. The underlying pathology is slowly revealing itself and the puzzle pieces are being put together. In addition to being just plain offensive, it appears the label “chronic fatigue syndrome” is far from accurate or appropriate for this disease.

Let’s get started with one hell of a graphic I found online.   

According to Solve M.E. (donate here), ME/CFS is, “… a chronic, complex, neuroimmune disease that profoundly limits the health and productivity of patients and, like Long Covid, is often triggered by an infection.”

The Open Medicine Foundation (donate here) states, “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a life-altering multi-system chronic, complex disease.”

Ok, so it’s “complex” and it’s “chronic” but what IS it? The US ME/CFS Clinician Coalition expands on it a bit by saying it’s,

“…characterized by a significant impairment in daily function, exertional intolerance, sleep abnormalities, orthostatic intolerance, cognitive dysfunction, and profound fatigue. Significant functional limitations in physical exertion, cognitive processing, memory, attention, sensory processing, and social interaction are common. The hallmark and seemingly pathognomonic symptom is “post-exertional malaise” (PEM), in which baseline symptoms are exacerbated by physical or cognitive exertion, often for a prolonged period after the exertion has been completed.” U.S. ME/CFS Clinician Coalition  

I think of ME as a disease of intersections—it’s a systems disease, not a system disease. Something initiates a cascade of horrors that takes advantage of the various intersections between systems. For many, the initiating event is an infection (as we’re seeing SARS-Cov-2 virus cause Long Covid after the acute infection). The infection produces an immune system response and from there things start going horribly wrong. Dominos begin to fall as other systems become involved. Evidence of neuroinflammation and autonomic nervous system dysfunction, defects in cellular metabolism, abnormalities in our gut microbiome, genes expressing for inflammation and pain after exertion (that’s the PEM often mentioned) …the list goes on. Most likely, the immune system is the initial domino to fall, knocking over the nervous system, endocrine system, gastrointestinal system, and on and on. Although it appears to be a disease that can remit and relapse, it also appears to have a very low recovery rate. Personally, the worse I get, the harder I’m finding it to regain ground.    

Like a lot of diseases, ME exists on a spectrum. I’ve experienced a progression, for example, from mild to severe. I’ll cover that in a future post. I’ll also try to bring you some of the research being done so we can watch the puzzle pieces come together.

Check out some videos and when you’re done, take a minute to write your Senators and Representatives using the template provided in my previous post. There are more advocacy projects coming soon! As always, if you have an idea for an advocacy project and would like to explore it more, please let me know.

This 7-minute video provides a fairly comprehensive look at the disease and the complicated landscape patients and researchers are navigating.

This 17-minute Ted Talk by Jen Brea, ME/CFS patient and amazing advocate, is a profoundly important look at this disease.