Three Cases of Severe ME/CFS in Adults, 2021, Williams and Issacson-Barash

Abstract

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, only partially understood multi-system disease whose onset and severity vary widely. Symptoms include overwhelming fatigue, post-exertional malaise, sleep disruptions, gastrointestinal issues, headaches, orthostatic intolerance, cognitive impairment, etc. ME/CFS is a physiological disease with an onset often triggered by a viral or bacterial infection, and sometimes by toxins. Some patients have a mild case and are able to function nearly on a par with healthy individuals, while others are moderately ill and still others are severely, or even, very severely ill. The cohort of moderately to very severely ill is often housebound or bedbound, has lost employment or career, and has engaged in a long, and often futile, search for treatment and relief. Here, we present three case studies, one each of a moderately ill, a severely ill, and a very severely ill person, to demonstrate the complexity of the disease, the suffering of these patients, and what health care providers can do to help.

Open access, https://www.mdpi.com/2227-9032/9/2/215/htm

 

I read the paper. It is in some ways really haunting. i note that the authors are affiliated to Massachusetts ME Association, so either patients or caregivers.

The 3 case studies share similarities:

1) a great deal of doctor shopping, many attempts with alternative medicine, difficulty accessing care, and being treated with the presumption there is a bacterial or viral infection still raging (though the authors note there are only traces of said bacteria or virus).

2) The amount of suffering is huge. One patient took her own life. The disease spanned several decades. It simply doesn’t evaporate.

3) Disability insurance companies do not want to pay. We still fall prey to them to this day, and Long-Covid patients are just getting a taste of what it’s like.

4) Dr Systrom has been visited, and he has diagnosed 2 of these patients with pre-load failure. Is there anyone replicating the study?

5) there is still an abysmal number of physicians treating ME that we can actually tell which doctor patient #3 consulted. And who presumably measured the mitochondrial functioning. We can still count the number of physicians out of our fingers.

6) Alternative medicine and diet doesn’t work.

 

Another similarity that struck me is the way all 3 cases initially tried to maintain a semblance of normal life, then tried to adapt their lifestyle in order to do so - they showed remarkable grit in the face of adversity - yet overall, apart from some temporary partial remissions, they all continued to deteriorate. Additional infections played a part in this but it's hard not to conclude that years of battling on through ever-increasing symptoms didn't play a role.

This narrative contrasts with the much more common one of people falling ill with some virus and seamlessly transitioning into whatever level of severity of ME they end up with. I'm sure this "simple" way into ME happens for some people but for many others it's just so much more messy.

 

My illness has been fairly consistent over the 12.5 years i have been sick now, past the initial storm that was my first 6 months. I completely agree that some have a relapsing and remitting presentation or a deep dive into severely ill as time goes by, probably like MS. We are still in the initial stages of understanding the disease and the likelihood that there are several subsets.