What is ME/CFS and why is it so stigmatized?
The human body is pretty amazing. It can also be a catastrophic nightmare if something goes really wrong. I’m a little disappointed we all didn’t get an owner’s manual, with a section on troubleshooting.
I have a chronic illness called ME/CFS (Myalgic Encephalomyelitis), also known as CFS or Chronic Fatigue Syndrome, and I mainly talk openly about it because of the surrealness of the condition — in very severe states, it is compared to having end-stage AIDS, but for months, years, or even decades — and for the fact that there is no approved treatment worldwide and, of course, no cure.
Few of the experimental or alternative treatments for it are covered by health insurance, hospitals don’t treat the condition nor do they accept patients who have it for extended stays, doctors are not taught it in medical school despite the disease having been around since before the 1950s, and the general public is largely unaware that it even exists, despite it afflicting up to 30 million people globally.
In 1955, there was an outbreak of the disease at the Royal Free Hospital Group in London. Fifteen years later, two prominent psychiatrists decided, without proper evidence and having never seen a patient, that the disease was “mass hysteria,” psychosomatic, all in the person’s head, and that stigma spread and persisted for decades … and, in some circles, it is still believed today. However, research in recent years has shown that ME/CFS is indeed a very real, serious, biological disease that affects multiple body systems.
Sadly, funding for the disease by the NIH (National Institutes of Health) in the US has been historically low. Abysmal, actually. Several years ago, I read that more research funding is allocated toward male pattern baldness each year than to ME/CFS.
The experts who currently study it today, whether via government or private funding, all agree that it is an extremely complex and difficult disease to solve. The estimated recovery rate for someone with ME/CFS is a mere 5%. And those who recover, each seem to recover in various ways that aren’t necessarily replicable.
Sometimes, we don’t even know why these patients recover or if they even truly had ME/CFS in the first place, as there are currently no biomarkers for the disease. There are a certain set of symptoms one must have to receive a diagnosis, however, the prominent ones being PEM (post-exertional malaise) — a worsening of symptoms upon mental or physical exertion — unrefreshing or nonrestorative sleep, cognitive dysfunction, and persistent, unexplained fatigue for more than six months.
Most patients fall ill with this condition after a viral infection. In my case, it was a virus followed by two weeks of severe emotional stress that triggered the illness.
Spouses, parents, family members, etc., are forced to become caregivers to their very sick family members, with no governmental support. Money is spent on alternative treatments and supplements and healing modalities, all out-of-pocket. Patients and their families can spend thousands, tens of thousands, and in some cases even hundreds of thousands of dollars on experimental treatments that come with no guarantee of success. Many patients set up GoFundMe sites to help cover some of their medical costs.
I was fortunate enough to receive some generous donations through my GoFundMe campaign and have used the money for ongoing care with an integrative medicine specialist. I consider it nothing short of a miracle that I had improved for a full year in 2023 — from severe and bedridden to moderate and unbedridden — via treatment with said medical specialist.
Now I’m back down again from a setback, in bed mostly, but I still keep hope alive. The year I’d improved, I hit six baseballs down at the field one day with my son after having been severe and bedridden for six years. I try to remember that.
I don’t know what the future holds. None of us do. But I keep open the possibility, however small, of another miracle happening for me.
I’m not an big advocate for this disease either, not by any means. Just a regular guy who wants a better quality of life, like the rest of us with this horrendous condition.