The Blog of David M. Conte

Tag: Chronic Illness

  • “A Forgotten Illness”

    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.

  • “Parenting with My Life-Altering Chronic Illness is Like Walking on Glass Both Barefoot and Naked”

    And you’re prepared for none of it

    Across from my bed, Charlie sat in the glider chair playing a video game on my phone. I’d been tasked with watching him, five years young, for an hour as I lay in bed. My wife had to take our other son to baseball and didn’t want to bring his little brother along this time.

    As I turned over laboriously on my left side in bed, I asked Charlie if he could stop for a minute and come give me a hug. He immediately obliged. When he climbed onto the bed and bent down to hug me, however, he accidentally kneed me in the balls. “Charlie, you kicked Papa in the balls,” I said.

    “Sorry,” he said, smiling.

    Later, I heard him downstairs having a meltdown. Instantly, I felt the urge to comfort him but because I was flaring with chronic illness symptoms and confined to bed, that wasn’t going to be a possibility.

    Or was it?

    Knowing Charlie was in distress and that his little brain couldn’t figure out how to manage his emotions, I immediately set a bold plan in motion. Slowly rising up in bed, I stepped onto the floor and panned the room like Arnold in The Terminator. No neighbors’ kids were lurking in the corner waiting to blast me with sawed-off water guns. No evidence of foul play, such as a half-eaten yogurt on my nightstand left by my oldest son, a bag of Cheez-Its on the floor, or a bottle of bad cologne on the dresser.

    I saw him hitting his mama in the shins with his small fists when I finally made it downstairs. “What kind of shit is going on — ?” I muttered to myself.

    “NO, Charlie. NO. Charlie? I said to stop hitting me. You’re hurting me. Charlie!”

    The lactic acid in my body was building up as if I were a Solo Stove portable fire pit. I walked over to Charlie, who was like Jake Paul training for his fight against Mike Tyson. Mama’s shins were getting pummeled.

    I managed to get down to his level without my GI symptoms rendering me motionless in the fetal position on the floor. His face was covered in dirt, he had green chalk all over his forehead and knees, and tears were streaming down his face.

    “Charlie, honey,” I said, grabbing his wrists mid-punch. “It’s okay.”

    He cried some more. “I’m going to take you upstairs, clean you up, and you’ll listen to some music with Papa and play on your IPad.”

    His breathing slowed and he began to calm himself. I put my arms around him and hugged him. “It’s okay, my son. You’ll come up with me.”

    Charlie wiped his tears and gave me a crooked smile.

    But then I suddenly remembered I was very fatigued and symptomatic. And that maybe lying on the kitchen floor for a respite and yelling, “At least my mama loves me,” wouldn’t be all it was cracked up to be.

    I thought about asking Charlie if he might carry me back upstairs to my bedroom. At that point, Mama had left the scene and was presumably flying one-way, first-class to Costa Rica.

    I accidentally farted loudly. The pressure of the moment was getting to me.

    “Let’s go, Charlie,” I said, “sit with me here for a minute. Quick.” I safely made it to the dining room and sat on one of the crayon-stained, chicken nugget-stained, strawberry-stained dining chairs.

    I faced the chair next to it that looked like it had been previously shat on by a bison, pushing it back just far enough to put my feet up on it.

    I closed my eyes and started some slow nasal breathing. Charlie hadn’t stabbed me in the neck with a nearby blunt object, so I figured I’d be okay for a few minutes.

    When my symptoms started to abate, I knew it was time to haul my chronically ill keister back upstairs. Charlie came in tow.

    Back in my bedroom, I collapsed on the bed, totally worn out from the parental crisis intervention.

    “Alexa, play ‘Thunder’ by Imagine Dragons,” I heard Charlie say.

    “Just a young gun with a quick fuse. I was uptight, wanna let loose. I was dreaming of bigger things. And wanna leave my old life behind,” played from my Alexa. Charlie hopped up on my bed and started jumping around to the music.

    “Charlie, I’m gonna puke. Stop jumping, please,” I growled.

    Charlie kept jumping.

    “Alexa, play ‘I Go to Extremes” by Billy Joel,” he then said.

    “Good God,” I said, closing my eyes. “I gotta clean you up. Give me a couple of minutes. We need some baby wipes. Do we have baby wipes?”