Chronic Illness, Ponderings

My ME/CFS Recovery, Part 1: Everything that Didn’t Work

I’ve had Chronic Fatigue Syndrome (also called Myalgic Encephalomyelitis, or collectively ME/CFS) in varying levels of severity for almost 10 years now. For the past two or three years, I have experienced gradual and nonlinear improvement in my health.

I can never be sure if my improvement is permanent, but what I’ve experienced along my ME/CFS journey has given me some hope that improvement and recovery are possible. It’s my hope that sharing recovery stories may spur interest in researching why some people recover or improve, why some don’t, and how we can best support ME/CFS patients around the world.

My ME/CFS began the way it does for many people — I came down with a bad case of mono (aka glandular fever) at age 27 and never felt quite right after that.

It seemed like every time I started to feel a little better and tried doing a little more exercise or physical activity, I’d get “sick” all over again. Over the course of a year or two, I went from “crashing” after a workout to “crashing” after sweeping the kitchen floor. For a year or so I could only make two or three short trips outside the house per week. Cooking a big dinner or going grocery shopping could leave me feeling sick and exhausted for several days. My symptoms would change over the course of a day, a week, a month, with new symptoms cropping up constantly.

At my worst, I could not follow a TV show, digest food unless it was blended into a puree, or walk up a flight of stairs without debilitating symptoms afterward. I was never a “severe” ME/CFS patient, but I was still miserable. I desperately wanted to work and be social again. I’d left a job I loved in a field I was passionate about. My body just would not cooperate and do what my brain wanted it to do. I missed my old self — the one that enjoyed hiking, jogging, dancing, rock-climbing, and helping out friends and family when they needed it.

On most days, I was experiencing a collection of symptoms that are familiar to ME/CFS patients and their doctors:

  • severe fatigue
  • unrefreshing sleep
  • recurrent low-grade fever
  • cognitive impairment
  • dizziness
  • vision problems and perceptual problems (the feeling of being in a video game…I can’t explain it with words)
  • pain and aching in my legs and lower body
  • headaches
  • sore lymph nodes
  • gastroparesis
  • numbness in my limbs
  • loss of smell and taste

So yeah, not a pleasant experience.

What the heck was going on?

I also happen to be a science enthusiast and a proponent of medicine based on robust research. I saw dozens of doctors and got scores of tests: multiple GPs, gastroenterologists, neurologists, rheumatologists, a specialist at a prestigious Boston hospital who was researching ME/CFS, and — reluctantly — an integrative medicine doctor.

The tests almost always came up normalOne of my immunology tests showed “poor functioning NK (Natural Killer) cells,” which is not an uncommon finding for ME/CFS patients. It was a dead-end, though. I had no detectable autoimmune disease. No Lyme Disease. Nothing. At this point, my GP diagnosed me with ME/CFS, and this diagnosis was corroborated by the doctor/researcher I’d seen in Boston.

In terms of previous health concerns, I’d had seasonal and pet allergies all of my life, plus the occasional migraine with aura. But none of those things had prevented me from exercising, going to school, working, or otherwise living as I wanted to. I’d even struggled with chronic insomnia, but it was nothing compared to the crushing fatigue and weakness of ME/CFS.

What didn’t work

So, I did what I’d always been told to do when feeling unwell: I did what my doctors recommended, and then some. I took medications. I did my research. I experimented with acupuncture and herbs and special diets, clinging to any small shred of hope that they might work.

I tried so many things that didn’t end up helping, including:

  • resting more
  • GET (Graded Exercise Therapy) — this therapy is generally no longer recommended for ME/CFS
  • antivirals at a high dose (Valacyclovir)
  • loads of antibiotics (one doc thought I had a recurrent sinus infection)
  • elimination diets
  • gluten free diet
  • grain free diet
  • dairy free diet
  • allergen-free diet (after a food allergy blood test that turned out to be bogus)
  • countless supplements and herbs
  • CBT (Cognitive Behavioral Therapy)
  • allergy shots and allergy medications
  • acupuncture
  • meditation and relaxation practices

Often, when trying something new, I would feel better for a few days, maybe even a week. But I would always come crashing down again.

I tried to think my way out of it. Ignore it. Accept it. Be more relaxed. Do less. Do more. Do meditation. Nothing helped.

As I suffered and became more dogged in my pursuit of a cure or at least some improvement, the same questions kept coming up in my mind. How could so many symptoms come and go like this? What was triggering them? How could they develop in someone like me, or any of the people who develop ME/CFS? And most importantly, what did the research say on ME/CFS and its causes?

Every study I read seemed to find a potential mechanism underlying each symptom — or cluster of symptoms — but not all of them. Every month or two, a new study would be published, and I would get excited along with the rest of the ME/CFS community. Usually, our hopes were dashed when we realized that no potential treatments would come from the new research and nothing earth-shattering had been illuminated. But, as I read more I noticed that a large portion of the studies indicated some type of dysfunction of the autonomic nervous system and in specific regions of the brain. This research is best summarized by the ME Association in this document, if you’re also curious: MEA Summary Review: The dysfunctional autonomic nervous system in ME/CFS.

This is where I got curious, and it’s what led me into the murky, hope-peddling, and potentially helpful world of brain retraining, which I’ll explore in Part II of my recovery journey.