Before you read: I began experiencing ME/CFS symptoms shortly after a bout of mono more than 10 years ago. I was finally diagnosed with ME/CFS roughly 7 years ago, had “moderate” ME/CFS for about 5 years, and over the past 2 years I have experienced marked improvement. I’d say I’m about 90% recovered, or in near-remission. Recovery is relatively uncommon and not well-researched. I’m here to share my story in the hopes that it’s helpful to other patients and researchers.
If you are a person with Chronic Fatigue Syndrome (also called Myalgic Encephalomyelitis, or collectively ME/CFS), you may have had doctors, friends, or family tell you that it’s “all in your head.” Maybe it’s just stress — you need to relax more. Meditate. Or, it’s past trauma that needs to be confronted and healed.
Or, even worse: you are lazy, a hypochondriac, or you’re just being too delicate and need to suck it up and try harder.
If you’re like me, these are things that also went through your own head, without anyone having to say them out loud to you. So, when I began reading about behavioral and mind-body therapies for treating ME/CFS, I had some mixed feelings. Those who haven’t undergone these therapies for ME/CFS are often very curious about the personal experiences of those who have — without the filter of a business owner’s claims, or vague summaries from a study that fail to give a sense of the participants’ subjective experiences.
So, for the inquisitive person with ME/CFS (or an ally), I’m sharing my experiences with some of the more common, but still controversial, therapies for ME/CFS. There are more of those than I could possibly try in a lifetime, but I did manage to get through Graded Exercise Therapy (GET), Cognitive Behavioral Therapy (CBT), and the Dynamic Neural Retraining System (DNRS).
GET and CBT were, until recently, recommended by many doctors and institutions in the US and are still recommended in some other countries. Research on GET/CBT has been scrutinized, and its inclusion in the Cochrane review has been questioned for the following reasons: “GET not only fails to objectively improve function significantly or to restore the ability to work, but it is also detrimental to the health of≥50% of patients, according to a multitude of patient surveys. Consequently, it should not be recommended” (PubMed).
CBT is a legitimate and extremely common form of psychotherapy, but its use in treating ME/CFS is still hotly contested, depending on the approach used. In some approaches — often those used in GET/CBT programs — the patient is encouraged to believe that their illness is of a “biopsychosocial” nature and they simply need to drop their “illness beliefs” in order to get better. Other CBT practitioners, like the one I worked with, approach therapy with ME/CFS patients as a way to help them cope with the struggles of having a chronic illness, while acknowledging that they have a real, biological illness.
My beliefs about ME/CFS and this suite of therapies has changed over time, and I find that I have a much murkier, more nuanced view of the illness. Is ME/CFS based in the brain? Other systems in the body? Everything? I don’t know the answer—all I can say with any certainty is what I’ve been through.
GET and CBT
The first of these therapies I attempted was Graded Exercise Therapy (GET). This wasn’t part of a controlled study, but I did work with two physical therapists in the USA to hash out a GET plan based on any existing guidelines they could find. They were both incredibly understanding, nonjudgmental, and more than willing to do some research. I went to the PT clinic twice a week for several months, where they checked on my ability to do the minimal exercises I’d been “prescribed,” asked me about my activity level for the week, and how I was feeling.
Unfortunately, after what seemed like a tiny amount of improvement, I gradually became worse over a period of several months, during and after my course of GET. I can’t say exactly why this happened, but it may have been the fact that I didn’t have a proper sense of “pacing” — a relatively common concept in management of ME/CFS and other fatigue and pain-related illnesses. Aside from my little exercises, I was trying to do everyday things — a very short walk with my dog, a trip to the store, cooking dinner, etc. Even these minor activities could cause me to crash, and I don’t think that was something my physical therapists had considered in my course of treatment.
Around the same time I began GET, I also underwent Cognitive Behavioral Therapy (CBT), and did so for several years. I was fortunate to have a kind and compassionate therapist who understood that ME/CFS is a real illness, and much of her work with me involved coping with life as a chronically ill person: letting go of unrealistic expectations, focusing on self-compassion, communicating with family, managing worries, and doing what little bit I could to contribute to the world in a way that brought me some joy and satisfaction.
This was somewhat helpful, but my ME/CFS symptoms remained at much the same level they had been for two or three years. So, having tried the standard therapies for CFS at the time, I ventured out on my own. Again.
Dynamic Neural Retraining System (DNRS)
Feeling like I had nothing to lose, I purchased the Dynamic Neural Retraining System (DNRS) DVDs and workbook. I’m not here to tell you that it cured me — it didn’t — but I’m also not here to tell you it was completely useless. Brain retraining systems are a deeply polarizing thing in the ME/CFS community. People typically see them as profit-mongering pseudoscience, or — in the case of those who’ve had success with them — they see them as the key to recovering from CFS.
In short, the creator of the DNRS system, Annie Hopper, believes that something has gone awry in the brain and central nervous system of people with ME/CFS and other related conditions. A ME/CFS sufferer herself, she spent many secluded hours digging through research on the illness, and she formed her own makeshift hypothesis. According to her, our whole system is trapped in a loop of sensing “danger” and then triggering a jubilee of agonizing symptoms, which then sound off more alarm bells, causing more symptoms. Other folks in the ME/CFS brain retraining business have come to the same conclusion, but it’s important to remember that these are well-intentioned (I hope) lay people running a business — not teams of medical researches.
In order to “rewire” or reset this malfunction, Hopper developed a series of actions and words to perform whenever you feel symptoms coming on, or whenever you feel negative thoughts or emotions come up. I’m only briefly summarizing the information here because the full program is copyrighted. It’s inspired, in part, by neurolinguistic programming and other mind-body paradigms. Some of her writing cites actual scientific research, but its application within her program is extremely dubious.
I wasn’t thrilled with the secretive, sales-y approach of the program and others like it. The only “reviews” of the program on her website were overwhelmingly positive, and research on related programs is limited and poor in quality. But, at this point, I was willing to try almost anything that didn’t seem obviously harmful.
So, for several months, I stuck with the the DNRS program. It was time-consuming, but I did find that my brain fog lifted noticeably, I had more energy, and I could do more in general. I was going for short walks, thinking more clearly, and no longer experiencing near-constant pain.
To my disappointment, this only lasted about 6 weeks before I started crashing again.
Up and down the rollercoaster
I was left feeling frustrated and discouraged. I couldn’t figure out why DNRS had seemed to work for me, and then stopped working. It’s hard to say exactly what caused the downturn, but I do remember pushing myself to do more and to increase my physical activity at a greater degree than I had before. When you try a program like this, there’s no doctor or physical therapist to guide you along, nobody to tell you exactly how much to do and how much to rest. You’re entirely on your own.
I only did the program for 3 months before fizzling out in my DNRS routine. The author insists that you do it consistently for 6 months in order to see lasting benefits. If you don’t feel better, you just need to keep at it. There are many success stories coming out of that program and those like it, but we don’t hear much about the worst outcomes or the mediocre ones. If you fail to improve, well — that’s on you.
That’s one of the biggest criticisms I have of approaches like this — there’s no way, currently, to show what exactly is going on in the brains and bodies of people who improve or don’t improving while engaging in “brain retraining.”
And yet, despite the program’s lack of scientific support and the almost-cultish vibe I got from it, I was left with the niggling feeling that I could somehow bring back that glorious improvement I’d experienced for several weeks. I wasn’t sure exactly how, but now it seemed…possible.
I was left with a lot of unanswered questions:
- Was the program working for me, and was the DNRS creator right about what was going on in the bodies and brains of people with ME/CFS, fibromyalgia, and other mysterious conditions? How could this be studied?
- Why didn’t my improvement last? Should I have “pushed through” and continued with it?
- Was I experiencing the placebo effect? Could I use that to my advantage?
- Was this just a coincidence — a temporary remission?
- How could I experience that improvement again?
After my brief improvement with the DNRS program and my subsequent crash, I was once again fed up and ready to try something new. My experience with brain retraining had created an itch that demanded scratching, again. I decided to keep trying to recover from ME/CFS and learning from people who, apparently, had done it before.