Note: 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, and over the past 2 years I have experienced marked improvement (see Parts I and II). I’d say I’m about 90% recovered, or in a partial 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. I am not sponsored by any company.
If you’ve arrived here wondering how a person gets better from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), you’re in good company.
I’m also curious.
Unlike most people with ME/CFS, I seem to be recovering from ME/CFS, but I can’t tell you exactly why.
Some “recoverees” — and there aren’t many of us — will tell you exactly what helped them. Sometimes they point to one specific diet, drug, method, or change in lifestyle. Others might give an exhaustive list of things that slowly chipped away at the fatigue, and the relentless and varying symptoms. Some are just as befuddled as I am.
There’s not nearly enough research on ME/CFS to be conclusive about why some people recover or have long remissions and others don’t — and whether or not those two groups do something differently. There’s a lot of controversy around recovery stories, especially when they attempt to generalize recovery to all patients or point to a root cause of the illness when, in fact, there’s not enough information to support those claims.
With this ambiguity and controversy in mind, I have chosen to share my recovery story in the hopes that it might be helpful to someone with ME/CFS. I only knew about the possibility of ME/CFS recovery from other people who’d recovered from it. Some of those stories were dead-ends for me, but others were helpful. I wanted science to find a cure for this illness — I still do — but I was tired of waiting around for that to happen.
It’s also important to note that the things that helped me recover are not often available to people with ME/CFS. I’m talking about money, the support of family and friends, empathetic doctors, the time and freedom to rest, and just enough energy and brain power to explore different treatments and methods. I would argue that all people with ME/CFS should have access to as many of these things as possible, and anyone else struggling with long-term illness and disability. The line between an individual health problem and a societal problem is thin and blurry, so we need to address any external factors that can help or harm people with chronic illness.
With that in mind, here is the continuation of my personal journey in recovering from ME/CFS.
Mind-body approaches: opportunities and limits
Before I developed CFS, I already had a fascination with the connection between mind and body. I had studied medical anthropology in college, practiced meditation off and on for 15 years, and worked for an organization focused on contemplative practices. Out of sheer curiosity, I kept up with research on the effects of our mental state on our physical state, and vice versa.
When I became ill, I expanded my search beyond basic mindfulness meditation and relaxation practices, which hadn’t provided much relief for me. What I found first was the murky world of brain retraining programs for ME/CFS.
Feeling like I didn’t have much to lose, I purchased the Dynamic Neural Retraining System. I’ve written more extensively about my experience with the program, and the creepy Norman Vincent Peale vibe I got from it. I experienced some improvement while doing the program, but it didn’t last more than a couple of months. I didn’t have full confidence in the program because it wasn’t evidence-based, it used pseudo-scientific methods, and was mostly hidden behind a paywall. I took what little useful material I could from it, and moved on.
Over the next two years, I stumbled upon different books and programs that approached chronic pain and fatigue from a perspective of mind-body interaction, often focusing on emotions. I can’t recommend them solely for the purpose of recovering from ME/CFS, because frankly, they didn’t “get me there.” But, for the sake of sharing anything that could be helpful to someone, here are a few that I read or used, and a brief summary of their ideas:
- Reverse Therapy (book): Repressed emotions are at the heart of, or at least aggravate, chronic conditions like ME/CFS. Certain personality traits and life experiences can lead to emotional repression (e.g. perfectionism).
- Burnout (book): When we experience stress, we need to “complete the stress cycle” regularly or else we can experience myriad physical and mental health issues over time. The book is about stress more generally and doesn’t touch on ME/CFS. Not much science here, but the stories were engaging and relatable.
- The Mindbody Prescription (book): Famous for his work with chronic back pain patients, Dr. Sarno argues that many forms of chronic pain and unexplained illness are caused by repressed rag — in a Freudian sense — that can be traced back to childhood. According to him, the body wants to distract us from painful emotions and experiences, so it creates physical symptoms. He never provides solid evidence for the link between emotional problems and physical ailments, and I’m not even sure how accurately that could be studied. Anecdotally, many patients have recovered using his methods, either working directly with him (when he was alive) or simply by using his books.
- Curable (app): Focused more on chronic pain than fatigue, this app was developed by doctors in different disciplines who also suffered from, and overcame, chronic conditions. They draw heavily from the work of Dr. Sarno (and Dr. Howard Schubiner), while incorporating more science-based practices such as meditation and other not-so-sciencey approaches like brain-retraining. If you’re curious about the app and their approach, check out the free Curable podcast, Like Mind, Like Body.
- Related books that I have yet to read: The Body Keeps the Score, The Way Out, Unlearn Your Pain
Each of these books, plus the Curable app, helped me understand the effects of stress and repressed emotions on health, and I did see a marked difference when I tried their recommended practices. This could be the answer to some folks’ ME/CFS, as evidenced by the hundreds, if not thousands, of recovery stories online by people who used mindbody approaches like these.
But, I wasn’t a 100% success story, and we have to take into account those who also don’t recover. We could chalk this up to people “doing it wrong,” not committing fully to the practices, or not understanding the frameworks. To me, that feels like a deeply flawed and unfair assumption.
The best thing I got out of each of these resources was the understanding that my mental state and behaviors could profoundly impact my physical state, even if I didn’t have ME/CFS. Developing better ways of dealing with the adversity of chronic illness, learning to decatastrophize during symptomatic periods, and having more self-compassion have improved my physical and mental state. This helped set the stage for a healthier brain and body, even if it didn’t cure me.
The missing piece(s)
Though I’d seen some improvement in my energy envelope and ME/CFS symptoms, I still felt desperate to truly recover. I kept running into the barrier of doing too much, a problem all too familiar to those of us with this illness.
Doing too much — whether it is laying in a bed with your eyes open too long, or walking a bit too much during the day — can set back a person with ME/CFS days, weeks, or months. To say that pacing is “difficult” is a gross understatement. I longed for an outside expert to tell me exactly how much to do or not do, or a meter on my arm to tell me when I was approaching that nebulous point of “too much.”
I knew I needed to work with someone who had done it before — recovered from ME/CFS or achieved a level of pacing that prevented the ongoing rollercoaster of crashes. So, I took another deep-dive on a costly online program, and enrolled in CFS Health with Toby Morrison. He offers a huge number of informational videos on YouTube, some of which explain the main components of his program, so it didn’t feel scammy or secretive to me.
The program is run by people who have recovered from ME/CFS. They don’t present a cause of or mechanism for the illness, since there isn’t an exact known cause at this point. They use a gentle, multi-faceted approach that helps people prevent overexertion (and therefore, crashes) while very gradually increasing activity, at their own pace. Participants also work on “mindset” and have group meetings.
As soon as I watched the first video about finding your “baseline,” I felt completely at ease. Instead of starting people off with exercise, Toby has you estimate the amount (and types) of activity you can manage throughout the day without causing a crash. Decrease that by about 50%, and that’s where you start. Sometimes it’s not possible to follow this guideline to a T, because many of us have unavoidable responsibilities (children, work, home care), but each person does what they can.
In the program, you decide when and how much to increase your activity. If you crash or experience more symptoms, you take a little break. There’s much more to the program than pacing, but for the most part, it left out most of the “woo” I’d learned to be wary of. The program facilitators had a kind and easygoing manner, and they truly understood what it is like to have ME/CFS. Connecting with patients all over the world and speaking to them in real-time was also massively beneficial, and I still chat with one or two of them since completing the program in January of 2021.
I have to confess that it took many months before I saw major improvement, and the barrier to recovery was simply me. I kept pushing too much, putting pressure on myself to do more, ignoring my physical and mental state, and simply being in denial about the consequences of overexertion. Accepting the limitations of this illness is a hard thing to do, when it all seems unfair and we just want to live our lives. But eventually I did accept my limits, and I started getting better.
The very last “piece” of the recovery pie for me was reading Atomic Habits by James Clear, and I still cringe at the fact that it was another wealthy-white-American-dude-productivity-book that did it for me. His book is a little different than most in its class, however, and I found his “start extremely small” approach to be liberating instead of overbearing.
When I was ready to try exercise again, I used James Clear’s approach to habit formation and did two minutes of very light strength training, adding one minute each week. As long as I was doing something every day for those two minutes — stretching, marching in place, pilates — it counted. Consistency over intensity continues to be my motto, and I am now able to walk 1.2 miles briskly, do 14 full pushups, and 26 squats after three months of keeping this up.
Today, I might not meet the criteria for a ME/CFS diagnosis. I haven’t tried running or intense hiking yet, so I can’t say whether I’d crash or not if I really pushed myself. I don’t even know when a patient can be considered “recovered.” I still have other co-morbid conditions that I’m working to treat or improve — chronic migraine, some digestive problems, and sleep disturbance. But, I can do so much more now, and I feel so much better. I don’t know exactly what’s happening, but I will keep doing what seems to work.
Privilege, recovery, and Long COVID
This all makes for a nice personal story, but what about the other 800,000 to 2.5 million people in the USA who have ME/CFS?
I often think about people who don’t have the privileges that I have, and what role that plays in recovery. I’m a white American woman with a master’s degree from a middle class family, and I have a spouse whose income is high enough that I don’t have to work and we don’t generally worry about money. I have a child with mild special needs at home, but (excluding pandemic times) I can pay for some childcare. My ME/CFS was also never severe, only moderate.
If I hadn’t met my husband, I would have ended up moving back in with my parents at the age of 30, which would have been stressful and demoralizing. Still, I would have had them to lean on. I also had supportive friends and extended family. Many people don’t have this.
A lot of ME/CFS patients are still working to pay their bills while becoming sicker every week. Others are camped out at a relative’s or friend’s home, going through the years-long and often fruitless process of applying for disability benefits. Some are facing challenges I’ve never had because of my race, socioeconomic status, gender identity, sexuality, etc. The list goes on.
With this in mind, I want to advocate for all ME/CFS patients — for research, disability benefits, accommodations, and social acceptance. What worked for me may not work for them, and we certainly can’t expect a program of “lifestyle” changes to work for those who have such limited control over their own lifestyle.
We can’t throw books and programs at CFS patients and say, “Here’s what’s wrong with you. Use these methods and you’ll get better.” Providing a group of severely ill patients with an unfounded paradigm and virtually no support system within which they can start to heal will NOT yield good results, and could cause further harm. We need better research on the cause of CFS and potential treatments. We need disability benefits and specialized care for ME/CFS patients. We need well-informed doctors and mental health professionals.
It might all be a pipe dream, but I am heartened by the small changes I see happening. While I am saddened by the number of people who have developed Long COVID during the pandemic, its striking similarity to ME/CFS seems to be providing a nudge in funding and recognition for both conditions. Until we can provide the full spectrum of support for people with these chronic illnesses, I’ll keep going on my path of healing and recovery and speaking up for them, because it’s all I can do.
If I’m one of the few who experiences remission or recovery, I’d like to use it for good.My ME/CFS Recovery, Part III: What’s Working?