Graded Exercise Therapy

I so appreciate everyone who has reached out to me since my first post. I have felt the love and support of so many family and friends, and I am excited to share more of my health journey with you all! I wasn’t sure where to go from my first post, as I have a lot of things I want to write about! I decided to discuss my experience with exercise and exposure to GET or graded exercise therapy. GET and CBT (cognitive behavior therapy) have been the standard of care for ME/CFS patients for the past few decades. I will most likely devote another post to both why GET and CBT were recommended for patients and, more importantly, why the most recent research has basically debunked these outdated (and sometimes harmful) treatments. What I hope to accomplish with this post is to explain my personal experience with GET and how it contributed to the worsening of my condition.

For those of you unfamiliar with GET, it is the process of slowly reintroducing your body to activity. It was described to me as “find an activity you like (such as walking) and increase by 1o% each week”. The unfortunate and still somewhat prevalent (becoming less so in the United States) belief is that ME/CFS is not perpetuated by an ongoing problem with the body. Rather it is an aversion to activity and subsequent deconditioning from that aversion brought on by a trauma to the body that has since passed. Again, I will devote more time to current and past research as it relates to the pathology of ME/CFS, but this short explanation will help us all be on the same page about what GET and CBT combined are supposed to accomplish. CBT is supposed to help break your fear of being active by convincing you that your body isn’t actually sick while GET slowly gets you back into shape after a long period of inactivity. Well I am here to report on my sample size of one for graded exercise.

Now let me start by saying that what I was doing was never formally called “Graded Exercise Therapy”. My doctor at the time never brought up ME/CFS, so I assume she knew little about it. About 1.5 years into being sick, I had seen some improvement, but I was still nowhere near where I wanted to be in terms of energy. I returned to my PCP to discuss how I felt and ask for suggestions on how to feel better. Given my only positive test result up to this point was the reactivated mono infection from a year earlier, my doctor decided I must just be in some kind of “funk” that I needed to break out of. I was told to slowly increase my activity over a period of time. I was very eager to feel better and willing to try whatever I could, so I started methodically increasing my activity. If I walked one block during the first week, I walked two blocks during the second week. I was still exhausted and in pain, but I kept pushing myself.

I looked for ways to increase my activity each week. I would go for a swim, do a mild workout video, and I went for a lot of walks. I kept track of how long I was active and how I felt after each activity. I would always come back from these activities completely spent. I would then go to my afternoon of tutoring appointments having used whatever energy I had on my morning exercise routine. No alarms bells went off for me however because exercise is good for you! Certainly at some point I would see the benefits of my activity. I knew nothing about the post exertional malaise (PEM) associated with ME/CFS. I didn’t know that each time I pushed myself past my limit, I was damaging myself further. I kept up with this routine of adding activity (work, volunteering, exercise, church) for about a year and a half before my body couldn’t take it anymore. If you read my first post, you know that in the fall of 2017, I had a pretty significant crash. I went from what was mild ME/CFS to moderate. However, at this point, I still didn’t know what I had, so I just cut back on all of the activity I could afford to and kept shouldering on. I did not cut everything I should have, but I didn’t know any better and am seeing the effects of that decision to this day.

I thought that because I had a reduced but somewhat usable amount of energy before my crash, that it would come back. And then I would be more careful managing what I had because I knew what I was dealing with. It has been 1.5 years, and I am still nowhere near where I was before the crash. Quite sadly, I am worse than I was even directly following that crash in terms of pain and fatigue. This is something I want to stress to anyone reading this who finds themselves at the beginning of their ME/CFS story. If you are mild now, do NOT push yourself. Stay within your limits. End the day with energy. Do not deplete yourself. What strange advice. Don’t push yourself? What kind of person gives that advice? I do! Listen, when I was mild, I DID improve. The first year of the acute mono infection was rough, but I did gain energy back and was able to have a pretty full life with some limitations. What I didn’t understand was that I kept running my battery dry over and over again. That was the advice from my doctors, so who was I to question it? As soon as I gained a little energy, I immediately spent it. There is a metaphor common in the ME/CFS world which is one of having a dollar of energy or a faulty phone battery. A healthy person may have 1o dollars of energy and a full phone battery to work with. We are starting our day vastly behind, and everything takes energy. Taking a shower takes from your energy currency, making a meal depletes your faulty battery, even thinking and talking can take energy! Every time you run that battery down or spend all of your energy money, you are pushing yourself further and further from any sort of recovery.

I want share a recent experience with a doctor’s visit: This past March I saw a rheumatologist at Brigham and Women’s hospital (Harvard’s teaching hospital). I went to see this particular doctor, as he seemed to have some familiarity with ME/CFS through his research interests listed on the hospital’s website, and I wanted someone in Boston who was ME/CFS literate to oversee my care. Unfortunately, this was not the case, and he was not up to date on the most recent treatment protocols. As soon as he said “graded exercise therapy”, my heart sank. I tried to explain to him that I had tried this, and that it had caused me to become more sick. He was incredibly dismissive, saying “oh well you did it too fast”. I again tried to stand up for myself responding “I did it over a year and a half time-frame”. He completely ignored my protests and reasons for them, including advice from ME/CFS experts and current research articles. It is this kind of behavior by individuals in the medical community that is so infuriating. If I had gone to see this doctor four years ago before I was informed on my disease, I would
have followed his treatment protocol and ended up worse than when I started. I worry that he will do this to someone. That a newly sick individual will take his advice and put their path to any sort of recovery back years. The one highlight of this appointment came courtesy of my dear husband. Brandt was with me during this appointment, and at one point, I was explaining to this doctor a research article that I had read. He cut me off with the incredibly condescending “do you even have your PhD?” I turned and pointed to my husband “No, but he does!” Oh the look on his face…priceless.

Okay now that I have railed on the harms of exercise, let me contradict myself and lose any credibility I may have (which to be candid, probably isn’t much. this is a blog…) Let me explain! I do think that it is important to stay as active as you can. I have a bad back from a series of injuries in my teenage years, and it is crucial that I do my physical therapy. Yes, there are days that I am too tired to lay the mat out and do my band exercises. Days where I start a stretching routine only to lay there and watch the person on the TV tell me “great job! keep breathing!” while I do nothing but stare at the ceiling. But if I keep up a good routine of deep breathing, stretching, and band exercises, it helps with my stiffness and pain. I keep my fitbit on the entire time and closely monitor my heart rate. I do not do deliberate cardio. Brushing my teeth turns into cardio. You will not see me at the local gym being spotted while I impressively bench-press the bar (I’m just going off what I used to be able to do…). But keeping my muscles as strong as possible does help me with pain. It doesn’t touch my fatigue, but it helps my body not
hurt as badly.

So if you have ME/CFS and have been told you can exercise or “positive-think” your way out of it by anyone, run far far away from that person. Be it a doctor, nurse, acupuncturist, chiropractor, massage therapist, street performer, or your nosy neighbor who asked why you sit when you go down the stairs (looking at you lady in #8). They don’t know that they are talking about.