Russ Seigenberg’s Story
“It felt like all my remaining energy just drained out of my body. I felt as weak as a newborn kitten. I could not do anything!”
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Early Health
Very active and healthy growing up
Loved intense sports and exercise
Onset of Illness
Developed mono in college
Never fully recovered ability to exercise without crashes
Persistent post-viral fatigue
Major Crash
Sudden total collapse while doing manual labour on a restrictive diet
Extreme, lasting weakness with minimal exertion
Living with CFS
Years of low energy, crashes with small activities
Post-exertional malaise (PEM) after overdoing it
Frustrating trial-and-error with diet and lifestyle
Felt dismissed by doctors
Recovery Approach
Careful, gentle reintroduction of exercise
Strict pacing and listening to body’s limits
Gradually built capacity over years
Eventually returned to full-time work and family life
Resumed favourite activities like basketball and hiking with caution
Key Message
Recovery was slow and required strict boundaries
Believes others can improve by finding their personal balance of pacing, rest, and gentle activity
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Viral infection (mononucleosis / Epstein-Barr)
Post-viral fatigue
Overexertion (excessive exercise during recovery attempts)
Inadequate nutrition (extended fasting, raw diet while doing manual labour)
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Periodic nerve pain in arms and legs
Ongoing susceptibility to infections (colds)
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Strict pacing and activity boundaries (“take no prisoners” mentality)
Graduated exercise (walk/jog intervals built up over time)
Improved diet and consistent nutrition
Rest and energy conservation
Mental health practices (meditation, positive thinking, faith)
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6 years
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Russ has written a book - link TBC
My Story
I went from being relatively healthy in my youth to having very severe health challenges. As an example of my former good health, I did not miss any days in high school due to illness. However, my attendance record would not show this, as my mother allowed me to take one sick day every spring to attend the Red Sox opening game. She loved baseball! Like many teenagers, I had a lot of energy. In the fall, I often played tackle football for a couple of hours after school, went home for dinner, and then came back out for two hours of basketball at the local junior high. This did not feel overly tiring, and I loved every minute.
College Years and First Illness
In college, my physical self-care slipped due to people keeping late hours in the dorms, my partying on weekends, and a poor diet of mostly meat and carbs. I did not care for the over-cooked vegetables served in the dining halls. I contracted a virus that lasted about a month during my freshman year, and then I had the flu for a week during my sophomore year. Besides those incidents, I had no health problems and played basketball four times per week or more. On my off days, I jogged and finished by running up the 17 flights of stairs to my dorm floor. In those days, I could run up all 17 flights without stopping! I once won a bet by running down all those stairs and back up in less than 5 minutes.
Everything changed at the beginning of my junior year at college. I contracted a virus late in the summer. I felt tired most of the time and could not shake it. When I returned to college and had to walk around the campus, things became even more difficult. I had a sore throat, my concentration was off, and I felt very dizzy when I walked up flights of stairs. I finally went to the Student Health Center and described my symptoms to the doctor. He had them take blood, and I was diagnosed with mononucleosis. I was immediately sent to the mono ward. In this special wing of the health center, the protocol was to lie in bed for 5 to 7 days, only getting up to use the toilet. It was very boring. Fortunately, I slept 16 hours or more per day and completed my treatment. Mono really wipes you out!
“I had been a real gym rat, but those days seemed over.”
Lingering Effects and Fragile Health
After my release, I was able to return to classes and function normally. There was, however, one significant problem. It seemed I could no longer exercise safely. Every time I tried, I would get sick for a few days to a week with something akin to a moderate cold. After repeating this cycle of trying to exercise and then feeling ill, I finally gave up on my efforts to get in shape and accepted my strange condition. Over time, I learned I could exercise a little if I were cautious not to overdo it. However, I could not return to playing basketball with any real stamina or prowess. This bothered me immensely at the time. I had been a real gym rat, but those days seemed over.
This period of fragile health continued from 1971 to 1976. My energy levels were generally fair, unless I overexerted myself through excessive exercise or activity. I would still get sick periodically, and never felt entirely well. But I could work and do what I needed to do. I did eventually learn some things. I became a vegetarian, which was beneficial in reducing episodes of illness and making me feel healthier. I also learned to exercise more moderately. Unfortunately, some of the things I experimented with ended up backfiring. I tried fasting episodically, at least once a week, and sometimes twice a week. The idea was to purify your body. My mind felt clearer, but fasting that much was a bad decision for me. It seemed to lower my overall energy levels and vitality significantly.
The Major Crash
I had remained on unemployment compensation for several months, hoping to gain more strength. I purposely did not look very hard for jobs. Finally, that option ran out, and I had to find some work. I did not have a designated career (having majored in English in college), so I drove a taxicab. That was draining, but I was still able to function. As I look back on my health, I would say I had some post-viral condition, probably Epstein-Barr virus lurking in my cells.
It was in June of 1976 that my health totally crashed. It happened in one day, which eventually proved informative since it was so sudden. Being interested in nutrition and diet, I obtained a job at a health spa in southwestern Florida. The owner of the spa had cured himself of lung cancer with a vegetarian raw food diet, and so he was treating people from all over the world at his resort. Everyone ate the recommended diet in the dining hall. Additionally, fasting and exposure to the sun were encouraged. There were lectures and numerous activities available for the guests. It was a very positive atmosphere, and I met many nice people. As a staff member, I received free room and board in exchange for 6 hours of work daily. I was assigned to the maintenance crew. I mowed lawns and helped with some construction projects. I even taught a class once. I was holding on for a while energy-wise, but the raw food diet proved inadequate for those doing manual labor. A variety of fruits and vegetables were available, but options for carbs and protein sources were limited. Breakfast consisted of only fruit. I complained once, but the staff was expected to adhere to the prescribed diet. We were expected to be good examples to the guests and part of the culture.
I decided to quit because of the continued strain of working without enough calories and protein. Unfortunately, we were given a very tough work assignment before I had time to make plans to flee. We were asked to dig ditches for a special project. After a few hours of that duty, I had a startling experience. It felt like all my remaining energy just drained out of my body. I felt as weak as a newborn kitten. I could not do anything! I walked out of the job and went to bed. The next day, I felt just the same, not sick, but extremely weak. I told the owner, and he acted like he had seen it before. I was surprised that he believed me. He reassigned me to office duty. I could manage that, but just barely. I had no idea what had happened or what to do about it! However, I did recognize that I was in serious trouble physically.
“Unfortunately, the medical profession thought my condition was psychosomatic, and they recommended I go to a psychiatrist. ”
Struggling for Answers
I eventually went to a doctor, but in the 1970s, knowledge about CFS was limited. I ended up diagnosing myself by going through a medical textbook in the library. I realized I had “neurasthenia,” the old name for CFS. Unfortunately, the medical profession thought my condition was psychosomatic, and they recommended I go to a psychiatrist. I declined as I felt fine emotionally, just wasted physically. I had been practicing meditation and yoga, was into positive thinking, and was buoyed by my growing religious faith. I was not even depressed about my condition because I had some confidence that God had my back and I would get better somehow.
Years of Survival and Isolation
A lot happened in my life over the next 3 years. I moved back to my home state of Massachusetts from Florida, where I was living, and stayed with my parents. Parents will take you in when no one else will! They did not know how to react to me. They seemed to think I was losing it mentally. I did not blame them. Since no one seemed able to understand, I usually chose not to tell people about my condition. There was no Internet in the 70s, so the world was much smaller. I never met or heard of anyone else with CFS. Life was lonely in that way.
I camped at my parents’ home for a few months, hoping to regain my strength. Not wanting a permanent freeloader, they encouraged me to get a job and to find my own place. I was still a wreck, but I decided to try working since I had no direction. Fortunately, I found an easy sit-down job, taking orders by phone for a picture frame company. I kept this job for about four months, but I was eventually laid off. I had moved into an apartment in the Brighton section of Boston, so I stayed home resting while my roommate worked. I was still clueless about my health condition. I had learned that if I avoided doing anything too demanding, I could maintain a relatively stable energy level. I next worked a temporary job verifying payment submissions for Blue Cross/Blue Shield. Even that simple job was challenging in terms of energy, and I was glad when the assignment ended. I remember how disconcerting my life situation was. I was floating along, trying to survive day-to-day with no plan or strategy.
“My wife Nancy and I laughed hysterically one night about how pathetic we were, then decided we had better do something to stave off homelessness.”
Marriage and New Challenges
Life changed when I met my wife-to-be at church. We became good friends and spent a lot of time together. I was comfortable enough with her to share my health situation. She was sympathetic and supportive. Our relationship continued to progress, and we discussed marriage. I was surprised that she did not run away, given my absurd health situation. She knew she would likely be supporting us for a while.
After we got married, my health deteriorated for a time. There were months when I spent much of the day in bed, though I could always get up, eat, and use the restroom. My symptoms at my worst were as follows: I felt weak all the time. My concentration was off. Reading seemed a great effort. Exercising seemed impossible. Going out was scary because just going shopping could precipitate a crash. I could not tolerate standing in one place for very long. However, I do not think that qualifies me for postural orthostatic tachycardia syndrome (POTS) since I was never tested for it. POTS is a condition in which a change from lying down to standing up causes an abnormally significant increase in heart rate. I also had post-exertional malaise (PEM). If I overdid things, I would be wiped out for 7 to 10 days, not fun at all! I also had periodic pain in the nerves of my legs and arms. Fortunately, my sleep was decent.
Somewhere in our first year of marriage, my wife, the breadwinner, became ill. She was pregnant and had an ovarian cyst. (I know some readers may question my decision-making abilities as a young person. I certainly agree, as they were sorely lacking.) My wife Nancy and I laughed hysterically one night about how pathetic we were, then decided we had better do something to stave off homelessness. Parents were not a good option this time. Nancy’s parents lived in a trailer in Florida, and my parents disapproved of my not working. Nancy decided that her cousin Barry was the best option. Barry was married and had a child, but he had an empty attic with two bedrooms. Due to the generosity of Barry and his wife Ginny, the attic became our new home.
Because we felt we couldn’t impose on Barry forever, my wife and I eventually obtained employment as live-in nannies. We worked for a man with two young children whose wife had deserted him. We did that for about 9 months, and then the wife moved back to town, and we were out of a job. My wife was healthy now and could work as a surgical technician, so we found an apartment in Weymouth, Massachusetts. I was taking a couple of classes at a college in Boston and taking care of my daughters. A second child had come along by now. I hoped to enter graduate school to get a master’s degree in psychology and was taking some required classes. However, my health was so marginal that these scholastic ambitions seemed a big reach.
“I always felt 5 minutes away from crashing. Three years in, I still had no idea how to regain my strength.”
Returning to Barry’s Attic and a Breakthrough
Somewhat out of the blue, Nancy’s cousin Barry called. He had gotten divorced and was very lonely. He begged us to come and live with him to provide some company. He did not even mind that we now had two little children. We felt he had done us a solid when he rescued us from homelessness, so we agreed. There I was, still struggling with CFS but with more responsibility, right back in Barry’s attic. Rent was free, though; we just had to help with utilities and keep the place clean.
Not too much had changed health-wise. I was more active, but everything I did seemed fraught with peril. I always felt 5 minutes away from crashing. Three years in, I still had no idea how to regain my strength. One positive aspect of spending so much time in bed was that I had plenty of time to think. One day, I had a breakthrough while reflecting on my varied attempts at exercise. I recognized that there were occasions when I attempted vigorous exercise and felt a surge of energy. I wondered what caused that.
As an athlete in the past, I was prone to overexerting myself and crashing when I tried to exercise. However, there were a few times when I felt a little stronger after engaging in small, intense activities, such as running up one flight of stairs. I decided to experiment carefully with aerobic exercise (activities requiring more oxygen).
I planned to walk a couple of blocks, but break it up with jogging. Walking alone had not helped much in the past, as it usually caused some fatigue. I felt like the Wright brothers at Kittyhawk as I embarked on my jogging adventure! Surprisingly, when I performed my experiment of jogging interspersed with long walking breaks, it felt pretty good. I only went a few blocks, but it was a big deal. I was not overly tired after my exercise; the next day, I had no PEM. I actually felt better, even a little stronger. I continued working at walk/jogging and was soon up to about a mile.
Gradual Recovery
I was excited that my exercise experiment was working. There was, however, one significant problem. As soon as I felt I had more energy, I wanted to engage in more activities. I was in a cycle: rise, then crash and burn. I was getting nowhere, but I knew what I needed to do. I had to keep very firm boundaries! It did not matter what others or I wanted; I had to stick to my limits. I call this a “take no prisoners” mentality.
Well, it worked. I listened to my body, exercised most days, and got plenty of rest. I was fortunate that I didn't have to work. I refrained from doing extra things that would cause fatigue and said “no” when I had to. Then something amazing happened. One day, about 3 months into my new routine, I overdid things and felt like I had crashed. I was quite frustrated with myself. However, when I woke up the next day, I felt OK, no serious PEM. This increased my hope and provided another Eureka moment. I hypothesized that I had built up my energy reserves enough to recharge through sleep more effectively. This was another breakthrough.
I had never considered the concept that humans might have a system of energy storage. I will talk about this concept in more detail later in this book. Armed with my new theory, I continued to follow the routines that worked. I gradually was able to take on more activity, and three years later, I felt more solid about being on the road to recovery. I had worked full-time for two years, obtained a master’s degree in counseling psychology, and was working on my doctorate in the same field.
“My longest hike was 16 miles up and down a mountain with 3,500 feet of elevation gain. The hike took 7 hours from start to finish. ”
Return to Life and Reflection
My recovery was not yet complete. I was still sensitive to standing too long. I was susceptible to colds and had to be careful with energy expenditures. I still thought that this sensitivity was due to having some latent virus, but I never had any testing done. I had learned how to manage my condition well. Playing sports still seemed far out of reach, but I was relatively happy, working on my career and far from being home-bound. Life continued; we had another child, and I went on to graduate with my Ph.D. in counseling psychology.
Following graduation, I obtained a full-time counseling position, and we moved to Logan, Utah. After that, I worked hard and found the time and energy to write a self-help book. Regarding fitness, I played golf and jogged lightly a few times per week.
I had been invited to play basketball (my favorite sport) a few times over the years, but I always said no. It still seemed too risky from a health perspective. At this point, I was 40 years old. It had been 15 years since my complete crash into CFS. Some guys in my neighborhood kept inviting me to basketball as they played regularly. I decided to ramp up my jogging and then give basketball a whirl. My first goal was to run a mile in 10 minutes or less to prove I could handle the rigors of basketball. After a couple of months, the goal was accomplished, and I went to play ball. The first effort, I must admit, was rather scary. I had no idea how my body would react. I had a fear fantasy that I might collapse afterward. However, it went OK except for some sore muscles.
I continued to play half-court basketball for about six months before moving up to full-court play. I ended up playing 4 to 5 times per week for the next 20 years till my body gave out at age 60 (too many muscle pulls). In the following years, I hiked and played tennis. My longest hike was 16 miles up and down a mountain with 3,500 feet of elevation gain. The hike took 7 hours from start to finish. Fortunately, my body handled the test well, and I experienced no symptoms of PEM afterward. I write these things not to brag, but to demonstrate there is hope for getting physically fit again after ME/CFS.
I should mention that although I largely recovered from CFS, life was not perfect. My immune system seemed affected by my years with CFS, and I remained susceptible to colds and illness. This problem was not severe enough to cause me to miss much work, but it certainly was frustrating.
I hope my story encourages someone else. I recognize that everyone is different, but if one person can recover, others can. I believe there are five main areas to focus on to recover. There are medical, pacing, mental health, exercise, and diet. Each person may have to focus more on specific areas and learn and practice different health strategies. My recovery journey was challenging, but I did learn important life lessons and skills. I remain very grateful that I was able to regain my functioning and be productive for the next forty years of my adult life.