Exercise and Heart Rate

I had a request to create a permanent page with all my posts about cardiopulmonary exercise testing in ME/CFS, my own test results, and my experiences wearing a heart rate monitor. What follows are all my posts on the subject in chronological order. If you prefer, you can see the original posts with their comments by using this link.

Stressin’ and Testin’, originally posted April 19, 2012

Exercise testing for CFS is like professional boxing: you know you’ll get the crap beaten out of you, but you volunteer for it anyway. The difference is that in boxing, you get paid. In CFS exercise testing, you just hope to get some useful data. I don’t have the results of my testing yet, but I thought it might be helpful to at least share what the experience was like.

The rationale for exercise testing in CFS comes primarily from the research of the Pacific Fatigue Lab at the University of the Pacific. Their research has shown that people with CFS have a unique response to a two-day exercise challenge compared to healthy sedentary controls or people with other illnesses. In the second test, people with CFS demonstrate significant impairment of their metabolic function. In other words, the testing captures the effects of post-exertional malaise. If you want to read more about this, you can check out the series of articles I wrote on post-exertional malaise in 2010.

The Pacific Fatigue Lab testing calls for two cardiopulmonary exercise stress tests (CPET), spaced 24 hours apart (referred to as the Stevens Protocol). I went to Ithaca College to have my testing done by researcher Dr. Betsy Keller, who has provided the CPETs for CFS research by Dr. Maureen Hanson and Dr. David Bell. I was instructed to rest for several days in advance, and to eat frequent carb-rich snacks of fruits, whole grains, etc.

The test began with blood pressure and EKG measurements taken while I was lying down. Then we moved to the stationary bike. I was fitted with a nose clip and scuba-like mask so that my oxygen and carbon dioxide could be measured and analyzed. The EKG leads were hooked up to another machine so that my heart could be monitored throughout the test. Then I sat on the bike without pedaling for three minutes, so that resting data could be collected. My blood pressure was measured every two minutes throughout the test. I got the order to start pedaling, and every two minutes a little more resistance was added to the bike so I had to work harder as the test continued.

And it was hard. Very hard. The techs were constantly shouting encouragement, telling me how much time was left at each resistance level, goading me to push to the next level. Every two minutes, someone would ask me to rate my level of perceived exertion and that was recorded as well. There was so much going on, all I could do was focus on pedaling the bike. The goal of the test is to pedal until you feel you cannot go any further. Not I-would-like-to-stop-now, but I-will-fall-off-the-bike-if-I-have-to-keep-going.

Once I hit that point, they dropped the resistance from the bike and asked me to pedal a little more to start cooling down. I was just on autopilot at that point, barely paying attention to what was going on. They kept taking my blood pressure to be sure that it started dropping back down to normal. Finally, they helped me off the bike and into a chair to recover. The best part was then being helped into the next room to lie down!

On the next day, we did the whole thing over again. It was definitely more difficult the second day, although I don’t have any data yet to say whether they saw the dysfunction they expected. Once I cooled down from the second test, I was helped to the car and allowed to go home.

I think I will do a separate post about recovering from this test. Suffice to say, it sucks. I just hope the test data will be helpful.


Recoverin’ originally posted May 3, 2012

Three weeks ago, I had my exercise stress tests. A friend had cautioned me that it could take three weeks to recover, and I think she was right although I did sabotage myself a little bit, as I’ll explain.

I was not prepared for how bad the post-test crash would be. I mean, I knew it would be bad but this was possibly the most intense crash I have ever had. I was completely bedridden for three days, and was unable to sit up longer than the time it took to eat (in bed). The pain was excruciating, especially in my legs. My brain was fuzzy, and I could not focus on anything. But it was the weakness that really shocked me. I felt like a Raggedy Ann doll, my limbs all floppy. When I stood, I felt like I should sit right back down. My arms tingled with that weird pins-and-needles feeling I get before I pass out, although I did not faint. I could not hold my head up for very long without support. To get to the bathroom, I had to resort to my old castigation mind-trick: “You are not paralyzed. There is nothing wrong with your muscles. You can’t wet the bed like an invalid. Get off your a** and walk to the bathroom.” (It occurs to me that I would never speak to a sick person this way, but that self-reflection probably merits its own post.)

I’ve had a day or two of crashing as severe as this many times over the last 17 years. But this crash went on for days. I’ve never gone as long as a week with that floppy spaghetti-noodle weakness in my limbs. I started to get a little scared. What if the exercise test broke something in me? What if this never got better? Both my friend and Dr. Betsy Keller had said that some patients benefited from IV fluids after the exercise tests. I’ve never tried it before now, but after five days I was feeling desperate to try anything to break the pattern. My doctor agreed, and I went to his office for the infusion. Another first: I have never used a wheelchair to get to his office before. He even ran the line himself, and I received 2 liters of IV saline over the course of three to four hours. After the nurse hooked up the second bag and increased the drip rate, my head started to clear a little bit. Then the floppy feeling started to dissipate. By the time my Mom brought me home, I did feel a little better, despite the energy expenditure of going to the office.

I felt like I turned a corner after that. I still could not be out of bed for very long. Standing at the sink for five minutes was too much. Getting up to put away a couple books brought on the now-familiar weakness. But I could sit up in bed and read, focus on a movie, or knit for awhile. That was a huge improvement. Then came the Hot Water Heater Episode, and I had a setback. I was back to being bedridden for a couple days, unable to stay upright without support. But by the end of week two, I did experience a little improvement. The pain in my legs was back down to pre-test levels. I no longer felt like I might pass out. And I started to feel a little bored, always a good sign for me. There is no doubt I was still crashed, but I started to think I might actually climb out of this one.

Then I sabotaged myself, a little. Long before my exercise test was scheduled, my parents had purchased handicapped-accessible tickets for my husband and I to accompany them to a baseball game. I still wanted to go. In fact, when my husband and I discussed whether I was physically able to go, I told him I couldn’t handle the emotional consequences of not going to the game. I was scared, unsure what the outing would do to my recovery and how bad the setback might be. But I threw caution to the wind and went anyway. I am so very glad I did! We had a blast, and it is always such a gift to get out in the world after a prolonged relapse. I’m sure that it has added days to my recovery. I’ve spent these last few days “resting aggressively.” Tomorrow is our 16th wedding anniversary, and I don’t know if I will be able to go out to dinner to celebrate.

My understanding is that a recovery time of more than one day after exercise testing is considered abnormal. In one study, none of the CFS patients recovered within 48 hours and 60% of CFS patients took more than 5 days to recover. That particular study only followed patients for 7 days post-testing, so it is likely that many of those patients took more than a week to recover. I think three weeks was a reasonable estimate for me. If I hadn’t indulged in the baseball game, I might be pretty close to baseline by now.

Instead, it’s three weeks out and I am writing this from bed. As soon as I publish this post, I will lie back down as I feel my head getting heavier – the concrete football helmet of fatigue. I won’t attempt anything more demanding than knitting for the rest of the day, and have some audiobooks to fill the time. Whether we go out to celebrate our anniversary will be a last minute decision, and I have already mentally allocated next week to more bed rest. I hope I can be back at baseline by the end of the week, but as anyone with CFS knows, I am ultimately not in control of whether I make that deadline.


 And The Envelope, Please, originally posted on May 14, 2012

My exercise test results are in. The numbers were, quite frankly, shocking. Two numbers – VO2max and anaerobic threshold – provide the evidence that I have significant metabolic dysfunction, and I’ll try to explain what they mean. Check out my description of the test itself for background. What I do now that I have the results will be the subject of my next post.

VO2max is a measurement of the maximum amount of oxygen that a person can use during exercise. The more oxygen you can use, the more energy you can produce. VO2 max is considered the best measurement of a person’s physical fitness or functional capacity, and it is affected by factors such as age, gender, training, altitude, etc. A sedentary woman my age has an average of 27.0. My VO2max was 20.7 on day one, and 19.6 on day two. In other words, my maximum ability to use oxygen is 23% lower than what would be expected for a sedentary woman my age.

One interesting thing about my VO2max number is that I was able to reproduce the result on day two. Typically, people can reproduce their VO2max value on a two-day test with about 6-7% of variation. My number was about 5% different. So this is a good thing, but not necessarily typical of CFS patients. One study found that CFS patients had a drop of 20% in their VO2max on the second test day.

Dr. Betsy Keller of Ithaca College, who conducted my exercise test, included functional equivalents in her report to help translate the numbers into information I could actually understand. Looking at just the VO2max number, my capacity equates to slow cycling, but carrying groceries upstairs exceeds my functional capacity. That’s pretty grim.

Anaerobic threshold is where things get really interesting. The anaerobic threshold is the point at which your body is producing most energy through anaerobic metabolism, as opposed to aerobic metabolism which uses oxygen. This means that you will feel increasing fatigue, your workload will drop, and you will have to stop activity within a few minutes. It also takes longer to recover from this kind of activity, requiring rest and more oxygen. (Is this sounding familiar to anyone?)

On day one, my anaerobic threshold occurred at 105 beats per minute. That is not horrible, although it is low. A deconditioned but otherwise healthy person might have a result like that. On day two, however, my anaerobic threshold dropped to 93 beats per minute. That is abnormal, not just because it is low but because it represents such a significant drop from day one. Healthy people, even deconditioned people, are able to reproduce their anaerobic threshold results on day two. That I failed to do so is proof of metabolic dysfunction.

When you put the VO2max result together with the anaerobic threshold result, you can see the metabolic dysfunction another way. Normally, the anaerobic threshold will occur at about 50-75% of a person’s VO2max. But for me, my anaerobic threshold on day one occurred at 30% of VO2max. Anything below 40% is considered an abnormal result and evidence of metabolic dysfunction. On day two, my anaerobic threshold occurred at 17% of VO2max. That is crazy low. In fact, I reached that anaerobic threshold just sitting on the bike before I started pedaling on day two. Just sitting there, I was already maxed out. These are grossly abnormal results.

To equate these numbers to functionality, Dr. Keller said that my day one anaerobic threshold is the equivalent of standing to fold laundry, or putting clothes in the washer, but that walking around to put away laundry would be beyond my capacity. But on day two? The day two result is the equivalent of lying down watching television. So when I am in a crash, I am exceeding my anaerobic threshold by just lying down and watching tv or doing nothing.

So no wonder I feel like shit all the time, yeah?

There were other abnormalities, including blunted heart rate and blood pressure responses, but these two numbers are the key for me. As Dr. Keller points out, most activities of daily living require me to work above my anaerobic threshold. This means my ability to perform those activities is limited, and resulting fatigue prevents me from continuing to perform those activities.

Here’s the killer fact for me, though. On day two, I was at my anaerobic threshold before I even started cycling. Then I proceeded to cycle for 11.5 minutes, and came close to the length and workload I produced on day one. The whole second day was past my anaerobic threshold. I felt and rated day two as more difficult, but I kept going anyway. I draw two conclusions from this. First, I have become accustomed to operating over my anaerobic threshold and have probably developed that as an adaptive coping mechanism. Second, I cannot trust my my own assessment of when I am overdoing it. My sense of how I am feeling is not reliable.

My husband’s reaction to that was “Duh.” It will surprise no one who knows me that the test proves I am a stubborn and determined woman who does not accept her own limitations. But it was a shock to see this reduced to numbers and written in black and white on the page.

A friend pointed out to me that nothing has actually changed. It’s not like I’ve suddenly developed a heart condition. The only thing that has changed is the information I have about the metabolic dysfunction. Knowledge is power, and next time I’ll share what steps I’m taking to apply this knowledge.


Significance of AT, originally posted May 21, 2012

Now that my exercise tests are finished and I have the results, it’s time to figure out what to do about it. I’m relying on the work of Staci Stevens, Chris Snell and others at the Pacific Fatigue Lab who have done a great deal of work on CFS metabolic dysfunction and how to cope with it. Everything revolves around my heart rate at the anaerobic threshold.

The anaerobic threshold (AT) is the point at which most energy is derived through anaerobic processes (as opposed to using oxygen) and lactate begins to accumulate in the bloodstream. As people cross their ATs, they are not able to sustain activity for much longer and experience the rapid onset of fatigue. People with CFS seem to have lower than normal ATs due to metabolic dysfunction, although no one can yet pinpoint where the dysfunction is. While a healthy person can get through work and other activities of daily living without reaching the AT, people with CFS can reach it just by taking a shower. As a result, we experience fatigue much earlier than healthy people and we continue to build up that oxygen debt as we eat, sit, walk up stairs, and so on. Any activity has the potential to cross the AT, building up yet more need for rest. It’s no surprise that we end up prostrate in bed, unable to do anything at all.

Rest and oxygen are necessary for recovery after crossing the AT, but people with CFS do not recover normally. Here’s an example that Staci Stevens gave in an article I wrote in 2010:

An athlete can climb two flights of stairs without fatigue or shortness of breath. A sedentary overweight person might climb the same two flights of stairs and feel out of breath, but will recover completely after a brief rest. A person with CFS may struggle to climb the stairs, and experience severe fatigue and PEM. In other words, the CFS patient reaches the AT after much less exertion than a healthy person, and requires a longer period of time to recover.

People with CFS end up in trouble from two directions. On the one hand, we cross our ATs abnormally early. And on the other hand, it takes us abnormally long to recover. It’s a vicious cycle, and I suspect that many of us spend large chunks of time over our ATs. I saw that in my own test results. One day two, I crossed my AT before I started biking and then biked for 11.5 minutes – all over the AT!!!

Common sense says that if something is bad for you, don’t do it. So the first step is to avoid crossing the AT. Obviously, we can’t spend our days hooked up to EKG and ventilation equipment to carefully monitor our ATs. But we can use heart rate as a proxy for the AT. My heart rate at the anaerobic threshold on day one was 105 beats per minute, and 93 beats per minute on day two. I am now wearing a heart rate monitor (this one) with the alarm set to go off when my heart rate goes over 95 beats per minute.

When the alarm sounds, I am supposed to sit down and rest until my heart rate drops back down. I’m also keeping notes on my activities so I can begin to pinpoint my true limits. If I can avoid my AT, I should be able to avoid taxing my body and triggering post-exertional malaise. Heart rate is not the perfect proxy. For example, my heart rate as I write this blog post is 79 beats per minute, and I will still be fatigued afterwards. But heart rate can at least help get my physical activity more in line with my capacity.

It’s been very surprising to see what activities push my heart rate over 95 beats per minute. Here’s a sample:

  • Walking from the back of my yard up an incline to the house
  • Rolling an empty trashcan up the driveway
  • Pulling weeds for two minutes
  • Walking up stairs at my normal pace
  • Standing at the reception desk at a doctor’s office
  • Laughing really hard (I’m giving my self a break on that one)

The first goal is to get my activity under control. Sometimes I won’t have a choice about going over the AT, like when I go to the doctor this week. But there are a lot of things I would normally be trying to do – weeding, laundry, going to our small farmer’s market – that I am not doing because it sets off the heart rate monitor. It will take some time to see if this really does help minimize my crashes.


Raising the Limit, originally posted May 29, 2012

I feel like I am getting close to baseline, the state I was in prior to the exercise testing. It’s taken almost seven weeks, and in that time I have left my house a total of seven times – 5 doctor appointments and 2 social outings in my wheelchair. It has been a hard slog back to normalcy, and I’m getting close.

I’ve been wearing a heart rate monitor for 18 days, and have the alarm set to go off when I go over 95 beats per minute. It does not take much to put me over that line. I’ve been so frustrated that it goes off when I climb a flight of stairs or laugh or walk through my yard. But that alarm has forced me to pace much more than I normally would. I am walking slower. I’m making different choices about what I try to accomplish in the house. And that alarm has stopped me from doing things I would normally have pushed to do, like weeding for even 5 minutes or planting flowers in the yard. I have done far far less than I was inclined to do.

Has it made any difference in my symptoms? Perhaps. I have not had a crash day since strapping on the monitor. But my fatigue, pain, and cognitive symptoms all persist. Nothing is off the charts, but none of it is gone, either. On the other hand, I have been coming back to baseline and I think it makes sense to attribute that progress to the careful pacing forced by the monitor.

Today I raised the limit on my heart rate monitor to 105 beats per minute. This was my anaerobic threshold on the first day of the exercise tests. Now that I am feeling closer to normal, I thought it made sense to experiment with the higher limit. If I can sustain that without crashing, perhaps it will be a sign of progress. So far today, I have been able to climb the stairs and water some plants in the yard without setting off the monitor for more than a couple of beats.

The anaerobic threshold is not the only barrier I am trying to avoid. There is what I am calling the crazy threshold (CT) to manage as well. The crazy threshold is that point at which I can’t take being isolated in this house for another minute. The past few days have been ok. My husband was home for most of the holiday weekend instead of running in several directions at once. We went out for ice cream at the dairy right by the house. And my parents came for a visit too. I’ve had enough human interaction that I don’t feel perilously close to the CT.

This week, I am in self-imposed seclusion and house arrest. We have a wonderful family event to attend on Saturday that will also involve a car trip. It will be a big outlay of energy, and I cannot WILL NOT miss it. I don’t think I will be resentful of the heart rate monitor if careful pacing gets me to and through this family celebration without a crash. Too much to hope for? We’ll see.


Can’t Drive 95, originally posted July 2, 2012

Almost as soon as I had decided to raise the limit on my heart rate monitor to 105 beats per minute, my physical therapy team smacked that idea down. They told me that one week with the monitor was not enough to really get the hang of pacing, and suggested that I was raising the limit so the monitor would not go off as frequently rather than because of any real improvement in my energy management. On their advice, I set the alarm back down to 95 beats per minute.

They were right.

One week was not enough. Neither is one month. My activity sets off the alarm multiple times a day. Climbing stairs, carrying objects, making the bed, moving anywhere too quickly – it all sets off the alarm. I tracked my activity, position and heart rate carefully for several weeks. And I tried – I really really tried – to make different choices and limit my activity.

It worked, sort of. After recovering from a family event, I went three weeks without a crash. My pain levels have decreased. I haven’t ended each day crawling into bed at 6:30 pm, shaking and exhausted. But this came with a price. I did not leave the house for those three weeks. I was much less productive than normal – just more inactive overall.

And I was miserable. I worried about the long-term effect of being even less active than before. I was bored, so terribly bored. I realized that pushing hard to exhaustion actually prevents me from feeling bored. If I’m completely wiped out, my brain can’t care about the fact that I’m spacing out to a baseball game. It doesn’t bother me when I’m too tired to care. But now I’m aware/awake enough to notice that I’m doing nothing, thinking nothing, and that I’m bored.

I feel the bars of this prison more acutely. It’s like standing outside a bakery and looking at the goodies in the window. I can see the things I want to do, but I can’t touch them without setting off the monitor. So I stand at the glass and stare. I want to fuss in the garden, tidy up, bake bread, cook dinner, write more blog posts, read read read the stack of articles in my queue, take photos, visit with friends – and I can’t. Not without hearing the boo-doop chime of the alarm. These are all things I did before, and I accepted the consequential pain and exhaustion. Now I am not doing them, and struggling to accept the consequential boredom, loneliness, and despair.

It’s a trade off, either way. But which is the right choice? When is it better to be bored? When is it better to be in pain? Living with CFS is always about moving targets, shifting limits, and hard choices. Wearing the heart rate monitor is designed to help me stop before I get to pain and post-exertional relapse. When I obey the alarm, it works; I experience much less pain and relapse.

But is it worth it?

What kind of life is it to stop halfway up 13 steps to rest? To not be able to cook and then also do the dishes? To not kick the ball around the yard with the dog for a few minutes? To say no, no, and no again to invitations and fun plans? To shrink my world so that I’m not free to move within my own home without a chime sounding? To sit and sit and sit and sit and sit and all the time knowing that I am sitting while opportunities slip by?

There are people with CFS who are bedridden. I am fortunate to have only suffered that way for short periods of time. But when I have been that ill, I have been so hazy and weak that I didn’t really notice. It’s like the first few days after acute gastroenteritis, where you’re not throwing up (which is good) but you can’t do anything else (and you don’t care).

Living with this heart rate limit is not like that. This feels like a cruel experiment. There’s a plate of cookies on the table in front of me, and I want a cookie. But every time I reach for the cookie, I get a powerful electric shock. So I sit, looking at the cookies, acutely aware that I can’t have one. I’ve made these adjustments before. When I gave up my job. When I gave up driving. When I gave up cooking dinner for friends. When I gave up walking more than 50 yards and submitted to using a wheelchair. I’ve been there, done that. And each time, it did not feel optional. I gave those things up because to continue doing them meant unbearable pain and exhaustion. But these day to day life things that set off the heart monitor are not like that. No single thing – carrying a few books up stairs, kicking the ball for the dog – puts me down. But cumulatively, or done for too long, these things do knock me out, and the heart monitor can prevent that.

What I’ve learned since strapping on the heart rate monitor is that the glass box of my limitations is too small. If I obey the monitor, if I focus on setting it off as little as possible, I will lose my mind. I will sink into deep depression, isolated and unsatisfied. I will resent the healthies in my life. I will surrender more of myself to this greedy illness, and I will live each day focused on what I cannot do rather than on what I can. The longer I wear this monitor, the more clear it becomes to me that I cannot abide the speed limit of 95 beats per minute.

Edited to add: My friend Wilhelmina Jenkins posted a comment on Facebook that I’ve posted with her permission below, but one sentence really captures how I feel: “How long can you stare at the cookies in the window without feeling that you are starving to death?”


Spontaneity, originally posted on August 2, 2012

I’ve always been a planner, and living with CFS wreaks havoc on plans. I never know if I’ll be able to follow through on plans, big or small. I missed my cousin’s high school graduation, and at least three weddings of friends from law school. But I’ve also had to cancel on lunch with friends, movies, dates with my husband, errands . . . and it’s not just planned outings (which are few and far between anyway). I frequently reach 4pm and I’m too spent to make dinner. The tidying up I planned to do? Putting away clean laundry? Making that phone call?

Anyway, you get the picture. Making plans when you have CFS is frequently a crap shoot (or an exercise in futility).

Since strapping on the heart rate monitor, I feel like this crap shoot effect has been quadrupled. There are times I can’t make another trip up the stairs, not because of how I’m feeling but because my heart rate is running too high. I am working so hard at being disciplined, obeying the alarm and resting. This past weekend was very busy, and I rested up for almost two weeks – passing on other things – to have the energy to make it. (I did make it, but I’m still crashed).

My life is becoming increasingly regimented: obey the alarm; don’t do X so that you can do Y in three days; no impulsive baking (or anything else); no spur of the moment visits from friends. Being housebound, I have always had limited options. My husband will ask “What do you want to do tonight?” and I will say “Same options as every other night: knit, read, or watch tv.” There’s never been freedom for variety or novelty. But now, I feel like I’ve gone from “severely limited” to “carefully controlled energy microclimate.” The lack of flexibility and spontaneity is oppressive.

Then there was last Monday. My heart rate was running really low (for reasons I still don’t understand). I was able to go up the stairs without triggering the alarm. I didn’t feel good, but I felt stable. My husband took a day off from work, and we decided SPUR OF THE MOMENT to go out to lunch. Like normal people! All spontaneously and everything!

And I did it! We had lunch, and my heart rate alarm (which I left audible despite being in public) only went off when I was walking from the car to the restaurant and then back out. It’s hard to describe to people who are not housebound how this feels. All I can say is that doing something as mundane and normal as going out to lunch with my husband makes me feel like a human being.

But the best moment came afterwards when my husband went into the local soccer store. I was waiting in the car, and he came back out to tell me that there were two players from the Philadelphia Union in the store. We are serious Union fans. Did I want to meet them? So I went into the store (alarm binging now) and met Leo Pajoy and Roger Torres. They were quite gracious, and even posed for a picture. It doesn’t happen often when living with CFS, but sometimes spontaneity works out just fine.


Preemptive Rest, originally posted on August 28, 2012

I continue to wear my heart rate monitor every day, and generally listen to its alarm.  When it starts to sound, I sit down (although not instantaneously I will admit). And when I hit the part of the day where it goes off every time I get up or move around, I know I’m done for the day. If I’m lucky, it’s after dinner. But I’ve found that whenever I am really active, the trigger-happy time of day comes earlier. I don’t know for sure, but it seems to me that once I’ve used up whatever energy stores I have, my heart rate rises more easily and stays elevated. A constant alarm is a pretty hard signal to ignore, and if my family is around it’s impossible. One good thing about the alarm: my husband and family are insistent about my listening it. Double edged sword, that, since it’s impossible to get away with overdoing it.

Today, I started the next phase of incorporating my true anaerobic threshold into my daily life: preemptive rest. In his self-help course, Bruce Campbell says that preemptive rest is one of the most important tools for people with CFS. Preemptive rest, or rest to prevent symptoms, is scheduled rest taken regardless of how you feel. By resting before you feel tired, it is possible to reduce symptoms and improve stamina. In the context of the anaerobic threshold, resting before reaching that threshold gives your body a chance to recover from activity before you have gone into “oxygen debt.” In theory, this might increase the sustainable amount of overall activity by rebuilding energy stores before they are depleted.

I’m skeptical. I don’t doubt that the theory has merit. I’m skeptical about my ability to follow through with it. Lying down when I’m not tired seems like a waste. My capacity is so limited, it seems pointless to take a break before I get tired. Along with scheduling preemptive rest, my physical therapist believes that limits on the length of time I spend at any activity will also help. She says that I should take a break after 20 minutes of any activity, but I pushed back on that one. Take a break after 20 minutes on the computer? I can’t get through my email in 20 minutes. I also worry about losing my train of thought. It takes such concentration to write. If I have to take a break every 20 minutes, I’ll have to gear that concentration back up over and over. I would much rather work on a task to completion. I also resist such a regimented approach to getting through the day. Again, my capacity is already so limited that it’s hard to apply even more restrictions to myself.

So we negotiated a compromise. I will take two scheduled rest breaks a day: 20 minutes in the morning and 40 minutes in the afternoon. I will take rest breaks after 20 minutes of physical activity. This means breaking tasks like making dinner into smaller chunks and extending it over more time. And I will take a break after one hour on the computer. I’m tracking my activity, heart rate and symptoms every 30 minutes this week. It’s a laborious pain in the arse, but I don’t think I will stay on track without that kind of record keeping. Otherwise, I’ll just lose track of what I’m doing and how long I’ve been at it.

I took my scheduled rest today, but I did not experience any difference in my stamina or symptoms. It’s only been one day, so it’s impossible to draw any conclusions. I suspect that the benefits from this will only become evident over time, possibly over several weeks. I just hope I have the patience to see it through.


Adapting, originally posted on August 31, 2012

I remember my mother and grandmother canning every year. My grandmother would put up jars of peach halves and applesauce, and my mother made strawberry jam. It always seemed like a silly waste of time to me, since you can buy all those things in a store. But canning is a thing now, and on a whim I decided to try it a couple years ago. One batch of strawberry jam and I was hooked. I can’t explain it, but there is something extraordinarily satisfying about hearing the ping of jars sealing because then you know you’ve done it right.

But canning is a high energy activity. There are several places in the process where you can’t stop for a break. The boiling water in the canner heats up the kitchen. Many recipes require constant stirring. I always dissolved into a puddle on the floor after a canning session. The day I turned 50 pounds of tomatoes into 13 quarts of tomato sauce comes to mind as an example of the insanity.

When I started using the heart rate monitor, canning was one of many hobbies that seemed completely incompatible with this new way of pacing. Certainly my old way of canning is now impossible. But could I adapt the process to be more heart rate friendly? My husband bought a peck of peaches at our local farmer’s market, so I decided to give it a shot. Here’s what happened:

  1. Gather equipment (canner, funnel, tongs) and wash jam jars. Move very slowly so you don’t set of the heart rate monitor.
  2. Sit down for 10 minutes.
  3. Blanch peaches.
  4. Sit down for 5 minutes.
  5. Peel peaches and chop. Mix peaches with lemon juice and hope they won’t turn brown while you rest.
  6. Lie down for 15 minutes.
  7. Drink a large glass of water.
  8. Drag chair over to stove so you can sit while you stir the jam. Make jam.
  9. Wonder how sick women managed to survive on the frontier. Decide that they didn’t.
  10. Remove jars from boiling water. Wonder why no one has invented a better jar lifter that makes you less likely to scald yourself.
  11. Fill jars with jam. Quietly exult that there is one half-jar of jam that will have to be consumed immediately.
  12. Add lids and move jars back to the canner.
  13. Drink a large glass of water. Resist the burning urge to do all the dishes. Lie down for 10 minutes instead.
  14. After jars have boiled for 10 minutes, remove lid and turn off heat. Start the dishes.
  15. After 5 minutes, remove jars from the canner and wait for that lovely PING! as the lids seal. Finish the dishes.
  16. Collapse on the couch.
  17. Test jam on a piece of toast.
  18. Wonder how you got a splatter of jam on the back of your tshirt.
  19. Admire your lovely jars of jam.

Did taking rest breaks make it easier? Yes. My heart rate monitor went off a couple times, but never for very long and the highest it went was 100 beats per minute. I was still exhausted at the end of the process, but I don’t think it was quite as bad as previous canning sessions. That may just be wishful thinking since I don’t have hard data from past years for comparison. My pre-heart rate monitor canning would have taken 1.5 hours. Adding in the rest breaks extended it to 2.25 hours.

I think I’ll pat myself on the back for giving this a try. Rather than assume that this hobby is off limits because of the way I used to do it, I tried to adapt it to my limitations. It’s bittersweet because I was happy to be doing it, but also frustrated that I couldn’t work as fast as I did before. It would be easier if I could recruit help (anyone want to wash my dishes?). And I doubt I’ll be tackling monster projects like 13 quarts of tomato sauce. But I’m really proud of my peach jam, and it will taste better for the effort that went into it.


Imperfect, originally posted September 7, 2012

I’ve had a craptastic week. Three crash days, including one that involved a three hour “nap.” I don’t understand what triggered these crash days, but I never do. Usually, crash days take me by surprise because whatever activity I’ve been doing just doesn’t seem to be significant enough to cause a crash. My husband is rarely surprised by my crash days; he’s always had a better sense of my limitations.

Last week I made jam and had a doctor’s appointment. We had a family dinner to go to on Sunday, so I did very little on Friday, Saturday and Sunday – I just sat on the couch knitting and watching soccer. The crashing started on Monday, and seemed to get worse through Wednesday. I completely gave in on Wednesday, taking that three hour nap and just spacing out the rest of the time. I had hoped to write several blog posts this week, and maybe work in the garden for a few minutes. I did none of this, and am writing this post from bed.

Through all of this, I have been monitoring my heart rate. With two exceptions, my heart rate was good last week. I generally stayed under 95 beats per minute, and when I did go too high I immediately stopped what I was doing to rest. On both Wednesday and Sunday, I left the house which meant showering, drying my hair, applying makeup. On both days, my heart rate soared as high as 110 beats per minute during the process of getting ready. I took rest breaks (shower, rest, dry hair, rest, get dressed, rest, etc.) to bring my heart rate down, but then it would jump when I moved to the next step in the process. It was frustrating to say the least. On both Wednesday and Sunday, I had several episodes where my heart rate was high and I briefly felt like I might pass out. And on both days, my heart rate stabilized while I was out of the house to around 87 beats per minute.

So were those episodes the cause of these crash days? Was it the high heart rate while I was getting ready? Or was it the near fainting episodes? Both? Or was the crash the result of leaving the house twice? Or that plus making jam? Or none of the above? All of it? This, in a nutshell, is the maddening part of living with CFS. Despite everything I have learned about pacing, despite monitoring my heart rate carefully, I still have crash days. And because life is not a carefully controlled experiment, I don’t know which component or combination of conditions caused the crash days.

I hate crashing. I hate being unable to do simple things like sitting upright to knit, or talking to friends on the phone. I hate being unable to accomplish the things on my modest to do list. I hate the feeling that I am just taking up space and using resources without producing anything or giving something back. And I hate not knowing – after all these years – how to avoid crashing.

Using a heart rate monitor for pacing is an imperfect system. The monitor can’t capture the energy drain of cognitive and emotional activity. And despite my staying within the heart rate limits and breaking activities into pieces for an entire week, just two hours of elevated heart rate was possibly enough to cause three crash days. The heart rate monitor is imperfect, and I am most definitely imperfect in applying that system.

You know what else I hate? Complainy blog posts. I don’t like writing them, and I assume people don’t like reading them. So I will end this on a positive note. A friend called me yesterday from the store to ask what I needed. I couldn’t think of anything, but she insisted. When she dropped off the fruit I asked for, she also brought me flowers for no other reason than that I had a bad week. This friend has struggles of her own, but she took the time to take care of me this way. It turned my whole week around, because now I feel profoundly grateful instead of defeated. It’s the love and support of my family and friends that makes this illness bearable.


Rest Medicine, originally published November 28, 2012

I have been working really hard at resting. That probably doesn’t make sense, but I have been struggling to incorporate preemptive rest into my routine and it feels like a lot of work. The rationale for preemptive rest is that scheduled breaks help your body restore its energy capacity because you are not pushing to the point of exhaustion. Bruce Campbell explains preemptive rest very well, and credits it as a key component of his own recovery.

I was very resistant to trying it. My functional window of opportunity is so small and fleeting. Why should I interrupt an activity to rest, especially when I feel like I can keep going? I’ve always been a power-through-it kind of person, and I’ve approached CFS the same way. Taking two scheduled breaks a day to lie down and rest, regardless of how I feel, has been a huge emotional disruption. I hate this daily reminder that I am weak. I hate feeling like a sick person who has to lie down after an hour on the computer. I don’t want to need this rest. I shouldn’t have to need it. I should be able to overcome these limitations, not feed them or cater to them. When I started taking these rest breaks, I hated it so much I would lie on my bed and fume about it (and yes, that defeats part of the purpose of resting).

But I wanted to give this method a fair trial. I knew I had to change the way I think about the rest breaks in order to get any benefit from it. I thought about treatments for other diseases and how those patients probably don’t enjoy the process either. If I had cancer, I would hate chemotherapy but I would do it. In fact, I think I would attack chemotherapy with a “let’s do this!” attitude. Cancer? Screw cancer, give me the chemo – I’ll take it and kick cancer’s ass. Rather than seeing preemptive rest as a burdensome imposition, would it help me to treat it as a daily medicine?

I don’t get pissy about taking my medications; I need them, so I take them on schedule every day. But I am still struggling to feel that way about preemptive rest. For example, I should lie down right now but I want to finish this blog post before lunch. I’m at war with myself every day because my expectations and desires are always bigger than my energy capacity. No matter how short my list is, no matter how much I have reduced my expectations, I never accomplish everything on my list. Taking rest breaks feels like a disruption and waste of time.

Would I resent chemo like this? All the horrible side effects and agony of chemo have a purpose: to rid you of cancer. I see my medications the same way: I take pain medication and it helps my pain. I am trying to bring the same attitude to preemptive rest. The rest breaks are necessary, just like my pain medication, and I should embrace it as another part of my arsenal. I realize that it might take months to see benefits from any treatment, whether it’s chemo or a new pain medication or rest breaks. I know I have to stick with it, and part of that process is adopting a positive attitude towards a method designed to help me. I am working hard, every day, to give rest breaks a fair chance.

Update (11/30/12): After I published this post, ME/CFS Self-Help Guru posted about reframing challenges in a positive way.


Insufficient Data, originally published December 4, 2012

One of the most frustrating aspects of coping with CFS is the lack of definitive data. A PubMed search for “chronic fatigue syndrome” yields 4,877 results (as of today), but as a patient on the front lines I have to make treatment decisions based on theory, supposition, and anecdotal evidence.

Case in point: I’m wearing a heart rate monitor and reducing my activity to stay below my anaerobic threshold based on a few studies that show CFS patients have disruptions in their energy metabolism. There is even a published case study showing that following this pacing method and short duration exercise leads to improvement in functional capacity and activity recovery. But because my anaerobic threshold is so low, I exceed my heart rate limit just by climbing 12 steps. An expert advised me to reduce my activity to stay below the heart rate limit, even if it meant stopping halfway up the steps to rest or using a shower chair. Another expert endorsed the use of beta blockers to lower my heart rate. That topic is worthy of a separate post, but there are patients who have benefited from this approach. Sue Jackson has written excellent posts about her experience doing just that, and she credits beta blockers with drastically improving her functional capacity. When I asked the first expert about beta blockers, the expert responded that beta blockers would not change my actual anaerobic threshold but would mask when I was exceeding my limit by lowering my heart rate.

So how do I decide what to do? Expert One advises significantly reducing my activity to obey the heart rate limit, and not using medication to lower the heart rate. Expert Two advises using the medication to lower heart rate in order to increase my activity levels. There is no research that definitively answers this question. There have been no case control studies or systematic long-term follow up. Both experts can support their theories with anecdotal patient data. Both experts can support their theories with sound reasoning. There is simply no data that answers the question: which method is better for my health?

Large treatment trials, longitudinal studies, and sophisticated research into etiology and disease course drive treatment decisions for many diseases and conditions. If I had breast cancer, detailed analysis of the tumor would tell my doctor which chemotherapy regimen to use and for how long. If I had a broken hip and a heart condition, a physical therapist would be able to prescribe a rehab program suitable for both conditions. If I was HIV positive, triple therapy would be prescribed and tightly monitored to make frequent adjustments.

But those of us with CFS are left flapping in the wind. I think even the best CFS expert doctors in the country would acknowledge that treating people with CFS involves a lot of trial and error, educated guesses, and fine-tuning. The CFIDS Association recently stated that CFS patients on Patients Like Me report trying over 800 different treatments. This is insane! It’s like throwing spaghetti at the wall to see how much will stick.

Making CFS treatment decisions should be like playing sudoku – there might be some trial and error, but there is inherent logic to the puzzle. Instead, making these decisions feels like the Sunday New York Times crossword on steroids, with incomprehensible clues and multiple right answers. No one can get all the right answers based on insufficient data. Should I take the beta-blockers, or should I buy a shower chair? Your guess is as good as mine. Literally.


Comparing Exercise Advice, originally published January 18, 2013

Exercise is an issue for every CFS patient, and there is no shortage of advice on whether and how to do it. On January 14th, the CDC hosted a conference call as part of its Patient Centered Outreach and Communication Activity (PCOCA) efforts. Dr. Nancy Klimas and Dr. Connie Sol presented their exercise advice for people with ME/CFS. I’ve seen some sharp criticism of the presentation, so I thought it would be helpful to compare their advice to the recommendations from Dr. Christopher Snell’s group at the Pacific Fatigue Lab. Dr. Snell and his collaborators (Staci Stevens, Todd Davenport, Mark Van Ness) have done the most work on exercise capacity in CFS, and published a conceptual model for safe exercise in 2010. You can learn more about their work in this webinar they gave last year.

Why Do It?

It’s common knowledge that exercise is an important part of preventing heart disease, diabetes, and osteoporosis. And I think most CFS patients would be eager to exercise if it did not make us sick. On Monday, Dr. Klimas said that deconditioning explains much of the dysautonomia seen in CFS. I think she may have overstated it because there are physically fit people who develop POTS, NMH or other orthostatic conditions, but deconditioning certainly wouldn’t help. Dr. Klimas described herself as the “perfect advocate to talk about exercise” because of her decades of research and clinical experience focused on biomarkers and immune function. She does not believe exercise is the only possible treatment for the disease (unlike proponents of the psychosocial model), but she also does not think it should be ignored.

I should note that while Drs. Klimas and Sol use exercise to provoke PEM so they can measure the gene expression cascade that follows, they have published no papers on exercise physiology in CFS. Snell and his group have published multiple papers on the topic, including a study that shows deconditioning is not the cause of PEM. Despite showing that there is metabolic dysfunction unique to CFS, Snell and many other experts recommend being as active as is safely tolerated. Stronger muscles will lead to less pain. Being as physical fit as possible will improve our chances with heart disease and other long-term consequences. If we can safely tolerate a certain kind or level of activity, we should do it. The emphasis must be on the word SAFE, and activity should be tailored to each individual patient’s capacity.

Identifying a Target Heart Rate

My articles on PEM and exercise explain the body’s energy systems and the importance of heart rate in detail. For purposes of this post, I can say that both Klimas and Snell agree that heart rate at the anaerobic threshold is the limit for safe activity in CFS. So how do we identify the correct heart rate?

Dr. Sol uses a single test in which the patient exercises to exhaustion. Multiple measurements help identify the heart rate at the anaerobic threshold, and then that heart rate is used to design an individualized exercise protocol. Dr. Snell and Staci Stevens use a two day maximum exercise test to do the same thing. That second test is critical because CFS patients’ metabolic function declines significantly after the first test. In my own case, my heart rate at the anaerobic threshold went from 105 on day one to 95 on day two. Under Sol’s system, 105 beats per minute would be my maximum heart rate, but that would be too high on any day that I was not well rested. My personal view is that by skipping the second test, Sol and Klimas are at risk for setting the safety limits too high for most patients.

Not everyone can take a two-day exercise test (for a variety of reasons), so there is a simple calculation for guessing at your heart rate at the AT. Klimas and Sol recommended: 220 minus your age times 60%. In my case, (220 – 44) x 60% = 105.6 bpm (matching my AT on day one).  Stevens recommends 50%, or (220 – 44) x 50% = 88bpm (lower than my AT on day two). Here’s the problem with the calculation: a bedridden patient would not have the same limit as me (housebound) or a friend of mine (who can leave the house every day). We’re all sick with CFS; we all have metabolic dysfunction. But it’s unlikely that our heart rate limits are identical.  Patients must be cautioned that the calculation is a guess only; careful experimentation is necessary to establish your safe level.

Defining Safe Activity

Both Sol and Stevens agree that the safe level of activity is the level that does not produce symptoms. Dr. Sol said that she knows she has prescribed the right level of activity when the patient reports that he/she feels no difference. Stevens has said that any symptom flare that lasts more than a few hours is too much and that activity must be scaled back.

What qualifies as exercise? Both Sol and Stevens agree that activities of daily living should be seen as exercise. The effort required to cook a meal or shower can raise your heart rate too high, and may need to by modified to stay in the safe zone. They both agree patients should examine the activities that make them tired, and try to adapt and pace those activities. Dr. Klimas said that these methods will lead to a more even, reliable supply of energy; Dr. Snell has said the same thing.

Beyond activities of daily living, Sol suggested yoga or non-weight bearing activities such as water exercises. She recommended starting with a minute or two of activity followed by a few minutes of rest, repeated five times once a week to start. In contrast, Stevens recommends a more modest starting point of stretching and range of motion exercises. Patients should advance to low intensity, short duration activity only if the stretching is well tolerated. For Snell and Stevens, heart rate is not the only indicator of capacity. Patients must pay attention to their perceived level of effort, and avoid activities (or activity duration) that feels “somewhat hard.”

Severely Ill

There is no question that there are CFS patients who are too sick to come to a lab and pedal a bike for eight minutes. Accordingly, these patients have not been studied for metabolic dysfunction and exercise capacity. Drs. Klimas and Sol made no comment on Monday about what these patients could or should do. I interviewed Staci Stevens as part of the research for my article on exercise, and based on her advice I wrote:

A bed bound patient may need assistance to turn in bed or complete basic activities such as showering, but heart rate biofeedback can help identify the appropriate pace and duration of these activities. Bed bound patients can also try deep diaphragmatic breathing, perhaps six deep breaths at a time. Deep breathing will lower heart rate, and also work the large muscles of the diaphragm. Severely ill patients might begin with passive stretching, where a physical therapist or caregiver moves the patient’s limbs slowly and carefully to gently stretch muscles and try to improve flexibility.

This must be done very cautiously. There is simply no published data that investigates the metabolic dysfunction in bedridden CFS patients or that explains what they can do safely. The cost of trial and error can be high, so patients should be very careful.


Reasonable and realistic expectations are an important part of any rehabilitation effort. Snell and his group describe the goal as being as active as possible within toleration, and hopefully this will lead to a more predictable energy supply (eliminating the push-crash cycle). In contrast, Dr. Klimas said on Monday that patients will show improvement if they follow the program, and that when they stay below the AT they feel “much better.” Then Dr. Klimas claimed that some patients have been able to return to work or athletics. This is an extraordinary claim, especially in the absence of published data. How impaired were these patients to start with? How long did they follow the program, and was the program standardized across patients? Did these patients show objective improvement on subsequent exercise testing? How long did their improvement last?

Personally, I was very surprised to hear Dr. Klimas make this claim. She is quite familiar with the severity of the disease, the dearth of treatments, and the danger of false hope. In my opinion, claiming that pacing with a heart rate monitor and slowly progressing exercise is curative in the absence of published data is misleading, at best. The notion that exercise will make us all better is pervasive and potentially harmful to patients. Show me the data.

The Comparison

There are many similarities between the advice of Klimas and Sol on the one hand and Snell and Stevens on the other. Both sides agree that patients should be as active as they can safely tolerate. They agree that activities of daily living should be seen as exercise. Both recommend using a heart rate monitor to pace activity by staying under the anaerobic threshold. Both recommend starting very slow with exercise, and avoiding exercise that increases symptoms.

There are also some differences. The two groups calculate the safe zone differently, with Klimas and Sol potentially setting limits higher than patients’ anaerobic thresholds. Klimas and Sol offered no advice to bedridden or other severely incapacitated patients, while Snell and Stevens offer at least a little guidance. Finally, Snell and Stevens do not suggest that their program is curative in any way. They suggest a cautious but realistic goal of eliminating the push-crash cycle. In contrast, Dr. Klimas was quite expansive in her claim that her program had helped some patients return to work.

Despite their differences, both groups give the same basic advice to CFS patients: use a heart rate monitor to help you recognize when you are doing too much; ensure adequate rest; be as active as you can without triggering symptom flares or post-exertional malaise. This is a good starting point, but I hope that one day we will have access to physical therapists and others trained to help us navigate these limits. From my own experience, trying to apply this expert advice on my own has been unnecessarily frustrating.


Meeting METS, originally published June 21, 2013

It has been more than a year since I had a two-day exercise test. My exercise test report was full of all kinds of jargon, and over the last year I have been trying to decode and apply it to my pacing. One of these concepts is “METS,” a measurement of the effort needed to do an activity, and correlating my results to the real world has been nothing short of shocking.

METS is the Metabolic Equivalent of Task, and is a measure that expresses the relative energy cost of activities, with a MET of 1 equal to sitting quietly. Walking at a slow pace has a MET of 2, meaning that walking slowly costs twice as much energy as sitting quietly. In exercise testing, METS is calculated from the maximum amount of oxygen consumed (VO2max), although it is not intended to perfectly correlate to an individual’s metabolism. But for purposes of understanding the relative costs of different activities, and estimating parameters of an individual’s functional capacity, METS is used as a standard measure.

In my exercise testing, my VO2max (which is the maximum amount of oxygen I consumed) correlated to 5.9 METS. This means I can’t do any activity that requires more work than 5.9 METS because my body can’t perform that level of work. My anaerobic threshold (as I’ve previously explained) was very low. A healthy person with a maximum METS of 5.9 should cross the anaerobic threshold between 3.0 and 4.425 METS. In the first test, I switched to anaerobic energy at 1.9 METS. In the second test, my anaerobic threshold occurred at 0.92 METS. Needless to say, this is abnormally low!

The real value of METS is in understanding the energy cost of activities relative to each other. The Compendium of Physical Activities is a list of the METS of numerous activities, and provides a way to look at the intensity or work capacity needed for those activities. When I took the METS results from my test and applied it to the Compendium, I was shocked to see the kinds of activities that are outside my functional capacity.

As I said, my absolute maximum capacity is 5.9 METS. This means I should not attempt any activity over that limit. Examples of activities out of my reach include scrubbing a bathroom with vigorous effort (6.5 METS), moving household items upstairs (9.0 METS), carrying 16-24 pounds up stairs (6.0 METS), or shoveling snow (6.0 METS). Many of the activities are things that I have long since given up on ever doing again, such as hiking (7.8 METS) or swimming slow laps (6.0 METS).

It is more shocking (devastating?) to see the activities over my functional capacity at my anaerobic threshold. On the first test, my AT occurred at a METS of 1.9. This means that any activity over 1.9 METS requires me to rely on anaerobic metabolism. As a result, I can’t sustain those activities for very long and I experience severe and disproportional fatigue afterwards. So I have to be very cautious with those activities, even on non-crash days. What kinds of activities are over the 1.9 limit?

  • mild stretching (2.3 METS)
  • Hatha yoga (2.5 METS)
  • general kitchen activity (3.3 METS)
  • light cleaning (2.5 METS)
  • washing dishes (2.5 METS)
  • cooking, moderate effort (3.5 METS)
  • changing bed linens (3.3 METS)
  • container gardening (2.3 METS)
  • light weeding (3.5 METS)
  • playing piano (2.3 METS)
  • showering (2.0 METS)
  • walking at a slow pace (2.8 METS)

These are basic tasks of living. Some of these I don’t have to attempt (like changing bed linens) because I am fortunate to live with a helpful husband. But if I lived alone? I know so many patients who live alone and have to expend all their energy just doing the basic chores of daily living, and then spend time recovering from them. The METS limit also helps explain why walking at a slow pace has been so difficult for me. I can do it for a short time, but with caution and the risk of crashing. Now I know that it is over my AT limit of 1.9 METS, so OF COURSE it is difficult for me.

Not surprisingly, the activities I spend the most time on are under the 1.9 METS limit. Sitting and watching tv (1.3 METS), reclining while reading (1.3 METS), and knitting (1.3 METS) are all in that safe zone. But as my exercise report noted, when I am crashed my AT occurred at < 1.o METS, which means lying down and doing nothing, or even sleeping, is at or above my limit. The other important thing to note is that METS and the Compendium are both focused on physical activities. I have found no way to measure cognitive load or capacity.

A healthy person spends most of her time under the anaerobic threshold, even while exercising. When she finally crosses her AT, she experiences the rapid onset of fatigue and will stop the activity and rest. And even if she reaches her maximum oxygen consumption and bonks, she will recover to normal within a day or two.

My exercise test shows that my entire energy system is broken all along these stages. I spend most of my time over my anaerobic threshold, except for when I am sitting and reading or knitting. Because I spend so much time over my AT, I have become accustomed, even immune, to increasing fatigue and the signals to stop and recover. And I bonk on a regular basis, without ever approaching my VO2max.

In the last year, I have had to examine all of my activities and modify where I could to try and accommodate these limits. But I don’t live in a world where I can stop washing dishes and cooking and showering. I don’t want to give up slow walking or baking or light gardening just because it is over my AT. Over many months, I have used the heart rate monitor, METS Compendium and a perceived exertion rating of “somewhat hard” to control my physical activity levels. I know it is not practical (or desirable) for me to live below the AT/1.9 METS limit. But I have really struggled to find the right balance between the two extremes of never getting off the couch and cooking/gardening/walking until I bonk. It seems like there should be a big slushy middle ground, but I have struggled to find it.

60 Responses to Exercise and Heart Rate

  1. Cheryl says:

    Thanks so much for sharing your experience. I just got a heart monitor and did the calculation (220-age*.6) that put my AT around 108 bpm. (It isn’t as good as getting the tests done but that’s not an option for me right now). I know that I am presently crashed but it is frustrating to exceed 108 bpm just by rolling over in bed, let alone sitting up to eat or using the bathroom. It has been helpful, like you said, to realize what things raise my heart rate and I’m hopeful that I’ll recover from this crash more quickly because I’m more aware of my AT. It was encouraging to read what you have been going through and that I’m not alone and am hopefully on the right track. Thanks again!

  2. Lynda McKay says:

    I just found your articles and this blog and they opened my eyes in a way my doctor hasn’t been able to for many years. Not that he didn’t try, but I also deal with FMS and serious chronic pain unrelated to either CFS or FMS and did not want to add one more thing to what I was dealing with and did not understand how many of my symptoms are CFS. Now I understand that the days when a shower feels like and overwhelmingly energetic activity or when tidying anything is impossible that I am not just being lazy that day. I do know that I have to plan my busy-ness and make sure that I have time for my “down” day/s afterward but thanks to your articles and posts I now have a much greater understanding of what I am dealing with and will now take it much more seriously and hope for a better outcome. I am fortunate that I am not as seriously impacted as others and send light and love to all. Lynda

  3. Brent says:

    So sorry to hear how poorly you are doing. One question I had is that I understand relapses may result in a permanent reduction in baseline activity. Was it worth the risk of pushing yourself at Pacific Fatigue Labs in the absence of a disability claim? What other benefits have you realized from this testing?

    Brent Handel J.D.,Q.C.

    • Jennie Spotila says:

      Brent, it was absolutely worth the risk to have the testing done (although I did not have the testing done at the PFL). I did eventually return to baseline, and the information on my anaerobic threshold is helping me with the difficult process of pacing. I also have the report in the event that I need it for disability purposes. I thought it was definitely worth the expense, the risk, and the long recovery process.

  4. rlhanson says:

    Your blog helps me tremendously. I am at the stage of dealing with doctors who refuse to believe, confirm, or treat my CFS (diagnosed back in 1995). I feel like I am losing my mind along with my business while fielding questions from friends/family of “so what’s wrong with you?
    Thank you for your posts and candor.

    • Jennie Spotila says:

      I was diagnosed in 1995 too. I am so glad to hear that the blog helps you. Thank you! If there are specific topics or questions you would like to see covered, please let me know.

  5. Pingback: Webinar: Top 10 Things You Need to Know About Post-Exertion Relapse

  6. Liz says:

    Jenni, thank you so much for blogging about this. I don’t know whether to laugh or cry over your account of putting the heart monitor up to the dizzying heights of 105, so I did both, because I’m also about to begin the whole heart monitor thing and I’m scared because I know it’s going to be beyond-imagination low. After 25 years, I should surely grasp how ill I am, and yet I don’t (or at least I refuse to). I anticipate every reaction you have described above, and I hope I’ll find a balance between being infuriated at being told off all the time by the bleep and the possibility that heeding it will mean I don’t have to feel so ill all of the time and might, might, even improve my health a little. Deep thanks to you for getting onto this journey ahead of us and for being so generous in sharing your experiences, both practical and emotional.

    • Jennie Spotila says:

      Thank you, Liz. I can really identify with what you said about denial. I wonder if there is any difference between the denial we deal with and the denial that people with MS or cardiac disease deal with. I know it is such a struggle for me to accept my real limitations (thus the cursing at my heart rate monitor), and I wonder if CFS patients experience this differently than others.

  7. Liz says:

    @Jennie Spotila I think the denial for me comes primarily from the decades of not being believed by medics. I astound even myself with how easily I am knocked off course when I read or hear someone say something disparaging and disbelieving about ME/CFS and therefore, indirectly, about me; I *know* I’m ill and yet immediately I doubt myself all over again – maybe I am imagining it, maybe I am a wimp/trying it on/seeking attention, etc. Even as I know that’s absurd, it had such impact during my formative years that I am left unable to take my own needs as seriously as they require, which is perhaps partly why my health has remained so poor. This might be where the heart rate monitor comes in with an objective measure telling me that it’s okay to do what my body requires. I’m guessing people with MS in the past went through a very similar process, when that too was thought to be an imaginary illness; it takes a toll above and beyond the illness symptoms and constraints.

  8. Kalpana says:

    Dear Sick and Tired:I find it interesting that you do not unrnsdtaed why this partiular study is taking its’ time in the selection process. Due diligence is imperative within the science world in order to A) be taken seriously; B) Publish viable and valid scientific studies and C) turn a theory & hypotheses into a fact.This study is doing an excellent job of slection based on patient chorts, geographical range and narrowing a subset down which has never been defined thus far for CFS. They are also working to prove viruses and pathogens DO exist within CFS subsets and that CFS is biological based.Perhaps you are correct in your assumption that this study is going too slow and not trying hard enough. The staff and scientists are working round the clock on this. However, perhaps you could do a much better job .funding this study .getting the appropriate cohorts together .putting together scientific and administrative teams and percuring a lab and all the necessary hoops to jump through to get this done. I do believe you should do this study as your ideas on how it should be done are astounding. I say .if you are going to launch missiles at a study please go do the study better before you push th launch button .

  9. Sally says:

    Hello Jennie and thank you for sharing this series of articles.

    I have found your report very informative and decided to try wearing a HR monitor for a day today. (Hubby has one for his cycle training.)

    So far I’ve got up and made breakfast and surfed the internet…. Right now sitting at the computer my HR is 94 (so just below your max) moving around the kitchen to get breakfast took my HR to 121! So I really don’t know how you cope with keeping your HR so low all the time!

    Perhaps my Anaerobic Threshold is higher…. I also tended even before illness to have a higher resting heart rate than others (I put it down to low blood pressure!) However it is quite interesting what things cause it to go up…. raising my arms to higher shelves was the high point this morning.

    I just used a calculated AT – I am nearly 50, so @ 60% of my calculated max HR is 105 …. 50% would be 85. I’m going to wear it more today doing the things that I have found I am mostly able to do without relapse….

    Maybe today I am close to a relapse threshold? Do you find that sometimes things you can normally do can suddenly throw you down unexpectedly? Maybe this is a good way to check out when that Relapse Threshold is about to be crossed. At the moment I don’t always see it coming! (I have been ill with this for only 6 months and don’t even have a firm diagnosis yet, but so many things just add up…..)

    Again – Thank you for taking the time to write this, I have found it very thought provoking and helpful.

    Keep trundling on! 🙂

    (Sorry when folk ask me how I am, I now reply “just trundling on” it’s usually easier than saying “Not better yet!” which I don’t like saying and they don’t like hearing!.)

    • Jennie Spotila says:

      Lifting your arms, showering or moving quickly can all spike your heart rate so that’s not surprising. I think you’re doing the right thing to observe your heart rate while doing things that you know do not cause relapse. That will be far more reliable and customized than an AT calculation.

  10. ruth says:

    Thanks for sharing this experience and information. I’m still trying to work out how I can work with this process. I have rheumatoid arthritis diagnosed when I was15 and fibromyalgia, diagnosed about 6 years after a rear-end car crash. Fatigue is my most devastating symptom followed by pain. I haven’t yet found a doctor/specialist who can intelligently help me. What I’ve been offered is a 9 week course at the hospital pain clinic, run by a physiotherapist and a psychologist. Information given to me says that they work with mindfulness, cognitive behaviour therapy and graduated exercise. I’ve done graduated exercise programs three times before over the 22 year period since the car accident and crashed very badly each time.

    I’m thinking it would be good for me to work with the heart rate as described so I can give myself a chance of not crashing with the upcoming course.

    I’ve been wearing the Heart Rate Monitor and noting how my heart rate behaves but I’m not sure about working out my limits. My HR on waking is usually between 88 and 100. When I’m sitting resting it’s about 110. Showering and getting dressed takes it to over 145 (and I’m sweating and fatigued).
    I’m 61, so my rate for 50% comes to 79.5 bpm, 60% is 95.4 bpm. Both of these are lower than my usual HR. I tried to set the limits on my HRM and I can’t get them to go low enough unless I put my age in as 70 -85. Then the beeper won’t shut up:)

    Any suggestions on how I can work out my AT and put the numbers in the monitor?
    I think the process described here might be just what I need and I’m very grateful.


  11. Lori says:

    I was diagnosed by a doctor in about 1994. I had gone to the doctor time and time again with them telling me I was depressed. Anyway, I have dealt with the illness with having “down days.” But, this last event I was down for weeks. Thankfully I am in-between employment. Thank you for the post-exercise syndrome affect information. Now I know why. This last time my muscles were sore for days. I am concerned my fatigue is getting worse and am thinking it might be the oxygenation factor. I am thinking about getting a sleep study but have no insurance. I have to work…..I have used supplements such as Reishi mushrooms which have helped. No one seems to understand….no one knows what you are going through…….family, doctors……..I live alone and would love to have someone to talk to who understands. Thanks!

    • Jennie Spotila says:

      Lori, I am so sorry that you are struggling with this. I’m lucky to have a solid support network and a few doctors who I can work with. Not having health insurance and needing to work must be really hard.

      One suggestion I have is for you to track your activity and symptom level over the course of a week. See if you can identify activities that trigger symptoms (recognizing that symptoms might be delayed up to 24 hours or so). That might help you find your limits. I keep a daily log, and over the years it has become a great resource. Being able to show that log to my doctor backs up my credibility and also helps us track my limitations over time.

  12. Jim says:

    you wrote: “You know what else I hate? Complainy blog posts. I don’t like writing them, and I assume people don’t like reading them.”

    I completely understand that you don’t like writing ‘complainy blog posts’. After all, we hate every aspect of this horrible illness. But actually it is helpful to me to read them, to know so many other folks are having the same experience. It may be uncomfortable to ‘normals’, but that’s their problem.

    Maybe their discomfort will spur them to prod the medical industry into actually taking this devastating disease seriously.

  13. Carollynn says:

    I really appreciate your posts, too, that you put into words for me and us what this illness feels like and does to us. It’s so helpful to be able to share posts with others so that I don’t sound “complainy” alone!

    A few months ago you helped me to approximate my AT–similar to yours because we’re about the same age. I appreciated this much because I don’t want to go through the backlash of actual testing. I have used the info in fits and starts, and it has definitely helped me to rest more often when my heart rate is high. I don’t have a heart rate monitor but use a blood pressure cuff, and I like being able to document both rate and pressure for the combo is quite interesting. About 50% of the time it turns out that my heart rate is highest when my blood pressure is lowest, but the other 50% it’s all over the place with nominal physical or mental activity. 147/54 with a heart rate of 118 after light gardening for 30 min. and felt pretty good (and that blood pressure, but high and low!)–or something like 76/47 with a heart rate of 85 after sitting at my computer for two hours but I felt pretty awful. It seems that blood pressure must play into this as much as heart rate. Admittedly my information is less complete because I have to stop to take it rather than having a monitor that is taking it continuously.

    Re: added constraint of monitoring in an already limited life: Last month my husband and I went on vacation and I chose to not bring the monitor. First, the usual stuff: travel is very hard, can’t do it often, wonder if I should do it at all, but my wonderful husband needs to get away and I accept that I will have a backlash from doing so because I want to do that for and with him. I am incredibly blessed that he is a napper and has always felt, from before the time I got sick, that simply napping in another geographic location is vacation. We planned well, chose places to stay that meant that if I did nothing but sit there and read or crochet or draw or nap it would be an incredible treat. And it was. I did go on a few little “nature walks”–a far cry from the hiking trips we used to take, but wonderful to be out in nature–and I did crash a bit during the trip (ten days away) as well as after. But I was really glad that I left the cuff at home for I would not have done any of it otherwise, and it did my soul so much good.

    On a related note, I feel like I’ve had a slight improvement over the last few months, related to doubling up on a supplement that has always been helpful, Immunocal, as well as staying on NADH every day. Immunocal is expensive, so for years I’ve taken only one packet/day regularly, two packets if attempting a “big day” with an outing. With NADH, I’ve found it gives me a great boost but that if I take it all the time it stops working (and then I don’t have the ability to boost, so I call it my “Flowers for Algernon” supplement). Again I save NADH for a “big day.” In June, when I started to follow my blood pressure and heart rate, I decided I’d try an experiment with taking two packets of Immuncal every day through our Sept. trip and the month following. During the trip I took NADH eveyr day, and I’ve mostly continued with this since our retun a month ago because the days I’ve not taken it have been bigger crash days. This shift is sublte, hard to correlate with anything I’m measuring, but it seems that I might return to a more normal heart rate more quickly after it’s elevated, that the daily crash is less severe. My post-travel return to my normal, disabiled as it is, still might have been somewhat mitigated by this regimen. I know I will have to give the NADH a break soon, but I’m not ready to yet. And I am not going to give up the two Immunocal/day.

    I’ll keep you posted on how this goes in the coming months. I almost wrote about this before our trip but wanted to feel a bit more confident. It could just be that I’m having a relatively good stretch for no rhyme or reason. Funny how that is, isnt’ it? We get used to looking back over months and years to guage how we’re doing rather than days or even weeks? Remember when you could say “if I just rest today I’ll be back to work tomorrow”? I am more circumspect in this way right now, too, for it was nine years ago mid-Oct. that I began my descent into illness, finally waking up one morning in Dec. thinking “this feels like mono all over again.”

  14. omy says:

    Oh,,, thanks for your “complaining” you made me laugh, love it, and made me feel “normal”. I felt on 2008 and since that time I feel ill most of the 24 hours of the day, for the past four years. Your site has a highly valuable information, thank you for your time and for sharing of this information.

  15. Angie says:

    Im so grateful to see this work being done. your wonderful. lets just say i needed to come across your work as i had lost hope awhile ago and you gave it back to me. ok. I was wondering if they monitored the brain activity at all during the exercise test? I’m very curious what physically is happening during my fog outs. Not to mention how dumb this as made me feel over the years although I know I’m not. Very frustrating and flat out ridiculous.

    • Jennie Spotila says:

      Angie, I think Dane Cook has done imaging studies post exercise. They can’t do them during exercise because of the space needed to exercise vs. space available in an MRI.

  16. Angie says:

    Jennie I am what you wrote in the 4 part article to a T. now with that my step mom has suggested I go to mayo. Other family asked me to figure out where I would like to go and they will figure out. I really would like a place that checks all aspects that go with all this especially PEM. Not sure but from what I’ve read I’m not sure mayos approach is the best. But I’m not sure.ugh.

    • Jennie Spotila says:

      Angie, do not go to the Mayo clinic right now. I’ve heard second and third-hand reports from patients who have gone there and been very disappointed. To my knowledge, Mayo is not conducting exercise testing on CFS patients to identify PEM. I recommend you go to Betsy Keller at Ithaca College for that, or to Staci Stevens at the Pacific Fatigue Lab. If you want to consult a specialist about the entirety of your illness, then I recommend someone like Dr. Cindy Bateman or Dr. Chuck Lapp, to name just two.

  17. Sally says:

    Jennie, Having worn the HR monitor for a while, I found that it tends to be uncomfortable for day to day use. I still use it when going out on days I might be tempted to be more active…

    However I have started to use a little gadget called a FitBit One to monitor how active I am through each day and so to try to keep my activity levels regulated. It is basically a neat little movement sensor that can tell me how many cals I burn daily…. (and car rides etc can be logged online so every bump in the road doesn’t count as a stride!)

    I know you have been using the HR monitor to help you with your pacing..and I am very optimistic that this Fitbit will prove to be really useful for the needs of ME/CFS patients.

    If you’re interested I can comment further….

    Best wishes,

    • Jennie Spotila says:

      Please share your experiences, Sally. The heart rate monitors I’ve tried are not built for all say use, either in comfort or durability.

  18. Sally says:

    I have a FitBit One from http://www.fitbit.com

    It is a small gadget about the size of a memory pen that slides into a holder that clips to clothing. It has a movement sensor and a height sensor (to detect climbing stairs!).

    The idea is to wear it all day and let it monitor your activity. When you add your height and weight to the supporting website, it will also give you your calorie burn as it happens. A small dongle is left plugged permanently into a USB on your computer so that every time you sit at the computer it updates your info to the site. (You can also check the number on the FitBit, or if you have a fancy phone it will talk to that too.)

    There are various settings you can use and obviously for our needs we are sedentary! The default “targets” are things like 10,000 steps a day etc. But these can be easily edited on the dashboard to a more realistic “target”. Of course we are probably aiming to stay below target rather than above… but you can play with it to suit.

    At night, the FitBit can be transferred to a soft cuff worn around the wrist to monitor sleep. Set into sleep mode the FitBit records when you wake and fidget. However if lying still, but awake, it will record you as sleeping. In the morning you reset it to the normal mode and it will give you an estimate of your sleeping time and the number of times you woke in the night. I found it really quite accurate.

    The timer used on the sleep mode can also be used to time things like car journeys where bumps on the road may add to the step count. It is then necessary to go to the website and record the time interval as “driving” (there are various options) and to delete the corresponding sleep time. A little bit of a faff, but for those of us with low daily step counts, worth it. I gather some of the fitness bods don’t bother as the erroneous steps accumulated by the car are comparatively so few!

    Okay so now to the lovely stats that the site dashboard can offer: The one I like best is the calories burned during the day. This separates the day into 5 min slots and shows your cal burn on a graph. It also colour codes your activity level. Most of my activity is grey (not active) or light blue (lightly active) with the occasional bit of orange (fairly active). Obviously I try to avoid the red (very active) level!!

    The total cals burned are shown as they accumulate but obviously the full daily total can’t be checked until the next day. Since becoming ill, I have become very aware that my total daily energy expenditure (in terms of calories) is now very low. By recording what I could eat without gaining weight, I had already estimated this (for me) as about 1500 cals daily. The FitBit tallies with this very closely and I have recorded calorie burns of between 1420 & 1560 during this week. With the lowest one being a decidedly low energy day and the highest one was yesterday when circumstances threw more at me than I really wanted!

    Obviously the data is stored and can be used to check activity levels over time and this, I believe is the ultimate strength of the FitBit for us. Everything is recorded: every walk to the loo; trip upstairs; and dawdle outside with the dogs…. And if you do something more active (like weight training haha! or swimming) then you can over-ride the recording for that time later on the computer, just as you did with the car journey.

    The Fitbit itself can be charged using a USB connection and apparently needs about 2 hours every 5 -7 days. It’s that easy!

    It’s cost was £79 so not cheap, but I have found it much easier than using a HR monitor on a day to day basis (although a HRM has other benefits). Oh and it is MUCH more comfortable – I clip it onto my bra and basically I don’t know it’s there.

    I found out one quirk the other day …. it told me that because I had recorded “no significant activity for the day” that it would give me an “estimated calorie burn” based on my height and weight…. obviously this was much too high! A quick chat with FitBit Support and I was directed to an area in my account where I could “disable” the “calorie estimation” function. Problem solved. Worth knowing that…..

    Anyway, there are loads of features to this that satisfy the geek in me and somehow I find that recording every thing helps me to feel just a little more in control than before. The FitBit data will also link to My Fitness Pal – which is a diet and exercise site where I had been recording my food intake, and for the most part this is a fairly seamless connection, with each site updating the other. There is actually a food record section on the FitBit site, but it is nowhere near as easy or extensive as MFP.

    So, I hope this idea is useful to fellow sufferers out there. I think it will help me to be consistent from day to day and week to week; and also help with monitoring any improvements or dips in the longer term.

    Do report back if you find this useful to you too.

    (Having written this I may now copy it to a few other places where ME/CFS folk hang out… and I am happy for others to copy it forward if you feel the info is worth spreading.)

    • Jennie Spotila says:

      Sally, this is very helpful! I especially like the automatic data collection because I hate tracking my heart rate manually.

      How do you know what the “right” number of steps is for you? I’m wondering if it would makes sense to wear the FitBit with the HRM for a couple weeks to correlate heart rate to symptoms to number of steps? Also, does it help at all with measuring cognitive effort? That’s one of the pitfalls of measuring heart rate for me: it doesn’t capture cognitive effort.

      It would have been very interesting to have this kind of data before I started pacing with the HRM. I feel like my activity has been significantly reduced but I have no data to compare.

  19. Sally says:

    First about the HR monitor – Do you have a Garmin? My Garmin tracks and records and then automatically uploads to their website (that is, once it has stopped recording and you place it beside your linked computer). Online it then gives graphs of HR through out the day and I have had amusing times trying to work out what the spikes are. Mostly they are obvious, but one was finally narrowed down to a moment of “heated debate” over something stupid that shot my HR skywards! LOL.

    I found wearing it for a few weeks really brought home to me the difference I could make to my exertion levels just by going slower at everything. I also found that if I was stressed that my base line resting HR increased. eg Sitting on the computer here it would normally be in the 70s, but if later in the day and I was close to needing time out it could register in the 80s or more! However my HR was very variable and the graphs showed a lot of noise, so as a definitive measure of my exertion levels it was not great.

    However I found one dilemma, sometimes my resting HR would drop remarkably low even though it was obvious to me I was stressed…. so it’s not totally reliable.

    So how does the FitBit compare? Well first off, it cannot measure mental exertion at all. However I think I can better judge how much I can take mentally at one time, than I can judge my physical abilities. Perhaps, I’m better at noticing the warning signals because of my history of migraines and some of the stressors/signs are similar to CFS type overload!

    However what I like about the FitBit is the fact that I can start to build a better picture of how active I have been on certain days. For example I know now that I have always completely underestimated the exertion involved with basic housework chores… I do more steps when I start tidying than I thought – ie a session tidying is at least as much as a short walk with the dogs. I had simply never bothered to count it as much of an activity before, assuming that if I just moved slowly that it didn’t take much out of me.

    A few weeks ago I went shopping to Ikea with hubby, and was zonked both on leaving and for a few days after. I had thought the effort would probably only be a little more than I usually do taking the dogs out, but now suspect it was quite a bit more…. I’d like to have a measure of that.

    I also think it will be useful to see on a week to week basis how much I’m doing. Six months from now I could perhaps compare this month with one then and see if I’m moving forward any. And it would be a much more objective measure than gut feeling.

    As for the no of steps per day – I think I’m running on an average 1500 or so at the moment. The standard target is 10,000. From what you are saying in some of your posts, I suspect that I am slightly less affected by this than you, so perhaps your target would be lower.

    Hope that is all helpful. Best wishes, Sally.

    • Jennie Spotila says:

      I’m using a plain old Timex HRM with very few features. I’ve been tracking daily readings by hand (I KNOW!) and then comparing the data across days. Since it looks like I’ll be sticking with a monitor of some sort, I definitely need to invest in one that records the data automatically and makes it accessible for review. The only wrinkle in that is that I will still have to track my symptoms manually. What we really need is an app that lets you do both – automatically record heart rate and activity, manually capture your rating of symptoms. Someone needs to make that app!

  20. Anne Boyd says:

    Wow, Sally, thanks for the detailed info on the FitBit. I’ve been eyeing it for a long time, but I didn’t have a clear picture of whether it just gave you the data in a way that would be useful if you were trying to *limit* activity.

    I’ve also recently seen that Nike and Jawbone have just released new activity tracker (accelerometer) devices that are encased in a rubberized wristband thingy, so you can wear them 24/7. (Both companies had already released wristband devices that didn’t work well, so these are the “new and improved versions that seem to be getting better reviews.) Nike’s is called the “Fuelband” *ugh* and Jawbone sells the “Up”.

    Both are claimed by the manufacturers to be water resistant to the point where you can shower with the device, but not enough to swim with it on. It seems like it could be useful to have showering included in your daily activity record, since we all know what a chunk of the energy budget that takes!

    I’ve never been disciplined enough to keep a daily activity/symptoms log (I tried it for a while, but made a log system that was too complicated to maintain. Typical me.) I like the idea of having an accelerometer give you objective data, since it’s hard to consistently “feel” how active you’re being through the daily noise of multiple symptoms fluctuating. And I’m *terrible* at controlling my own fidgeting or remembering to do everything slowly when I’m at home. I suspect I would find that I expend a lot of energy on fidgeting and doing my minimal daily chores too briskly…even though in this tiny, tiny apartment my step count is probably pretty low..

  21. Zac says:

    @Jennie Spotila

    Great idea, Jennie. The HRM device could transmit its info via bluetooth to our pocket mobile devices. From there, the app would prompt us to input our symptoms.

    I’d also like the app to allow us to record any other symptoms we experience in a day along with food we eat, activities we engage in, etc. and anything else we think is relevant to our well-being. The app would periodically analyze our data and suggest what is causing our symptoms.

    And then all patients could upload their data to a central databank for analysis and comparison to all other patients. Then it could make recommendations for research to the professional community.

    Thanks for highlighting the importance of watching our heart rate. I might start watching it, too. Its usually quite high, for reasons unexplored to me.

    • Jennie Spotila says:

      I haven’t found an app that integrates all that data. If anyone does, let me know.

      High heart rate is very common in CFS, Zac. Probably related to autonomic dysfunction.

  22. Zac says:

    I see that HRMs and activity monitors are available for our iphones and android devices. Pretty sure the apps would allow logging in our symptoms, i hope …

  23. Kirsten says:

    Hello! Thank you for documenting your journey….You are amazing and will get through this! I suffer from tremendous joint pain daily, worse in the morning, not so bad in the evening. I am raising 5 children and the last two babies I have had either my husband or oldest child bring in the baby in the morning because I have not been able to lift them, although our symptoms are different, I understand the long term chronic pain/fatigue.

    I just wanted to let you know, a thought came through very strongly to me when I was reading about your stress/exercise test, have you tried a hyberbaric chamber? It forces oxygen levels and is phenomenal for healing. It really would be worth researching and trying with your health challenges.

    Good luck! Google it, hyperbaric oxygen treatment.

  24. Ruthann Auten says:

    Do you know how to go about making an appointment to do this testing at Ithaca? I have googled and googled and haven’t been able to come up with anything. I would really like to have it done and any info is greatly appreciated. Thanks!

  25. Nan Talbot says:

    I’m not able to read the entire blog today, but look forward to reading more. So much of this struck a chord with me. I tried to have the exercise testing many years ago, in the early 90’s (was disabled in ’78) but I literally DID fall off the freakin’ bike, although the tech caught me, luckily. I thought I had surely pedaled enough to produce some test results, but NO, not long enough. What made it worse was that I developed serious myoclonus afterwards. I felt and probably looked like Linda Blair in The Exorcist later that afternoon while trying to rest at the motel room. I was terrified because it looked like a grand mal seizure, except I was awake. Dealing with the myoclonus over the years is too long a story but I still have it at, but at a much more manageable level as long as I avoid certain drugs and extreme overdoing. I feel like the child, unable to touch the cookies constantly, whenever I try to pace myself. I end up becoming far too depressed over missing movies and other fun or depressed looking at the dust bunnies multiplying up to chin level so I inevitably overdo. Luckily, my crashes don’t last as long as they did years ago. No explanation for this, but I’ll take whatever improvement I can get. Won’t write a book but I look forward to reading more. Good luck, Jennie, and thanks again!

  26. Sara says:

    Dear Jennie,

    A big thank you for your posts. You describe so well what I feel inside. I wear a HR monitor but I feel more free without that. Like you, I’m on my AT (about 110) very easily. Cooking seated, having shower (140-160 bpm), climbing stairs (130). My HR is sounding so much! I already have sensation doing nothing but with that…doing less than nothing. I don’t wear it all time, to have sensation that I’m like a “normal person”. I don’t have your patience to obey at the sound of my HR.

    Thanks to put in words what you feel. We are less alone with our frustrations…

  27. Rivka says:

    this is a great series. very very helpful. however, for those of us already on a beta blocker, how do we test any of this? using a HR monitor won’t do us any good, right? — best, rivka

    • Jennie Spotila says:

      I’ll post about this in more detail soon, but I think there is a way to use the heart rate monitor while on beta blockers. You just need to set a lower level for your alarm. Details soon!

  28. Sally says:

    I’ve directed a few people to this compilation of posts after recent talks in N.Ireland from Dr Mark VanNess who also worked on the 2 day CPET tests.

    Anyway, I’ve my HR monitor back on now for a while, but I dislike it greatly when it tells me that getting dressed puts my HR too high.

    I still use the Fitbit – and have used it continuously since Nov 2012. I really like it as a daily monitoring tool. Sadly it tells me that my abilities are declining rather than improving. (Now average 600 steps daily or thereabouts.)

    So another spell with the HR monitor is in order to help me work out where I’m over-doing it….. Ho hum!

  29. Chris B. says:

    It’s really interesting to read your comments. I just finished 10 months of chemo for leukaemia. I felt exactly like a cfs person (based in the comments above). Resting hr around 90, and climbing 10 stairs would make me completely exhausted. It’s interesting to see how similar the two experiences are. I think the main issue is a significant decrease in cellular respiration. I think in my case, I think the chemo messed up my mitochondria. I did exercises to increase mitochondria biosynthesis, but I’m not sure if you can do that when you have cfs. maybe with cfs, there’s something that makes your mitochondria very inefficient?

  30. Chris B. says:

    Through trial, error and googling, I found the following.

    Lactate threshold workouts kill me afterwards. I ran “pretty hard” and I experienced the crash each time. It didn’t even occur to me that a run that easy could cause a crash. It was only until reading blogs like this that made me realize what’s going on.

    So, the best workout based on both my google research and experimenting on myself is resistance training + cardio with a goal of keeping your hr under your AT. For me, this is basically circuit training or a really easy crossfit workout. Here’s what I do:
    Skipping (45 times)
    Air squats (12 reps)
    Modified push-up (12 reps)
    Sit-up (12 reps)
    Jumping jacks (12 reps)
    I do the whole thing as fast as I can. Then I rest, and do it with 9 reps. Then Rest. Finally, Do it with 6 reps.

    My hr stays around 130bpm which is below my AT. So, I don’t crash even though the workout feels really hard. I’ve seen a very significant improvement in the rate that I’m recovering from chemo after switching to this workout. I keep the workout easy enough so that I can do it 5-6 days per week.

    When I started, it took me 29 minutes to do the entire workout. 4 weeks later, I’m at 11 minutes (and I took 1 week off while I got a “baby dose” of chemo). So, I’m kind of bordering on ecstatic about how well it’s going. I’ve also seen a huge, huge, huge increase in my body’s ability to process oxygen, which would happen if your mitochondria is getting better. We can rule out an increase in hemoglobin because I get weekly blood tests. My hemoglobin has increased from 128 to 131 in the last 4 weeks. So, not that much.

    I’ve also noticed a increase in my exercise tolerance and recovery rate. This is enough for me to convince myself that most chemo fatigue is due to damaged mitochondria. I think CFS and chemo people are both tired because of this. The trick seems to be figuring out what is damaging the mitochondira of CFS patients.

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  33. Blaine says:

    Hi Jennie,

    It’s been more than two years since you started pacing with your heart rate monitor and I was just wondering how it worked out for you? Do you still use it? Do you have any advice for others with CFS who want to try it?

    Any chance you’d write a follow-up post that summarizes your experience with heart rate monitoring?

  34. Kellie Nicholson says:


    Thanks for sharing your experience. I’ve struggled with CFS for 15 years after getting a flu shot. I’ve given up on doctors, medications and therapies, but blogs like yours give me hope. I’m sending you good wishes and hope for a cure for all of us.

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  36. Margaret K says:

    Thank you for your detailed description of your experience with pacing therapy. I feel like we’ve tried almost everything, including gentle exercise and trying to guess what was too much, but we never tried a heart monitor. Until we found the right supplements, the body just wasn’t up to exercising.

    I’d like to share my daughter’s experience. She was diagnosed with CFS at age 13, with a previous diagnosis of primary juvenile fibromyalgia. A 2-hour trip out of the house would cause her to take anywhere from 3 days to up to 2 weeks to recover. I had to remove her from school and put her in virtual school. One flare was so bad, she literally lost the ability to read. She had “brown-outs” where she would nearly lose consciousness and fall and couldn’t get up, and suffer a severe headache (oxygen deprivation) and confusion. We tried all the doctor’s medications, and they made her worse.

    Eventually, we had to move on to something else. Over the next several years, we discovered supplements, one by one, which slowly helped her recover her health. She calls it “taking the alphabet” or being a member of “The Handful Club”. Consumer genetic testing helped us discover she has MTHFR and needs methyl-folate, and that she has a mutation in vitamin A conversion, and needs more vitamin A. In addition to the 5-mthf methylfolate, she takes more B — a stress B complex, and a variety of forms of B12, including patches and B12 mixed with methyl folate. She also takes a powder mixed with warm water that delivers a 1.5 grams of C along with small doses of essential minerals. She takes handsfuls of D3, up to 50,000 iu for a few days if she’s feeling really bad. She doesn’t take vitamin E regularly, but she takes Fish Oil by the handsful, some of which has “E”, and craves it. That’s “A”, “B”, “C”, “D”, “E” and “F”.

    Next is “H”. It’s not a supplement, but it’s a critical ingredient. It’s heat. She can’t regulate temperature. She has to have a heated mattress pad, blankets, hoodies and go on long drives in the car with the seat heater running and her side of the temp controls set to “Roast Extra Well-Done”. For mandatory tests in cold air-conditioned buildings, she uses hoodies and hand-warmers. She also uses cold for special purposes, because it can help her snap out of fibro fog, or help her sleep more soundly.

    The biggest discovery, that really gave us a huge leap forward, was a powder which could be mixed with warm water to deliver 4 GRAMS of magnesium in a half cup drink. So, we jump to “M”. Mag stops the muscle pain and helps prevent flares. There are many more M’s — MSM powder mixed into our tea daily, Malic Acid to help detox and build muscle, and Melatonin to sleep. She has a sleep disorder which causes a severely delayed sleep latency and episodes of intensely vivid dreaming. If you don’t get sleep, you will never feel well.

    And, then we get to “W” — a wellness formula that she uses at the first sign to head off opportunistic infections.

    In the early days, we just tried a multi-vitamin and assumed that was enough. It wasn’t. Multi’s simply don’t provide the doses needed, and don’t include everything needed, or don’t have the right forms of minerals or vitamins. And, some of those vitamins need to be taken at different times of the day. B’s, and D’s in the morning. Mag at bedtime.

    After slowly tailoring this regimen over many years, taking these religiously EVERY SINGLE DAY for months and years (it takes time to start healing), her energy has improved so much that she was able to take a part time job, which involves shifts anywhere from 4-9 hours, running up and down stairs and carrying trays of drinks, and can even do those shifts on several consecutive days (cue the sound of angels and the sun breaking through the clouds) We know that it is these supplements which have led to this improvement, because if she skips even one of them, even for one day, she starts sliding back to how things were. You can almost see the energy draining out of her, and watch her turn a Whiter Shade of Pale before your eyes.

    There is something her body can’t do on it’s own, that normal bodies do, and it has to do with getting nutrients out of food and converting them through extensive chemical processes to what is needed. These nutrients somehow help to bridge that gap. She is not “cured”, but her condition is, to some extent, effectively “managed” now. A part-time life with some less serious flares is a lot better than no life with massive flares. For a sixteen year old kid, this has been a miracle.

    I wanted to share this because even though we’re all different, it might help someone else to “take the alphabet” or to do some consumer genetic testing to get some solid data on where some of the problems might lie. Read about “methylation”. It’s confusing and contradictory and you still won’t understand, but you’ll get some ideas. I can tell you — having even those little tiny bits of information, about the MTHFR and Vitamin A, even though they don’t explain the whole picture, really did help us to feel less lost about what was happening, and more certain that we were on the right track.

    And, I never stop reading. Which is how I ended up here, today. We’ve come a long way, but there is much more ground to cover.

    Best of luck to you all on your own journeys.

  37. Eveline Webb says:

    Found the blog very informative as well as the the comments!Along with increased HR I am interested to know whether others also experience Atrial Fibrillation please ?-Thank you in anticipation Eveline

  38. You actually make it appear really easy with your presentation but I find this topic to be really one
    thing that I think I would never understand. It kind of feels too
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    I’ll attempt to get the grasp of it!

  39. Est says:

    Wow thank you so much for this, your posts have convinced me I need to invest in a heart monitor. I don’t think I am able to do as much as you were when you wrote these (not in crash), so I am curious where I would fall. I looked at the MET site you linked- did you know they calculate on there it takes women more MET than men to do activities? It also goes up several points if you are even moderately overweight as well for both sexes. (Well, I lose!) At least if I’m reading this correctly:


  40. Hokibet says:

    Excellent website. Lots of helpful information here. I am sending it
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    course, thank you in your sweat!

  41. Nicholas says:

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  42. Mary-Day Lanier says:

    Thank you for the very interesting, fact-filled site! I wish I had come across it years ago!

    I have though, a practical question, which is so basic that it is embarrassing to ask, Re: heart rate monitoring:
    You say you have an alarm that beeps as long as you are over the limit; What device(s) are you using???

    I have been trying to track my HR for several years; first with a Fitbit Charge, now with Polar A 360. I have also been using the Polar H7 chest strap monitor for 5 months, with the Sweetbeat app.

    Having bad/moderate ME, I have NO interest in sports or training (!) although I do keep up as much aspossible with the stretches (which are second nature after 40 years of yoga and before that, classical ballet.).

    Each watch had its own advantages: the Polar because it is said to be much more accurate and the Fitbit because 1. I could see the time, my HR, and my steps ( the only things I am interested in) on one face – no need to keep pressing a button with the other hand, and 2. They give a graph for each day for HR, on a timeline, so you could check the rate for any minute and (try to ) remember the activity of that minute.

    But no wrist strap has the accuracy of a chest strap, I am told, and I’ve used the H7 for 5 months.
    2weeks ago for the first time I started looking at my polar watch during my morning 5 minute session, lying down, with the chest strap. They are much the same UNTIL I go over maybe in th 90s. At this point the H7 monitor keeps rising, the red visual alert comes on, and it is often in the 130-200s. BUT the watch is still in the 80s or 90s! I have to trust the chest strap, with the HR as shown on Sweetbeat. It does go down quite quickly.

    However I need to be careful: Because of my age, my AT is very low. I would never move at all, even in bed, if I kept below it – so as a compromise, I would like to rest after ?10-20 minutes of being over it. BUT , to check my HR, the watch only lights up for 2 seconds, and I can’t see the Time as the same time as the HR; so how to know when to stop?

    If I had a device which would keep beeping until I lowered my HR, it would make all the difference!

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