Monday, February 28, 2011

Movie Monday 2/28

Ah, the last day of February.  I can't believe we made it.  Rainy and 60's here today...spring can't be far behind!

I haven't done a Movie Monday in a couple of weeks because I haven't had time for either movies or blog posts!  Getting back into the routine this week.  We had a nice, quiet weekend at home and enjoyed several good movies:
  • Friday night we watched The Dark Knight with the kids.  You might recall we watched the first movie, Batman Begins, a few weeks ago.  The sequel was very good - Craig actually preferred it to the first because there was more action (and less brooding).  Of course, we'd all heard how awesome Heath Ledger was as The Joker, and he didn't disappoint (though I am still partial to Jack Nicholson in that role).  I never thought I'd enjoy so many superhero movies, but there have been some very good ones lately, including this series and Ironman.
  • Craig slept over at a friend's house Saturday night, so Jamie, Ken, and I watched The Social Network.  I was so excited to see it available at Redbox!  Jamie was reluctant to watch it at first - not his usual type of thriller or scifi - but we all agreed it was excellent.  Very well-done and a fascinating story, though very sad, as Jamie said.  It's ironic that the guy who turned "friend" into a verb ended up without any real friends.
  • Both boys were badly crashed last night - Craig from his sleepover and Jamie from a hike we took - so we relaxed with Despicable Me.  I wasn't all that interested in seeing it at first, but I kept hearing how good it was (including from some of you!), so I gave it a shot.  It was actually very good - funny and unique but also warm, which I didn't expect.  The three little girls stole the show, in my opinion, but I would love to have a team of minions for myself!!  They could do all the work around the house while I cool would that be!
Have you seen any good movies lately?

Us three are still all in rough shape - me just so-so but Jamie and Craig both badly crashed.  I hope they both perk up for school tomorrow.

If you're interested in what we've been reading this week, check out the Monday post on my book blog.

Saturday, February 26, 2011

Quote It Saturday 2/26

Happy Weekend!  It is such a big thrill to have a weekend at home, with no travel and nothing going on.  Ken and I are trying to get caught up on all the things that haven't gotten done lately!

I've been trying to revive my Quote It Saturday routine, featuring quotes from books that somehow spoke to me about my own life, even if they have nothing to do with chronic illness.

Today's quote is from Still Alice, a novel by Lisa Genova about a very accomplished professional woman who works as a professor at Harvard and is suddenly struck by early-onset Alzheimer's.  You can read my review of the novel at my book blog

I really enjoyed this novel, though it is heart-breaking at times.  It is ultimately about finding joy even in the most limited life and about the strength of the human spirit.  Interestingly, although Alzheimer's is quite different than CFS in many ways (including the fact that it is always fatal), I related to many, many of Alice's thoughts as she adjusted to her new life of chronic illness.  This passage is one of my favorites and is dedicated to YOU, all of my wonderful online friends.  These were Alice's thoughts after starting an online group for early-onset Alzheimer's patients:

There they were, her new colleagues.  She read their names over and over.  Mary, Cathy, and Dan.  Mary, Cathy, and Dan.  She began to feel the kind of wondrous excitement mixed with barely suppressed dread she'd experienced in the weeks before kindergarten, college, and graduate school.  What did they look like?  Were they still working?  How long had they been living with their diagnoses?  Were their symptoms the same, milder, or worse?  Were they anything like her?"
                   - Still Alice by Lisa Genova

This quote reminds me of the way I felt when I first began discovering other people with CFS online, my new colleagues!  And you've all enriched my life in so many ways.

This is just one of many quotes I liked from Still Alice, so I may quote from the novel again in a future Quote It Saturday.

Hope all of my colleagues are enjoying a restful and joy-filled weekend!

Friday, February 25, 2011

CBS Covers Latest ME/CFS Research on The Early Show

Wow, CBS is just rockin' the ME/CFS media world this week!

First the CBS Evening News with Katie Couric did a spot on the new research showing unique proteins in the spinal fluid of both CFS and chronic Lyme patients.  Some have complained that the piece was too brief, but I was thrilled.  This was network evening news!  One minute, 40 seconds out of their precious one hour show was a huge victory for ME/CFS patients, especially considering the fact that they chose to report on the spinal fluid study and completely ignored last week's misleading CBT/GET study out of the UK.

Now CBS did a spot on this new research on The Early Show...and this time we got 2 minutes, 24 seconds!  You can watch the video here.   This report emphasizes the serious debilitating effects of CFS and how the new research may help provide diagnostic tests and perhaps treatments in the future.  Interestingly, the health reporter doesn't mention Lyme disease at all in this report.

Also the CBS news coverage of this research has helped to fuel coverage on many other major news outlets, including MSNBC (c'mon Today Show, get with it!), Washington Post, Wall Street Journal, Yahoo! News, and Fox News.  It seems to be completely eclipsing any more reporting on the UK PACE trials.

This just in!  Here's a video link to the piece that Fox News did on this study.  This was sort of a strange piece.  Their medical expert did explain that the study differentiated between CFS and chronic Lyme, and he explained why that was important.  He emphasized that CFS was a serious, biological disorder and that he himself has diagnosed patients with it.  But he also said a bunch of stuff about how important it was to be able to tell the difference between depression and CFS, he implied that some people report symptoms they don't actually have, he briefly mentioned exercise as a potential therapy for CFS, and he kept emphasizing that muscle pain and weakness are the critical symptoms in diagnosing CFS.  Huh?  I have very little pain - just all-over flu-like achiness during a crash, but even that isn't really muscles.  He said nothing about post-exertional malaise or signs of immune system dysfunction, like sore throat and swollen glands - two things that I believe are unique to CFS and helpful in telling it apart from other medical problems.  So, it was sort of an odd piece...but they did cover the facts of the new study and emphasized the seriousness of ME/CFS.  The more coverage of this and all other scientific studies, the better!

Thursday, February 24, 2011

New Study Identifies Unique Biomarkers in CFS and Lyme

Sick of all the undeserved hoopla from last week's publication of the PACE trials?  A new study was released last night based on hard science with some fascinating results...and wide coverage in the major news outlets.

Researchers tested CFS patients,  chronic Lyme patients, and healthy controls.  They looked at spinal fluid from all three populations and found over 700 unique proteins in the spinal fluid of CFS patients that were not evident in either of the other two groups.  They also found close to 700 different proteins in the spinal fluid of the Lyme patients, again unique only to that group.

This study suggests several significant conclusions:
  • Chronic Lyme is a unique condition, different than CFS (the symptoms are similar, so the two have been mistaken for each other in the past).
  • CFS does have unique biomarkers that could help to diagnosis it more easily and accurately in the future.
  • The identification of these proteins could eventually lead to blood-test biomarkers that could serve as diagnostic tools (it isn't practical or safe to use spinal fluid testing - you can't just go around spinal tapping everyone with chronic fatigue).
The best part?  This study was covered last night on the CBS Evening News with Katie Couric!  Yes, that's right - real science and CFS, covered on a high-profile national news show.  You can watch the video of the segment here - it was brief but accurate.


Wednesday, February 23, 2011

Lost and Found

I'd forget my head if it wasn't attached.  That's what my parents used to tell me when I lost mittens on a daily basis when I was a kid.  Turns out I haven't come very far since then.

First, I lost the strap to my heart rate monitor on our trip to Rochester last weekend.  I figured it must have fallen out of the car at one of our stops.  I've been wearing it a lot, so I was lost without it all week, and Ken ordered me a new one ($30).  Then, this past weekend, we were visiting my mom and her husband, Ed.  I got into Ed's car at one point and saw my heart rate monitor strap just sitting on the passenger seat!  I pretty much freaked out and yelled, "Oh, my gosh!!  Where did you find this??"  Ed looked at me kind of weird and said, "Why, what IS it?"  Turns out he found it lying in their driveway...where it must have fallen out of our car last weekend when we stopped at their house for dinner on our way to Rochester.  Now that I have two, it's pretty much guaranteed that I'll never lose it again!

Then, we got home from my mom's on Sunday, and I realized I forgot the power cord for my laptop at their house.  I actually looked at it Sunday morning when I unplugged my laptop and thought, "Wow, I better not forget this - that would be awful!"  And I did.  DUH!  It just arrived in the mail today, so I'm back online and - once again - trying to catch up after a forced period of no internet.

Do you think I will ever learn?  Probably not.

We did have a nice weekend, though Jamie was severely crashed through all of it.  He had two days' off school, thank goodness, and tried going back for a few hours today, but he's still really wiped out.  I think this is at least partly a herx reaction.  We stopped his bartonella medication, Zithromax, a couple of weeks ago in order to switch to a new med, and his symptoms began coming back - the only ones we'd seen any improvement on!  So, I consulted with the Lyme doctor, and we decided to put him back on Zithromax for that means, going through the herx reaction all over again.  The same thing happens to me when I stop taking doxycycline and restart it.  This has been a long, hard week for him, and it seems it's not over yet.

Craig seems to have a little cold.  He managed a huge amount of exertion this weekend - snowboarding and snow tubing - with only a brief crash Sunday evening, so that's good.  I better make dinner now.

Saturday, February 19, 2011

Quote It Saturday 2/19

Brrrr...what happened to the balmy 70 degree temperatures yesterday?  We're visiting my mom and her husband in their new home in the Poconos - it's actually located in a ski resort.  Craig is out snowboarding, Gramie and Pop Pop are watching, and my husband Ken is skiing for the first time in 22 years (!!).  I watched for awhile, but it is unbelievably bitter cold out there!  High winds fling bits of ice across your face and cut right through coats and hats and gloves.  I came back to the condo to keep Jamie company.  The poor kid would love to be out in the cold snowboarding with his brother, but he is still badly crashed (since Tuesday evening), so he and I are snuggled under blankets with good books and the gas-flame fireplace.  Ahhh!  Much better.

So, I just thought I'd share a couple of quotes, since it's been so long since I've had any spare time on a Saturday!  I recently wrote a review of a wonderful little memoir, The Sound of a Wild Snail Eating, written by fellow ME/CFS sufferer Elisabeth Tova Bailey, and I wanted to share a couple of passages that highlight her beautiful prose and insightful observations:

When the body is rendered useless, the mind still runs like a bloodhound along well-worn trails of neurons, tracking the echoing questions: the confused family of whys, whats, and whens and their impossibly distant kin how.  The search is exhaustive; the answers, elusive.  Sometimes my mind went blank and listless; at other times it was flooded with storms of thought, unspeakable sadness, and intolerable loss.

Give the ease with which health infuses life with meaning and purpose, it is shocking how swiftly illness steals away those certainties.  It was all I could do to get through each moment, and each moment felt like an endless hour, yet days still slipped silently past.  Time unused and only endured still vanishes, as if time itself is starving, and each day is swallowed whole, leaving no crumbs, no memory, no trace at all.

Isn't this passage amazing, both in its depth of insight and in the loveliness of its prose, its metaphors perfectly capturing meaning ("the mind still runs like a bloodhound")?  I love the part about how time seems to stand still while also flying by when you are too ill to do anything.  She writes of both her illness and her observations of a small snail left at her bedside by a friend.  Here is another passage that spoke to me:

There is a certain depth of illness that is piercing in its isolation; the only rule of existence is uncertainty, and the only movement is that passage of time.  One cannot bear to live through another loss of function, and sometimes friends and family cannot bear to watch.  An unspoken, unbridgeable divide may widen.  Even if you are still who you were, you cannot actually fully be who you are.  Sometimes, the people you know well withdraw, and then even the person you know as yourself begins to change.

There were times when I wished that my viral invader had claimed me completely.  How much better to live an exuberant life and then leave as one exits a party, simply opening a door and stepping out.  Instead, the virus took me to the edge of life and then left me trapped in its pernicious shadow, with symptoms that, barely tolerable one day, became too severe the next, and with the unjustness of unexpected relapses that, overnight, erased years of gradual improvement.
          - Excerpted from The Sound of a Wild Snail Eating by Elisabeth Tova Bailey

I found this slim little volume both entertaining and meaningful and highly recommend it.

Hope you're enjoying the weekend and staying warm!  Time for a game of backgammon with Jamie.

Friday, February 18, 2011

Bristish Study Floods Media with Harmful Advice for ME/CFS

I subscribe to Yahoo! Alerts and my Inbox this morning was flooded with new articles on treating ME/CFS.  Every single one of them refers to the recent British PACE trials which focus on treating ME/CFS with ONLY Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET).  Not a single word about underlying infections, immune system dysfunction, orthostatic intolerance, or post-exertional malaise.

Sorry I don't have time today for a more in-depth discussion of this sad news, but Jamie is still home sick, I'm still worn out and overwhelmed, and I need to spend yet another Friday packing up for a weekend trip (this time to my mom's house).  I hope to get back to a more "normal" routine next week.  Meanwhile, here's a quick paste of some of the article summaries - prepare yourself - it's depressing!  Some of these headlines alone will be quite damaging:

Pushing limits can help chronic fatigue patients Thu, 17 Feb 2011 17:26 PM PST
LONDON - Helping chronic fatigue syndrome patients to push their limits and try to overcome the condition produces a better rate of recovery than getting them to accept the illness and adapt to a limited life, new research has found.

Study questions chronic fatigue treatment methods
The Washington Times Thu, 17 Feb 2011 17:21 PM PST
LONDON (AP) - The biggest ever study of chronic fatigue syndrome treatments has challenged the strategy championed by patient groups _ taking it easy is not the best treatment, exercise and behavior therapy are. For years, patient groups warned such treatments could be dangerous, instead promoting a strategy known as adaptive ...

Got ME? Just get out and exercise, say scientists
Independent Thu, 17 Feb 2011 17:12 PM PST
The UK's largest study of treatments for chronic fatigue syndrome has provided the first definitive evidence of what helps those who suffer from the disabling condition that affects 250,000 people in the UK.

Exercise best cure for fatigue
Stuff Thu, 17 Feb 2011 17:09 PM PST
The biggest ever study of chronic fatigue syndrome treatments has challenged the strategy championed by patient groups - taking it easy is not the best treatment, exercise and behavior therapy are.

Behaviour and exercise therapy best for treating chronic fatigue syndrome: study
Brandon Sun Thu, 17 Feb 2011 17:05 PM PST
LONDON - The biggest ever study of chronic fatigue syndrome treatments has challenged the strategy championed by patient groups — taking it easy is not the best treatment, exercise and behaviour therapy are.

CBT and GET can safely be added to SMC to moderately improve outcomes for chronic fatigue syndrome, but APT is not an ...
Lancet Thu, 17 Feb 2011 16:16 PM PST
Trial findings show cognitive behaviour therapy (CBT) and graded exercise therapy (GET) can be effective treatments for chronic fatigue syndrome, but patients' organisations have reported that these treatments can be harmful and favour pacing and specialist health care.

Therapy, Exercise Help Chronic Fatigue Syndrome
WebMD Thu, 17 Feb 2011 16:11 PM PST
Cognitive behavioral therapy and exercise, in conjunction with medical care, are safe and effective ways to treat some of the symptoms of chronic fatigue syndrome (CFS), finds a new study published online in the Lancet.

Study supports use of 2 controversial treatments for chronic fatigue
CNN Thu, 17 Feb 2011 16:09 PM PST
British researchers reported Friday that two controversial treatments for chronic fatigue syndrome appear to be more effective than a third, more commonly accepted treatment, and none of them appears to be linked to major safety problems.

Thursday, February 17, 2011

Toni Bernhard on NPR

I just realized today that, during that week my computer was broken a couple of weeks ago, I missed the airing of fellow CFS patient Toni Bernhard's commentary on NPR's Morning Edition.

Toni is the author of the fabulous book, "How To Be Sick," which I highly recommend for anyone dealing with chronic illness (it is actually appropriate for anyone dealing with any sort of challenges in life).  You can read my review at my book blog.

Toni did a wonderful job with the NPR commentary - you can listen to it online if you missed it, like I did.  For more information, visit Toni's How To Be Sick website.

Tuesday, February 15, 2011

Too Pooped to Post

Just wanted to write a quick note to explain my absence lately.  We spent the weekend driving back and forth to my hometown of Rochester, NY, for a family funeral.  Traffic and a closed road Friday afternoon led to a 10-hour drive to get there, arriving at my dad's house at 11 pm, then a very long day Saturday with the funeral home, church service, cemetery service, and family meal, followed by an 8-hour trip home on Sunday.

As you can imagine, I was pretty wiped out Monday morning...but I still had to go out to get some groceries and a new phone (ours broke Friday).  Today was a two-hour initial meeting with a disability lawyer, which was the last straw.  I'm pooped - achy and sore throaty and out of energy.

I really intended to write about my newest treatment (using beta-blockers to help control OI), but I just can't put cohesive thoughts together to explain anything medical right now.  Maybe tomorrow.  Looks like take-out for dinner tonight.

Tuesday, February 08, 2011

Movie Tuesday 2/8

Oh, shoot...I missed Movie Monday again!  Busy, busy, busy lately.  Ken and I had a meeting with our financial advisor yesterday (college is coming up fast!), right about the time of day I usually reserve for blogging.

Crazy busy weekend, too.  Jamie had a bit of a medical scare last week (he's fine now) that threatened to derail his planned class trip.  Thankfully, he got the OK to travel Thursday and spent Friday and Saturday touring Washington, DC, with his American History class. He had a great time and didn't even crash afterward!  Meanwhile, Craig had an all-day Academic Bowl Saturday - the three of us were at the high school from 9 am until 5 pm!  Craig and his team did a great job, but that was a very long day for me.  I actually skipped my nap - which I never do - so by 3 pm, I was wiped out.  I ended up lying on the floor in the hallway for a while!  Whatever it takes, right?  Interestingly, during that marathon day, I discovered that the mother of one of Craig's best friends has fibromyalgia.  Small world, right?

Then, of course, Sunday night was the Superbowl - we had a little family party here, just us, plus the last-minute addition of two of the boys' friends.  So, amid all that activity, we did find a few quiet hours to relax with some good movies:
  • Last week, in need of a quiet evening, we watched Eagle Eye with the kids.  Shia LeBeouf stars in this exciting, fast-paced thriller.  He and a woman who is a stranger to him get pulled into a strange, dangerous series of events.  Through some odd forms of coercion, they are both manipulated into some illegal actions.  They receive their instructions in strange ways and have no idea who is controlling things or what the purpose is.  It's a unique thriller with lots of unexpected twists and turns.  We all enjoyed it.
  • With Jamie away, Craig chose Shrek Forever After, supposedly the final Shrek movie!  It was just as fun and clever as all the earlier Shrek movies.  The clever puns and references and twisted fairy tales are the best part of this series.  For instance, I loved when a baker frosted Gingerbread Man's legs, and he shouted gleefully, "I've always wanted to wear chaps!"
  • After Craig's all-day quiz show and Jamie's 2-day trip, we were all exhausted Saturday night, so we hunkered down into the family room and watched Batman Begins.  Although there've been a glut of superhero movies lately, this was very good - an excellent interpretation of the Batman story, with some REALLY cool high-tech gadgets (the Batmobile was especially awesome).
Ken and I were too tired to stay up late for movies this weekend, but we did watch some episodes of Mad Men on DVD, and last night shared the Superbowl episode of Glee with the kids - the first time they've seen this incredible show!

Have you seen any good movies lately?

Thursday, February 03, 2011

Heart Rate and Post-Exertional Crashes in ME/CFS

My treasured heart rate monitor tells me when I've gone past my limits

(Updated in 2023)

I want to explain what I've learned in the last couple of months about how monitoring heart rate can help someone with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) to avoid post-exertional malaise (PEM), more commonly known as crashes.  At the end of last year, I posted a link to an excellent article called "Pacing by Numbers: Using Your Heart Rate to Stay Inside the Energy Envelope," which explains how monitoring your pulse rate can help you to stay within your limits and avoid the crashes we are all so familiar with.  It's an excellent article - I highly recommend you read it - but I wanted to also tell you some of what I've learned from my own experiences recently. You can also read my own recently (August 2019) published article, Using a Heart Rate Monitor to Prevent Post-Exertional malaise in ME/CFS, on the ProHealth website.

I have no medical background (even though my family calls me Dr. Sue, Medicine Woman now!), so I will try to keep this simple, as I understand it, without too much medical jargon.

Why Do We Crash After Exertion?
We all know that one of the biggest and worst parts of ME/CFS is the exercise intolerance, also known as post-exertional malaise.  When we do too much, we feel terrible the next day (and often the day after that, and so on).  And "doing too much" for someone with ME/CFS could mean taking a shower or fixing lunch or taking a 10-minute walk.  If you want to know more about post-exertional malaise, I recommend Jennie Spotila's excellent series of articles on PEM.

One of the major reasons WHY (there are several) we feel so bad after exertion is because our cells don't handle oxygen the way they're supposed to, a condition known as oxidative stress.  When normal, healthy people exercise, their heart rates gradually increase (which is good for them!), in a process called aerobic exercise.  During this process, the cells are using oxygen in the energy-creating metabolic process within the mitochondria (kind of like tiny energy engines in our cells).  If a healthy person exercises for a long time and/or at high intensity, their cells switch to anaerobic metabolism.

People with ME/CFS have an extremely low anaerobic threshold because our cells don't handle oxygen appropriately, so that our bodies switch to anaerobic metabolism with very little exertion.  So, the effect of a short walk in someone with ME/CFS can be similar to the effects of a healthy person running a marathon.

You can estimate your anaerobic threshold (AT) using this formula:

(220 - your age) * 0.6 = anaerobic threshold or AT, in beats per minute
(that is, 60% of your maximum heart rate)
See my recent article for more detailed formulas, with more options for women and for those more severely ill.

I'm 45, so my anaerobic threshold is 105 beats per minute (note, that was in 2011 when I first wrote this post. As I am updating it here in 2019 at age 54, my AT is now estimated at 100 bpm, though in reality, it is higher than that - see below).

Note that this formula only provides an estimate of AT. The most accurate way to find out what yours is is to take part in a 2-day exercise test specifically designed for ME/CFS (a 2-day CPET test), but most of us don't have that opportunity. You can use the formula as an estimate and then test it out for yourself.

How Does OI Affect Post-Exertional Crashes?
Another significant factor in post-exertional crashes is Orthostatic Intolerance (OI), a condition that affects more than 97% of patients with ME/CFS (and many of those with fibromyalgia and Lyme, too).  OI is basically an inability to maintain a steady heart rate (HR) and/or blood pressure (BP) while upright, and it is behind many of the symptoms we experience as ME/CFS, even if you don't realize it (check out this past post on OI for more information).

Typically in ME/CFS (though not always), OI causes our heart rate to increase and our blood pressure to decrease, often substantially, when we are upright, either sitting or standing (though there are some rare cases in ME/CFS where the BP increases when upright or in some cases BP and HR jump around - those are still OI).  So, while a healthy 45-year old would probably not hit 105 beats per minute until she'd been exercising for a while, I can hit 105 just standing up.  The result is that even minor exertion can put someone with ME/CFS over their anaerobic threshold.

Tracking Heart Rate
So, monitoring or keeping track of your heart rate can give you a solid, quantifiable way to know when you've passed your limits and are in danger of experiencing post-exertional malaise (i.e. a crash).  You can check your pulse rate simply by touching your wrist or neck and counting the beats, but I highly recommend using a heart rate monitor.

I asked for and got a heart rate monitor for Christmas (thanks, honey!), and wearing it during my normal daily life has been enlightening.  I planned to wear it when I took a walk or went shopping or something else exerting, so I could tell when I had done too much.  On my first day, I decided to take a walk in our neighborhood, so I strapped it on, after calculating my anaerobic threshold (105).  I was shocked to see that my heart rate just standing in the kitchen was already over 100!  I bent down to tie my shoes, and my heart rate jumped up to 115!!  And I hadn't even left the house yet.

I did take a 15-minute walk that day, as slowly and carefully as I could, but my average heart rate was 103 and the maximum (after I had my shoes on) was 110.

Over the course of the next week, I wore the heart rate monitor almost all the time during the day and watched it constantly (some might say obsessively).  I found that it provided hard data to back up what I already knew about OI (I love data!). 

Even lying down (what's known as resting heart rate), my heart rate rarely went below 90.  Sitting on the couch with my feet up, it was often in the 90's or near 100.  Standing up to make a cup of tea could drive it over 100.  Taking a shower or putting in a load of laundry could spike it up to 130 or higher!  One day in the library, I noticed it was close to 100 just walking around slowly, but when I crouched down to see something on a low shelf, it dropped to 75-80.  I knew from Dr. Rowe's article on OI that crouching helped, but it was illuminating to see that for myself.  I also noticed that it varied from day to day, depending on how I felt. Research bears this out - your AT is even lower and your HR even higher when you feel worse.

On a grocery shopping trip, I discovered - much to my surprise - that the part of shopping that drove my heart rate highest was carrying the groceries into the house.  This was much more exerting to me than pushing the cart or walking around the store.

It was fascinating for me to see that my quietest day could easily put me over my anaerobic threshold fairly often.  No wonder I rarely felt good - I was in a constant cycle of post-exertional crashes without even "doing" anything!  I really had no idea that was happening.

Try it for yourself - monitor your heart rate for a few days.  Find out where your own anaerobic threshold is and how much exertion it takes to put you over it.  Experiment!  Try various normal daily activities and see which ones are within your limits and which push you beyond them.  Figure out how some simple changes can keep you from going past your threshold - maybe dividing tasks up into parts or resting in the middle or delegating certain things.

Choosing a Heart Rate Monitor (updated)
Although there are now many different kinds of wearable devices that can measure your heart rate, there are a couple of things to look for that you'll need specifically for ME/CFS: 

  • You want a heart rate monitor that continuously monitors your heart rate, giving a constant read-out. The kinds of devices that require you to push a button to check your heart rate aren't adequate for us. 
  • A large read-out that you can easily see is best. 
  • You also want to make sure that you can set audible alarms for heart rate that are custom to you. Some devices may just calculate your limits based on your age, but with ME/CFS, we are using it differently than that. You will set your upper limit to whatever your anaerobic threshold (AT) is, according to the formula above, and you want an audible alarm to inform you immediately if you hit that limit. 
  • All models now can link to a smart phone or computer, so you can see your data.

I have been very happy with my Mio Alpha heart rate monitor; however, they are no longer available (sometimes you can find one at that link by clicking on "available from other sellers"). There are, of course, now plenty of fitness trackers available, like Fitbit, that measure heart rate, though I find their HR read-outs quite small and hard to see while you are moving around, and they are designed for athletes and active people, with different settings for different sports and activities. They do, however, have additional features like sleep tracking.

Another option are the type with a chest strap, mostly made by Polar. Some people swear by these. I wore one for several years (and went through several chest straps) and found it was uncomfortable, inconvenient, and not all that accurate. Mine would cut out at random times and the newer ones required contact gel to perform even adequately. Some of my issues may have been simply because I'm a woman--I'm sure it's much easier to put a chest strap on in public when you're a man!

When I polled people with ME/CFS in several online support groups about what kind of heart rate monitor they used, many said that they loved their smart watches and they could do all that we need them to. Of course, Apple Watch started the smart watch thing, but now there are plenty of other options, too, like the Samsung Galaxy. I started using an Apple Watch in summer of 2023, and I have found it has some specific pros and cons for our use. The biggest downside is that you cannot set an upper limit alarm, so I added an app called Beat Watcher ($10), which does allow me to set an upper limit alarm but doesn't work with Apple's other built-in fitness apps (which tell me how long I was active, my highest HR during that period, heart rate variability, etc.). In this short video, I discuss the pros and cons of Apple Watch versus my old-school heart rate monitor.

I recently bought a fitness tracker to use as a heart rate monitor for my son (and his medical team wanted him to track his sleep, too). I looked at all of these options. At the time, smart watch prices looked very high, though they seem to be coming down. I also saw a bunch of very cheap trackers being sold as "smart watches," but I was unsure if they had all the features I list above. I finally settled on a Garmin Vivosmart 4. I read through its features carefully and also called Garmin tech support to make sure that you could set it to show HR continuously and could set your own upper limit for HR (yes to both). And it's only $99. That was three years ago, and I don't think he ever even took it out of the box, so I can't report on how it works, but I have heard others with ME/CFS like this brand/model.

Treating OI to Improve Stamina
For me, the monitoring only did so much - I was still over my limit during most daily tasks and could not manage even a short walk without crashing afterward. Then, I tried a new treatment that turned out to be life-changing for me! I now take beta blockers for my OI. Beta blockers block certain hormones in the body to bring heart rate down to more normal levels. As with everything else in ME/CFS, a lower dose is best for us, and it only takes a little bit to be effective (and too much beta blocker actually increases fatigue). Once I found the right beta blocker (there are several dozen to try) and the right dose for me (see tips in that link), my life was transformed. I could go grocery shopping, take walks, and get through normal daily activities, all without going over my limits and crashing. I still use my heart rate monitor, but now I only need it when I am doing something especially exerting, like walking or hiking. I am able to stay below my AT in my normal daily life and even cook again!

I have also found, as noted above, that my AT has actually increased, even though I am getting older, because I am now able to be more active and improve my fitness (all while staying below my limits). This has been born out in research, as explained in my recent ProHealth article: staying below your limits and preventing PEM (crashes) allows you to begin to improve your fitness level, which will gradually increase your AT...allowing you to do even more! It's a positive domino effect that I have seen work in real life.

Once you've determined where your limits are, you can try to stay within them as much as possible.  This should result in feeling better, and then you can try to very slowly and gradually do a bit more. This is NOT the dreaded Graded Exercise Therapy (GET), which can worsen your condition, but using science and quantifiable measurements to stay below your limits and prevent crashing. Treating Orthostatic Intolerance can help you to become even more active and further reduce post-exertional crashes. Good luck!  Let me know about your own experiences in monitoring heart rate. And if you want to dig more in-depth into this topic or chat with others with ME/CFS using heart rate monitors, join the Facebook Group ME/CFS - Pacing with a Heart Monitor.

UPDATE AS OF 8/21/19: Seven years after starting beta blockers - and with the help of my heart rate monitor - I have been able to greatly increase my physical stamina. I can now manage up to two hours of walking/hiking at a time (wearing my heart rate monitor and staying below my AT, of course!), without crashing afterward. I love the outdoors, and I have been gradually increasing the lengths of hikes I can manage - I did 1.5 miles on hilly terrain last summer! I have also started slowly doing some weight training - mostly on my back to keep my heart rate low and in the morning when my beta blockers are working best. I can now work out with weights for about 20-30 minutes most mornings and have increased my muscle tone substantially (which further improves OI). I rarely crash from over-exertion anymore, which has been life-changing for me. None of this would have been possible without first treating OI and using my heart rate monitor to stay within my limits.

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