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 rested...how 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.

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!

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!

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.

Rejoice!

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 now...so 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.

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.

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
ABS-CBNNEWS.com 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.

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.

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.

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?

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.

Note: This post contains affiliate links. Purchases from these links provide a small commission to me, to help offset the time I spend writing for this blog, at no extra cost to you.

Movie Monday 1/31

Well, I think my nightmare computer week is over, thank goodness.  That fourth trip to The Apple Store seems to have done the trick.  I didn't have time to catch up today, though, because Jamie and I had to make our trip to NJ to see our Lyme doctor.  Thank goodness he drives the whole way now - I was really worn out today.  The kids had an easy time convincing me to dump my dinner plans and get take-out burgers and fries tonight!

After days filled with stressful computer problems and snow days, we spent our evenings escaping reality with some movies this weekend:

• We watched Red this weekend with the kids.  Craig saw it in the theater with a friend a few months ago and was really excited to share it with the rest of us!  It's a funny and fast-paced thriller about a group of retired CIA agents, played an all-star cast of Bruce Willis, Morgan Freeman, John Malkovich, and Helen Mirren (a very different role for her!).  They discover someone is trying to kill them and leave retirement behind to investigate.  Lots of fun.
• Craig went bowling with friends Saturday night, so Ken, Jamie and I watched Cloverfield, a unique and scary thriller.  It starts with a group of friends in NYC at a going-away party for one guy, when some freaky things start happening.  Soon, they are on the run from some horrifying creatures while the city is falling apart around them.  The hitch is that the whole movie is filmed from the perspective of a handheld video camera by one of the party-goers.  It made for a very frantic, you-are-there feel (though Ken said it made him sick!)
• Last night, Ken and I watched Crazy Heart, with Jeff Bridges and Maggie Gyllenhaal (one of my favorite actresses).  Bridges plays Bad Blake, a once-famous country singer who is now playing bowling alleys in small towns while his former back-up singer has made it big.  He's in bad shape - constantly drunk, chain-smoking, and sleeping with random fans in every town - when he meets Jean, played by Gyllenhaal, who interviews him and shows him there may be something better out there.  It was very good - I can see why it made lots of top 10 lists for 2009.
• In between, Ken and I finally finished the last season of Saving Grace on DVD.  What a spectacular show!  The finale was a real tear-jerker, though.  We also watched a few more episodes from season 2 of Mad Men - do any of those characters have an ounce of self-control??

Have you seen any good movies lately?

(If you are also interested in what books we've been reading this week, check out my Monday post on my book blog.)

100 Followers!

My computer problems continue.  After a third trip the The Apple Store on Friday, I thought everything was OK.  My laptop seemed fine for about 24 hours, then suddenly, the original problem that began this whole torturous ordeal returned!  So, it's back to the Genius Bar today, and my stress levels are soaring once again.  I'm at the point of just wanting to live without computers forever!

Then, in the midst of this horrible week, I noticed a pleasant surprise.  While I was busy trying to fix my laptop problems at the end of this week, my CFS blog hit 100 followers!  What a nice treat in the midst of all this stress.

Thank you, to all of you, for reading and following my blog!  I never dreamed when I wrote my first post almost 5 years ago that I would someday have so many people reading my blog.  I was stunned when I got my first comment! 

Because of you, I really don't even think of this as a stand-alone blog anymore but as part of an online community.  Writing here, reading other CFS blogs, and interacting with all of you has enriched my life in ways I never dreamed when I started this.  I can't imagine how people managed to live with chronic illness before the internet.  I have made so many friends here.  Thank you for reading, commenting, writing, and for all of the support, encouragement, and friendship you've given me these past five years.  I feel truly blessed.

sigh...OK, I guess I wouldn't want to live without a computer after all.  I better get back to my problems.  Thank you!!

Fed Up!

Warning:  I'm in a cranky mood, so if you don't want to listen to griping, you should move on...

Uggh!  My computer problems are making me crazy.  I can't imagine how anyone could stand a career on IT.  I'm still typing this on my old desktop.  My laptop is making progress, but there are still a couple of incredibly frustrating problems.  I may have to erase it and try again, but I really don't want to!!

So, I've been spending a lot of time sitting up in the office at the desk (I usually use my laptop on the couch), and I'm tired and overwhelmed.  I told Ken I'm ready to pull my hair out and jump off a bridge.  He laughed and said, "Really?  Both at once?"  I'm trying to keep my sense of humor, but it's hard.

And, of course, as always, my physical limitations are making everything much harder.  I'm sick of feeling worn out, sick of taking so many pills, sick of always feeling behind and never catching up.  All the stuff I had planned to do this week is just piling up; the longer my computer is down, the worse it gets.  I'm getting to the point where I don't even care about all the work piling up.  I just want to curl up in bed with my book and forget about everything else.

Sorry for the rant, but I knew you guys would understand.

Another snow day here today.  We got a foot of snow last night, so school is cancelled, and Ken is working from home.  The kids are thrilled - they're outside playing.  Wouldn't it be great to be a kid again, on a snow day?  No responsibilities, no worries, no computer problems.

Ok, I better get back to it.  I just erased my hard disk AGAIN and need to try re-installing my system and my files AGAIN.

Back Soon (I Hope)

I've had very limited internet access all week due to problems with my computer.  After spending many hours at the Apple Store with some great Geniuses at the Genius Bar, we've come to the conclusion that the only option left is to erase the hard drive on my beloved MacBook and re-install the system from scratch (the likely cause is some corrupted files that are now affecting the system).  I'm in the process of backing up all my files which is taking forever because of the problems.  I'm writing this from my ancient e-Mac desktop (11 years and still going!), but I'm a bit limited here.

Just wanted to let you know why I'm not posting or visiting much.  Hopefully, I'll be back in shape before too long!

Emergency Call for Female ME/CFS Patient in Indianapolis

Spent my day messing around with another computer problem - I can't send e-mails now!  Must be a side effect of rebuilding my system yesterday.  So, not much time for a post, but I wanted to pass this along from ME/CFS Worldwide Patient Alliance:

We have a reporter who is doing story for metropolitan newspaper about the ad and the illness. She has already interviewed a nationally-known physician / researcher.

She is doing this for "Woman's Health" month. So she needs a woman and she needs someone local to Indianapolis.

Names will have to be used. She will ask about your personal experience with the illness. Please e-mail me asap if you are a patient and don't mind being interviewed for newspaper: editor@claynews.net

Spread the word, help us get this out.

Deadline looming. All she needs is 15 minutes on the phone.

Tina
MCWPA Team

If you can help, e-mail Tina directly at Tina Tidmore (I can receive e-mails but wouldn't be able to forward to her).  Thanks!

Movie Monday 1/24

Whoops...almost missed my Monday post again!  Very busy day, though I didn't anticipate that.  Jamie just had one mid-term today (his last), so I picked him up at 9:30 am and convinced him to come to the mall with me for both driving experience and a bookstore stop.  He deeply regretted saying "yes"!

Our first (and only) stop was the Apple store where I told him my Genius Bar appointment would only take 15 minutes.  We were there for 3 1/2 hours!!!  However, I am grateful to my assigned Genius, for his persistence in finally solving my bizarre problem.  I've been unable to upload photos to the internet for a few weeks now.  I won't bore you with the details, but he finally figured out there were a couple of corrupted files on my computer.  I'm back in business now!  Only problem is that one of the corrupted files was somewhere within iPhoto (the Mac's photo software), so he was able to save all my original photos (thank goodness), but I lost all editing I'd done to photos.  If you need me for the next six months, I'll be re-fixing red eyes on 10,000 photos!

Anyway, I'm sure you don't want to hear about my computer problems because it's Monday and that means movies!  We fit in a few this week:

• In last week's overflowing summary, I forgot to include the DVD I watched Saturday night while Ken and the boys were snow tubing.  I enjoyed Ladies in Lavender, starring Judi Dench and Maggie Smith as two elderly sisters living in an English seaside village, sometime between the World Wars.  During a storm, a mysterious young man washes ashore next to their house.  They bring him in and end up nursing him back to health.  The twist?  The man doesn't speak English and can't tell them where he's from or what happened to him.  The ladies become very attached to him, though as he heals, it becomes clear he will eventually leave them.  It's a sweet and gentle story, with a few twists, made especially enjoyable by the excellent acting.
• When Ken got home on Friday, we watched Ironman 2 with the boys.  You may recall we saw Ironman last weekend and everyone enjoyed it so much, they wanted to see the sequel right away (one advantage of being so far behind in seeing movies - no waiting for the sequel!)  Ironman 2 was just as entertaining as the first movie, with some good performances by Robert Downey Jr, Gweneth Paltrow, Don Cheadle, Mickey Rourke, and Scarlett Johansson.  Lots of fun!
• Ken and I went out to dinner by ourselves Saturday night (gasp!  can't remember the last time) and left the boys with pizza and Clash of the Titans.  We only saw the last few minutes, but they said it was great.
• Ken and I skipped movies this weekend because we are still making our way through the last season of Saving Grace, starring Holly Hunter.  There are 19 episodes, and we only had one week to watch them (couldn't renew because there's a waiting list), so we've been cramming them in.  Actually, it's overdue now, but we still have it (we're so bad) - just 4 more episodes to go!  It's an excellent TV show about a free spirit Oklahoma City police detective (Hunter) who has a real-life guardian angel named Earl.  It's a mix of police drama and spirituality, and Hunter is amazing in it.

Have you seen any good movies lately?

XMRV in ME/CFS: New Facts and Findings

I'm still a bit down this morning, though maybe better than yesterday.  Unfortunately, I just had to shovel a little again.  My 12-year old son did most of it (the kids had another 2-hour delay this morning), but I wanted to clear a spot to park the cars.  Thank goodness my husband gets back today!!

A couple of days ago, I posted links to a summary of a recent XMRV presentation.  The summary was written by Lannie in the Lymelight, and I think she did an excellent job summarizing a lot of information.  I encourage you to click on the link and read her entire two-part summary.  But, in the middle of the night, as I was struggling to get back to sleep (rough night!), it occurred to me that some of you may not be up to reading and understanding the whole thing, yet I think there is some critical information in there.  So, I thought I'd post a few highlights here for you.  If you're really badly brain-fogged, try just reading the parts in bold!

The following statements are excerpted directly from Lannie's summary on her blog (my own explanations or clarifications are in parentheses):

• As most of you know, the detection of XMRV in blood cells of patients with CFS was first published in Science, October of 2009. At the time XMRV RNA/DNA was detected in 67% of patients with CFS, XMRV protein was detected in greater than 85% stimulated/dividing T and B cells, and an antibody to XMRV Envelope was detected in over 50% of CFS patients. Exactly one year later Mikovits was published again, after improving on original testing techniques to find XMRV infection in 98% of the original cohort.
• (There has been a lot of media attention paid to recent negative XMRV studies.)  Both Whittemore and Mikovits addressed the skeptics – confidently, calmly and articulately. Whittemore put it best when sharing what Mikovits has many times reminded her, “positive papers take forever – months or even years to publish. Negative papers only take a few weeks (to publish).”  (The two presenters described in detail why the negative studies do NOT contradict the positive ones and why contamination is the cause of the positive results).
•  Even with skeptics galore, hope is not lost. Enter a second study, confirming what Lumbardi, Ruscetti, Mikovits, et all proposed in Science, October 2009. This paper, known as the Lo/Alter for Dr. Shyh Ching Lo and Dr. Harvey J. Alter, found MRV, closely related to Polytropic MLV, in 86.5% of CFS patients and 6.8% of healthy controls.
• Again, understanding the nay-sayers to the Science publication, the Lo/Alter team rigorously ruled out contamination. They are the only other study, like that published in Science 2009, that controlled its own samples. If samples are not pristinely maintained (i.e. some might be frozen and thawed REPEATEDLY (updated 1/20/11), "the results will be negative," confirmed Mikovits.
• Another study, unpublished, but shared with the WPI is from the Cheney Clinic in North Carolina. He tested a group of 47 patients, all families, with 81% positive for XMRV. The findings in this group are astounding. The ratio of male to female was identical. This is NOT a woman’s disease! Half of all family members with a CFS case are XMRV+. And then the list goes on and on of parent/child correlations with CFS, XMRV and Autism. (I previously reported on on this family study which I still find astounding).
• (Another family study has been conducted by WPI with similar results).  A quick summary provided by Dr. Mikovits regarding families. She can confirm, there is XMRV in children under the age of 5. To date they have confirmed XMRV in 16 of 17 families with neuroimmune disease amongst multiple members.
• What we know about XMRV is that it integrates into human tissue, demonstrating that it is a human infection. We can confirm it is NOT an endogenous virus to humans. It is in fact a new human retrovirus. However, how it got into humans is still unclear at this time. 
• In discussing tests, another very important take away was that if you test positive you are positive. If you test negative, they are not able to confirm it is absolutely negative. Until there is further understanding of the XMRV lifecycle, they can not confirm this.  
• So where are we seeing XMRV? The disease association seems limitless. It’s showing up in every corner of the neuroimmune world.  One private practice shared it’s associations with Mikovits and the WPI team. This practice started testing its neuroimmune patients and soon found they were treating XMRV positive patients with CFS, Fibromyalgia, Chronic Lyme Disease, Multiple Sclerosis, Parkinson’s Disease, ALS, the list goes on.  XMRV research has concentrated around ME/CFS to date, but larger studies on the presence of XMRV in these other neuroimmune diseases are coming.
• In the presentation they referenced a study where 65 Chronic Lyme Disease patients were tested for XMRV, and 100% came back positive. This was the most reactive group the WPI has seen. That is a higher rate than ME/CFS! 
• Treatment: Three antiretrovirals showed promise amongst 45 compounds and 28 drugs approved for use in humans. Those three include Zidovudine(most know it as AZT), Tenofovir and Raltegravir. The study showed all two-drug-combinations showed efficacy against XMRV in vitro. (NOTE:  The only studies to date have been in vitro studies (i.e. in the lab) - there have been no patient clinical treatment studies for XMRV yet.)
• TREATMENT: Dr. Brewer, an infectious disease specialist who’s spent much of his career in HIV but more recently in ME/CFS and XMRV, has used 2 and 3 drug combination antiretroviral treatments with a CFS/XMRV+ patient sample of 25. The results have been a mixed bag among the patients on ARVs anywhere from 1-9 months. The expected Herxheimer response occurred in some as would be expected. Symptom reduction has been reported, however majority reported feeling “about the same.”   She (Dr. Mikovitz)  has noticed a common theme of patients feeling better around 6 months, followed by a return of all or most symptoms. It sounds very similar to what happens to many on antivirals. She went on to ask herself and her team “how can we add immune modulating supplements to keep up the response beyond 6 months?” That might be the next step we see in antiretroviral (ARV) discussion.

Well, that still turned out longer than I intended, but I believe those are the highlights, for those of you with cognitive difficulties understanding the entire summary.  The bottom line is definitely optimistic for all of us with ME/CFS, as well as other neuroimmune diseases.

This post is a part of XMRV Bloggerama Day, intended to flood the internet with FACTUAL information about XMRV, to counter all of the junk that's been circulating recently.  Join in with your own post!  The information page even includes a template and links you can cut and paste, if you're not up to writing something yourself.

Down But Not Out

Ah, not much energy for writing today - just a quick update.  After two straight weeks of good days (yes, two weeks!), I finally had a down day today.  Both of my kids have had mild cold symptoms this week and say everyone at school is sick, so I'm guessing this is a viral trigger that caused me to crash a bit today.  The beta blockers are still keeping my heart rate in normal range, but I had a sore throat and aches today.  Although OI is a big part of CFS, the immune dysfunction is still at its heart!

I am proud of myself, though, because I recognized the signs and gave up my plans.  Yes, it was a Plan B day.  I set aside the grocery list I'd made until tomorrow (I hope), went back up to bed, set the laptop aside, and picked up my book.  Then I set even the book aside, closed my eyes, and took a nap...then another in the afternoon!

Jamie and I had ourselves a little Lost marathon this afternoon, I got Five Guys burgers and fries for dinner (so bad but so good!!), and I'm heading to bed early.  Hopefully, tomorrow will be better, but even if it's not, Ken finally gets home tomorrow - hurray! - so I'll have some back-up if I need it.  I just hope the snow predicted isn't too bad.  I don't think I could handle more shoveling right now.

Dr. Mikovitz's Recent XMRV Presentation

Fellow CFS and Lyme blogger Lannie in the Lymelight recently posted an excellent summary of Dr. Mikovitz's latest XMRV presentation in California last weekend.  And here is Part 2 of her summary.  She did a great job summarizing the presentation, which includes more updates in XMRV research - check it out!

Movie Tuesday 1/18

Huh?  What?  It's Tuesday already?  Really?  Oops...just one of those weeks!  The kids had Monday off, then had a 2-hour delay this morning because of a snow/freezing rain mix (lovely), so even though it's almost mid-week, I'm still not feeling as if I've even started my week yet!  Morning's my only real productive time, so knocking two hours off this morning really kind of blew the whole day (not that I didn't appreciate the extra sleep!)

We had a wonderful time yesterday.  Some friends came to spend the day - two older teen brothers who both have severe ME/CFS and their mom - and we celebrated two birthdays.  The kids all had a great time together playing games, and their Mom and I had a chance to just relax and talk...and she totally understood that I needed to take a nap after lunch.  Now that's an easy guest!

So, I'm finally getting around to my weekly movie round-up...and we watched quite a few this weekend, as the boys needed lots of downtime after the party:

• Earlier in the week, we all watched Hook, the 1991 return to Neverland film, starring Dustin Hoffman as Captain Hook and Robin Williams as a grown-up Peter Pan who must recapture his childhood in order to save his children.  It's a great movie with a talented cast, and the kids loved it.
• Friday night, in preparation for the big events of the weekend, we stayed in and snuggled up with another good movie, Ironman, starring Robert Downey Jr. and Jeff Bridges, which Jamie had given Craig for his birthday.  The movie was much better than I expected, better than the typical superhero flick, in my opinion, with a unique backstory and plot, with Downey as a spoiled rich guy who owns a hugely profitable weapons manufacturing company that is intricately involved in the Afghanistan war. It had some interesting twists and turns, and we all really enjoyed it.
• Ken and I didn't have time for any movies in this packed-full weekend, but we did squeeze in a couple of episodes of the final season of Saving Grace, one of our favorite TV shows.  It's not only an excellent cop show with a unique supernatural twist, but it's also set in Oklahoma City, where my husband is from.  We missed most of the last season this past summer and had been waiting for the library's DVDs to become available.  Only problem is that now we have 17 episodes to watch, and Ken is out of town this week!  Guess what we'll be doing next weekend?
• After Crag's sleepover, both boys were pretty wiped out, not good for anything but lying on the couch and watching movies, so I picked out a couple of old favorites from the library for them.  They watched The Hunt for Red October while I napped on Sunday.  They knew Sean Connery from the Bond movies, and Jamie had enjoyed another movie based on a Tom Clancy novel, so they enjoyed this one, too.  Well, Jamie enjoyed it; Craig fell asleep in the chair halfway through!
• Sunday night, the three of us ate dinner in front of the TV and watched another Robin Williams' classic, Mrs. Doubtfire.  The boys absolutely loved this funny and touching movie about a divorced Dad who is so desperate to see his kids that he pretends to be an old British nanny.  Definitely a good one.
• After our guests left on Monday, we did the same thing again - chilled out with dinner and a movie in the family room!  We watched The Last Airbender, directed by M. Night Shyamalan.  The boys both really enjoyed the TV show, Avatar, that this movie was based on, so it was fun to see a favorite cartoon brought to life on screen in live action.  It was very well-done, with excellent special effects, and would appeal to anyone who enjoys fantasy, even if you're not familiar with the TV show.

Lots of movies this week, in between bouts of extreme activity!  Have you seen any good movies lately?

A Busy Weekend

Whew, it's been a very busy weekend, and it's still only Saturday!

Ken is out for the evening, driving seven teenage boys to a ski mountain for snow tubing, to celebrate Craig's birthday.  Of course, I never could have managed this trip!  It's about a 90-minute drive each way, plus many hours at the ski place.  I felt bad about Ken having to do this on his own, but that's just the way it is.  I also felt relieved I didn't have to go because it would have knocked me out....it'll probably knock Ken out, and he doesn't have CFS!

My shift begins tomorrow morning when all those teen boys wake up starving (as they always are at this age!).  I've made up 5 batches of pancake batter - hope it will be enough!

Big news yesterday...I went grocery shopping, for the first time since starting the beta blockers a week ago.  Last week, with Ken doing most of the work, my average heart rate during the shopping trip was 109 (105 is supposed to my anaerobic threshold, the limit after which Post-Exertional Malaise will be triggered).  Just walking slowly around the store, my heart rate was constantly above my upper limit, and, as you would expect, I was badly crashed the next day.

In contrast, I went yesterday by myself.  Even with pushing the cart and doing all the lifting myself, my average heart rate was 82, and it never went above 105 while I was in the store!  Interestingly, it spiked the highest after I got home and was carrying the groceries into the house.  At that point, it spiked up to 120's a couple of times, but since I was monitoring it, I was able to stop, sit down, and rest to bring it back down.  And...no crash today!  I felt fine.

In fact, this morning, I went to the first meeting of the newly re-formed Delaware ME/CFS and FM Support Group (it used to meet years ago, before I got sick).  As it turned out, only three of us came, but we all heard from others who are interested.  It's very difficult to plan a meeting for people with CFS...some of us can't manage afternoons and others can't handle mornings.  At least we all understand these limitations!  We're going to try a slightly later time next month, to try to catch both the morning and afternoon people.

I really enjoyed meeting these two women (one of whom I've chatted with extensively online).  I know lots of kids and teens around here with ME/CFS, but these were the first two adults I've met (well, one had FM, not CFS, but still...).  I'm really excited about this group and hope it grows.

So, I think it's time for me to pop in a DVD and relax.  I need to rest up so I'm in good shape for the onslaught of teen boys tomorrow morning!

Hope you're having a good weekend!

13 Years Ago Today...

...our youngest son, Craig, was born!  And now we have two teenagers in the house.  It's hard to believe how fast thirteen years has gone by!

You're probably wondering how I'm doing after my big excursion out into the snow yesterday (I'm sure the suspense is killing you...). 

Well, I definitely did a little too much - big surprise!  I felt a bit crashed both last night and first thing this morning - not horrible, but tired and a bit achy.  But I took my medications after breakfast, including the beta-blockers, and within a couple of hours, I felt well enough to take a shower and...ready for this?...bake a pie for Craig's birthday!  Seriously.  Baking is usually something I can only manage on a really good day, but I managed fine today.  Both of our boys have been obsessed with banana cream pie lately, so I made a homemade black-bottomed banana cream pie - store-bought crust but still...

I'm a little tired now, but afternoons are always the worst time of day for me.  I feel like I'll be able to manage our dinner out tonight for Craig's birthday without a problem.  So far, so good...

Time to go whip the cream (too bad I won't be able to eat much of this dairy-heavy pie!).

Finding a Doctor for ME/CFS

I was getting ready to e-mail this information to an online friend, and I realized I get asked these questions a lot and should just post it on my blog!

If you're looking for a doctor who understands ME/CFS and knows how to treat it, try these three online doctor databases:

• Co-Cure's ME/CFS and Fibromyalgia Good Doctor List is organized by state and includes over a dozen other countries, outside the US, as well.  Anyone can add to this list, so there's no guarantee, but if a doctor appears here, it means that at least one person had a good experience with him or her.
• Chronic Fatigue Treatments website has a searchable database of doctors in the US, UK, Canada, and Australia.  This database is also based on recommendations by patients.
• FM/CFS/ME Resources has a database that includes almost 6000 doctors in over 80 countries.  Just in a quick look, I noticed that many of the doctors listed here are Rheumatologists, so they probably treat FM only.  When I checked my own area, it was almost entirely focused on FM, so be aware of that limitation.  Not all listings are based on patient recommendations.  Some listings specify which conditions the doctor treats.  You can always call the doctor's office and ask.

Finding a doctor who "gets" ME/CFS is so important - it can make a huge difference in your treatment and level of functioning.

Another good approach is to ask other ME/CFS patients in your local area for recommendations.  If you don't know anyone in your local area, try to find a support group or organization.  Here is a list of resources from the CFIDS Association, and when you join the Association, they send you a customized list of support people and groups in your area.

Also, feel free to trade recommendations and suggestions here in the comment section.

Hope this helps!

Snow Day!

You'll never guess what I was just doing!  Give up? 

...Helping to shovel snow!  Seriously!  For the first time in many years.  We got about 6 inches of snow last night, and the kids are off school today (6 inches is a lot for here!).

I know it's still too early to tell for sure if the beta-blockers are going to help me, but it's looking really, really good so far!

For several days now, I've been wearing my heart rate monitor and watching the effect of the beta-blockers, and it's been very encouraging.  Just getting dressed this morning (sans medication), my heart rate jumped up over 100.  After breakfast, I took the beta-blockers along with my other medications, then sat on the couch for a while to allow them time to kick in.  As before, within an hour, my resting heart rate fell from the high 90's to the mid-80's and below.

So, I got dressed in my cold weather gear and went outside to help Ken.  I started with clearing some snow off the cars, watching my heart rate carefully, then progressed to actually shoveling a little snow.  Our neighbor had used his snow-blower on the driveway this morning, so there was only a little bit left to clear, along the edges and near the cars.  I know this sounds odd, but I used to love to shovel snow.  In fact, I used to love any kind of exercise.

All told, my heart rate monitor tells me I was out there for a half hour, with an average heart rate of 92, and a maximum heart rate of 102 - very reasonable!  My limit for preventing post-exertional malaise from setting in (i.e. a crash) is 105.  So, we'll find out tomorrow whether that's true, but I also took a little walk yesterday around a local park - just about 10-15 minutes, but a big deal for me lately - and I felt fine this morning.

If this medication is going to allow me to be more active, that's like a dream come true!  Wish me luck...and I'll keep you posted!

Movie Monday 1/10

We had a lot to do this weekend, putting away all the Christmas stuff, but we did have a chance to watch some movies:

• We watched Every Which Way But Loose, that Clint Eastwood classic, with the kids.  There's an awful lot of fighting in it for my taste, but we all enjoyed it.  The kids loved Clyde, Eastwood's orangutan sidekick, and we all laughed quite a bit.  Just lots of fun.
• Craig went to a dance Saturday night, so Jamie, Ken, and I watched The Bounty Hunter with Jennifer Aniston.  It was a fairly typical romantic comedy with a new twist:  the ex-husband is a bounty hunter trying to pick up his ex-wife for skipping bail.  Again, nothing too earth-shattering, but amusing and fun.

Have you seen any good movies lately?

(P.S. If you're interested in what we're reading this week, check out the Monday post on my book blog.)

Toni Bernhard to Appear on NPR Monday!

Just wanted to give you plenty of warning, so you won't miss this...

Our own Toni Bernhard, author of the wonderful book How To Be Sick, was interviewed on NPR.  Her interview will be broadcast on Monday, January 10's Morning Edition.  She's not sure exactly when during the show it will be broadcast, but if you miss it, you can listen to it on the Morning Edition website after the show. 

You can read my review of How To Be Sick at my book blog.  It's a wonderfully comforting, helpful book for anyone dealing with chronic illness...or any other difficult aspect of life, for that matter.

Congratulations, Toni!

Now it's time for me to listen to my own favorite NPR show, Wait, Wait Don't Tell Me (hilarious!).

Dr. Rowe's OI Article

Hurray!  A friend just e-mailed me a link to Dr. Rowe's OI article, that I mentioned in all my previous posts on OI.  This link is a downloadable pdf file, and the article is even more up-to-date than the one I have that I've been e-mailing.

I strongly urge you to download this article and read the whole thing.  It's written in easy-to-understand layman's terms and explains everything you need to know about OI - what it is, how to diagnose it, treatments, salt intake, everything!

Many of the symptoms we associate with CFS actually come from OI (CFS causes autonomic nervous system dysfunction which causes OI), so treating it can really help, whether you stick to just dietary changes or want to try various medications.  Share this article with your doctor.  Good luck!

P.S. Thanks, Denise!!!

Trying a New OI Treatment

(NOTE: If you don't know what I mean by OI or POTS or NMH or think OI doesn't apply to you, take a look at my previous post on Orthostatic Intolerance in CFS - OI is behind many symptoms of CFS and is treatable).

So, I've mentioned several times here this week that I've been stuck on the couch, with my heart pounding as if I were running all week.  I got a heart rate monitor for Christmas (a topic for another post), so besides feeling like my heart was going to burst out of my chest, I could see that my pulse rate just sitting up on the couch was around 100-105.  Standing up and doing something simple, like putting in a load of laundry, shot it up to 120.  I got out of the shower this morning and strapped the monitor back on, and my heart rate was 135!  It was like I was running when I was barely moving.

Although POTS this severe is not typical for me, this week got me thinking about my OI.  I drink lots of fluids and ingest huge amounts of salt (lots of V-8 this week and even mugs of chicken bouillon!), but it's been years since I've tried medication for OI.  I briefly tried Florinef years ago, which has worked miracles for my sons, but it rarely works for adults, and I didn't see any effect.  I've thought of trying SSRIs (a type of antidepressant sometimes used to treat OI), but that would require changing my sleep medications, and I can't do that.  My sleep dysfunction is the one aspect of CFS I have effectively treated, and I don't want to mess with my sleep!

That leaves beta-blockers.  I'd read about using beta-blockers for treating OI, and a friend was telling me on the phone this week that it has worked for her 15-year old daughter (whose POTS was so severe, she was fainting multiple times each day).  We share the same doctor, so I went to see her today, and brought along my hand-outs!  I always bring hand-outs to my doctor's visits.  She read the information I brought and said, "This is an easy one to say yes to." (as opposed to most of the treatments I ask her about!)

So, are you ready for this?  I picked up the medication and took my first dose in the car.  Within 1 hour, my heart rate had dropped by 25 points!  It was in the 80's for the first time all week, and sitting up at my kitchen counter, it settled down to about 75.  Unbelievable!  I was stunned.

I should emphasize that, of course, I need to give this new treatment more time before I draw any conclusions - there could be side effects I can't tolerate or maybe it won't affect how I feel very much.  But just from this one-day trial, I am very excited!

Here's what Dr. Rowe, CFS/OI expert at Johns-Hopkins, says about using beta-blockers to treat OI in CFS patients:

Beta-blocker medication " blocks the effects of adrenaline (epinephrine), and acts both to decrease the heart rate and to prevent the forceful heart contractions that may help trigger NMH."

So far, so good!  I am really hoping this works for me so that I can try to gradually increase my activity level, take short walks, etc.  My life has been pretty restricted lately.  I've been trying to get to the grocery store since Tuesday!  My husband finally went with me today and did all the pushing, lifting, etc. because we had run out of food.  Don't worry - I'll keep you posted!

P.S. Dr. Rowe's article on OI, referenced in my earlier OI post, is no longer available at the link I posted.  An updated version is available here for downloading.  I highly recommend you read this article and share it with your doctor, whether you are interested in trying medication to treat OI or would prefer to stick with non-pharmacological approaches (he provides details on all of this and more).  If you prefer, you can listen to Dr. Rowe's presentation on OI or view the slideshow.

Interesting Resources

Well, my day started out the same as yesterday - I woke feeling fine, got Craig off to school, and my pulse went through the roof again mid-morning!  I got out of the shower and strapped on my new heartrate monitor, and my pulse rate was 145!!  Those showers are killers.  So, it's another Plan B day.  Today I actually got so far as to plan meals for the week and make a grocery list but had to once again postpone plans to shop.  Fortunately, there are still enough Trader Joe's ingredients for two more dinners!

Just wanted to pass along a few resources that have come to my attention this week:

• CureTogether is a website that surveys patients about symptoms and treatments for a variety of conditions, including ME/CFS.  Click on the tabs to see lists of symptoms, causes, and treatments reported by patients, a graph showing treatment effectiveness (not much on the high effectiveness side, of course), or to take their survey to add your own information to the data, which I did yesterday while stuck on the couch.  It's interesting, though I think they're using the term "treatment" loosely (it includes things like "rest more" and "avoid people who don't believe in CFS" as well as actual treatments).  Take a look for yourself.
• NIH is starting a Listserve for ME/CFS, which they'll use to communicate new information.  Here is a blog post from Phoenix Rising that explains how to sign up (it's quick and easy).  Besides the benefit of getting the information, signing up will also help to show NIH how many people care about ME/CFS because they closely track participation.  I signed up.
• For those battling Lyme disease as well as CFS, I read an excellent summary of the recent ILADS Conference on BetterHealthGuy.com.  Lots of interesting - though sometimes conflicting - information here on treatment approaches.

So, that's it for today.  I'm going to attempt a quick trip to the corner drugstore to pick up a prescription and more milk.  Not quite what I had in mind for today, but that's Plan B!